Shake, Rattle and Roll

Dyanmic Duo Develop Group for Recently Diagnosed

2010-01-06T09:17:22-07:00

It is May of 1996, two days after I was diagnosed with Parkinson's Disease at the age of 46. My husband, Tom and I arrive early at a young-onset PD support group. People who we assumed were our age arrive -- limping, some struggling to be ambulatory with walkers, others in wheelchairs who had long given up dreams of walking, and one person even arriving on a stretcher.

I don't remember one word spoken at that meeting. However, the feeling that has remained permanently etched for nearly 14 years. -- horror. We freaked out. We had nightmares for three nights. If this is what young-onset PD looked like, how could normal or late-onset possibly look worse? We wanted no part of any onset PD.

That was the one and only support group meeting that we attended for 10 years. Even though I was a young-onset person with PD, what we desperately needed at that time was a support group for the recently diagnosed.

Nearly 14 years later, a dynamic duo from Denver emerges. Diane Cook and Betsy Vierck are facilitating a group for the recently diagnosed. Both are newly diagnosed with PD. Diane is a management consultant and Betsy is a medical writer.

We wish them well in their new endeavor I only wish there was a Diane/Betsy team around when I was diagnosed.

Conquerng Constipation

2009-12-31T12:09:25-07:00

Constipation is a topic that we are embarrassed to talk about. We are likely to suffer from it if we have Parkinson’s Disease (PD). In fact, it is sometimes one of the earliest signs of PD as indicated in the following study: http://www.nlm.nih.gov/medlineplus/news/fullstory_92521.html

I am not afraid to tackle this topic and have done so in a previous article, Getting the Poop on Parkinson’s at: http://katekelsall.typepad.com/my_weblog/2008/01/getting-the-poo.html

When I asked Kathrynne Holden, an expert on PD and food, nutrition and constipation, about the safety of an over-the-counter laxative called MiraLAX^®her she responded as follows:

“Although it’s best to control constipation with fiber, fluids, and exercise, sometimes that’s not possible. If not, then it’s better to use MiraLAX^® than to risk bowel impaction.

MiraLAX^® was developed for constipation due to slowed peristalsis of the colon, and is generally the best choice for those with PD.

I would still choose high-fiber foods and be certain to take in plenty of fluids daily. Also, as much exercise as is possible will help to stimulate peristalsis. Here is a recipe used in many hospitals which has been helpful for quite a number of folks with PD:

Prune Juice Cocktail for Constipation

For people with frequent constipation, a safe and effective remedy is the "prune juice cocktail," a preparation used in many hospitals.

½ cup unsweetened applesauce
4 tablespoons wheat bran
6 ounces prune juice

Mix well, and store in refrigerator. Take a tablespoonful a day at first, gradually adding more if needed, until you find the amount that works well for you. The bran helps keep the stool bulky and soft, the prune juice contains a natural laxative, and the applesauce gives a palatable taste and texture. Aim for 25 - 40 grams of fiber in the daily diet, and drink 6-8 glasses of fluid daily. It may be helpful to also have a serving of 4-6 stewed prunes 2-4 times per week, for added fiber and additional
natural laxative.

This recipe makes about 10 fluid ounces total. The nutrients for the entire recipe are as follows:
209 calories
6 grams fat
3 grams protein
54 grams carbohydrates
10 grams fiber
22 grams total sugars

The nutrients per serving will depend upon how much is taken at a time. One ounce (about two tablespoons), will be about:20 calories, 5 grams carbohydrate, 1 gram fiber, and 2 grams total sugars.”

Kathrynne Holden, MS

For a Parkinson Tip of the Day and Kathrynne Holden’s website, visit: http://www.nutritionucanlivewith.com/

Music Provides a Break from the Sting of Homelessness

2009-12-23T09:07:14-07:00

I glance up from playing my accordion and smile. I’m haunted by the expressionless eyes of the crowd at the dinner for the homeless, an annual event in downtown Denver that was started by the late Monsignor Charles B. Woodrich (AKA Father Woody). This party, which began in 1981 and provided dinners for the 100 homeless at the time, has morphed into a major undertaking providing dinners, gifts and entertainment for 2,865 homeless and low income family members on Sunday, December 20, 2009.

My stereotype of homelessness is alcoholic men with scraggy gray beards, begging for money. So you can understand why I’m struck by how many children are homeless. Children, with jet black hair and olive skin, ages ranging from newborns through teens, and their families, wait for around three hours outside in a line that snakes for two blocks around the Sheraton Hotel on this unseasonably balmy 58 degree winter day.

I wonder how long they have been waiting in the queue for their meals. I’m curious where they will go after they leave the dinner. Where will they have their next meals? How do they stay warm? Do the children attend school? How did their families become homeless? I am saddened to observe them carrying all of their worldly possessions in their backpacks.

More than 12 years ago, my husband, Tom volunteered at this dinner and was discouraged by the somber mood of the day. What this party needed was live music to brighten things up. I invited Alice Aman’s accordion band (which included me at that time) to play for this annual event, and they’ve provided entertainment ever since.

Alice Aman, Colorado's Queen of the Accordion

For the last five years, I haven’t played my accordion with the group because of my slow Parkinson’s fingers and sometimes my right leg involuntarily makes figure 8’s and circles on the floor (neuro talk for dyskinesia). But this year, I’m determined to play with the group, despite my “limitations.” I play for two and a half hours. Right in the middle of Jingle Bells, my fingers come to an abrupt stop and refuse to move. I feel like a light bulb that burns out or a car that runs out of gas. I quietly get myself off stage and whisper to Alice, the band leader about “the Parkinson’s.”

Music is a universal language for the rich and poor, for the healthy and disabled. For me, it provides a temporary respite from the sting of having Parkinson’s. For the audience, it provides a break from homelessness when their eyes sparkle as they enjoy the accordionists squeeze out Christmas songs.

Another Paul with Parkinson's

2009-12-22T15:49:48-07:00

Paul Ruby receives the $25,000 grant from Markham Vineyards President Bryan Del Bondio on behalf of the Markham Mark of Distinction program

Lately it seems most of the Pauls in my life have Parkinson’s. Meet yet another Paul with Parkinson’s: Paul Ruby, 45, who resides in Geneva, Illinois with his wife Linda and their two boys, Wes, 11 and Logan, 8.

After two years of chronic stiffness in his left arm and right leg, Paul went through a battery of neurological tests to determine the cause. In July of 2006, Paul was formally diagnosed with early-onset Parkinson's Disease.

Initially it was difficult to find something positive about being diagnosed with a degenerative disease with no cure. After the initial shock of learning his diagnosis, Paul decided the best way for him to move forward was to create the Paul Ruby Foundation for Parkinson's Research (established in February of 2007). The Foundation's goal is to increase awareness, raise money and support research to find a cure for Parkinson's Disease.

Paul realized that with the help of his friends and in partnership with the Parkinson's Disease and Movement Disorders Center of Northwestern University's Feinberg School of Medicine and Northwestern Memorial Hospital, they could make a difference in the search for a cure. They share a vision of increasing clinical research to extend the knowledge and treatment of Parkinson's Disease.

Paul’s organization applied for a grant from Markham Vineyards, who awarded $25,000 grants to two organizations committed to making a Mark of Distinction. This program received hundreds of inspiring and impactful project proposals. Markham Vineyards was honored to announce the two 2009 $25,000 grant recipients: Long Island Sled Hockey in Lynbrook, New York, and the Paul Ruby Foundation in Geneva, Illinois.

Paul Ruby’s Interview with Kate Kelsall

Kate: After being diagnosed with Parkinson’s Disease three years ago, what prompted you to start a foundation? Many of us including me, were in denial during the early stages of Parkinson’s? What is it about you that instead of wallowing in denial, you took action?

Paul: I was inspired by my son (10 at the time) to be proactive. Soon after I was diagnosed he wrote then President Bush asking him to reconsider his stance on stem cell research.

Kate: What was the best and worst advice you’ve ever received after being diagnosed with Parkinson’s?

Paul: A doctor told me all of the things I wouldn't be able to do and finished by stating "but it's not a death sentence." I would rather focus on the things I am thankful for and things that I can do.

Kate: What is the best and worst thing you’ve done for yourself in terms of managing your Parkinson’s?

Paul: Best - Exercising. I go to a Pilates class twice a week. Worst - I could definitely eat less pizza.

Kate: I’m assuming you are in some way involved in music with your fundraiser, Concert for the Cure. What impact does music have on you and your life with Parkinson’s?

Paul: We found that unlike a golf outing or a charity ball everyone including kids can enjoy and connect with music. Music also helps carry our positive message.

Kate: How did you find out about the Markham Mark of Distinction program? Does Markham Vineyards have an interest in the area of Parkinson’s?

Paul: A friend of mine in the wine business knew of the program and thought the Paul Ruby Foundation would be a perfect fit. I believe Bryan Del Bondio and the Markham staff now have a better understanding of the disease and have connected with the cause.

Kate: What are your goals for the Paul Ruby Foundation?

Paul: To "go out of business" because a cure has been found.

Dont Be a Martyr

2009-12-19T07:46:00-07:00

Martyrs, my friend, have to choose between being forgotten, mocked or used. As for being understood: never. Albert Camus (1913-1960) French novelist, essayist and dramatist

I first felt the hip pain in my left leg in May when I limped around Texas while visiting my niece, Amanda, at her high school graduation. The pain persisted as I went about my day-to-day activities. The pain intensified after a marathon-like dance rehearsal and performance on June 11. In July, after waiting a month for an appointment, I was finally able to see my primary care doctor. I was diagnosed with trochanteric (hip) bursitis and given a handout of exercises to perform. I was conscientious and performed them daily. I attempted to give my hip leg a rest in August, but resting has never been my forte. In September when the dance classes resumed, I didn’t want to miss my big birthday shindig so I danced through the pain. Our last dance performance of the year was on December 15, with a three week break until classes resume in January.

The hip pain became intolerable. I called my doctor’s office on December 16.

“Your doctor is out of the country for a month,” the nurse reported.

“I’ll see anyone,” I snapped back. By then the pain was excruciating, and I would have been willing to see the janitor if he was the only one available on the care team.

Two days later, I went to a salt-and-pepper haired doctor complaining once again about hip pain. He understood as he had treated hundreds of patients before with similar problems. He suggested treating the bursitis with a cortisone injection. I was desperate and consented to have the injection. Within less than five minutes, the relatively painless procedure was performed.

Coincidentally, when I arrived home yesterday, I received an email from Carolyn, who went with her husband to a physical therapist (PT) for a similar problem the same morning. Carolyn reported:

"The PT who is a specialist in balance and gait in Parkinson’s patients, told us that the research over the last 10 years makes it absolutely clear that the only way to get rid of this bursitis is a cortisone shot followed by ice and complete rest: NO repetitive motion or even any PT exercises. Just rest. She also said that if you don't get rid of an acute case, scar tissue forms, and then you have it all the time."

So yesterday, I put ice on my hip and attempted to “just rest” (the most difficult prescription of them all). I woke up this morning feeling GREAT like my old pre-bursitis self.

Moral of the Story: If you think you have a medical problem, pursue it until you can find a solution that you can live with. Don’t be a martyr.

Further information on trochanteric (hip) bursitis: http://www.medicinenet.com/hip_bursitis/article.htm and http://my.clevelandclinic.org/disorders/Bursitis/hic_Trochanteric_Bursitis.aspx

More Food Options and Less Medication Restrictions for Azilect Patients

2009-12-17T14:27:21-07:00

FDA Cuts Food and Drug Restrictions for Parkinson's Medication

By Cole Petrochko, Staff Writer, MedPage Today
Published: December 15, 2009

WASHINGTON -- The FDA reduced food and medication restrictions in prescribing information for the Parkinson's drug rasagiline (Azilect).

The revision allows patients to use the drug while taking various medications, including over-the-counter cough and cold remedies, and eliminates a dietary restriction on levels of tyramine, an amino acid found in air-dried meats, aged cheeses, and many soy products.

The change was based on a double-blind, placebo-controlled, randomized, dose-ranging clinical study demonstrating the drug's selective monoamine oxidase-B (MAO-B) inhibition. The study used phenelzine, a nonselective MAO inhibitor, as a control.

Nonselective MAO-B inhibitors can cause hypersensitivity to tyramine and result in a serious increase in blood pressure.

The study had 179 healthy patients of both sexes from 40 to 70 years old who received escalating doses of tyramine, from 25 to 800 mg, under fasting conditions. Participants' tyramine sensitivity factors were then calculated based on blood pressure increase over baseline before the introduction of tyramine.

The mean value for tyramine sensitivity in patients taking rasagiline 1 mg once daily was 2.03, versus 17.3 for those in the phenelzine group and 1.5 in the placebo group.

However, there was a 25% increase in tyramine sensitivity for every 1 mg increase in rasagiline dose.

Rasagiline is indicated as an initial treatment for the signs and symptoms of Parkinson's disease and as part of a combination therapy with levodopa in the disease's later stages.

Patients should not take the drug if they are taking meperidine, tramadol, methadone, propoxyphene, dextromethorphan, St. John's wort, mirtazapine, or cyclobenzaprine.

The drug may cause increased blood pressure if taken with other MAO inhibitors, amphetamines, cold remedies containing decongestant and weight-reducing drugs containing pseudoephedrine, phenylephrine, phenylpropanolamine, or ephedrine.

Adverse effects from the drug as a stand-alone therapy include headache, joint pain, and indigestion. When taken with levodopa, side effects include dyskinesias, accidental injury, nausea, weight loss, constipation, low blood pressure when standing, joint pain, vomiting, dry mouth, rash, and sleepiness.

Rasagiline is produced by Teva Pharmaceutical Industries in Israel.

*************************************************************8***********************************

Press Release from Teva

Website: www.tevapharm.com

Contact:

Elana Holzman, Teva Pharmaceutical Industries Ltd., 972 (3) 926-7554

Kevin Mannix, Teva North America, (215) 591-8912

For Immediate Release

FDA APPROVES NewLY REVISED Prescribing Information FOR AZILECT^®

reducing Medication AND FOOD Restrictions

JERUSALEM (December 14, 2009) – Teva Pharmaceutical Industries, Ltd. (NASDAQ:TEVA) today announced the U.S. Food and Drug Administration (FDA) approved the newly revised prescribing information for AZILECT^® (rasagiline tablets) reducing medication and food restrictions. This update was based on clinical data that confirmed the mechanism of action of AZILECT^® as a selective MAO-B (monoamine oxidase-B) inhibitor at the recommended doses of 1 mg and 0.5 mg.

The newly approved prescribing information reflects reduced concerns regarding the use of AZILECT^® together with certain medications, including many over-the-counter cough/cold medications. In addition, patients taking AZILECT^® no longer need to follow a general dietary restriction of ordinary levels of tyramine, an amino acid found in certain foods and beverages, such as air-dried and fermented meats, aged cheeses and most soybean products. However, due to potential mild increased sensitivity in some patients, ingestion of very high levels of tyramine (e.g., >150 mg) should be avoided by patients taking MAO inhibitors.

"The FDA's decision to modify the AZILECT^® prescribing information emphasizes the benefit to patients of AZILECT^® MAO-B selectivity at recommended doses,” said Daniel Kremens, M.D., Assistant Professor of Neurology and Co-Director of the Parkinson’s Disease and Movement Disorders Division at Jefferson Medical College of Thomas Jefferson University in Philadelphia. “This is good news for patients and physicians as it reconfirms the safety and convenience of AZILECT^®.”

“We are pleased with this important change in the prescribing information of AZILECT^® as it removes a barrier for some physicians, and some patients, living with Parkinson’s disease,” said Jon Congleton, VP and General Manager, U.S., Teva Neuroscience. “Physicians can now better focus on what is really most important, which is helping patients receive a proven efficacious and safe treatment, at diagnosis early in Parkinson’s disease, and throughout the course of the disease.”

About the Tyramine Study

The tyramine study, submitted to the FDA as the basis for the change in the prescribing information, supported the selectivity of AZILECT^® for inhibition of MAO-B at approved doses, 1 mg and 0.5 mg. Non selective MAO inhibitors may interfere with the breakdown and elimination of tyramine in the body, which can induce hypertensive reactions.

The tyramine study was a double-blind, placebo-controlled, randomized, dose-ranging study of rasagiline using a positive control (phenelzine), a known non-selective MAO inhibitor, and a comparator drug (selegiline). This study was part of a Phase IV commitment to the FDA at the time of AZILECT^® approval. The study results were based on Tyramine Sensitivity Factor (TSF), which measures the ratio of tyramine pressor dose before (baseline) and after MAO inhibitor administration.

In the study, 179 healthy male and female volunteers, aged 40 to 70 years received escalating doses of oral tyramine from 25 mg up to 800 mg administered under fasting conditions. TSF was calculated as the tyramine dose associated with three consecutive increases from baseline in systolic blood pressure (SBP) 30 mm Hg over 10 minutes (tyramine pressor dose) in period one divided by the dose associated with the same change in SBP in period three.

Geometric mean TSFs of all doses of rasagiline were substantially lower than the TSF for phenelzine. TSFs of various doses of rasagiline were comparable to those of selegiline and placebo.

About AZILECT^®

AZILECT^® (rasagiline tablets) is indicated for the treatment of the signs and symptoms of Parkinson's disease (PD) as initial therapy alone and to be added to levodopa later in the disease.

AZILECT^® is now available in 39 countries, including the U.S., Canada, Israel, Mexico and all of the European Union countries, where it is marketed by Teva in collaboration with Lundbeck A/S as part of a long-term strategic alliance.

About Parkinson's disease

Parkinson's disease is an age-related degenerative disorder of the brain. Symptoms can include: tremor, stiffness, slowness of movement, and impaired balance. An estimated five million people worldwide suffer from the disease, with an average age of onset of about 60 years.

About Teva

Teva Pharmaceutical Industries Ltd. (NASDAQ: TEVA), headquartered in Israel, is among the top 20 pharmaceutical companies in the world and is the leading generic pharmaceutical company. The company develops, manufactures and markets generic and innovative pharmaceuticals and active pharmaceutical ingredients. Over 80 percent of Teva's sales are in North America and Western Europe.

Teva's Safe Harbor Statement under the U. S. Private Securities Litigation Reform Act of 1995:

This release contains forward-looking statements, which express the current beliefs and expectations of management. Such statements are based on management's current beliefs and expectations and involve a number of known and unknown risks and uncertainties that could cause our future results, performance or achievements to differ significantly from the results, performance or achievements expressed or implied by such forward-looking statements. Important factors that could cause or contribute to such differences include risks relating to: our ability to successfully develop and commercialize additional pharmaceutical products, the introduction of competing generic equivalents, the extent to which we may obtain U.S. market exclusivity for certain of our new generic products and regulatory changes that may prevent us from utilizing exclusivity periods, potential liability for sales of generic products prior to a final resolution of outstanding patent litigation, including that relating to the generic versions of Neurontin®, Lotrel®, Protonix® and Eloxatin®, the current economic conditions, competition from brand-name companies that are under increased pressure to counter generic products, or competitors that seek to delay the introduction of generic products, the effects of competition on our innovative products, especially Copaxone® sales, dependence on the effectiveness of our patents and other protections for innovative products, the impact of consolidation of our distributors and customers, the impact of pharmaceutical industry regulation and pending legislation that could affect the pharmaceutical industry, our ability to achieve expected results though our innovative R&D efforts, the difficulty of predicting U.S. Food and Drug Administration, European Medicines Agency and other regulatory authority approvals, the uncertainty surrounding the legislative and regulatory pathway for the registration and approval of biotechnology-based products, the regulatory environment and changes in the health policies and structures of various countries, supply interruptions or delays that could result from the complex manufacturing of our products and our global supply chain, our ability to successfully identify, consummate and integrate acquisitions, the potential exposure to product liability claims to the extent not covered by insurance, our exposure to fluctuations in currency, exchange and interest rates, significant operations worldwide that may be adversely affected by terrorism, political or economical instability or major hostilities, our ability to enter into patent litigation settlements and the intensified scrutiny by the U.S. government, the termination or expiration of governmental programs and tax benefits, impairment of intangible assets and goodwill, environmental risks, and other factors that are discussed in this report and in our other filings with the U.S. Securities and Exchange Commission ("SEC").

The S Symptoms of PD

2009-12-06T12:24:26-07:00

I was caught off-guard when a 70 year old newly diagnosed man with Parkinson's Disease (PD) asked questions about early symptoms. I frequently get questions from folks who were diagnosed when they were in their thirties or forties (young-onset persons living with PD --YOPD) who are currently in the advanced stages of PD. Whether young or old onset or early or advanced stage of PD, people have concerns and fears about living and dying with PD.

Getting back to the basics, the four primary symptoms of PD (I call them the "S Symptoms") include:

Shakiness--tremor

Slowness--also called bradykinesia

Stiffness--rigidity

Steadiness--balance and gait problems

You don't have to have all four symptoms to be diagnosed with PD. In fact, about 30% of those with PD never develop a tremor. There are a host of other symptoms beyond these four basic ones.

Here's the link to the story that I wrote about on my PD diagnosis 13 years ago in 1996: http://katekelsall.typepad.com/my_weblog/2006/11/ten_years_ago.html

It Takes a Community

2009-11-26T11:43:15-07:00

“Call it a clan, Call it network. Call it a tribe. Call it a family. Whatever you call it, whoever you are, you need one.” Jane Howard

My tremor wakes me this morning. My body feels like a block of cement as I attempt to roll out of bed. I’ve had a restless night of sleep after trying to loosen up my body with yoga stretches. My first thought ISN’T that I am thankful for having Parkinson’s. In fact, you might hear me mutter under my breath, “I HATE this *&^%$#@*&+*% disease.”

However, with today being American Thanksgiving and in my attempt to transform myself into a “glass-half-full” kind of gal, I find myself reflecting and giving thanks.

I'm thankful for my husband, Tom, for standing by me through thick and thin

for the past thirty-five years.

I am blessed to have my Family Community, with my family living in Kansas City and Texas, and Tom’s family living in Colorado and Wisconsin.

I am grateful for my Community of Friends for their never-ending support and many fun times.

I’m thankful for my Blog Community whose encouragement motivates me to continue writing.

I am fortunate to have a Parkinson’s Community, especially Valerie Graham, with her optimism and hope, and her ability to always turn a lemon into a lemonade.

I'm thankful for the dogged determination of those living with Parkinson’s and their families. I am inspired by their spirit.

I am touched to be recognized for my volunteer work in the Parkinson’s and DBS Communities through the Channel 7 Everyday Hero award. I am grateful to have had the opportunity to participate in Parkinson’s Disease Foundation’s Clinical Research Learning Institute in New Jersey.

I'm thankful for the dedicated Community of Researchers who WILL find a cure for Parkinson's.

I'm appreciative of the outstanding care that I receive from the Medical Community, with their competence and compassion, especially Dr. Olga Klepitskaya.

I am delighted to be involved in a Yoga Community in particular, with yoga teachers, Paul Zeiger, Carolyn Zeiger and Jinger Stuckey, and thank them for helping me stretch my body and mind.

I am grateful to have an Accordion Community in the Aman family and the Silver Notes for their patience and encouragement despite my slow and shaky fingers.

And last but certainly not least, I am blessed to be involved in a Dance Community with the Rockyettes. When I was forced to retire because of having Parkinson’s in 2006, I never in my wildest dreams imagined that I would be dancing in 2007. It was more than coincidence that I found the Rockyettes, in particular, the director, Ann Kennedy. Dancing with them has been a pleasure and a privilege. It keeps me moving, challenges me to be all that I can be and allows me to share my joy of dancing.

I am grateful for All the Communities that have helped me a long the way.

Thank you everyone. I am blessed to have you in my life.

Join the Club

2009-11-20T07:48:16-07:00

I am working with speech therapist, Mary Jo Cartoni, on developing a monthly speech and voice club for those of us with Parkinson’s Disease who need ongoing help.

Please help us spread the word by distributing this information to those who might benefit.

Kate Kelsall

Cartoon courtesy of Alaskan cartoonist Peter Dunlap-Shohl who also happens to be a person living with Parkinson’s and creator of the blog ”Off and On” at: http://offandonakpdrag.blogspot.com/

· Are you frustrated when people ask you to repeat?

· Do your family and friends ask “What?” even before you finish what you are saying?

· Does the whole world seem deaf?

If you answered “Yes” to these questions, please join us in forming a club for those with Parkinson’s Disease who are interested in improving their speech and voice. The club is geared to those who have completed Lee Silverman Voice Treatment (LSVT)® and are interested in maintaining their progress.

The facilitators of the Club are speech-language pathologists, Mary Jo Cartoni, MA, CCC-SLP and Courtney Kelly, MA, CCC-SLP.

Join us for the Club’s first planning meeting on:

Saturday, January 9, 2010 from 1:00 PM–2:30 PM

Location: Exempla St. Joseph Hospital (ESJH) at 1835 Franklin St. Denver, Colorado in the Russell Pavilion in the Volunteer Rooms A & B

Directions: Enter ESJH from Lafayette St. (near the emergency department). Check in at the security desk and tell them you are there for the PD Speech and Voice Meeting. They can provide directions to the Volunteer Rooms. Take the elevator or the stairs up one floor. Rooms are located near the grand piano. Free valet parking is available.

For further details, contact:

Mary Jo Cartoni at cartonim@exempla.org

Courtney Kelly at kellyc@exempla.org

Kate Kelsall at katedenver@aol.com

Statins May Provide Double Protection

2009-11-03T08:15:21-07:00

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.

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:

Statins Protect Against Parkinson's Progression in Mice

By Crystal Phend, Senior Staff Writer, MedPage Today
Published: November 02, 2009
Reviewed by Dori F. Zaleznik, MD; Associate Clinical Professor of Medicine, Harvard Medical School, Boston and
Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner

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.

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.

The mice also had significant improvements in all measures of motor function, they wrote in the Oct. 28 issue of the Journal of Neuroscience.

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.

His group plans a Phase II trial in Parkinson's patients.

Observational data from case-control and large cohort studies have suggested that taking a statin nearly halves the risk of incident Parkinson's disease.

"But that did not suggest whether statins could actually reverse the existing disease," Pahan noted.

So his group tested this hypothesis in mice given injections of a neurotoxin that induces parkinsonism.

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.

They found that one step in microglial activation was the activation of a proinflammatory protein, p21^ras, which appeared to be necessary for the neurotoxic chemical to produce Parkinson's.

But simvastatin exposure inhibited the activation of p21^ras (P=0.0006 to P=0.0002) in the microglial cells. The statin also blocked the neurotoxin from activating (P<0.0001) nuclear factor-kappaB, "a transcription factor required for the transcription of most of the proinflammatory molecules."

Mice given the parkinsonism-inducing neurotoxin showed the same P21^ras activation in the cells of the ventral midbrain, while those given only saline injections showed little or no activation.

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 (P<0.0001), p21^ras, and nuclear factor-kappaB.

Both statins also suppressed activation of glial cells in the ventral midbrain, although pravastatin appeared to be somewhat less effective.

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 P<0.001).

Again, simvastatin appeared to hold an advantage over pravastatin.

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%.

Not only were neurons and neurotransmitters protected, but motor function was preserved as well.

Mice given the statins moved around more often, faster, and with less resting (all measures P<0.05 to P<0.001) than the nonstatin mice.

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.

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.

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."

Doses many times higher than the 80 mg doses typically used for cholesterol lowering have actually been shown to be neurotoxic, he cautioned.

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.

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.

Primary source: Journal of Neuroscience
Source reference:
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" J Neurosci 2009; 29: 13543–56.

Action Points

· Caution interested patients that statins have not been clinically tested or FDA approved for prevention of Parkinson's disease onset or progression.

· 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.

Say Yes to Your Family and Friends' Gifts of Participation

2009-10-29T10:10:11-06:00

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.
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 Clinical Research Learning Institute from October 14-17, 2009 in Florham Park, New Jersey.
At the Institute I learned that:
· It is estimated that less than 1 percent of people with PD participate in clinical trials.
· If more people with PD were study volunteers, more studies would be completed on time.
· 71 percent of people with PD are unaware of available clinical studies in their area. (PDtrials Harris Interactive Poll, 2005)

· Close to 75 percent of physicians talk about clinical trials with 10 percent or fewer of their patients with PD. (PDtrials Harris Interactive Poll, 2005)

· 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). (GfK Roper Public Affairs and Media Survey, 2008)
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.
The Institute for Neurodegenerative Disorders and the University of Pennsylvania are conducting the groundbreaking Parkinson's Associated Risk Study (PARS).
Your family and friends may be eligible to participate in this study if:

They are at least 60 years old and with or without a relative affected by Parkinson Disease
They do not currently have a diagnosis of Parkinson Disease, Alzheimer’s Disease, or other related neurological disorder
Have no known reason for an abnormal sense of smell (e.g., sinusitis, nasal trauma or sinus surgery)

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.
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.
The PARS Team is currently looking for:
Individuals with a first-degree relative (sister, brother, mother, father, or children) diagnosed with Parkinson’s Disease
AS WELL AS
Individuals that have no relatives with Parkinson’s Disease
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.
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:
https://www.parsinfosource.com/Parsq1/
Or they may also find this form and additional information about the study through the PARS website at:
www.parsinfosource.com
or by contacting the PARS Study Team directly at:
203-401-4300 or toll-free at 877-401-4300 to have an eligibility form sent to them.
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.
Ask your family and friends for their gift of participation in this study. It is the one way they can contribute to finding a cure for Parkinson’s Disease.
For further information, contact the PARS Study Team at:
Telephone: 203-401-4300
Toll-Free: 877-401-4300
Email: PARSinfo@indd.org
Website: www.parsinfosource.com

Related Article: Sniffing Out Parkinson's

Edit Done

When the New 60 Feels Like 6

2009-10-25T20:29:23-06:00

I celebrated my 60^th 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 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.
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:
Kansas City – where I grew up and lived for my first 17 years
MacNamara’s Band – representing my Irish heritage
Welcome to the Sixties from Hairspray – because I was a teenager during the sixties and also just turned 60
California Girls – for the time we lived in California
Sing, Sing, Sing – representing my love of big band/swing music
And a surprise dance of Shake, Rattle and Roll, which is the name of my blog
It was the best birthday any 6 or 60 year old could ever have.

*************************************************************************************************************************
My classmtes from the class of 1967 from Hogan High School in Kansas City, MO
Looking Pretty Darn Good at 60

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.

Three Parkinson's Movers and Shakers

2009-10-21T06:35:11-06:00

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) 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.
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.
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.
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.
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!
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.
They are ready to do some Movin’ and Shakin’ to spread the word!
For more information on clinical trials for PD, contact:
Valerie Graham at vgraham999@comcast.net
Diane Cook at: dcook@cookcompany.com and/or
Kate Kelsall at katedenver@aol.cm

Related Story:

PDF Press Releases and Statements -- 40 People with Parkinson’s Graduate from PDF's Research Advocacy Training Program at:

http://www.pdf.org/en/media_pr/release/pr_1256158327

Device-Envy

2009-09-29T19:23:47-06:00

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 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.

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.

The object of my desire is Medtronic’s Activa PC Neurostimulator.

(Not drawn to scale)

Activa^® PC is the first of Medtronic’s next generation, non-rechargeable Deep Brain Stimulation (DBS) neurostimulators.
Medtronic’s promotional literature indicates that it is ideal for people who prefer their device to be ‘fitted and forgotten’ – that’s me!
Key Features

The Activa PC neurostimulator contains an electronic circuit-board and is powered by a non-rechargeable, long-life battery.
Size

The Activa PC 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 Kinetra^® device, meaning that many patients find the Activa PC device more comfortable.
The Activa Patient Programmer 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.
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:
· One program for dancing
· One program for accordion playing
· One program for walking and hiking
· One program for speech
Other fine features include:

Simple Status Check – The Activa Patient Programmer allows patients to easily check the status of the device with the icon-based LCD screen.

Two User Modes –The Activa Patient Programmer can be switched between Simple and Advanced Modes.

Simple Mode allows patients to check battery- and therapy-status at the touch of a button.

Advanced Mode enables patients to make more detailed adjustments, allowing them to switch from four program settings for optimal therapy control. For example, in Advanced Mode, patients switch from one active physician-programmed therapy pattern to another, depending on their current, specific needs.

Activa^® RC Neurostimulator
(Not drawn to scale)
The world´s first and smallest rechargeable DBS device, the Activa RC has an extra-long battery life of nine years.
Overview

The Activa^® Re-Chargeable (RC) neurostimulator is one of the next-generation Activa family of products for patients requiring Medtronic Deep Brain Stimulation (DBS) therapy.
The Activa RC neurostimulator has two main benefits. Not only is it the world’s first rechargeable DBS neurostimulator, but it is also the smallest implantable DBS device yet.
Key Features

The Activa RC neurostimulator contains an electronic circuit-board and is powered by a rechargeable battery that can last for up to nine years. This means that most Medtronic DBS patients with an Activa RC 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.
Size

The Activa RC 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.
Activa^® Patient Programmer (used for both new models: Activa PC and Activa RC)

(Not drawn to scale)
Up to four individualized settings can be pre-programmed by the physician, enabling optimal symptom control for the patient.
Overview

The new Activa^® Patient Programmer is a highly intuitive controller that provides smart, targeted symptom management alongside Medtronic’s next-generation Deep Brain Stimulation (DBS) neurostimulators: the Activa RC and Activa PC family.

Simple Mode allows patients to check battery- and therapy-status at the touch of a button.

Advanced Mode enables patients to make more detailed adjustments, allowing them to switch from four program settings for optimal therapy control. For example, in Advanced Mode, patients switch from one active physician-programmed therapy pattern to another, depending on their current, specific needs.

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.

Activa® RC Activa® PC Kinetra® Soletra®

Volume 22 cc 39 cc 50 cc 26 cc

Weight 40 g 66 g 82 g 42 g

Height 54 mm 65 mm 61 mm 55 mm

Length 54 mm 49 mm 77 mm 60 mm

Thickness 9 mm 15 mm 15.2 mm 10 mm

The following table is the same as the one above, but converted for the metrically-challenged (that’s me).

Activa® RC Activa® PC Kinetra® Soletra®

Volume 1.34 in³ 2.38 in³ 3.05 in³ 1.59 in³

Weight 1.41 oz 2.33 oz 2.89 oz 1.48 oz

Height 2.12 in 2.56 in 2.40 in 2.16 in

Length 2.12 in 1.92 in 3.03 in 2.36 in

Thickness .35 in .59 in .60 in .39 in

Sources of Information:

Presentation by John McDonald, Senior District Manager with Medtronic Neuromodulation, to DBS Support Group on September 11, 2009 in Denver, Colorado
For more info on the Activa PC:

http://www.medtronic.eu/your-health/parkinsons-disease/device/our-dbs-therapy-products/ActivaPC/index.htm
For more info on the Activa RC:

http://www.medtronic.eu/your-health/parkinsons-disease/device/our-dbs-therapy-products/activaRC/index.htm
For more info on the Activa Patient Programmer:

http://www.medtronic.eu/your-health/parkinsons-disease/device/our-dbs-therapy-products/activapatientprogrammer/index.htm

News Release from Medtronic:

http://www.parkinsonalliance.org/UserFiles/file/MedtronicNewsRelease_7_09.pdf

How Prevalent Is Suicide in Parkinson's Disease?

2009-09-23T15:03:56-06:00

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 asked Benzi Kluger, MD, neurologist and specialist in the non-motor symptoms of PD, at the University of Colorado at Denver.
Dr. Kluger’s comments about the study (at the bottom of this post) are as follows:
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.
2) Suicidal ideation (thoughts) seem to be higher in PD, which is not surprising because depression is also more frequent.
3) Suicide is a cultural phenomena and higher in Serbia, where this study was done, than in the US.
4) Some studies suggest suicide may be at increased risk after DBS, but again these studies are small.
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.
1: J Neurol Sci. 2009 Sep 7. [Epub ahead of print]
Suicide and suicidal ideation in Parkinson's disease

Kostiæ VS, Pekmezoviæ T, Tomiæ A, Jeèmenica-Lukiæ M, Stojkoviæ T, Spica V, Svetel M, Stefanova E, Petroviæ I, Džoljic E.
Institute of Neurology CCS, School of Medicine, Belgrade, Serbia.
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<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.
PMID: 19737673 [PubMed - as supplied by publisher]

The True Everyday Heroes

2009-09-18T14:37:46-06:00

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 (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:
(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;
(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
(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.

Channel 7 in Denver will be airing the segment which they taped concerning our awards on the following dates:

Sunday, September 27th at 10 p.m.

Monday, September 28th at 5 a.m.

Thursday, October 1st at 11 a.m.

Friday, October 2nd at 4 p.m.

Saturday, October 3rd at 5 p.m.

Sunday, October 4th at 7 a.m.

Story from Channel 7 in Denver:

Women Bring Hope to Parkinson's Patients

http://www.thedenverchannel.com/news/21139596/detail.html

I'm Not Bragging But...

2009-09-17T18:42:57-06:00

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, sponsored by the Parkinson's Disease Foundation The institute is in New Jersey from Thursday, October 15, 2009 through Saturday, October 17, 2009.

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.
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.
Expenses for attending the Clinical Research Learning Institute (registration, travel, hotel accommodations, meals, etc.) are paid for by the Parkinson’s Disease Foundation (PDF).
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.
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.
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!!
Valerie and I have become the dynamic duo, the go-getters for Parkinson's. Thanks for letting me brag about us.
Kate Kelsall

Speechless

2009-09-15T08:25:16-06:00

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.
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.
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.
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.
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.
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.
More information on Primary Progressive Aphasia can be obtained at: http://www.aphasia.org/Aphasia%20Facts/primary_progressive_aphasia.html

Everything You Ever Wanted to Know about Yoga and Parkinson's Disease

2009-09-08T17:02:38-06:00

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:

http://www.parkinsonsyoga.org/

Gravity + Grace

2009-09-02T15:23:59-06:00

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 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.

To find out more, visit www.gravityandgrace.org

or call the Parkinson Foundation of Western Pennsylvania @ 412-365-2086

Hotmail® is up

Back to My Bliss

2009-08-31T16:52:18-06:00

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.
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!!!
Photo courtesy of Deborah Fryer of Lila films at: www.lilafilms.com

Speak Up!

2009-08-28T09:45:08-06:00

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 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)

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.
"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."
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.
"A major therapy is to get people to speak louder, which also may cause them to articulate more clearly," Huber said.
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.
"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.'"
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.
"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."
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.
"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."
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.
"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."
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.
"This sensor is crucial because it is essential that the background babble noise only turn on when the subject talks," Huber said.
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.
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.
"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."
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.
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.
"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."
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.
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.
The research is funded by the National Institutes of Health. Purdue has filed a provisional patent on the concept.
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, jhuber@purdue.edu.

Permission to reprint was granted by authors.
Source: Jessica Huber, (765) 494-3796, jhuber@purdue.edu
Note: A video story is available at http://www.youtube.com/watch?v=Xj0py9k_uIs.

When Families Managed Their Own Health Care

2009-08-27T10:14:02-06:00

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 Chunks and Mercurochrome Bunnies, in Medpage Today Staff Blog at: http://www.medpagetoday.com/Blogs/15629









Wouldn't It Be Great If This Drug Slowed or Stopped the Progression of Parkinson's

2009-08-20T12:50:25-06:00

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 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.
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.
Twelve human patients will be involved in the new study.
The goal is to see if the drug increases the levels of the gene in the patients' blood.
If the study shows promise in this early phase, it could lead to a larger study.
The initial grant for the study comes from the Michael J. Fox Foundation.
(Copyright KUSA*TV, All Rights Reserved)

Source: http://www.9news.com/includes/tools/print.aspx?storyid=121499

When I asked Dr. Curt Freed about the accuracy of this report, his reply was as follows:

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.
Curt R. Freed, MD, Professor and Head, Division of Clinical Pharmacology and Toxicology, University of Colorado Denver School of Medicine

The Misunderstood Mask of Parkinson's

2009-08-19T10:28:37-06:00

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 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.
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.”
Normal people just don’t get it. But Peter Dunlap-Shohl does get it. A cartoonist with Parkinson’s, Peter’s blog, Off and On, 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: http://offandonakpdrag.blogspot.com

The Mask
Article and Cartoon by Peter Dunlap-Shohl, Copyright © 2008
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.

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.

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.

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.

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.

Then consider the way we get around this problem. We insert little faces that clarify our intent ;-)

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 :-(

Instead of this :-) , or this :-( , what we send is this :-| . Nothing but :-|

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.

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.

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 :-|

Related Story:

The Frozen Mask of Parkinson's at:

http://katekelsall.typepad.com/my_weblog/2007/08/the-frozen-mask.html

	Activa® RC	Activa® PC	Kinetra®	Soletra®
Volume	22 cc	39 cc	50 cc	26 cc
Weight	40 g	66 g	82 g	42 g
Height	54 mm	65 mm	61 mm	55 mm
Length	54 mm	49 mm	77 mm	60 mm
Thickness	9 mm	15 mm	15.2 mm	10 mm

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When Families Managed Their Own Health Care

Wouldn't It Be Great If This Drug Slowed or Stopped the Progression of Parkinson's

The Misunderstood Mask of Parkinson's

Activa^® Patient Programmer (used for both new models: Activa PC and Activa RC)