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    <title>Shake, Rattle and Roll</title>
    
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    <id>tag:typepad.com,2003:weblog-522333</id>
    <updated>2009-11-03T08:15:21-07:00</updated>
    <subtitle>An insider's view of Parkinson's Disease and DBS</subtitle>
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        <title>Statins May Provide Double Protection</title>
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        <id>tag:typepad.com,2003:post-6a00d83451c95969e20120a64ed7d2970b</id>
        <published>2009-11-03T08:15:21-07:00</published>
        <updated>2009-11-03T08:27:19-07:00</updated>
        <summary>I fought my doctor when she prescribed statins to lower my dangerously high cholesterol. Instead, I lost 10 pounds (actually 10.4 pounds but who’s counting), ate a more healthy diet and bumped up my exercise regime. My cholesterol level didn’t...</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: General" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Pravachol" />
        <category scheme="http://sixapart.com/ns/types#tag" term="pravastatin" />
        <category scheme="http://sixapart.com/ns/types#tag" term="simvastatin" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Zocor" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p><em>I fought my doctor when she prescribed statins to lower my dangerously high cholesterol. Instead, I lost 10 pounds (actually 10.4 pounds but who’s counting), ate a more healthy diet and bumped up my exercise regime. My cholesterol level didn’t budge until I began simvastatin (Zocor) in mid-August of 2009.</em> 
<p><em>As it turns out, statins may be protecting my heart as well as my Parkinson’s progression as indicated in the following article from MedPage Today:</em> 
<h3><a href="http://www.medpagetoday.com/Neurology/ParkinsonsDisease/16754?userid=116512&amp;impressionId=1257229214086&amp;utm_source=mSpoke&amp;utm_medium=email&amp;utm_campaign=DailyHeadlines&amp;utm_content=Group1">Statins Protect Against Parkinson's Progression in Mice</a></h3>
<p>By Crystal Phend, Senior Staff Writer, MedPage Today<br />Published: November 02, 2009<br />Reviewed by <a href="http://www.medpagetoday.com/reviewer.cfm?reviewerid=512">Dori F. Zaleznik, MD</a>; Associate Clinical Professor of Medicine, Harvard Medical School, Boston and<br />Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner 
<p>Statins may slow the progression of Parkinson's disease by preventing the cascade of inflammatory damage to neurons that eventually leads to motor dysfunction, according to a mouse model study. 
<p>Mice given the equivalent of standard simvastatin (Zocor) or pravastatin (Pravachol) doses lost fewer dopaminergic neurons and neurotransmitters, Kalipada Pahan, PhD, of Rush University Medical Center in Chicago, and colleagues found. 
<p>The mice also had significant improvements in all measures of motor function, they wrote in the Oct. 28 issue of the <em>Journal of Neuroscience</em>. 
<p>Although safety would likely not be a concern for translating these results into the clinic, Pahan cautioned against prescribing statins without a cardiovascular indication in Parkinson's disease until there are clinical data to support it. 
<p>His group plans a Phase II trial in Parkinson's patients. 
<p>Observational data from <a href="http://www.medpagetoday.com/Neurology/ParkinsonsDisease/4742">case-control</a> and large <a href="http://www.medpagetoday.com/Neurology/AlzheimersDisease/6202">cohort</a> studies have suggested that taking a statin nearly halves the risk of incident Parkinson's disease. 
<p>"But that did not suggest whether statins could actually reverse the existing disease," Pahan noted. 
<p>So his group tested this hypothesis in mice given injections of a neurotoxin that induces parkinsonism. 
<p>First, though, they ran a few tests in the microglial cells that are known to play an important role in the pathogenesis of Parkinson's and other neurodegenerative disorders. 
<p>They found that one step in microglial activation was the activation of a proinflammatory protein, p21<sup>ras</sup>, which appeared to be necessary for the neurotoxic chemical to produce Parkinson's. 
<p>But simvastatin exposure inhibited the activation of p21<sup>ras</sup> (<em>P</em>=0.0006 to <em>P</em>=0.0002) in the microglial cells. The statin also blocked the neurotoxin from activating (<em>P</em>&lt;0.0001) nuclear factor-kappaB, "a transcription factor required for the transcription of most of the proinflammatory molecules." 
<p>Mice given the parkinsonism-inducing neurotoxin showed the same P21<sup>ras</sup> activation in the cells of the ventral midbrain, while those given only saline injections showed little or no activation. 
<p>Even when given simvastatin or pravastatin after the neurodegenerative process had started, mice with simulated Parkinson's had significant reductions in midbrain expression of proinflammatory molecules, including inductible nitric oxide synthase (<em>P</em>&lt;0.0001), p21<sup>ras</sup>, and nuclear factor-kappaB. 
<p>Both statins also suppressed activation of glial cells in the ventral midbrain, although pravastatin appeared to be somewhat less effective. 
<p>Whereas the neurotoxin dramatically reduced the number and concentration of dopaminergic neurons and density of dopaminergic fibers compared with controls, both simvastatin and pravastatin significantly prevented these types of degeneration (all <em>P</em>&lt;0.001). 
<p>Again, simvastatin appeared to hold an advantage over pravastatin. 
<p>Striatal dopamine levels were reduced 78% in the Parkinson's model mice compared with controls, but statin treatment lowered the loss to only 21% to 26%. 
<p>Not only were neurons and neurotransmitters protected, but motor function was preserved as well. 
<p>Mice given the statins moved around more often, faster, and with less resting (all measures <em>P</em>&lt;0.05 to <em>P</em>&lt;0.001) than the nonstatin mice. 
<p>Even when statins weren't started until two days after mice were given the neurotoxin and the disease process began, the drugs still inhibited the demise of dopaminergic neurons and loss of neurotransmitters, "suggesting that statins are capable of slowing down the progression of neuronal loss in the [Parkinson's disease] mouse model," the researchers wrote. 
<p>Currently the most effective option for treating Parkinson's disease clinically -- levodopa plus carbidopa (Parcopa or Sinemet) -- helps only 30% to 40% of patients, Pashan noted. 
<p>If clinical studies of statins pan out for Parkinson's disease, "it would be a big advancement," he said. "We don't need to use a higher dose." 
<p>Doses many times higher than the 80 mg doses typically used for cholesterol lowering have actually been shown to be neurotoxic, he cautioned. 
<p>The reason for the difference between the statins might have been that simvastatin penetrates the blood-brain barrier better, whereas pravastatin only did so after parkinsonian neurodamage started in the mice, the researchers suggested. 
<p>The study was supported by National Institutes of Health grants and the Michael J. Fox Foundation for Parkinson's Research. The researchers provided no information on conflicts of interest. 
<p>Primary source: <em>Journal of Neuroscience</em><br />Source reference:<br /><a href="http://www.jneurosci.org/cgi/content/abstract/29/43/13543">Ghosh A, et al "Simvastatin inhibits the activation of p21ras and prevents the loss of dopaminergic neurons in a mouse model of Parkinson's disease" <em>J Neurosci</em> 2009; 29: 13543–56.</a> 
<p><strong /> <strong>Action Points</strong>   
<p>· Caution interested patients that statins have not been clinically tested or FDA approved for prevention of Parkinson's disease onset or progression. 
<p>· Caution patients that these results were reported in mice who were given a neurotoxin to stimulate parkinsonism, and the treatment may not have the same effect on humans with the disease.</p>
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    <entry>
        <title>Say Yes to Your Family and Friends' Gifts of Participation</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/esZjJpjHr6k/say-yes-to-your-family-and-friends-gift-of-participation.html" />
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        <id>tag:typepad.com,2003:post-6a00d83451c95969e20120a633f980970b</id>
        <published>2009-10-29T10:10:11-06:00</published>
        <updated>2009-10-29T10:28:48-06:00</updated>
        <summary>Your family and friends WITHOUT PARKINSON’S are always so eager to help. My husband, Tom, is no exception. In between snow-shoveling and scrutinizing the list of snow closures on TV yesterday, I caught Tom off guard and asked him if...</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Clinical Research Learning Institute" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="Clinical Research Learning Institute" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Associated Risk Study" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease Foundation" />
        <category scheme="http://sixapart.com/ns/types#tag" term="PARS" />
        <category scheme="http://sixapart.com/ns/types#tag" term="smell test" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p><font size="4">Your family and friends WITHOUT PARKINSON’S are always so eager to help. My husband, Tom, is no exception. In between snow-shoveling and scrutinizing the list of snow closures on TV yesterday, I caught Tom off guard and asked him if he wanted to participate in a clinical trial related to Parkinson’s. Tom readily agreed.</font> 
<p><font size="4">Getting started in the process was so easy that I didn’t know why we hadn’t done it sooner. I’m embarrassed to admit that getting involved in the clinical research process hadn’t even crossed my Parkinson’s radar until being a participant in the Parkinson’s Disease Foundation’s <em>Clinical Research Learning Institute</em> from October 14-17, 2009 in Florham Park, New Jersey.</font> 
<p><font size="4">At the Institute I learned that:</font> 
<p><font size="4">· It is estimated that less than 1 percent of people with PD participate in clinical trials. <em /></font>
<p><font size="4">· If more people with PD were study volunteers, more studies would be completed on time. </font>
<p><font size="4">· 71 percent of people with PD are unaware of available clinical studies in their area. <em>(PDtrials Harris Interactive Poll, 2005)</em></font> 
<p><strong><font size="4" /></strong>
<p><font size="4">· Close to 75 percent of physicians talk about clinical trials with 10 percent or fewer of their patients with PD. <em>(PDtrials Harris Interactive Poll, 2005)<strong /></em></font> 
<p><strong><em><font size="4" /></em></strong>
<p><font size="4">· The primary motivations of people with PD for participating in a clinical study is a doctor’s recommendation (90 percent), knowing how the research would help the community (84 percent) and access to new medications (80 percent).<em> (GfK Roper Public Affairs and Media Survey, 2008)</em><strong /></font> 
<p><font size="4">Now back to the study in question, which is looking for participants WITHOUT PARKINSON’S, like your family and friends who are always so eager to help.</font> 
<p><font size="4">The Institute for Neurodegenerative Disorders and the University of Pennsylvania are conducting the groundbreaking Parkinson's Associated Risk Study (PARS).</font> 
<p><font size="4">Your family and friends may be eligible to participate in this study if: </font>
<ul>
<li><font size="4">They are at least 60 years old and <strong>with or without</strong> a relative affected by Parkinson Disease </font>
<li><font size="4">They do not currently have a diagnosis of Parkinson Disease, Alzheimer’s Disease, or other related neurological disorder</font> 
<li><font size="4">Have no known reason for an abnormal sense of smell (e.g., sinusitis, nasal trauma or sinus surgery)</font> </li>
</li></li></ul>
<p><font size="4">One of the primary goals of the PARS is to better understand the risk factors for Parkinson Disease so that they may be identified earlier in its course and ultimately be prevented before the onset of symptoms.</font> 
<p><font size="4">The initial phase of the study is performed by mail and involves a scratch and sniff smell test in addition to questionnaires. Most people find the testing an interesting experience.</font> 
<p><font size="4">The PARS Team is currently looking for:</font> 
<p><font size="4">Individuals with a first-degree relative (sister, brother, mother, father, or children) diagnosed with Parkinson’s Disease</font> 
<p><font size="4">AS WELL AS</font> 
<p><font size="4">Individuals that have no relatives with Parkinson’s Disease </font>
<p><font size="4">This study is primarily conducted by mail and therefore your family and friends do not need to live in the Connecticut or Philadelphia area to participate.</font> 
<p><font size="4">If you have family or friends who may be willing to participate in the study, please encourage them to complete the following eligibility form online at:</font> 
<p><strong><a href="https://www.parsinfosource.com/Parsq1/"><font size="4">https://www.parsinfosource.com/Parsq1/</font></a></strong> 
<p><font size="4">Or they may also find this form and additional information about the study through the PARS website at:</font> 
<p><strong><span style="text-decoration: underline"><a href="http://www.parsinfosource.com"><span style="text-decoration: underline"><font size="4">www.parsinfosource.com</font></span></a></span></strong> 
<p><font size="4">or by contacting the PARS Study Team directly at:</font> 
<p><font size="4"><strong>203-401-4300 or toll-free at </strong><strong>877-401-4300</strong> to have an eligibility form sent to them.</font> 
<p><font size="4">Individuals who are eligible and agree to participate will receive information regarding participation by mail. They may be asked to complete mail-in questionnaires each year or to be evaluated by a neurologist near their home. Some individuals may be asked to undergo more extensive testing. The level of their participation is optional. </font>
<p><font size="4">Ask your family and friends for their gift of participation in this study. <strong>It is the one way they can contribute to finding a cure for Parkinson’s Disease.</strong></font> 
<p><font size="4">For further information, contact the PARS Study Team at:<br />Telephone: 203-401-4300<br />Toll-Free: 877-401-4300<br />Email: </font><a href="mailto:parsinfo@indd.org"><font size="4">PARSinfo@indd.org</font></a><br /><font size="4">Website: </font><a href="http://www.parsinfosource.com"><font size="4"><a href="http://www.parsinfosource.com">www.parsinfosource.com</a></font></a></p>
<p><strong>Related Article:</strong>  <a href="http://katekelsall.typepad.com/my_weblog/2008/10/sniffing-out-parkinsons-the-parkinson-associated-risk-study-pars.html">Sniffing Out Parkinson's</a></p>
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<p><span class="hidden" /> <a href="http://www.typepad.com/site/blogs/6a00d83451c95969e200d8341d4bac53ef/post/6a00d83451c95969e20120a633f980970b/#" id="edit-permalink"><strong><font color="#ffffff" style="BACKGROUND-COLOR: #9cc4d9">Edit</font></strong></a> <a class="hidden" href="http://www.typepad.com/site/blogs/6a00d83451c95969e200d8341d4bac53ef/post/6a00d83451c95969e20120a633f980970b/#" id="save-permalink"><strong><font color="#ffffff" style="BACKGROUND-COLOR: #9cc4d9">Done</font></strong></a> </p>
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    <feedburner:origLink>http://katekelsall.typepad.com/my_weblog/2009/10/say-yes-to-your-family-and-friends-gift-of-participation.html</feedburner:origLink></entry>
    <entry>
        <title>When the New 60 Feels Like 6</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/dVz3UCRM7wE/when-the-new-60-feels-like-6.html" />
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        <id>tag:typepad.com,2003:post-6a00d83451c95969e20120a61f0690970b</id>
        <published>2009-10-25T20:29:23-06:00</published>
        <updated>2009-10-29T10:49:00-06:00</updated>
        <summary>I celebrated my 60th birthday this month. The average age of onset of Parkinson’s Disease is also 60. I never wanted to be average and with the diagnosis at the age of 46, I figure I’m better than average. Rushing...</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: Dance" />
        <category scheme="http://www.sixapart.com/ns/types#category" term="Topic-Other: Kansas City Tales" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="Dancing" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Rockyettes" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p><font color="#800000" size="4">I celebrated my 60<sup>th</sup> birthday this month. The average age of onset of Parkinson’s Disease is also 60. I never wanted to be average and with the diagnosis at the age of 46, I figure I’m better than average.</font> 
<p><font color="#800000" size="4">Rushing through childhood, I was always in a hurry to grow up. With Parkinson’s, I’m no longer rushing – it’s more like plodding. Yet, remarkably, I’m still dancing.</font> 
<p><font color="#800000" size="4">In celebration of my birthday, the Rockyettes danced at my party, and I joyfully danced 5 of the 15 dances with them. Ann Kennedy, the director of the Rockyettes, carefully chose the music that represented different aspects of my life, songs such as:</font> 
<p><font size="4"><font color="#800000"><em>Kansas City</em> – where I grew up and lived for my first 17 years</font></font> 
<p><font size="4"><font color="#800000"><em>MacNamara’s Band</em> – representing my Irish heritage</font></font> 
<p><font size="4"><font color="#800000"><em>Welcome to the Sixties</em> from <em>Hairspray</em> – because I was a teenager during the sixties and also just turned 60</font></font> 
<p> <font size="4"><font color="#800000"><em>California</em><em> Girls</em> – for the time we lived in California</font></font> 
<p><font size="4"><font color="#800000"><em>Sing, Sing, Sing</em> – representing my love of big band/swing music</font></font> 
<p><font color="#800000" size="4">And a surprise dance of <em>Shake, Rattle and Roll,</em> which is the name of my blog</font> 
<p><font color="#800000" size="4">It was the best birthday any 6 or 60 year old could ever have.</font> 
<p><a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a676618f970c-pi"><img alt="clip_image001" border="0" height="264" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a6766194970c-pi" style="BORDER-TOP-WIDTH: 0px; BORDER-LEFT-WIDTH: 0px; BORDER-BOTTOM-WIDTH: 0px; BORDER-RIGHT-WIDTH: 0px" width="628" /></a> 
<p><strong />
<p><strong>*************************************************************************************************************************</strong> 
<p><strong><font size="4">My classmtes from the class of 1967 from Hogan High School in Kansas City, MO</font></strong> 
<p><strong><font size="4">Looking Pretty Darn Good at 60</font></strong> 
<p><a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a61f068a970b-pi"><img alt="clip_image003" border="0" height="355" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a61f068d970b-pi" style="BORDER-TOP-WIDTH: 0px; BORDER-LEFT-WIDTH: 0px; BORDER-BOTTOM-WIDTH: 0px; WIDTH: 466px; HEIGHT: 403px; BORDER-RIGHT-WIDTH: 0px" width="399" /></a> 
<p>Front L to R: Kate Kelsall, Debbie Creasey; Back L to R: Kerry Neas, Mary Hobson. All currently are living in the Denver metro area.</p>
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    <entry>
        <title>Three Parkinson's Movers and Shakers</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/BdYRu5R_jX8/three-parkinsons-movers-and-shakers.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/10/three-parkinsons-movers-and-shakers.html" thr:count="3" thr:updated="2009-10-23T03:05:09-06:00" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e20120a66319d4970c</id>
        <published>2009-10-21T06:35:11-06:00</published>
        <updated>2009-10-24T06:29:02-06:00</updated>
        <summary>By Valerie Graham Parkinson’s activists Valerie Graham, Diane Cook and Kate Kelsall, all living in metro Denver, Colorado, recently returned from the second annual Clinical Research Learning Institute (CRLI or the Institute) hosted by the venerable Parkinson's Disease Foundation (PDF)...</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Clinical Research Learning Institute" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="clinical research" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Clinical Research Learning Institute" />
        <category scheme="http://sixapart.com/ns/types#tag" term="clinical trials" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease Foundation" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><h3>By Valerie Graham</h3>
<p><font size="4">Parkinson’s activists Valerie Graham, Diane Cook and Kate Kelsall, all living in metro Denver, Colorado, recently returned from the second annual Clinical Research Learning Institute (CRLI or the Institute) hosted by the venerable <a href="http://www.pdf.org/">Parkinson's Disease Foundation (PDF)</a> which was held October 15 through October 17 at the Hamilton Park Hotel and Conference Center in Florham Park, New Jersey. They were among the 38 people with Parkinson's Disease (PD) selected from a pool of approximately 70 highly accomplished and qualified applicants from across the country to participate in this year's Institute.</font> 
<p><font size="4">The Institute consisted of three very intense days and evenings filled with seminars and lectures presented by a faculty of highly respected physicians, researchers, scientists, other medical professionals and business people intimately involved in the clinical research process, not to mention many spirited and enlightening discussions which ensued among the faculty and participants. </font>
<p><font size="4">The purpose of the CRLI was to provide those selected to participate in the CLRI with the necessary knowledge and skills to become effective advocates with respect to the clinical trial process, explaining how the process works and encouraging members of the PD community to participate more fully in clinical trials, thereby accelerating the discovery and development of more effective therapies and treatments for Parkinson's.</font> 
<p><font size="4">As you might imagine, fresh from graduating from this year's Institute, the fearless threesome are brimming over with enthusiasm and knowledge with respect to the clinical trial process which they gained from attendance at the Institute and are fully committed to disseminating what we have learned to the PD community and to the public at large.</font> 
<p><font size="4">Statistics show that while the number of those being diagnosed with PD is growing exponentially, the number of people who are participating in clinical research trials is shrinking in even greater numbers. Patients must be made to realize that their increasing participation in the clinical research process is absolutely essential if improved treatments and, more importantly, a cure are to be discovered sooner as opposed to later!</font> 
<p><font size="4">Being among the most recent graduates of the CRLI, they are well-equipped to be bearers of this important message and would appreciate any opportunity to share the message with others. Among the many tools provided to us by the PDF for the purpose of spreading the message, they have a PowerPoint presentation about the clinical trial process as well as many useful written materials available for distribution. They believe that this presentation would be particularly appropriate for the many PD support groups.</font> 
<p><font size="4">They are ready to do some Movin’ and Shakin’ to spread the word!</font> 
<p><font size="4">For more information on clinical trials for PD, contact:</font> 
<p><font size="4">Valerie Graham at </font><a href="mailto:vgraham999@comcast.net"><font size="4">vgraham999@comcast.net</font></a> 
<p><font size="4">Diane Cook at: </font><a href="mailto:dcook@cookcompany.com"><font size="4">dcook@cookcompany.com</font></a><font size="4"> and/or</font> 
<p><font size="4">Kate Kelsall at </font><a href="mailto:katedenver@aol.cm"><font size="4">katedenver@aol.cm</font></a></p>
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<p><strong>Related Story:</strong></p>
<p><strong>PDF Press Releases and Statements -- 40 People with Parkinson’s Graduate from PDF's Research Advocacy Training Program at:</strong> </p>
<p><a href="http://www.pdf.org/en/media_pr/release/pr_1256158327">http://www.pdf.org/en/media_pr/release/pr_1256158327</a></p></p></p></p></p></p></p></p></p></p></p><xhtml:img xmlns:xhtml="http://www.w3.org/1999/xhtml" src="http://feeds.feedburner.com/~r/ShakeRattleAndRoll/~4/BdYRu5R_jX8" height="1" width="1" /></div></content>


    <feedburner:origLink>http://katekelsall.typepad.com/my_weblog/2009/10/three-parkinsons-movers-and-shakers.html</feedburner:origLink></entry>
    <entry>
        <title>Device-Envy</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/ScPwn-p_g8k/device-envy.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/09/device-envy.html" thr:count="1" thr:updated="2009-10-04T17:52:46-06:00" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e20120a5ab1842970b</id>
        <published>2009-09-29T19:23:47-06:00</published>
        <updated>2009-09-29T19:29:26-06:00</updated>
        <summary>I’m jealous. When one of the members of the DBS support group showed up with her newly implanted Medtronic’s Activa® PC Neurostimulator along with her new Activa® Patient Programmer, I had a bad case of device-envy. I wanted one and...</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: Deep Brain Stimulation/Programming" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="DBS" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Deep Brain Stiumulation" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Medtronic " />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p><font color="#0000ff"><em>I’m jealous. When one of the members of the DBS support group showed up with her newly implanted Medtronic’s Activa<sup>®</sup> PC Neurostimulator along with her new Activa<sup>®</sup> Patient Programmer, I had a bad case of device-envy. I wanted one and wanted it now. However, since I had a DBS battery replacement about a year ago, it looked unlikely that I will need another battery replacement for 2-5 years.</em></font></p>
<p><em><font color="#0000ff">I salivated when I saw her look at the device which revealed her exact settings. Instead, with my Kinetra model, l must try to recall with my fuzzy Parkinson’s brain which range was set by the programmer for each side of my brain and how many clicks up or down I have already performed.</font></em></p>
<p><font color="#0000ff"><em>The object of my desire is Medtronic’s Activa PC Neurostimulator.</em></font></p>
<p><a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a5ab1822970b-pi"><img alt="clip_image001" border="0" height="182" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a5ab1830970b-pi" style="BORDER-TOP-WIDTH: 0px; BORDER-LEFT-WIDTH: 0px; BORDER-BOTTOM-WIDTH: 0px; BORDER-RIGHT-WIDTH: 0px" width="150" /></a>(Not drawn to scale)</p>
<p><em>Activa<sup>®</sup> PC</em> is the first of Medtronic’s next generation, non-rechargeable Deep Brain Stimulation (DBS) neurostimulators. 
<p>Medtronic’s promotional literature indicates that it is ideal for people who prefer their device to be ‘fitted and forgotten’ – that’s me! 
<h4>Key Features</h4>
<p>The <em>Activa PC</em> neurostimulator contains an electronic circuit-board and is powered by a <strong>non-rechargeable</strong>, long-life battery.  
<h4>Size</h4>
<p>The <em>Activa PC</em> neurostimulator is discreet and unobtrusive, with a similar size and shape to a cardiac pacemaker.  This is a full 24% smaller than Medtronic’s first-generation <em>Kinetra</em><sup>®</sup> device, meaning that many patients find the <em>Activa PC</em> device more comfortable. 
<p>The <em>Activa Patient Programmer</em> which accompanies the two new devices allows patients to work closely with their doctor to choose the level of DBS therapy that is right for them.  This provides optimal symptom control for many different situations, by allowing up to four pre-programmed stimulation patterns or groups. 
<p><font color="#0000ff"><em>Once my old DBS battery goes caput, I hopefully will get it replaced with an Activa PC device with the Activa Patient Programmer. If I had to choose today on the “four pre-programmed stimulation patterns or groups,” I would choose the following:</em></font> 
<p><font color="#0000ff"><em>· One program for dancing</em></font> 
<p><font color="#0000ff"><em>· One program for accordion playing </em></font>
<p><font color="#0000ff"><em>· One program for walking and hiking</em></font> 
<p><font color="#0000ff"><em>· One program for speech</em></font> 
<p>Other fine features include: 
<ul>
<li><strong>Simple Status Check</strong> – The <em>Activa Patient Programmer</em> allows patients to easily check the status of the device with the icon-based LCD screen. </li>
</ul>
<ul>
<li><strong>Two User Modes</strong> –The <em>Activa Patient Programmer</em> can be switched between <em>Simple</em> and <em>Advanced</em> Modes. </li>
</ul>
<ul>
<li><em>Simple Mode</em> allows patients to check battery- and therapy-status at the touch of a button. </li>
</ul>
<ul>
<li><em>Advanced Mode</em> enables patients to make more detailed adjustments, allowing them to switch from four program settings for optimal therapy control.  For example, in <em>Advanced Mode,</em> patients switch from one active physician-programmed therapy pattern to another, depending on their current, specific needs. </li>
</ul>
<p><strong>Activa<sup>®</sup> RC Neurostimulator</strong> 
<p><a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a601e28f970c-pi"><img alt="clip_image003" border="0" height="200" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a601e296970c-pi" style="BORDER-TOP-WIDTH: 0px; BORDER-LEFT-WIDTH: 0px; BORDER-BOTTOM-WIDTH: 0px; BORDER-RIGHT-WIDTH: 0px" width="176" /></a>(Not drawn to scale) 
<p><strong>The world´s first and smallest rechargeable DBS device, the Activa RC has an extra-long battery life of nine years.</strong> 
<h4>Overview</h4>
<p>The <em>Activa<sup>®</sup> </em><strong>R</strong><em>e-</em><strong>C</strong><em>hargeable (RC)</em> neurostimulator is one of the next-generation Activa family of products for patients requiring <em>Medtronic</em> <em>Deep Brain Stimulation (DBS)</em> therapy.  
<p>The <em>Activa RC</em> neurostimulator has two main benefits.  Not only is it the world’s first rechargeable DBS neurostimulator, but it is also the <strong>smallest implantable DBS device yet.</strong> 
<h4>Key Features</h4>
<p>The <em>Activa RC</em> neurostimulator contains an electronic circuit-board and is powered by a <strong>rechargeable</strong> battery that can last for up to nine years.  This means that most <em>Medtronic DBS</em> patients with an <em>Activa RC</em> device will be free from replacement surgeries for nearly a decade.  The patient’s only task is to choose between daily or weekly battery recharge options. 
<h4>Size</h4>
<p>The <em>Activa RC</em> neurostimulator is discreet and unobtrusive, with a similar size and shape to a cardiac pacemaker.  It has a volume of just 22 cubic centimeters, is only 9 millimeters thick, and weighs a mere 45 grams.  This small size improves patient comfort and is an ideal option for children, women, or patients with low body weight. 
<h3>Activa<sup>®</sup> Patient Programmer (used for both new models: Activa PC and Activa RC)</h3>
<p><a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a601e299970c-pi"><img alt="clip_image004" border="0" height="218" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a5ab183c970b-pi" style="BORDER-TOP-WIDTH: 0px; BORDER-LEFT-WIDTH: 0px; BORDER-BOTTOM-WIDTH: 0px; BORDER-RIGHT-WIDTH: 0px" width="150" /></a>(Not drawn to scale) 
<p>Up to four individualized settings can be pre-programmed by the physician, enabling optimal symptom control for the patient. 
<h4>Overview</h4>
<p>The new <em>Activa<sup>®</sup> Patient Programmer</em> is a highly intuitive controller that provides smart, targeted symptom management alongside Medtronic’s next-generation Deep Brain Stimulation (DBS) neurostimulators: the <em>Activa RC</em> and <em>Activa PC family</em>. 
<ul>
<li><em>Simple Mode</em> allows patients to check battery- and therapy-status at the touch of a button. </li>
</ul>
<ul>
<li><em>Advanced Mode</em> enables patients to make more detailed adjustments, allowing them to switch from four program settings for optimal therapy control.  For example, in <em>Advanced Mode,</em> patients switch from one active physician-programmed therapy pattern to another, depending on their current, specific needs. </li>
</ul>
<p>The table below compares the two new devices with the two older devices. It is in metric and was provided by John McDonald, Senior District Manager with Medtronic Neuromodulation, who manages a 7-state region in the U.S. </p>
<p>
<table border="1" cellpadding="2" cellspacing="0" width="430">
<tbody>
<tr>
<td valign="top" width="96"> </td>
<td valign="top" width="107">Activa® RC</td>
<td valign="top" width="86">Activa® PC</td>
<td valign="top" width="68">Kinetra®</td>
<td valign="top" width="69">Soletra®</td></tr>
<tr>
<td valign="top" width="94">Volume</td>
<td valign="top" width="105">22 cc</td>
<td valign="top" width="86">39 cc</td>
<td valign="top" width="68">50 cc</td>
<td valign="top" width="68">26 cc</td></tr>
<tr>
<td valign="top" width="92">Weight</td>
<td valign="top" width="104">40 g</td>
<td valign="top" width="86">66 g</td>
<td valign="top" width="68">82 g</td>
<td valign="top" width="67">42 g</td></tr>
<tr>
<td valign="top" width="90">Height</td>
<td valign="top" width="104">54 mm</td>
<td valign="top" width="86">65 mm</td>
<td valign="top" width="68">61 mm</td>
<td valign="top" width="66">55 mm</td></tr>
<tr>
<td valign="top" width="91">Length</td>
<td valign="top" width="103">54 mm</td>
<td valign="top" width="86">49 mm</td>
<td valign="top" width="68">77 mm</td>
<td valign="top" width="66">60 mm</td></tr>
<tr>
<td valign="top" width="89">Thickness</td>
<td valign="top" width="104">9 mm</td>
<td valign="top" width="86">15 mm</td>
<td valign="top" width="68">15.2 mm</td>
<td valign="top" width="67">10 mm</td></tr></tbody></table></p>
<p>The following table is the same as the one above, but converted for the metrically-challenged (that’s me). </p>
<p>
<table border="1" cellpadding="2" cellspacing="0" width="428">
<tbody>
<tr>
<td valign="top" width="96"> </td>
<td valign="top" width="107">Activa® RC</td>
<td valign="top" width="86">Activa® PC</td>
<td valign="top" width="68">Kinetra®</td>
<td valign="top" width="69">Soletra®</td></tr>
<tr>
<td valign="top" width="94">Volume</td>
<td valign="top" width="105">1.34 in<sup>3</sup></td>
<td valign="top" width="86">2.38 in<sup>3</sup></td>
<td valign="top" width="68">3.05 in<sup>3</sup></td>
<td valign="top" width="68">1.59 in<sup>3</sup></td></tr>
<tr>
<td valign="top" width="92">Weight</td>
<td valign="top" width="104">1.41 oz</td>
<td valign="top" width="86">2.33 oz</td>
<td valign="top" width="68">2.89 oz</td>
<td valign="top" width="67">1.48 oz</td></tr>
<tr>
<td valign="top" width="90">Height</td>
<td valign="top" width="104">2.12 in</td>
<td valign="top" width="86">2.56 in</td>
<td valign="top" width="68">2.40 in</td>
<td valign="top" width="66">2.16 in</td></tr>
<tr>
<td valign="top" width="91">Length</td>
<td valign="top" width="103">2.12 in</td>
<td valign="top" width="86">1.92 in</td>
<td valign="top" width="68">3.03 in</td>
<td valign="top" width="66">2.36 in</td></tr>
<tr>
<td valign="top" width="89">Thickness</td>
<td valign="top" width="104">.35 in</td>
<td valign="top" width="86">.59 in</td>
<td valign="top" width="68">.60 in</td>
<td valign="top" width="67">.39 in</td></tr></tbody></table></p>
<p><strong><font size="4">Sources of Information:</font></strong></p>
<p><font size="4">Presentation by John McDonald, Senior District Manager with Medtronic Neuromodulation, to DBS Support Group on September 11, 2009 in Denver, Colorado</font> 
<h3>For more info on the Activa PC:</h3>
<p><a href="http://www.medtronic.eu/your-health/parkinsons-disease/device/our-dbs-therapy-products/ActivaPC/index.htm">http://www.medtronic.eu/your-health/parkinsons-disease/device/our-dbs-therapy-products/ActivaPC/index.htm</a> 
<h3>For more info on the Activa RC:</h3>
<p><a href="http://www.medtronic.eu/your-health/parkinsons-disease/device/our-dbs-therapy-products/activaRC/index.htm">http://www.medtronic.eu/your-health/parkinsons-disease/device/our-dbs-therapy-products/activaRC/index.htm</a> 
<h3>For more info on the Activa Patient Programmer: </h3>
<p><a href="http://www.medtronic.eu/your-health/parkinsons-disease/device/our-dbs-therapy-products/activapatientprogrammer/index.htm">http://www.medtronic.eu/your-health/parkinsons-disease/device/our-dbs-therapy-products/activapatientprogrammer/index.htm</a></p>
<h3 />
<h3>News Release from Medtronic:</h3>
<p><a href="http://www.parkinsonalliance.org/UserFiles/file/MedtronicNewsRelease_7_09.pdf">http://www.parkinsonalliance.org/UserFiles/file/MedtronicNewsRelease_7_09.pdf</a></p>
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<p /></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p><xhtml:img xmlns:xhtml="http://www.w3.org/1999/xhtml" src="http://feeds.feedburner.com/~r/ShakeRattleAndRoll/~4/ScPwn-p_g8k" height="1" width="1" /></div></content>


    <feedburner:origLink>http://katekelsall.typepad.com/my_weblog/2009/09/device-envy.html</feedburner:origLink></entry>
    <entry>
        <title>How Prevalent Is Suicide in Parkinson's Disease?</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/nr9YR0FADv8/how-prevalent-is-suicide-in-parkinsons-disease.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/09/how-prevalent-is-suicide-in-parkinsons-disease.html" thr:count="1" thr:updated="2009-09-27T08:06:20-06:00" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e20120a5e99a2b970c</id>
        <published>2009-09-23T15:03:56-06:00</published>
        <updated>2009-09-23T16:39:37-06:00</updated>
        <summary>The dramatic headline “Suicide is Five Times More Likely in Parkinson’s Disease” caught my attention. It made it seem as though everyone with Parkinson’s Disease (PD) was either thinking about suicide, attempting suicide or committing suicide. I was skeptical and...</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: Emotional/Psychological Aspects " />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="Benzi Kluger" />
        <category scheme="http://sixapart.com/ns/types#tag" term="depression" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease" />
        <category scheme="http://sixapart.com/ns/types#tag" term="suicide" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p><font size="4">The dramatic headline “Suicide is Five Times More Likely in Parkinson’s Disease” caught my attention. It made it seem as though everyone with Parkinson’s Disease (PD) was either thinking about suicide, attempting suicide or committing suicide.</font> 
<p><font size="4">I was skeptical and asked <a href="http://www.uchsc.edu/psychiatry/brainimaging/faculty_and_staff/Benzi/Benzi_Kluger.php">Benzi Kluger, MD</a>, neurologist and specialist in the non-motor symptoms of PD, at the University of Colorado at Denver.</font> 
<p><font size="4">Dr. Kluger’s comments about the study (at the bottom of this post) are as follows:</font> 
<p><font size="4">1) This is a relatively small study. There were just over 100 patients followed for 8 years and only 2 suicides. With such a small sample the chance of error is high. One more or less suicide would have totally changed their results.</font> 
<p><font size="4">2) Suicidal ideation (thoughts) seem to be higher in PD, which is not surprising because depression is also more frequent.</font> 
<p><font size="4">3) Suicide is a cultural phenomena and higher in Serbia, where this study was done, than in the US.</font> 
<p><font size="4">4) Some studies suggest suicide may be at increased risk after DBS, but again these studies are small.</font> 
<p><font size="4">5) There is probably some increased risk for suicide with PD, but larger studies are needed in this country to reliably estimate this risk. Physicians, patients and care givers should be aware of this risk and take it seriously.</font> 
<p><font size="4">1: </font><a href="mip://03d15d60/UrlBlockedError.aspx"><font size="4">J Neurol Sci.</font></a><font size="4"> 2009 Sep 7. [Epub ahead of print]</font> 
<h4><font size="4">Suicide and suicidal ideation in Parkinson's disease</font></h4>
<p><a href="http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&amp;Cmd=Search&amp;Term=%22Kosti%C4%87%20VS%22%5BAuthor%5D&amp;itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus"><font size="4">Kostiæ VS</font></a><font size="4">, </font><a href="http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&amp;Cmd=Search&amp;Term=%22Pekmezovi%C4%87%20T%22%5BAuthor%5D&amp;itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus"><font size="4">Pekmezoviæ T</font></a><font size="4">, </font><a href="http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&amp;Cmd=Search&amp;Term=%22Tomi%C4%87%20A%22%5BAuthor%5D&amp;itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus"><font size="4">Tomiæ A</font></a><font size="4">, </font><a href="http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&amp;Cmd=Search&amp;Term=%22Je%C4%8Dmenica-Luki%C4%87%20M%22%5BAuthor%5D&amp;itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus"><font size="4">Jeèmenica-Lukiæ M</font></a><font size="4">, </font><a href="http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&amp;Cmd=Search&amp;Term=%22Stojkovi%C4%87%20T%22%5BAuthor%5D&amp;itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus"><font size="4">Stojkoviæ T</font></a><font size="4">, </font><a href="http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&amp;Cmd=Search&amp;Term=%22Spica%20V%22%5BAuthor%5D&amp;itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus"><font size="4">Spica V</font></a><font size="4">, </font><a href="http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&amp;Cmd=Search&amp;Term=%22Svetel%20M%22%5BAuthor%5D&amp;itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus"><font size="4">Svetel M</font></a><font size="4">, </font><a href="http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&amp;Cmd=Search&amp;Term=%22Stefanova%20E%22%5BAuthor%5D&amp;itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus"><font size="4">Stefanova E</font></a><font size="4">, </font><a href="http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&amp;Cmd=Search&amp;Term=%22Petrovi%C4%87%20I%22%5BAuthor%5D&amp;itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus"><font size="4">Petroviæ I</font></a><font size="4">, Džoljic E.</font> 
<p><font size="4">Institute of Neurology CCS, School of Medicine, Belgrade, Serbia.</font> 
<p><font size="4">Little is known about the prevalence and correlates of suicidal behavior in Parkinson's disease (PD). In the first part of the study, we followed a cohort of 102 consecutive PD patients for 8 years and found that the suicide-specific mortality was 5.3 (95% CI 2.1-12.7) times higher than expected. In the second part, we tested 128 PD patients for death and suicidal ideation and administered an extensive neurological, neuropsychological and psychiatric battery. Current death and/or suicidal ideation was registered in 22.7%. On univariate logistic regression analysis, psychiatric symptoms (depression, but also anxiety and hopelessness), but not the PD-related variables, were associated with such ideation. On multivariate logistic regression analysis this association held for major depression (odds ratio=4.6; 95% CI 2.2-9.4; p&lt;0.001), psychosis (odds ratio=19.2; 95% CI 1.4-27.3; p=0.026), and increasing score of the Beck Hopelessness Scale (odds ratio=1.2; 95% CI 1.0-1.4; p=0.008). In conclusion, the suicide risk in PD may not be as high as it is expected, but it is certainly not trivial. According to our data almost a quarter of PD patients had death and/or suicidal ideation, that may significantly influence their quality of life.</font> 
<p><font size="4">PMID: 19737673 [PubMed - as supplied by publisher]</font></p>
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    <feedburner:origLink>http://katekelsall.typepad.com/my_weblog/2009/09/how-prevalent-is-suicide-in-parkinsons-disease.html</feedburner:origLink></entry>
    <entry>
        <title>The True Everyday Heroes</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/4U0L46b-PDE/the-true-everyday-heroes.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/09/the-true-everyday-heroes.html" thr:count="2" thr:updated="2009-09-29T13:18:26-06:00" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e20120a58119f6970b</id>
        <published>2009-09-18T14:37:46-06:00</published>
        <updated>2009-09-29T14:11:51-06:00</updated>
        <summary>Kate Kelsall and Valerie Graham (photos courtesy of Deb Peek, University of Colorado Hospital) We (Kate Kelsall and Valerie Graham) feel honored and humbled to have received Channel 7's "Everyday Hero" awards for our volunteer work as Deep Brain Stimulation...</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: Deep Brain Stimulation/Programming" />
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: General" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="Channel 7" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Deep Brain Stimulation" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Everyday Hero Award" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Hospital Volunteering" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease" />
        <category scheme="http://sixapart.com/ns/types#tag" term="University of Colorado Hospital" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p>
<p><a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a58119e2970b-pi"><img alt="clip_image002" border="0" height="299" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a5d792d9970c-pi" style="BORDER-TOP-WIDTH: 0px; BORDER-LEFT-WIDTH: 0px; BORDER-BOTTOM-WIDTH: 0px; BORDER-RIGHT-WIDTH: 0px" width="196" /></a> <img alt="Valerie-9-15-09" border="0" class="at-xid-6a00d83451c95969e20120a5818695970b image-full " height="848" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a5818695970b-800wi" style="MARGIN: 0px; WIDTH: 195px; HEIGHT: 297px" title="Valerie-9-15-09" width="678" /> 
<p class="asset asset-image" />
<p class="asset asset-image"><a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a5d81074970c-pi" style="DISPLAY: block">Kate Kelsall and Valerie Graham (photos courtesy of Deb Peek, University of Colorado Hospital)</a></p>
<p />
<p><font face="Arial" size="4">We (Kate Kelsall and Valerie Graham) feel honored and humbled to have received Channel 7's "Everyday Hero" awards for our volunteer work as Deep Brain Stimulation (DBS) patient and family liaisons at the University of Colorado Hospital and co-founders and co-leaders of the DBS support group. At the same time, we both regard the true "Everyday Heroes" in this case to include:</font> 
<p><font face="Arial" size="4">(1) Our husbands and families who have stood by our sides through thick and thin and allow us the opportunity to contribute our time and energy to the Parkinson's and DBS communities;</font> 
<p><font face="Arial" size="4">(2) The remarkable DBS medical team at University of Colorado Hospital with whom we have the great privilege to associate, who work tirelessly to provide first-class care and exhibit seemingly inexhaustible compassion toward their patients; and</font> 
<p><font face="Arial" size="4">(3) Last, but certainly not least, each of the patients and their families that we have had the chance to assist these past two years, who never cease to amaze and inspire us with their unfailing courage, resourcefulness and resiliency in dealing with a chronic, progressive and presently incurable neurological illness.  </font></p><font size="4">
<div>Channel 7 in Denver will be airing the segment which they taped concerning our awards on the following dates:</div><br />
<div><span class="Apple-tab-span" style="WHITE-SPACE: pre" />Sunday, September 27th at 10 p.m.</div>
<div><span class="Apple-tab-span" style="WHITE-SPACE: pre" />Monday, September 28th at 5 a.m. </div>
<div><span class="Apple-tab-span" style="WHITE-SPACE: pre" />Thursday, October 1st at 11 a.m.</div>
<div><span class="Apple-tab-span" style="WHITE-SPACE: pre" />Friday, October 2nd at 4 p.m.</div>
<div><span class="Apple-tab-span" style="WHITE-SPACE: pre" />Saturday, October 3rd at 5 p.m.</div>
<div><span class="Apple-tab-span" style="WHITE-SPACE: pre" />Sunday, October 4th at 7 a.m.</div>
<div> </div>
<div>Story from Channel 7 in Denver:</div>
<div><a href="http://www.thedenverchannel.com/news/21139596/detail.html">Women Bring Hope to Parkinson's Patients</a></div>
<div><a href="http://www.thedenverchannel.com/news/21139596/detail.html">http://www.thedenverchannel.com/news/21139596/detail.html</a></div>
<div> </div></font></p></p></p></p></p><xhtml:img xmlns:xhtml="http://www.w3.org/1999/xhtml" src="http://feeds.feedburner.com/~r/ShakeRattleAndRoll/~4/4U0L46b-PDE" height="1" width="1" /></div></content>


    <feedburner:origLink>http://katekelsall.typepad.com/my_weblog/2009/09/the-true-everyday-heroes.html</feedburner:origLink></entry>
    <entry>
        <title>I'm Not Bragging But...</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/1B5x3_aHYrw/im-not-bragging-but.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/09/im-not-bragging-but.html" thr:count="0" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e20120a5d23f86970c</id>
        <published>2009-09-17T18:42:57-06:00</published>
        <updated>2009-09-20T20:24:18-06:00</updated>
        <summary>Well, yes, I guess I am bragging. I just had to tell someone about my perfect week -- and it's only Thursday. 1. Valerie Graham and I were fortunate to be chosen to participate in the Clinical Research Learning Institute,...</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: Deep Brain Stimulation/Programming" />
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: General" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="Channel 7" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Clinical Research Learning Institute" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Deep Brain Stimulation" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Everyday Hero Award" />
        <category scheme="http://sixapart.com/ns/types#tag" term="hospital volunteering" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Lombard effect" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Mitch Jelniker" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease Foundation" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p><font size="4">Well, yes, I guess I am bragging. I just had to tell someone about my perfect week -- and it's only Thursday.</font> 
<p><font size="4">1. Valerie Graham and I were fortunate to be chosen to participate in the Clinical Research Learning Institute, sponsored by the Parkinson's Disease Foundation  The institute is in New Jersey from Thursday, October 15, 2009 through Saturday, October 17, 2009.</font> 
<p><strong><font size="4" /></strong>
<p><font size="4">The Clinical Research Learning Institute (CRLI) provides people with Parkinson’s disease with the knowledge and skills necessary to be effective representatives and advocates within the clinical research enterprise. This multi-day training prepares individuals for such activities as: educating the community about the importance of clinical research and study participation; serving as representatives on Institutional Review Boards (IRBs) and Data Safety Monitoring Boards (DSMBs); and providing research sponsors and investigators with input on trial design, implementation and evaluation.</font> 
<p><font size="4">Following the Clinical Research Learning Institute, the Parkinson’s Disease Foundation (PDF) will actively engage with graduates to offer continuing educational opportunities, to help identify community engagement opportunities and to encourage exchange and interaction among CRLI participants. </font>
<p><font size="4">Expenses for attending the Clinical Research Learning Institute (registration, travel, hotel accommodations, meals, etc.) are paid for by the Parkinson’s Disease Foundation (PDF).</font> 
<p><font size="4">2. Tuesday, 9/15/09 --  Valerie Graham and I were tricked into going to the hospital for a DBS meeting during the afternoon. We entered the conference room in the neurology clinic and the neurologist, neurosurgeon and entire DBS team lined the perimeter of the room.</font> 
<p><font size="4">A man shook our hands and said that he was Mitch Jelniker from Channel 7 news. Valerie and I were awarded the "Channel 7 Everyday Hero Award" for our volunteer work with DBS patients and their families (DBS Patient and Family Liaisons at the University of Colorado Hospital and as co-founders and co-leaders of the DBS support group). Channel 7 taped an interview with us even though we had a stunned, deer-in-the-headlights expression on our faces. Channel 7 will air the short video clip six times during the week beginning Sunday, September 27. </font>
<p><font size="4">3. Wednesday, 9/16/09 -- This morning, Valerie Graham and I were two of the people being interviewed by the second year medical students about living with PD and DBS. When I mentioned that I was plagued by problems with my voice and speech, they looked puzzled and said "what problems?" Each of the ten students plus two professors said that they could hear me and understand me loud and clear!!</font> 
<p><font size="4">Valerie and I have become the dynamic duo, the go-getters for Parkinson's. Thanks for letting me brag about us.</font> 
<p><font size="4">Kate Kelsall</font></p>
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    <feedburner:origLink>http://katekelsall.typepad.com/my_weblog/2009/09/im-not-bragging-but.html</feedburner:origLink></entry>
    <entry>
        <title>Speechless</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/s7HgjlnKcvQ/speechless.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/09/speechless.html" thr:count="0" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e20120a570d993970b</id>
        <published>2009-09-15T08:25:16-06:00</published>
        <updated>2009-09-15T12:59:06-06:00</updated>
        <summary>He was my favorite person at Toastmasters when I was a member 13 years ago, at the time of my Parkinson's diagnosis. He was vibrant, talkative with a slight southern drawl and a folksy sense of humor. We both had...</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Topic-Other: Medical" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="Primary Progressive Aphasia" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p><span style="FONT-SIZE: 14px; FONT-FAMILY: ">He was my favorite person at Toastmasters when I was a member 13 years ago, at the time of my Parkinson's diagnosis. He was vibrant, talkative with a slight southern drawl and a folksy sense of humor. We both had become quite competent public speakers. </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: ">When I arrive home from the DBS support group last Friday, I see his and his wife's name on my phone's caller ID. I pick up the phone to retrieve the message but there is none. I turn on my computer and discover that his wife has sent me an email. She says that I wouldn't recognize her husband and that he has Primary Progressive Aphasia. I'm speechless. </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: ">Primary Progressive Aphasia (PPA) is a rare motor skills degenerative disease with no treatment and no cure. She says he is dizzy all the time, very thin, talks very little, cannot communicate verbally or in writing, walks with a cane, goes to bed at 7 PM, sleeps in a twin bed in the computer room on the main floor, has balance problems, and creates holes in the walls of their home due to his falling. Their son has moved back home to share her caregiving load. Again, I'm speechless, and relieved to respond by email and not have to formulate the right words of support in person. </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: ">Her world has narrowed to taking care of him before work, going to work, and taking care of him after work. She is articulate in describing what it's like for her, yet I am clueless about how difficult it must be and don't know how to respond. </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: ">For the past five years, their lives have been consumed by appointments with neurologists, MRIs, and PET scans. They finally found a neurologist who "wants to get to the bottom of this" instead of all the others with a "there is nothing we can do" attitude. The neurologist obviously knows what to say despite the dire prognosis. </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: ">I am a compassionate person, but with Parkinson's, I occasionally can't string the right words together at the right time. I have no idea the pain and frustration they must experience when he can't communicate and is totally speechless. </span> 
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: ">More information on Primary Progressive Aphasia can be obtained at: </span><a href="http://www.aphasia.org/Aphasia%20Facts/primary_progressive_aphasia.html"><span style="FONT-SIZE: 14px; FONT-FAMILY: ">http://www.aphasia.org/Aphasia%20Facts/primary_progressive_aphasia.html</span></a><a href="http://www.aphasia.org/index.html" /></p>
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    <feedburner:origLink>http://katekelsall.typepad.com/my_weblog/2009/09/speechless.html</feedburner:origLink></entry>
    <entry>
        <title>Everything You Ever Wanted to Know about Yoga and Parkinson's Disease</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/YOLBZHQpSiY/everything-you-ever-wanted-to-know-about-yoga-and-parkinsons-disease.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/09/everything-you-ever-wanted-to-know-about-yoga-and-parkinsons-disease.html" thr:count="0" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e20120a5b0102d970c</id>
        <published>2009-09-08T17:02:38-06:00</published>
        <updated>2009-09-22T07:18:21-06:00</updated>
        <summary>Paul Zeiger and Carolyn Zeiger have set up a terrific new web site about yoga and Parkinson's Disease. Also included are articles by Carolyn on caregiving. Their web site is easy to navigate and user friendly. Check it out at:...</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: Care Partnering, Caretaking" />
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: Yoga" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="care partner" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Caregiving" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Yoga" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p><font face="Arial" size="4">Paul Zeiger and Carolyn Zeiger have set up a terrific new web site about yoga and Parkinson's Disease. Also included are articles by Carolyn on caregiving.</font></p>
<p><font face="Arial" size="4">Their web site is easy to navigate and user friendly.</font></p>
<p><font face="Arial" size="4">Check it out at:</font></p>
<p><a href="http://www.parkinsonsyoga.org/" title="http://www.parkinsonsyoga.org/"><font face="Arial" size="4">http://www.parkinsonsyoga.org/</font></a></p><xhtml:img xmlns:xhtml="http://www.w3.org/1999/xhtml" src="http://feeds.feedburner.com/~r/ShakeRattleAndRoll/~4/YOLBZHQpSiY" height="1" width="1" /></div></content>


    <feedburner:origLink>http://katekelsall.typepad.com/my_weblog/2009/09/everything-you-ever-wanted-to-know-about-yoga-and-parkinsons-disease.html</feedburner:origLink></entry>
    <entry>
        <title>Gravity + Grace</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/eFadhE9jQBk/gravity-grace.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/09/gravity-grace.html" thr:count="0" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e20120a541fd64970b</id>
        <published>2009-09-02T15:23:59-06:00</published>
        <updated>2009-09-02T15:30:44-06:00</updated>
        <summary>Gravity + Grace: A Contemporary Opera by Frank Ferraro and Stephen Pellegrino If you live near Pittsburgh, Pennsylvania, you won't want to miss this performance. Artist Frank Ferraro was diagnosed with Parkinson's Disease at 42. His Collaborator and friend Stephen...</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: General" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="Frank Ferraro" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Gravity + Grace" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Stephen Pellegrino" />
        <category scheme="http://sixapart.com/ns/types#tag" term="The Parkinson Foundation of Western Pennsylvania" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p><font color="#0000ff" face="Arial" size="4"><em>Gravity + Grace: A Contemporary Opera</em> by Frank Ferraro and Stephen Pellegrino</font></p>
<p><font color="#0000ff" face="Arial" size="4">If you live near Pittsburgh, Pennsylvania, you won't want to miss this performance. </font></p>
<p><font color="#0000ff" face="Arial" size="4">Artist Frank Ferraro was diagnosed with Parkinson's Disease at 42. His Collaborator and friend Stephen Pellegrino, was a caregiver to his father-in-law who also suffered from Parkinson's. These two artists have experienced the effects of a disease that changes lives. Together, they have created a contemporary opera that will resonate with any person facing adversity and those who care for them.</font></p>
<p><font color="#0000ff" face="Arial" size="4">To find out more, visit </font><font color="#0000ff" face="Arial" size="4"><a href="http://www.gravityandgrace.org">www.gravityandgrace.org</a></font></p>
<p><font color="#0000ff" face="Arial" size="4">or call the Parkinson Foundation of Western Pennsylvania @ 412-365-2086<br /></font></p>
<p>
<h3><a href="http://gravitygrace.myfastsite.com/tickets/"><font face="Arial" /></a></h3>
<p><img border="0" height="834" src="http://docs.google.com/File?id=dd3g33sw_3g3692tgw_b" width="557" /></p>
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<hr />

<p>Hotmail® is up</p>
<p /></p><xhtml:img xmlns:xhtml="http://www.w3.org/1999/xhtml" src="http://feeds.feedburner.com/~r/ShakeRattleAndRoll/~4/eFadhE9jQBk" height="1" width="1" /></div></content>


    <feedburner:origLink>http://katekelsall.typepad.com/my_weblog/2009/09/gravity-grace.html</feedburner:origLink></entry>
    <entry>
        <title>Back to My Bliss</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/UIT9t1D-vgs/back-to-my-bliss.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/08/back-to-my-bliss.html" thr:count="3" thr:updated="2009-09-13T07:41:08-06:00" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e20120a53970b5970b</id>
        <published>2009-08-31T16:52:18-06:00</published>
        <updated>2009-09-12T10:07:45-06:00</updated>
        <summary>Last Friday night, after a seven year absence, I played with the accordion band. I also made a commitment to play for Octoberfest, at the Christmas dinner for the homeless, and at the December meeting of the DBS support group....</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: Accordion and Music" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="acccordion" />
        <category scheme="http://sixapart.com/ns/types#tag" term="music" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p><font face="Arial" size="4">Last Friday night, after a seven year absence, I played with the accordion band. I also made a commitment to play for Octoberfest, at the Christmas dinner for the homeless, and at the December meeting of the DBS support group. </font>
<p><font face="Arial" size="4">Alice, the band leader, had tears in her eyes to see me return. My fingers and thought process were slow. I had difficulty keeping up the pace. But I'm back to my accordion bliss!!!</font> 
<p><font face="Arial" size="4"><a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a53970aa970b-pi"><img alt="CIMG1385" border="0" height="244" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a53970b2970b-pi" style="BORDER-TOP-WIDTH: 0px; BORDER-LEFT-WIDTH: 0px; BORDER-BOTTOM-WIDTH: 0px; BORDER-RIGHT-WIDTH: 0px" width="184" /></a>  Photo courtesy of Deborah Fryer of Lila films at: www.lilafilms.com</font> 
<p><font face="Arial" size="4" /></p>
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    <feedburner:origLink>http://katekelsall.typepad.com/my_weblog/2009/08/back-to-my-bliss.html</feedburner:origLink></entry>
    <entry>
        <title>Speak Up!</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/rsolezWJ8u8/speak-up.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/08/speak-up.html" thr:count="0" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e20120a52ac265970b</id>
        <published>2009-08-28T09:45:08-06:00</published>
        <updated>2009-08-28T09:51:27-06:00</updated>
        <summary>Purdue University News August 25, 2009 New technology helps Parkinson's patients speak louder by Emil Venere and Cynthia Sequin Source: http://www.purdue.edu/UNS/x/2009b/090825HuberParkinsons.html WEST LAFAYETTE, Ind. - Jessica Huber, at left, an associate professor in Purdue's Department of Speech, Language and Hearing...</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: Communication, Speech and Voice" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="Jessica Huber" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Purdue University" />
        <category scheme="http://sixapart.com/ns/types#tag" term="speech" />
        <category scheme="http://sixapart.com/ns/types#tag" term="voice" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p> <strong>Purdue University News</strong>
<hr align="left" noshade="noShade" size="2" />

<p>August 25, 2009 
<h5><font face="Arial" size="4">New technology helps Parkinson's patients speak louder</font><font face="Arial" size="4"> by Emil Venere and Cynthia Sequin</font></h5>
<p>Source:  <a href="http://www.purdue.edu/UNS/x/2009b/090825HuberParkinsons.html" title="http://www.purdue.edu/UNS/x/2009b/090825HuberParkinsons.html">http://www.purdue.edu/UNS/x/2009b/090825HuberParkinsons.html</a></p>
<h6 />
<h5>WEST LAFAYETTE, Ind. - <strong /></h5>
<blockquote>
<p><img src="http://news.uns.purdue.edu/images/+2009/huber-parkinsonsLO.jpg" />      Jessica Huber, at left, an associate professor in Purdue's Department of Speech, Language and Hearing Sciences, and graduate student Meghan Moran demonstrate a new technology developed in Huber's lab that helps Parkinson's patients overcome the tendency to speak too quietly. The system works by playing a recording of ambient sound, which resembles the noisy chatter of a restaurant full of patrons. A sensor placed on the neck detects that the person has begun to speak and tells the device to play the babble through an earpiece worn by the patient. Patients also wear a mask and sensors in elastic bands placed around the rib cage to precisely record respiratory, laryngeal and articulatory data. (Purdue University photo/Andrew Hancock) 
<br /></p></blockquote>
<p>Researchers have developed a new technology that helps Parkinson's patients overcome the tendency to speak too quietly by playing a recording of ambient sound, which resembles the noisy chatter of a restaurant full of patrons. 
<p>"People with Parkinson's disease commonly have voice and speech problems," said Jessica Huber, an associate professor in Purdue's Department of Speech, Language and Hearing Sciences. "At some point in their disease they will have some form of voice or speech disorder that generally occurs a little later in the disease." 
<p>Parkinson's affects 1.5 million people in the United States and is one of the most common degenerative neurological diseases. About 89 percent of those with Parkinson's have voice-related change, which is related to how loudly they speak, and about 45 percent have speech-related change, or how clearly they speak. 
<p>"A major therapy is to get people to speak louder, which also may cause them to articulate more clearly," Huber said. 
<p>The most common therapy, the Lee Silverman voice treatment program, trains patients to speak louder in one-hour sessions four days a week for a month. 
<p>"Some Parkinson's patients do great with this approach, but others do not," Huber said. "They forget to keep speaking louder the minute they have left the therapy room. Lee Silverman tends to work less for people with later stages of disease or those who have some cognitive decline. So I wanted to know whether there was an easier way to cue people during therapy, rather than telling them, 'Try to be twice as loud,' or 'Try to focus on this sound meter and achieve this loudness.'" 
<p>Huber used a new approach: The patients were asked to speak louder while a recording of background "multitalker babble noise" was played. The noise is essentially the sound of a restaurant full of patrons, but without the clattering silverware and clinking glasses. 
<p>"They had an easier time getting louder when I had the noise in the room," she said. "Ordinarily, when I asked them to be twice as loud they would say they couldn't. They couldn't speak 10 decibels louder, but when I turned on the babble noise, they spoke over 10 decibels louder." 
<p>The background sound elicits a well-known phenomenon called the Lombard effect, a reflex in which people automatically speak louder in the presence of background sound. 
<p>"You go into a loud room at a party and you talk louder without even realizing it," Huber said. "We've all had the experience where the room suddenly gets quiet and you're still shouting but you didn't know you were." 
<p>Huber created a new electronic technology using this principle. The voice-activated device automatically plays the background babble when the person begins to speak. A sensor placed on the neck detects that the person has begun to speak and tells the device to play the babble through an earpiece worn by the patient. 
<p>"I got the idea that if we train them with a natural cue in their everyday environment, we will probably get better results," she said. "We ask them to wear the system for about four hours a day as they go about their daily routine." 
<p>A critical part of the research is to integrate the voice-detection sensor, called an accelerometer, developed in work led by biomedical engineering doctoral students Matias Zanartu and Julio C. Ho and biomedical engineering professor George Wodicka, head of Purdue's Weldon School of Biomedical Engineering. 
<p>"This sensor is crucial because it is essential that the background babble noise only turn on when the subject talks," Huber said. 
<p>The device prototype was built by engineering resources manager Jim Jones and senior research engineer Kirk Foster, both in the Weldon School. An earlier prototype had been built by Scott Kepner, manager of technical services, and Derek Tully, assistant manager of technical services, both in the Department of Speech, Language and Hearing Sciences. 
<p>Six patients wore the portable system for eight weeks. Data collected showed the system effectively prompts Parkinson's patients to speak louder and more clearly. 
<p>"Their speech changes significantly," said Huber, who is working with Meghan Darling, a doctoral student in Speech, Language and Hearing Sciences. "There have been times where I have called patients and they've had the device on and I didn't really recognize them. And these are patients I've known for a long time. This is beneficial also because it trains them in their everyday environment - in their homes, with their spouses, in their churches, in their social groups." 
<p>Huber determined the system works by measuring how much louder patients talked while on the device and without the device after eight weeks of training. 
<p>The researchers also are interested in examining the physiological changes elicited by the device. Patients wear a mask and sensors in elastic bands placed around the rib cage to precisely recording respiratory, laryngeal and articulatory data. 
<p>"We know the lung volume, and we know the pressure and the airflow they generate during speech, which tells us not only whether they are talking louder but how they are talking louder," Huber said. "For example, maybe they are using solely the respiratory system to get louder, or maybe it's all about the larynx." 
<p>The researchers also will test how well the system works by having people who are not speech pathologists listen to the patients pronouncing words that could be easily confused with other words. 
<p>Researchers will work in the future with patients at the Rehabilitation Institute of Indianapolis. Further research is needed to determine whether patients continue speaking louder when they are not wearing the device. The system could be further developed to use rechargeable batteries, Huber said. 
<p>The research is funded by the National Institutes of Health. Purdue has filed a provisional patent on the concept. 
<p>The researchers are seeking Parkinson's disease patients to participate in the study. To participate, or for more information on the study, contact Huber at 765-494-3796, <a href="mailto:jhuber@purdue.edu">jhuber@purdue.edu</a>. 
<p><em /> 
<p><em>Permission to reprint was granted by authors.</em> 
<p>Source: Jessica Huber, (765) 494-3796, <a href="mailto:jhuber@purdue.edu">jhuber@purdue.edu</a> 
<p><strong><span style="text-decoration: underline;">Note:</span></strong>  A video story is available at <a href="http://www.youtube.com/watch?v=Xj0py9k_uIs">http://www.youtube.com/watch?v=Xj0py9k_uIs</a>. 
<p>
<p><a href="http://www.addthis.com/bookmark.php" /></p>
<p><img hspace="45" src="http://news.uns.purdue.edu/images/dot_clear.gif" /></p>
<p /></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p></p><xhtml:img xmlns:xhtml="http://www.w3.org/1999/xhtml" src="http://feeds.feedburner.com/~r/ShakeRattleAndRoll/~4/rsolezWJ8u8" height="1" width="1" /></div></content>


    <feedburner:origLink>http://katekelsall.typepad.com/my_weblog/2009/08/speak-up.html</feedburner:origLink></entry>
    <entry>
        <title>When Families Managed Their Own Health Care</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/evmc4D6DH7o/when-families-managed-their-own-health-care.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/08/when-families-managed-their-own-health-care.html" thr:count="0" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e20120a525e5db970b</id>
        <published>2009-08-27T10:14:02-06:00</published>
        <updated>2009-08-27T10:36:10-06:00</updated>
        <summary>In the 1950s, bumps, bruises, scrapes, sniffles, sore throats, stomach aches, indigestion, fevers, headaches, coughs, colds and growing pains were all managed at home. For delightful memories about the home remedies of the 1950s, check out Liz O’Brien’s story, Watermelon...</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Topic-Other: Medical" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="1950s" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Home Remedies" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Liz O'Brien" />
        <category scheme="http://sixapart.com/ns/types#tag" term="medical blogs" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Medpage Today" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">In the 1950s, bumps, bruises, scrapes, sniffles, sore throats, stomach aches, indigestion, fevers, headaches, coughs, colds and growing pains were all managed at home. For delightful memories about the home remedies of the 1950s, check out Liz O’Brien’s story, </span><a href="http://www.medpagetoday.com/Blogs/15629"><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Watermelon Chunks and Mercurochrome Bunnies</span></a>, <span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">in Medpage Today Staff Blog at: </span><a href="http://www.medpagetoday.com/Blogs/15629"><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">http://www.medpagetoday.com/Blogs/15629</span></a> 
<p>
<blockquote>
<p><a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a525e437970b-pi"><img alt="ginger ale" border="0" height="240" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a525e451970b-pi" style="BORDER-TOP-WIDTH: 0px; BORDER-LEFT-WIDTH: 0px; BORDER-BOTTOM-WIDTH: 0px; WIDTH: 118px; HEIGHT: 182px; BORDER-RIGHT-WIDTH: 0px" width="182" /></a>             <a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a525e478970b-pi" />         <a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a57cb50e970c-pi"><img alt="Milk of Magnesia" border="0" height="229" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a57cb531970c-pi" style="BORDER-TOP-WIDTH: 0px; BORDER-LEFT-WIDTH: 0px; BORDER-BOTTOM-WIDTH: 0px; WIDTH: 164px; HEIGHT: 252px; BORDER-RIGHT-WIDTH: 0px" width="229" /></a>     <a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a57cbe84970c-pi" style="DISPLAY: inline"><img alt="Mercurochrome" border="0" class="at-xid-6a00d83451c95969e20120a57cbe84970c " height="222" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a57cbe84970c-800wi" title="Mercurochrome" width="130" /></a> </p>
<p><strong /></p></blockquote><br />
<blockquote>
<p>   <a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a525e4e6970b-pi"><img alt="Vicks VapoRub" border="0" height="200" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a57cb575970c-pi" style="BORDER-TOP-WIDTH: 0px; BORDER-LEFT-WIDTH: 0px; BORDER-BOTTOM-WIDTH: 0px; BORDER-RIGHT-WIDTH: 0px" width="200" /></a>           <img alt="hot water bottle" border="0" height="222" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a57cb649970c-pi" style="BORDER-TOP-WIDTH: 0px; BORDER-LEFT-WIDTH: 0px; BORDER-BOTTOM-WIDTH: 0px; BORDER-RIGHT-WIDTH: 0px" width="244" /></p>
<p style="TEXT-ALIGN: left"><a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a57cb655970c-pi"><img alt="ex-lax" border="0" height="244" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a525e5d3970b-pi" style="BORDER-TOP-WIDTH: 0px; BORDER-LEFT-WIDTH: 0px; BORDER-BOTTOM-WIDTH: 0px; BORDER-RIGHT-WIDTH: 0px" width="232" /></a>                      <a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a525f8ec970b-pi" style="DISPLAY: inline"><img alt="Smith-brothers" border="0" class="at-xid-6a00d83451c95969e20120a525f8ec970b " src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a525f8ec970b-800wi" title="Smith-brothers" /></a> </p>
<p style="TEXT-ALIGN: left"> </p>
<p style="TEXT-ALIGN: center"><a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a525fca8970b-pi" style="DISPLAY: inline"><img alt="Watermelon" border="0" class="at-xid-6a00d83451c95969e20120a525fca8970b " height="130" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a525fca8970b-800wi" style="WIDTH: 342px; HEIGHT: 109px" title="Watermelon" width="368" /></a></p>
<p style="TEXT-ALIGN: left" />
<p style="TEXT-ALIGN: right">                     <a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a525e59b970b-pi" />                    <a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a57cb655970c-pi" /></p></blockquote>
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<p /></p></p><xhtml:img xmlns:xhtml="http://www.w3.org/1999/xhtml" src="http://feeds.feedburner.com/~r/ShakeRattleAndRoll/~4/evmc4D6DH7o" height="1" width="1" /></div></content>


    <feedburner:origLink>http://katekelsall.typepad.com/my_weblog/2009/08/when-families-managed-their-own-health-care.html</feedburner:origLink></entry>
    <entry>
        <title>Wouldn't It Be Great If This Drug Slowed or Stopped the Progression of Parkinson's</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/_aw4r0Oyo78/wouldnt-it-be-great-if-this-drug-slowed-or-stopped-the-progression-of-parkinsons.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/08/wouldnt-it-be-great-if-this-drug-slowed-or-stopped-the-progression-of-parkinsons.html" thr:count="0" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e20120a5093668970b</id>
        <published>2009-08-20T12:50:25-06:00</published>
        <updated>2009-08-28T08:16:37-06:00</updated>
        <summary>New Parkinson's drug tested at CU Denver written by: Jeffrey Wolf Date last updated: 8/17/2009 10:28:22 PM AURORA - A new study on Parkinson's disease going on in Colorado could be groundbreaking on how the disease is treated. Dr. Curt...</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: General" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="Curt Freed" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Michael J. Fox Foundation" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease" />
        <category scheme="http://sixapart.com/ns/types#tag" term="phenylbutyrate" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p><img alt="Print-friendly 9NEWS.com Story" height="42" src="http://www.9news.com/graphics/print/9news-com.jpg" style="WIDTH: 337px; HEIGHT: 30px" width="346" /> 
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial"><strong><a href="http://www.9news.com/includes/tools/print.aspx?storyid=121499">New Parkinson's drug tested at CU Denver</a> </strong></span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial"><strong><span style="FONT-SIZE: 15px; FONT-FAMILY: Arial">written by: </span></strong></span><a href="mailto:jeff.wolf@9news.com?subject=viewer question about an article&amp;body=Link:http://www.9news.com/includes/tools/print.aspx?storyid=121499"><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial"><strong><span style="FONT-SIZE: 15px; FONT-FAMILY: Arial">Jeffrey Wolf</span></strong></span></a><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial"><strong><span style="FONT-SIZE: 15px; FONT-FAMILY: Arial">  Date last updated: 8/17/2009 10:28:22 PM </span></strong></span>
<p><span style="FONT-SIZE: 15px; FONT-FAMILY: Arial">AURORA - A new study on Parkinson's disease going on in Colorado could be groundbreaking on how the disease is treated.</span></p>
<p><span style="FONT-SIZE: 15px; FONT-FAMILY: Arial">Dr. Curt Freed at the University of Colorado Denver's School of Medicine believes a drug normally used for a rare liver disease may slow or stop the progression of Parkinson's. </span>
<p><span style="FONT-SIZE: 15px; FONT-FAMILY: Arial">The drug, phenylbutyrate, can prevent brain deterioration in animal models of Parkinson's. In the animal study, the drug essentially turns on a gene that protects the brain. </span>
<p><span style="FONT-SIZE: 15px; FONT-FAMILY: Arial">Twelve human patients will be involved in the new study. </span>
<p><span style="FONT-SIZE: 15px; FONT-FAMILY: Arial">The goal is to see if the drug increases the levels of the gene in the patients' blood. </span>
<p><span style="FONT-SIZE: 15px; FONT-FAMILY: Arial">If the study shows promise in this early phase, it could lead to a larger study. </span>
<p><span style="FONT-SIZE: 15px; FONT-FAMILY: Arial">The initial grant for the study comes from the Michael J. Fox Foundation. </span>
<p><span style="FONT-SIZE: 15px; FONT-FAMILY: Arial"><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">(Copyright KUSA*TV, All</span> Rights Reserved)</span></p>
<p><span style="FONT-SIZE: 15px; FONT-FAMILY: Arial">Source:  </span><a href="http://www.9news.com/includes/tools/print.aspx?storyid=121499"><span style="FONT-SIZE: 15px; FONT-FAMILY: Arial">http://www.9news.com/includes/tools/print.aspx?storyid=121499</span></a></p>
<p><br /><span style="FONT-SIZE: 15px; FONT-FAMILY: Arial">When I asked Dr. Curt Freed about the accuracy of this report, his reply was as follows:</span></p>
<p><span style="FONT-SIZE: 15px; FONT-FAMILY: Arial">The story is correct.  In a genetic mouse model of Parkinson's, my lab has discovered that phenylbutyrate increases a protective gene in the blood and in the brain that stops Parkinson's from advancing.  We are testing the drug in people to see if it turns on the gene, and if so, what dose is best.  Assuming the drug does this, then we will test the drug to see if it can stop Parkinson's in people. </span>
<p><span style="FONT-SIZE: 15px; FONT-FAMILY: Arial">Curt R. Freed, MD, Professor and Head, Division of Clinical Pharmacology and Toxicology, University of Colorado Denver School of Medicine    </span>
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    <feedburner:origLink>http://katekelsall.typepad.com/my_weblog/2009/08/wouldnt-it-be-great-if-this-drug-slowed-or-stopped-the-progression-of-parkinsons.html</feedburner:origLink></entry>
    <entry>
        <title>The Misunderstood Mask of Parkinson's</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/fdaWrIx5noI/the-misunderstood-mask-of-parkinsons.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/08/the-misunderstood-mask-of-parkinsons.html" thr:count="0" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e20120a504cf5e970b</id>
        <published>2009-08-19T10:28:37-06:00</published>
        <updated>2009-08-21T08:55:28-06:00</updated>
        <summary>I overheard my friend say “she still has that Parkinson’s stare” when describing me on the phone to her sister. My feelings were hurt, particularly when I’ve made progress in managing the motor symptoms of Parkinson’s. No matter how hard...</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: Blogs" />
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: Communication, Speech and Voice" />
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: Diagnosis and Symptoms" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="Blogs" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Face" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Mask" />
        <category scheme="http://sixapart.com/ns/types#tag" term="nonverbal communication" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Peter Dunlap-Shohl" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">I overheard my friend say “she still has that Parkinson’s stare” when describing me on the phone to her sister. My feelings were hurt, particularly when I’ve made progress in managing the motor symptoms of Parkinson’s. </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">No matter how hard I try to smile and look pleasant, my expressionless Parkinson’s mask persists. Sure I can smile when someone is taking my picture, but it’s too much multi-tasking to remember to smile all day. </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">My dead-pan Parkinson’s face and stare are frequently misinterpreted. I have been accused of being angry when happy, sad when gleeful and bored when passionate. People think I’m in chronic bad mood with “that frown on your face.” </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Normal people just don’t get it. <strong>But Peter Dunlap-Shohl does get it</strong>. A cartoonist with Parkinson’s, Peter’s blog, </span><a href="http://offandonakpdrag.blogspot.com"><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Off and On</span></a><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">, describes living with Parkinson’s Disease in Anchorage, Alaska. Peter generously granted me permission to post the following article and cartoon from his blog. You can enjoy more of his postings at: </span><a href="http://offandonakpdrag.blogspot.com"><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">http://offandonakpdrag.blogspot.com</span></a> 
<p>
<p><strong><a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a55be5e0970c-pi"><img alt="PD Face" border="0" height="723" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a504cf5b970b-pi" style="BORDER-TOP-WIDTH: 0px; BORDER-LEFT-WIDTH: 0px; BORDER-BOTTOM-WIDTH: 0px; BORDER-RIGHT-WIDTH: 0px" width="482" /></a> </strong>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial"><strong>The Mask</strong> </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial"><strong>Article and Cartoon by Peter Dunlap-Shohl, Copyright © 2008 </strong></span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Anyone can see some of the damage Parkinson's disease visits on those who have it. Tremor and shuffling are painfully obvious. But there is another set of problems spawned by what you don't see.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">With the loss of control of facial muscles we also lose a significant chunk of our ability to communicate. Instead of expressive smiles and frowns, we present a deadpan, blank mask that unnerves others.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Much of the sense of what we all say is not in the voice or words, but in the subtle visual cues and signals the face sends. We all interpret speech in the light of what we read in a person's expression. People with Parkinson's can slowly lose the ability to enhance communication this way without even knowing it.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Think about the problem of misinterpretation of e-mail. The sender composes a message in which the words seem clear as the send button is pushed. </span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">The recipient looks at the cold, expressionless type on their screen, and without the guidance of the visual and tone cues that we all use to correctly interpret meaning, assigns meaning that isn't there. Often the missing meaning is misread, and the interpretation negative.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Then consider the way we get around this problem. We insert little faces that clarify our intent <strong>;-) </strong></span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">This is exactly what those of us with Parkinson's Disease are not doing in face-to-face conversation. We are sending spoken email, without the emoticons <strong>:-( </strong></span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Instead of this <strong>:-)</strong> , or this <strong>:-(</strong> , what we send is this <strong>:-|</strong> . Nothing but <strong>:-|</strong></span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">To complicate things further, we are often unaware that we are not sending the proper cues. And worse, as people look for these cues and cannot find them, they get frustrated, confused and eventually angry. </span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Once while taking care of some support group business at a bank with my friend Lory, I sensed rising irritation in our banker. I was at a loss as to the cause, but then realized she was interpreting our Parkinsonian lack of expression as anger. I stopped the rapidly deteriorating meeting, and explained our featureless expressions. </span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">The change was immediate and dramatic. She went from grim to jovial in seconds flat. And Lory and I, having solved the mysterious problem, were elated <strong>:-|</strong></span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial" /> </p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial"><strong>Related Story:</strong></span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial"><strong><a href="http://katekelsall.typepad.com/my_weblog/2007/08/the-frozen-mask.html">The Frozen Mask of Parkinson's</a> at: </strong></span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial"><strong><a href="http://katekelsall.typepad.com/my_weblog/2007/08/the-frozen-mask.html">http://katekelsall.typepad.com/my_weblog/2007/08/the-frozen-mask.html</a></strong></span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial"><strong /></span> </p>
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    <entry>
        <title>Dying with Parkinsons</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/7PWjchK60Qk/dying-with-parkinsons.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/08/dying-with-parkinsons.html" thr:count="3" thr:updated="2009-10-30T06:31:05-06:00" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e20120a542ed64970c</id>
        <published>2009-08-12T17:02:22-06:00</published>
        <updated>2009-08-12T17:09:58-06:00</updated>
        <summary>I’ve been avoiding the taboo subject of dying with Parkinson’s. However, a blog reader wrote me about her grandfather with advanced Parkinson’s and said, “No one has explained where he is at in his disease, what the next stage to...</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: Stages and Progression" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="Dying" />
        <category scheme="http://sixapart.com/ns/types#tag" term="End of Life Issues" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Progression" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Stages" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p><font size="4">I’ve been avoiding the taboo subject of dying with Parkinson’s.  However, a blog reader wrote me about her grandfather with advanced Parkinson’s and said, “No one has explained where he is at in his disease, what the next stage to be looking for, or how far he is from the last stage.”</font> 
<p><font size="4">I felt compelled to do some research. This is what I’ve discovered so far:</font> 
<p><strong><font size="4">Advanced Stages of Parkinson’s Disease</font></strong> 
<p><font size="4">Source: </font><a href="http://en.allexperts.com/q/Parkinson-s-Disease-2096/end-stages.htm"><font size="4">http://en.allexperts.com/q/Parkinson-s-Disease-2096/end-stages.htm</font></a> 
<p><strong><font size="4">Stage IV </font></strong>
<p><font size="4">· Severely disabled due to the tremor, rigidity and bradykinesia </font>
<p><font size="4">· Still mobile and able to act independently some times </font>
<p><font size="4">· Fluctuations, if present, are more severe and may at times be completely disabling </font>
<p><font size="4">· Dyskinesias, induced from levodopa therapy, may be prominent (including postural defects) </font>
<p><font size="4">· With advanced disease, some patients will complain of vague paresthesias and discomfort in the lower trunk, low back, and lower limbs. These are often secondary to rigidity and/or severe tremor. Better control of the parkinsonism through medication adjustments may improve these symptoms.<strong /></font> 
<p><strong><font size="4">Stage V </font></strong>
<p><font size="4">· Maximum degree of previous disabilities, including severe postural defects</font> 
<p><font size="4">· Independent mobility is impossible, usually bed-ridden</font> 
<p><font size="4">· Towards the end of the disease there is frequently a slow decrease in the volume of speech, accompanied by increasing dysarthria. Unrelated to the intellectual impairment commonly found in Parkinson's disease, there is the development of word-finding difficulty. Unfortunately, there is very little improvement with therapy.</font> 
<p><font size="4">In itself, Parkinson's is not a fatal condition. However, the end-stage of the disease can lead to pneumonia, choking, severe depression, and death. Sadly, many PD patients spend their last years confined to a Geri-Chair (a medical version of a recliner) with functions similar to an infant. They lose the ability to walk, to talk, to care for themselves, urinary and bowel control and even to turn themselves over in bed.</font> 
<p><font size="4">End Stage may include one, or a combination of the following: </font>
<p><font size="4">· Progressive decline despite medical therapies </font>
<p><font size="4">· Multiple hospitalizations/frequent ER visits (often due to falls)</font> 
<p><font size="4">· Agitation that is more difficult to control </font>
<p><font size="4">· Diminished functional status </font>
<p><font size="4">· Decreased appetite </font>
<p><font size="4">· Progressive weight loss </font>
<p><font size="4">· Increasing dyspnea (trouble breathing) </font>
<p><font size="4">· Dysphagia (trouble swallowing) </font>
<p><font size="4">· Recurrent infections</font> 
<p><font size="4">· Severe decline in mental status</font> 
<p><font size="4">· Eventually increased weakness, fatigue, drowsiness</font> 
<p>
<p><strong><font size="4" /></strong> 
<p><strong><font size="4">Websites on Stages of Parkinson’s Disease:</font></strong> 
<p><a href="http://www.pdcaregiver.org/StagesofParkinsons.html"><font size="4">http://www.pdcaregiver.org/StagesofParkinsons.html</font></a> 
<p><a href="http://www.pdcaregiver.org/Unified.html"><font size="4">http://www.pdcaregiver.org/Unified.html</font></a></p>
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    <feedburner:origLink>http://katekelsall.typepad.com/my_weblog/2009/08/dying-with-parkinsons.html</feedburner:origLink></entry>
    <entry>
        <title>Emails such as this make it all worthwhile</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/B-UjQrckLic/emails-such-as-this-make-it-all-worthwhile.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/08/emails-such-as-this-make-it-all-worthwhile.html" thr:count="0" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e20120a534c34e970c</id>
        <published>2009-08-09T21:25:54-06:00</published>
        <updated>2009-08-13T07:21:00-06:00</updated>
        <summary>Shannon, a young woman from Arkansas, found me on my blog. She wrote me about her mother with Parkinson's Disease who had poor DBS results. Shannon gave me permission to post her email as follows: August 7, 2009 Hi Kate,...</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: Deep Brain Stimulation/Programming" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="Deep Brain Stimulation" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Michael Okun" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial"><span style="COLOR: #c00000; FONT-FAMILY: Arial">Shannon, a young woman from Arkansas, found me on my blog. She wrote me about her mother with Parkinson's Disease who had poor DBS results.</span> </span>
<p><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial"><span style="COLOR: #c00000; FONT-FAMILY: Arial">Shannon gave me permission to post her email as follows:</span> </span>
<p><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial"><span style="COLOR: #c00000; FONT-FAMILY: Arial">August 7, 2009</span> </span>
<p><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial"><span style="COLOR: #c00000; FONT-FAMILY: Arial">Hi Kate,</span> </span>
<p><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial">I had to write today to tell you that because of your advice and encouraging words, my mother now has an appointment scheduled with Dr. Okun at the University of Florida.  We are beyond excited about the possibilities.  We are hopeful for good news and positive changes.  But we know that sometimes there is nothing more that can be done.  Whatever we find, at least we will know that we did everything possible to help my mother.  </span>
<p><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial">It has taken 3 months to go through her current neurologist for a recommendation, complete forms and write letters to the insurance company, and speak with the patient intake coordinator at the University of Florida.  But as of yesterday, she is scheduled for October 19<sup>th</sup> and 20<sup>th</sup>.  We will make our trip from Arkansas to Florida then.  Regardless of the results, we will be making memories with her and we will know (and she will know) that we are doing everything we can to make her life a better <span style="COLOR: #c00000; FONT-FAMILY: Arial">one.  </span></span>
<p><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial"><span style="COLOR: #c00000; FONT-FAMILY: Arial">Thank you so much for taking time back in May to respond to my email.  If it hadn’t been for your direction, I don’t believe that we would be planning a trip for October.  Again, thank you so much, and I will continue to keep you in my prayers as you live your life with PD as well.  I pray all the best for you!  And I pray that God bless you for blessing me and my family.</span> </span>
<p><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial"><span style="COLOR: #c00000; FONT-FAMILY: Arial">Shannon from Arkansas</span> </span>
<p><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial" />
<p><span style="COLOR: #c00000; FONT-FAMILY: Arial"><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial" /></span> 
<p><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial"><span style="COLOR: #c00000; FONT-FAMILY: Arial">May 11, 2009</span> </span>
<p><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial"><span style="COLOR: #c00000; FONT-FAMILY: Arial">Hi Shannon,</span> </span>
<p><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial"><span style="COLOR: #c00000; FONT-FAMILY: Arial">Your mother is blessed to have you as a daughter. You seem very caring. It must be difficult to see your mother going downhill so quickly.</span> </span>
<p><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial"><span style="COLOR: #c00000; FONT-FAMILY: Arial">I am writing this as a person who has had DBS. I have no medical background.</span> </span>
<p><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial"><span style="COLOR: #c00000; FONT-FAMILY: Arial">Generally, the DBS problems relate to the electrodes not being placed in the best location and/or improper programming. There is a shortage of competent programmers.</span> </span>
<p><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial"><span style="COLOR: #c00000; FONT-FAMILY: Arial">It seems like your mother could benefit from a second opinion. If I was in your situation, I would become a member of the free Yahoo DBS surgery group by sending them an email of introduction (something similar to what you sent me).</span> </span>
<h6><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial" /></h6>
<p><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial">To subscribe: </span><a href="mailto:DBSsurgery-subscribe@yahoogroups.com"><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial">DBSsurgery-subscribe@yahoogroups.com</span></a><span style="COLOR: #c00000; FONT-FAMILY: Arial" />
<p><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial"><span style="COLOR: #c00000; FONT-FAMILY: Arial">This group has 1000+ members, many of them who are extremely knowledgeable and caring. They may be able to suggest where you might go for a second opinion/consultation.</span> </span>
<p><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial"><span style="COLOR: #c00000; FONT-FAMILY: Arial">My friend, Valerie, struggled for four years with programming problems, but once she found the right programmer, her life dramatically changed for the better.</span> </span>
<p><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial"><span style="COLOR: #c00000; FONT-FAMILY: Arial">Please let me know how you decide to proceed and the outcome. Don't give up on your mother yet.</span> </span>
<p><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial"><span style="COLOR: #c00000; FONT-FAMILY: Arial">All the best to you and your family,</span> </span>
<p><span style="FONT-SIZE: 15px; COLOR: #c00000; FONT-FAMILY: Arial">Kate from Colorado</span></p>
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    <feedburner:origLink>http://katekelsall.typepad.com/my_weblog/2009/08/emails-such-as-this-make-it-all-worthwhile.html</feedburner:origLink></entry>
    <entry>
        <title>If I Didn't Have a Dog or a Cat</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/pHtfYSsmHCg/if-i-didnt-have-a-dog-or-a-cat.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/08/if-i-didnt-have-a-dog-or-a-cat.html" thr:count="0" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e20120a4dc02dd970b</id>
        <published>2009-08-09T12:17:34-06:00</published>
        <updated>2009-08-09T23:00:56-06:00</updated>
        <summary>Author: Unknown I could safely walk around the yard barefoot. My house could be carpeted instead of tiled and laminated. All flat surfaces, clothing, furniture, and cars would be free of hair. When the doorbell rings, it wouldn't sound like...</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Topic-Other: Animal Stories" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="cats" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Dogs" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p><font color="#0000ff" face="Arial">Author: Unknown</font> 
<p><font color="#0000ff" face="Arial" size="5"><a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a4dc025c970b-pi"><img alt="If I didn't have a dog or a cat-1" border="0" height="171" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a53311c1970c-pi" style="BORDER-TOP-WIDTH: 0px; BORDER-LEFT-WIDTH: 0px; BORDER-BOTTOM-WIDTH: 0px; WIDTH: 229px; HEIGHT: 148px; BORDER-RIGHT-WIDTH: 0px" width="252" /></a> I could safely walk around the yard barefoot.</font></p>
<p><font color="#0000ff" face="Arial" size="5" /></p>
<p><font color="#0000ff" face="Arial" size="5">My house could be carpeted instead of tiled and laminated. </font></p>
<p><font color="#0000ff" face="Arial" size="5">All flat surfaces, clothing, furniture, and cars would be free of hair. </font></p>
<p><font color="#0000ff" face="Arial" size="5">When the doorbell rings, it wouldn't sound like a kennel. </font></p>
<p><font color="#0000ff" face="Arial" size="5" /> </p>
<blockquote>
<p style="TEXT-ALIGN: center"><font color="#0000ff" face="Arial" size="5"><a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a4dc0276970b-pi"><img alt="If I didn't have a dog or a cat-2" border="0" height="288" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a53311d7970c-pi" style="BORDER-TOP-WIDTH: 0px; BORDER-LEFT-WIDTH: 0px; BORDER-BOTTOM-WIDTH: 0px; BORDER-RIGHT-WIDTH: 0px" width="428" /></a> </font></p></blockquote>
<p><font color="#0000ff" face="Arial" size="5">When the doorbell rings, I could get to the door without wading through fuzzy bodies that beat me there. </font></p>
<p><font color="#0000ff" face="Arial" size="5">I could sit on the couch and my bed the way I wanted, without taking into consideration how much space several fur bodies would need to get comfortable. </font></p>
<p><font color="#0000ff" face="Arial" size="5">I would have money and no guilt to go on a real vacation. </font></p>
<p><font color="#0000ff" face="Arial" size="5">I would not be on a first-name basis with six veterinarians, as I put their yet unborn grand kids through college.</font></p>
<p><font color="#0000ff" face="Arial" size="5" /> </p>
<blockquote>
<p><a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a53311dd970c-pi"><img alt="If I didn't have a dog or a cat-3" border="0" height="225" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a53311e4970c-pi" style="BORDER-TOP-WIDTH: 0px; BORDER-LEFT-WIDTH: 0px; BORDER-BOTTOM-WIDTH: 0px; BORDER-RIGHT-WIDTH: 0px" width="350" /></a> </p></blockquote>
<p><font color="#0000ff" face="Arial" size="5">The most used words in my vocabulary would not be: out, sit, down, come, no, stay, and leave him/her/it ALONE. </font></p>
<p><font color="#0000ff" face="Arial" size="5">My house would not be cordoned off into zones with baby gates or barriers. </font></p>
<p><font color="#0000ff" face="Arial" size="5">I would not talk 'baby talk': 'Eat your din din' 'Yummy yummy for the tummy'.</font></p>
<p><font color="#0000ff" face="Arial" size="5">My house would not look like a day care center, toys everywhere. </font></p>
<p><font color="#0000ff" face="Arial" size="5">My pockets would not contain things like poop bags, treats and an extra leash. </font></p>
<blockquote>
<p style="TEXT-ALIGN: center"><a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a53311f9970c-pi"><img alt="If I didn't have a dog or a cat-4" border="0" height="272" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a5331205970c-pi" style="BORDER-TOP-WIDTH: 0px; BORDER-LEFT-WIDTH: 0px; BORDER-BOTTOM-WIDTH: 0px; BORDER-RIGHT-WIDTH: 0px" width="362" /></a> </p></blockquote>
<p><font color="#0000ff" face="Arial" size="5">I would no longer have to spell the words B-A-L-L, F-R-I-S-B-E- E, W-A-L-K, T-R-E-A-T, B-I-K-E, G-O, R-I-D-E. </font></p>
<p><font color="#0000ff" face="Arial" size="5">I would not have as many leaves (or pine needles) INSIDE my house as outside. </font></p>
<p><font color="#0000ff" face="Arial" size="5">I would not look strangely at people who think having ONE dog/cat ties them down too much.</font></p>
<p><font color="#0000ff" face="Arial" size="5">I'd look forward to spring and the rainy season instead of dreading 'mud' season. </font></p>
<p style="TEXT-ALIGN: right"><a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a4dc02b7970b-pi"><img alt="If I didn't have a dog or a cat-5" border="0" height="236" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a4dc02d8970b-pi" style="BORDER-TOP-WIDTH: 0px; BORDER-LEFT-WIDTH: 0px; BORDER-BOTTOM-WIDTH: 0px; BORDER-RIGHT-WIDTH: 0px" width="343" /></a> </p>
<p><font color="#0000ff" face="Arial" size="5">I would not have to answer the question 'Why do you have so many animals?' from people who will never have the joy in their lives of knowing they are loved unconditionally by someone as close to an angel as they will ever get. </font></p>
<p><font color="#0000ff" face="Arial" size="5">How EMPTY my life would be!!!</font> 
<p>
<p><font size="5" /><font face="Arial" /><span style="FONT-SIZE: 18px; FONT-FAMILY: Arial"><font color="#0000ff">“Until one has loved an animal, part of their soul remains unawakened.” Quote by Anatole France</font></span></p>
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    <feedburner:origLink>http://katekelsall.typepad.com/my_weblog/2009/08/if-i-didnt-have-a-dog-or-a-cat.html</feedburner:origLink></entry>
    <entry>
        <title>Once a Tiger</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/Eixsf7U9LxE/once-a-tiger.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/08/once-a-tiger.html" thr:count="0" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e20120a4d6cb1b970b</id>
        <published>2009-08-08T07:56:13-06:00</published>
        <updated>2009-08-19T10:56:29-06:00</updated>
        <summary>Part of my diverse career path an accountant (CPA) and social worker (MSW) was working as an office manager in an GYN Oncology Clinic. I am the rare accountant who loves helping patients (or the social worker who tolerates numbers)....</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Topic-Other: Non Parkinson's Disease" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="Tiger" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p><font size="4">Part of my diverse career path an accountant (CPA) and social worker (MSW) was working as an office manager in an GYN Oncology Clinic. I am the rare accountant who loves helping patients (or the social worker who tolerates numbers). But that's another story...</font> 
<p><font size="4">In late summer in the 1990s, I receive a phone call at work. Instead of "hello" there is a sob on the other line. I know it is important. I strain to understand some of the words beneath the crying. I piece it together, bit by bit. A woman's voice says she's calling from her OB-GYN office in the suburbs of Denver. A few minutes earlier, she finds out the results of her annual medical exams. It indicates she has ovarian cancer. She is shocked and needs to see an oncologist. She is the same age as me.</font> 
<p><font size="4">I ask her about her insurance to determine if she can see the oncologist and if surgery is required, if her insurance covers the surgery at the hospital where it will be performed. Her insurance doesn't cover the oncologist, the surgery or the hospital. I reluctantly inform her about this. She replies that she wants to see the specific oncologist, specific surgeon at the specific hospital. I suggest the option of scheduling an evaluation within the next couple of days, and in the meantime, I will contact her insurance company. </font>
<p><font size="4">She arrives for the evaluation two days later with a large tumor, yet a smile on her face. Somehow I convince the insurance company of the urgency of her request and the need for them to pay for the evaluation, the oncologist and if surgery is required, to pay for the surgeon and the hospital even though the patient's policy does not cover this group of doctors or hospital.</font> 
<p><font size="4">The results of her evaluation reveal that she does indeed have advanced stage ovarian cancer, the type of cancer where patients don't normally live five years after diagnosis. Surgery is scheduled within the next few days.</font> 
<p><font size="4">***</font> 
<p><font size="4">When I met the patient about eight years later, she informed me that she was doing well and that she will never forget her phone call to me when she found out about her diagnosis and my warm response.</font> 
<p><font size="4">Her parting words were "When I asked my OB-GYN if I should help with the insurance issue, she said "No, stand back and let Kate do what she does best. She's a tiger."</font> 
<p><font size="4">I smiled knowing that I once was a tiger and that I had helped.</font>   </p>
<p style="TEXT-ALIGN: right"><a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a4d6cfe3970b-pi" style="DISPLAY: inline"><img alt="Tonytiger-1" border="0" class="at-xid-6a00d83451c95969e20120a4d6cfe3970b " src="http://katekelsall.typepad.com/.a/6a00d83451c95969e20120a4d6cfe3970b-800wi" title="Tonytiger-1" /></a></p>
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    <feedburner:origLink>http://katekelsall.typepad.com/my_weblog/2009/08/once-a-tiger.html</feedburner:origLink></entry>
    <entry>
        <title>More on Bicycling with Parkinson's</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/LIlyudEl1lY/more-on-bicycling-with-parkinsons.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/07/more-on-bicycling-with-parkinsons.html" thr:count="0" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e2011571289248970c</id>
        <published>2009-07-20T17:01:52-06:00</published>
        <updated>2009-07-20T17:08:57-06:00</updated>
        <summary>Check out today's story on ABC News: New Parkinson's Treatment on Two Wheels Related Stories: Pedaling Past Parkinson's Pedal Power</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: Exercise" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="bicycling" />
        <category scheme="http://sixapart.com/ns/types#tag" term="bikinh" />
        <category scheme="http://sixapart.com/ns/types#tag" term="exercise" />
        <category scheme="http://sixapart.com/ns/types#tag" term="forced exertion" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Jay Alberts" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease" />
        <category scheme="http://sixapart.com/ns/types#tag" term="tandem bicycling" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p><font size="4">Check out today's story on ABC News:</font></p>
<h3><a href="http://abcnews.go.com/GMA/OnCall/Story?id=8109965&amp;page=1">New Parkinson's Treatment on Two Wheels</a> </h3>
<p><font size="4"><strong /></font> </p>
<p><font size="4"><strong>Related Stories:</strong> </font></p>
<p><font size="4"><a href="http://katekelsall.typepad.com/my_weblog/2007/06/pedaling-past-p.html">Pedaling Past Parkinson's</a></font></p>
<p><font size="4"><a href="http://katekelsall.typepad.com/my_weblog/2008/09/pedal-power.html">Pedal Power</a></font></p><xhtml:img xmlns:xhtml="http://www.w3.org/1999/xhtml" src="http://feeds.feedburner.com/~r/ShakeRattleAndRoll/~4/LIlyudEl1lY" height="1" width="1" /></div></content>


    <feedburner:origLink>http://katekelsall.typepad.com/my_weblog/2009/07/more-on-bicycling-with-parkinsons.html</feedburner:origLink></entry>
    <entry>
        <title>Brainy or Brawny?</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/1WdvTd4rmAI/brainy-or-brawny.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/07/brainy-or-brawny.html" thr:count="0" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e2011572194c10970b</id>
        <published>2009-07-19T13:45:58-06:00</published>
        <updated>2009-07-20T11:00:17-06:00</updated>
        <summary>My biggest fear is being perceived as stupid. I'll take brains over brawn any day. Like others with Parkinson's Disease who are well-educated and value their intelligence, my stomach churns when I even contemplate taking a neuropsychological exam. What if...</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: Neurology Appointments/Neuropsych Exams" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="Mini Mental State Exam" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Montreal Cognitive Assessment" />
        <category scheme="http://sixapart.com/ns/types#tag" term="neuropsychological exams" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p><font face="Arial" size="4">My biggest fear is being perceived as stupid. I'll take brains over brawn any day. </font></p>
<p><font face="Arial" size="4">Like others with Parkinson's Disease who are well-educated and value their intelligence, my stomach churns when I even contemplate taking a neuropsychological exam. What if I'm not as smart as I thought I was?  What if I've already begun the slippery slope toward cognitive decline?</font></p>
<p><font face="Arial" size="4">When I'm worried about losing my marbles, I reduce my anxiety by taking neuropsychological practice exams. After all, practice makes perfect, or as close to it as possible for a Parkinson's patient. Two of my favorites found online are:</font></p>
<p><font face="Arial" size="4">Mini-Mental State Exam at: </font><a href="http://mhosinc.com/Mini%20Health%20Exam.pdf" title="http://mhosinc.com/Mini%20Health%20Exam.pdf"><font face="Arial" size="4">http://mhosinc.com/Mini%20Health%20Exam.pdf</font></a><font face="Arial" size="4">  There are three versions instead of one version, to prevent the learning effect of someone like me taking it over and over again.</font></p>
<p><font face="Arial" size="4">Montreal Cognitive Assessment at: </font><a href="http://www.mocatest.org/" title="http://www.mocatest.org/"><font face="Arial" size="4">http://www.mocatest.org/</font></a></p>
<p><font face="Arial" size="4">Good luck with your practicing to become the perfect Parkinson's patient.</font></p>
<p><font face="Arial" size="4" /> </p>
<p><font face="Arial" size="4">For more of my stories on neurology appointments and  neuropsychological exams, check out: </font><a href="http://katekelsall.typepad.com/my_weblog/parkinsons_neurology_appointmentsneuropsy_exams/" title="http://katekelsall.typepad.com/my_weblog/parkinsons_neurology_appointmentsneuropsy_exams/"><font face="Arial" size="4">http://katekelsall.typepad.com/my_weblog/parkinsons_neurology_appointmentsneuropsy_exams/</font></a></p><xhtml:img xmlns:xhtml="http://www.w3.org/1999/xhtml" src="http://feeds.feedburner.com/~r/ShakeRattleAndRoll/~4/1WdvTd4rmAI" height="1" width="1" /></div></content>


    <feedburner:origLink>http://katekelsall.typepad.com/my_weblog/2009/07/brainy-or-brawny.html</feedburner:origLink></entry>
    <entry>
        <title>Midnight Musings of the Wannabe Dancer</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/u-ruKl2m_QE/midnight-musings-of-the-wannabe-dancer.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/07/midnight-musings-of-the-wannabe-dancer.html" thr:count="0" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e2011571fda0a7970b</id>
        <published>2009-07-13T09:57:19-06:00</published>
        <updated>2009-09-18T21:17:10-06:00</updated>
        <summary>I’ve been pondering Olie Westheimer’s question about what is unique about dance (versus exercise) that makes it so beneficial to those of us with Parkinson’s Disease. The following are some random thoughts about why I prefer dancing with the Rockyettes...</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: Dance" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="Dance" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Rockyettes" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p><font size="4">I’ve been pondering Olie Westheimer’s question about what is unique about dance (versus exercise) that makes it so beneficial to those of us with Parkinson’s Disease.</font> 
<p><font size="4">The following are some random thoughts about why I prefer dancing with the Rockyettes over other forms of exercise for the management of my Parkinson’s symptoms.</font> 
<p><strong><font size="4">Methods:</font></strong> 
<p><font size="4">As a former CPA, let’s face it: I dance and think like an accountant. I do what I do best: spreadsheets. I create a 3 column spreadsheet for each new dance that I learn.</font> 
<p><font size="4">1st column: lyrics</font> 
<p><font size="4">2nd column: written dance steps </font>
<p><font size="4">3rd column: graphic (clip art) that depicts the step</font> 
<p><font size="4">By using all of the above methods– lyrics, written steps, graphics – I am more likely to remember.</font> 
<p><font size="4"><strong>Self-Cueing: </strong>In addition, I use self-cuing to remember the steps and sequences. Certain words in the lyrics and certain musical instruments in the songs remind me that I should be at a certain place in the dance. Also, I make up names to remind myself of the step. For example, one step reminds me of the Statute of Liberty, and I name it as such. Another dancer names a step "shaking the laundry" because it reminds her of that.</font> 
<p><font size="4">My class is made up of many retired teachers who have helped their students learn by creative methods, using all of their senses.</font> 
<p><font size="4"><strong>Focus:</strong> Dance helps me to focus and concentrate. It is important to focus on the current dance step/sequence while at the same time asking myself what step comes next. It's a form of multitasking, which most of us with Parkinson’s struggle with.</font> 
<p><font size="4"><strong>Visualization:</strong> Once I've learned a dance fairly well, I use mental rehearsal to solidify what I learned. Before bed, I visualize in my mind the entire dance with accompanying music. This only works if I already know the dance, otherwise I'm rehearsing errors in the movies of my mind.</font> 
<p><font size="4"><strong>Psychological Benefits:</strong> Dancing and depression/apathy are incompatible. It's impossible for me to be depressed while dancing. In class, our focus is on dance, not personal problems. </font>
<p><font size="4"><strong>Power of the Group:</strong> Most of the Rockyettes are in their 60s and 70s. It appears that out of the 50 dancers, I am the only one with Parkinson’s, while some of the other dancers are dealing with serious health issues, e.g., cancer, rods in backs, etc. We see ourselves as dancers, not patients. </font>
<p><font size="4">With the focus being on dance, I never think or feel like I have Parkinson’s when I dance. People tell me that they don't observe my Parkinson’s symptoms when I dance.</font> 
<p><font size="4">The experience that I have practicing my dance with the video at home in the basement is entirely different from dancing with the group in the dance studio. Any feelings of loneliness and isolation dissipate immediately when I enter the dance studio.</font> 
<p><font size="4">Also, not wanting to let down the other dancers motivates me to learn the dances.</font> 
<p><font size="4"><strong>Performing:</strong> One of the reasons that I joined the Rockyettes was because the group frequently performs at different retirement communities and at various events (including my upcoming sweet 60th birthday party in October).  For someone with strong performance needs such as me, dancing provides the perfect outlet. It is rewarding to dance to appreciative audiences, and we are inspired to keep on dancing.</font> 
<p><font size="4"><a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e2011571fda07a970b-pi"><img alt="Rockyettes Group Photo 2009" border="0" height="314" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e201157108e321970c-pi" style="BORDER-TOP-WIDTH: 0px; BORDER-LEFT-WIDTH: 0px; BORDER-BOTTOM-WIDTH: 0px; BORDER-RIGHT-WIDTH: 0px" width="437" /></a> </font>
<p><font size="4"><span style="FONT-SIZE: 16px; FONT-FAMILY: Arial">I’m in the front row, last person on the right.<span style="FONT-SIZE: 9px; FONT-FAMILY: Arial" /></span></font></p>
<div><span style="FONT-SIZE: 16px; FONT-FAMILY: Arial" /> </div>
<div><span style="FONT-SIZE: 16px; FONT-FAMILY: Arial"><strong>One more thing about Parkinson's and dance...</strong></span></div>
<div><span style="FONT-SIZE: 16px; FONT-FAMILY: Arial" /> </div>
<div><span style="FONT-SIZE: 17px; FONT-FAMILY: Arial">From my dance classes and performances, I've learned flexibility in terms of attitude.</span></div>
<div><span style="FONT-SIZE: 17px; FONT-FAMILY: Arial" /> </div>
<div><span style="FONT-SIZE: 17px; FONT-FAMILY: Arial">Flexibility re:</span></div>
<div><span style="FONT-SIZE: 17px; FONT-FAMILY: Arial" /> </div>
<div><span style="FONT-SIZE: 17px; FONT-FAMILY: Arial">How to handle when the dance teacher says, "subject to change" when learning a new dance piece. My response is always, "We're flexible."</span></div>
<div><span style="FONT-SIZE: 17px; FONT-FAMILY: Arial" /> </div>
<div><span style="FONT-SIZE: 17px; FONT-FAMILY: Arial">How to handle when a dancers fails to show up at the performance and all of a sudden you have a new dance partner and a new place in the line up.</span></div>
<div><span style="FONT-SIZE: 17px; FONT-FAMILY: Arial" /> </div>
<div><span style="FONT-SIZE: 17px; FONT-FAMILY: Arial">How to handle dancing on a diagonal.</span></div>
<div><span style="FONT-SIZE: 17px; FONT-FAMILY: Arial" /> </div>
<div><span style="FONT-SIZE: 17px; FONT-FAMILY: Arial">How to handle entering/exiting on stage right when you have always practiced entering/exiting at stage left or vice-versa.</span></div>
<div><span style="FONT-SIZE: 17px; FONT-FAMILY: Arial" /> </div>
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    <feedburner:origLink>http://katekelsall.typepad.com/my_weblog/2009/07/midnight-musings-of-the-wannabe-dancer.html</feedburner:origLink></entry>
    <entry>
        <title>Parkinson's Dancers Focus on Dance, Not Disease</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/IY0YHQ5aC6g/parkinsons-dancers-focus-on-dance-not-disease.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/07/parkinsons-dancers-focus-on-dance-not-disease.html" thr:count="3" thr:updated="2009-09-14T17:04:38-06:00" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e2011570b96cc2970c</id>
        <published>2009-07-03T10:22:45-06:00</published>
        <updated>2009-07-03T11:21:42-06:00</updated>
        <summary>You’re not going to observe any signs of apathy or depression in these Parkinson's dancers in Colorado Springs and Brooklyn. In fact, even talking about Parkinson’s Disease is forbidden in their dance classes. Their focus is on dance, not disease....</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: Dance" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="Barbara Willis" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Dance" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Exercise" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Margaret Schenkman" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Ollie Westheimer" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's Disease" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><h3><em>You’re not going to observe any signs of apathy or depression in these Parkinson's dancers in Colorado Springs and Brooklyn. In fact, even talking about Parkinson’s Disease is forbidden in their dance classes. Their focus is on dance, not disease. </em><em>Check out the following story:</em></h3>
<h3>Controlled Moves</h3>
<p><span style="FONT-SIZE: 15px; FONT-FAMILY: Arial" /><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">
<div class="sub-title"><span style="FONT-SIZE: 13px; FONT-FAMILY: Arial"><strong><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial"><span class="source"><font color="#666666">Story from: New Bern Sun Journal</font></span> - by <span class="author-link"><a href="http://www.typepad.com/news?pz=1&amp;ned=us&amp;hl=en&amp;q=author%3A%22Brian+Newsome%22&amp;scoring=n"><font color="#7777cc">Brian Newsome</font></a></span> - <span class="date">‎June 27, 2009‎</span></span></strong></span></div>
<div class="sub-title"><span class="date"><a href="http://www.newbernsj.com/articles/disease-46186-parkinson-willis.html">http://www.newbernsj.com/articles/disease-46186-parkinson-willis.html</a></span></div>
<div class="sub-title"><span class="date" /> </div>
<div class="sub-title"><span class="date">Colorado Springs, Colorado - </span> Barbara Willis moves with the steady grace you might expect from someone who's taught dance for decades.</div></span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Her eyes are closed, and she seems lost in the music.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Her moves are slow and purposeful. She tells the class to take deep breaths and reach upward.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">The five students, a hodgepodge of elderly and middle-aged men and women, sit in folding chairs and do exactly as she says.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">"It's amazing how, if you have a tremor, it will disappear during this song," Willis, 73, tells them. "These moves are difficult for us, but the music overcomes it."</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Two things have brought them together in this mirrored studio in southwest Colorado Springs: Parkinson's disease, and a belief that dancing and movement can help fight it.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">For an hour each week, they march, they balance, they dance back and forth to music, all with the idea that they can use movement to combat a disease infamous for taking it away. Some of their caregivers also participate.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">"Parkinson's wants to take you and fold you in half and never let you go," Willis says, as the students prepare to stand beside their chairs and lift one leg off the ground.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Every move is a way to slowly unfold again.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Willis' class, held at Spectrum Wellness and Rehabilitation Center, was born out of her personal experience with the disease.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">A dancer since her youth, she was diagnosed in 1999.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">She consulted a hand surgeon when writing became difficult. He sent her to a neurologist who immediately suspected Parkinson's.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">For someone who'd built so much of her life around movement, getting diagnosed with a disease made famous for robbing people of mobility was an especially cruel blow.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">She decided to keep dancing, if for no other reason than to preserve her peace of mind. To her surprise, the sessions seemed to help with the symptoms.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">She had better balance, better posture and more smoothness in her motion.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Her neurologist, impressed with her progress, urged her to start a class for others.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Unknown to her, a similar program was taking place in Brooklyn, N.Y.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Eight years ago, Olie Westheimer, a dancer married to a prominent Parkinson's researcher, started a Parkinson's support group in Brooklyn to help her husband in his job.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Westheimer was looking for activities to help patients get their minds off the disease when she learned that the world-famous Mark Morris Dance Group had moved to town.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">She called to see whether the group would be interested in hosting her support group.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">The program has been featured in the national media and has become a model that's led to startup programs worldwide, Westheimer said.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">The idea began with a love of dance, but, like Willis, she quickly began to realize its benefit as a kind of therapy.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">"The aim of the class is to try to move as beautifully as you can."</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">"It sounds crazy, but it works," Westheimer said.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Willis' students have said they are able to move a little more freely during and after their classes. But anecdotes don't go far in science, and researchers are in the early stages of exploring how movement and exercise affect the disease.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">One such researcher is Margaret Schenkman of the University of Colorado at Denver and Health Sciences Center, who is leading a study to examine a variety of exercises for differences in their effectiveness against Parkinson's.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Previous studies have shown exercise to be beneficial to Parkinson's patients, she said, but whether that's because it somehow helps repair the brain or simply compensates for the disease's deficits is a mystery. Some animal studies have linked exercise with reversing the progression of the disease, but what happens in animals doesn't always prove true in humans.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Her study is at least a year away from completion.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Willis, a retired nurse who worked in neurology, and Westheimer are both well-versed in science, as well as dance, and they say the intersection of performing arts and Parkinson's is not as strange as it might seem at first.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Dance, they say, requires an intense focus on movement, balance, vision and a number of other techniques you might find in a physical therapy session.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">"You'd never have a dancer saying, ‘Oh, I use cognitive strategies to dance,'" said Westheimer, but that's exactly what they're doing</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">"Science is now beginning to understand what dancers know."</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Willis said the "mindfulness" of dance and the power of music add something that other exercise does not.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Dr. Brian Grabert, a neurologist at Colorado Springs Health Partners, treats about 200 Parkinson's patients, including Willis and some people involved in her dance program.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">In general, he said, those who exercise appear more upbeat and less apathetic, and they tend to report having fewer falls, one of the most serious consequences of the disease as it progresses.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">There's one thing that Parkinson's patients find in these classes that they can't find in a doctor's office or rehab session: fun.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial"><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Ric Pfarrer, 55, a financial planner and president of a Parkinson's support group, attends Willis' class. He</span> said the chance to come together and have a good time with patients going through the same thing can be as valuable as any physical benefit.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">That's a sentiment shared by many others.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Peggy Robinson, 60, said, "I like feeling like I'm not all alone."</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">At Westheimer's classes, in fact, talk about Parkinson's is not allowed because the emotional escape is one of its strengths. "There's no problem talked about in our class," she said. "We're just dancing."</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Considering that 80 percent of Parkinson's sufferers have experienced bouts of depression and report feeling isolated, that's nothing to take lightly.</span></p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Grabert said apathy is one of the most common mood disorders associated with the disease, but that's not something he's seen in Willis and other Parkinson's patients who dance. </span></p></p><xhtml:img xmlns:xhtml="http://www.w3.org/1999/xhtml" src="http://feeds.feedburner.com/~r/ShakeRattleAndRoll/~4/IY0YHQ5aC6g" height="1" width="1" /></div></content>


    <feedburner:origLink>http://katekelsall.typepad.com/my_weblog/2009/07/parkinsons-dancers-focus-on-dance-not-disease.html</feedburner:origLink></entry>
    <entry>
        <title>Choosing the Best DBS Programmer for You</title>
        <link rel="alternate" type="text/html" href="http://feedproxy.google.com/~r/ShakeRattleAndRoll/~3/8qSiYYEI1c4/choosing-the-best-dbs-programmer-for-you.html" />
        <link rel="replies" type="text/html" href="http://katekelsall.typepad.com/my_weblog/2009/06/choosing-the-best-dbs-programmer-for-you.html" thr:count="0" />
        <id>tag:typepad.com,2003:post-6a00d83451c95969e20115709bb8bc970c</id>
        <published>2009-06-30T10:21:39-06:00</published>
        <updated>2009-06-30T12:10:13-06:00</updated>
        <summary>You wouldn’t consider having your Mercedes (or in my case, an old Honda Civic) serviced by an unlicensed auto mechanic. Source: www.mchumor.com/car_repair1_bframe.html You wouldn’t purchase a million dollar home and let the weeds grow wild. The same is true for...</summary>
        <author>
            <name>Kate Kelsall</name>
        </author>
        <category scheme="http://www.sixapart.com/ns/types#category" term="Parkinson's: Deep Brain Stimulation/Programming" />
        
        <category scheme="http://sixapart.com/ns/types#tag" term="DBS" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Deep brain stimulation" />
        <category scheme="http://sixapart.com/ns/types#tag" term="Parkinson's disease" />
        <category scheme="http://sixapart.com/ns/types#tag" term="programming" />
        
<content type="xhtml" xml:lang="en-US" xml:base="http://katekelsall.typepad.com/my_weblog/"><div xmlns="http://www.w3.org/1999/xhtml"><p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">You wouldn’t consider having your Mercedes (or in my case, an old Honda Civic) serviced by an unlicensed auto mechanic. </span><a href="http://katekelsall.typepad.com/.a/6a00d83451c95969e2011571923f93970b-pi" style="DISPLAY: inline"><img alt="7481_medical_cartoon" border="0" class="at-xid-6a00d83451c95969e2011571923f93970b image-full " height="1043" src="http://katekelsall.typepad.com/.a/6a00d83451c95969e2011571923f93970b-800wi" style="WIDTH: 709px; HEIGHT: 911px" title="7481_medical_cartoon" width="800" /></a>  </p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Source: </span><a href="http://www.mchumor.com/car_repair1_bframe.html"><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">www.mchumor.com/car_repair1_bframe.html</span></a><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial" /> </p>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">You wouldn’t purchase a million dollar home and let the weeds grow wild. </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">The same is true for brain surgery. Finding a competent neurosurgeon to perform your Deep Brain Stimulation (DBS) surgery is only half the battle. It is equally important to have an experienced DBS programmer, one who is willing to work with you to maximize the benefits and minimize the side effects of DBS. </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Although there are no “correct” answers to the following questions and no standard minimum training requirements for DBS programmers, the responses will give you some idea of the experience and training of your prospective programmer. </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial"><strong>*Checklist for Interviewing DBS Programmers</strong> </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">What is your level of medical training (e.g., neurologist, nurse, physician assistant)? </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">When and where were you trained in programming? </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">How long was your DBS training program? </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">When and where did you begin programming? </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Have you had any additional programming training or attended any optional programming seminars? </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">What scientific literature do you read on DBS and programming? </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">How many patients have you programmed? </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">How many patients are you currently programming? </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Do you work under a supervising physician? If so, what is your supervisor's name? </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">With the understanding that every patient is different, on average, how many times do you see a patient before you feel that his or her programming is complete? </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">What would you do if you encountered an emergency situation while programming? </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">What kind of patient do you consider having a complicated programming situation? What have you done when programming such a patient? </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">What kind of follow-up have you provided to your programming patients, e.g., neurological evaluations, wire and battery checks, etc.? </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">What is the significance of medication adjustments post DBS? </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">* Some of the above questions were adapted from the book, <em>Life with a Battery-Operated Brain: A Patient’s Guide to Deep Brain Stimulation Surgery for Parkinson’s Disease</em> by Jackie Hunt Christensen at </span><a href="http://www.lifewithbobbook.com/"><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">http://www.lifewithbobbook.com/</span></a><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">. </span>
<p><span style="FONT-SIZE: 14px; FONT-FAMILY: Arial">Obviously, someone has to be the first patient to be programmed by a new programmer. It’s up to you to decide if that patient will be you.</span></p>
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