Shake, Rattle and Roll

National Parkinson Foundation Statement on Recall of Medtronic DBS Component

2013-05-06T14:25:05-06:00

http://www.parkinson.org/getdoc/59a627cb-8bd6-4359-9476-61ebe036f411/default

Release date: May 6, 2013

The manufacturer of deep brain stimulation (DBS) devices used in the USA and internationally, Medtronic, Inc., of Minneapolis, Minnesota, announced on May 2nd a risk of damage to DBS devices associated with the use of a component used in DBS surgery. The FDA classified this as a Class I Recall indicating high risk to patients. Medtronic had notified physicians of this issue in February.

The component, called the “lead cap" is used to temporarily protect the wire that connects the electrode to the battery pack (the “lead”) during the time between the surgery to implant the electrode and the later procedure to implant the neurostimulator or implanted pulse generator, often called the battery, which generates the electrical pulses that are emitted by the electrode. When the battery is implanted, the lead cap is removed and discarded. Note that this is not the permanent “cap" that is placed over the site where the electrode passes through the skull.

If you have any questions, please contact the National Parkinson Foundation's free Helpline at 1-800-473-4636 or helpline@parkinson.org, or post in the Ask the Doctor online forum.

Read the Medtronic Press Release.

If you have a Medtronic DBS device should you be worried about the “lead cap” recall and what should you know?

This issue could possibly affect Parkinson'sdisease and also other patients with implanted devices. Between placing the electrode in the brain and implanting the battery, a neurosurgeon will sometimes temporarily protect the exposed wire or “lead” with a “lead cap,” to protect the lead until the battery is implanted. After the battery is implanted, the lead cap is discarded. It is estimated that only about 20 percent of surgeons even use this cap. The risk is that if the surgeon tightens a screw too tightly on the lead cap, it may damage lead and affect the functioning of the DBS hardware. All implanting neurosurgeons have been made aware of the issue, and a solution is under review by the FDA.

Why did the FDA recall Medtronic devices?

According to Medtronic, they received reports of DBS leads being damaged due to over-tightening of the screw that holds the lead cap in place. The DBS lead cap may be used in DBS and dystonia therapy kits temporarily to protect the end of a DBS lead after it has been implanted. The DBS lead cap is not used in all DBS procedures, and is not permanently implanted. If the lead is damaged, lead replacement may be required or optimal therapy may not be achieved. Only a small number of patients are expected to require lead replacement.

What do patients and families need to know about this issue?

Any damage to the DBS system can be assessed in a minute or two by your doctor in the office setting through use of a portable programming device that can check the integrity of the system. If you have a sudden worsening of your symptoms you should visit your doctor and have the device checked for possible damage.
It is estimated that only a small percentage of DBS systems have been damaged by the lead cap.
Because the DBS system has four small lead contacts that can be used to deliver electricity, it is possible that even if the DBS system is damaged, a different contact can be used for stimulation.

Should I see my doctor to have it checked out?

The damage from this current cap issue occurs at the time of DBS implantation, so patients who have had DBS devices implanted for a while and have been doing well on their therapy should not worry about this recent FDA recall.

Patients can double check their DBS devices for damage during their regular doctor visits. Remember that DBS devices can be damaged after implantation and this damage (fractures and short circuits), if it occurs, will most likely not be the result of this current capping issue which has been addressed by the FDA.

If I have DBS, what should I do? Will someone call me?

Any malfunctions or adverse events related to a device should be reported to Medtronic Neuromodulation Technical Services at 1-800-707-0933, weekdays from 7 a.m. to 6 p.m. CST, and the FDA's MedWatch Program at http://www.fda.gov/MedWatch.

I have one of the devices recalled. Will I have to have surgery?

In the case of lead damage, if at the beginning of therapy patients are receiving therapy as expected, they are not likely to be affected by this issue. Patients with questions relating to this issue are encouraged to talk with their physicians.

I am considering DBS surgery, will it affect me? Should I hold off?

No, a manufacturing change intended to address the issue is currently under FDA review, and in the meantime Medtronic has issued modified instructions to physicians who may use DBS lead caps.

The Winter of My Life

2013-05-05T16:22:02-06:00

Author: Unknown

Time has a way of moving quickly and catching you unaware of the passing years. It seems just yesterday that I was young, just married and embarking on my new life with my mate. Yet in a way, it seems like eons ago, and I wonder where all the years went. I know that I lived them all. I have glimpses of how it was back then and of all my hopes and dreams.

But, here it is. The winter of my life, and it catches me by surprise. How did I get here so quickly? Where did the years go and where did my youth go? I remember well seeing older people through the years and thinking that those older people were years away from me and that winter was so far off, that I could not fathom it or imagine fully what it would be like.

But, here it is. My friends are retired and getting gray. They move slower and I see then as older people now. Some are in better and some worse shape than me, but I see the great change. Not like the ones that I remember who were young and vibrant but, like me, their age is beginning to show and we are now those older folks that we used to see and never thought we'd be.

Now I enter into this new season of my life unprepared for all the aches and pains and the loss of strength and ability to go and do things that I wish I had done but never did. But,at least I know, that though the winter has come, and I'm not sure how long it will last. But this I know: that when it's over on this earth, it’s over, and a new adventure will begin.

Yes, I have regrets.There are things I wish I hadn't done, things I should have done, but indeed,there are many things I'm happy to have done. It's all in a lifetime.

So, if you're not in your winter yet, let me remind you, that it will be here faster than you think. Whatever you would like to accomplish in your life please do it now. Don't put things off too long. Life goes by quickly. So, do what you can today, as you can never be sure whether this is your winter or not. You have no promise that you will see all the seasons of your life so live for today and say all the things that you want your loved ones to remember and hope that they appreciate and love you for all the things that you have done for them in all the years past.

"Life" is a gift to you. The way you live your life is your gift to those who come after. Make it a fantastic one.

Are You Afraid of Those Embarrassing Tears?

2013-04-23T12:18:26-06:00

Several people from our Deep Brain Stimulation (DBS) support group approached me and expressed concerns about their expressions of “inappropriate” crying or tearfulness that did not coincide with their current mood. One woman said she found herself in tears when observing high school cheerleaders forming a pyramid. Coincidentally this woman was a high school cheerleader nearly 40 years ago. One man said that he had never been a crier until after DBS, and now he cries at happy or sad events, and that he often doesn’t know what triggers it. A few indicated that they become tearful when sharing their DBS stories.

Currently, I also find myself frequently tearful or crying at happy movies, sad movies, when receiving a compliment, when I see a cute baby, a beautiful sunrise, or for unknown reasons. I describe myself as “sentimental” since DBS. I figured it might be related to 15 years of repressed emotions while practicing as a Certified Public Accountant prior to my diagnosis of Parkinson's. In those years, I was proud that I never shed a tear in the line of duty.

Neuropsychologist, Paul Short, PhD, proposes that you ask yourself the following questions if you suspect that you may have a problem:

Do you sometimes find yourself crying in response to insignificant incidents?

Is the tendency to weep easily something that is new and uncharacteristic of you?

Is the tearful response uncontrollable and disproportionate to the event that set it off?

Does this crying occur when you were not feeling sad or depressed?

Is the outburst sometimes incongruent with the event that set it off, such as crying when one hears a funny joke or the converse such as inappropriate laughing when feeling sad or stressed?

Dr. Short indicated that if you answered yes to any of these questions, you may be experiencing a neurological phenomenon called Involuntary Emotional Expression Disorder (IEED) (also known as Pseudobulbar Affect (PBA) or Emotional Incontinence).

In my research of this topic, IEED is described as a condition when a person experiences uncontrollable episodes of emotional expression including crying, laughter or anger that doesn’t coincide with their present mood. The unpredictability of episodes of IEED can take an emotional toll, causing a person to avoid interacting with others, and it can be socially isolating and socially embarrassing if these episodes occur at inopportune times.

The crying episodes are different from the episodes of depression. With depression, people often lose interest in formerly enjoyed activities and frequently develop changes in sleep and appetite patterns. Depression can be all encompassing, particularly if untreated; however, with IEED, the episodes are unpredictable, short lived and intermittent.

IEDD is another one of those “non-motor” symptoms of Parkinson’s that isn't discussed. IEED is often present in patients with neurological disorders, with about 4%-15% of those with Parkinson’s experiencing this condition. I suspect that the percentage is higher for post-DBS patients, but I haven’t found any research to substantiate this. IEED is often under-diagnosed, as sometimes the symptoms mimic other clinical emotional disorders such as depression or bipolar disorder.

For many patients, IEED can be treated medically with Nuedexta. However, little or no testing of this drug has been done with Parkinson’s patients, and it may interact adversely with their current medications.

As for myself, I am carefully choosing my PD battles, and I am also reluctant to take an additional medication. I’m going to “learn to live with it” as I continue to describe myself as “sentimental,” which is not the worst label in the world that I could have.

References:

Why Do I Cry? by Paul Short, PhD

April 14, 2011

http://www.youngparkinsons.org/blog/why-do-i-cry

A Flood of Emotions by Debra Gordon, M.S.

Neurology Now

February-March 2012 - Volume 8 - Issue 1 - p 26–29

http://journals.lww.com/neurologynow/Fulltext/2012/08010/A_Flood_of_Emotions__Treating_the_uncontrollable.19.aspx

Care Partner, Tom Kelsall, Answers the Tough Questions

2013-04-07T15:53:24-06:00

1. How has your relationship with your partner changed since DBS?

We are closer in terms of more conversation, sharing the cooking, eating out, walking our dog, going on cruises, attending shows and movies together and going out with friends.

We have more patience and understanding toward each other.

We are less active in terms of outdoor activities such as biking, hiking and cross-country skiing.

We are less active as a couple and do less entertaining at home with friends.

We have developed more patience and understanding of neurology, neurosurgery and neurosciences. Programming sessions of the DBS stimulator has been particularly challenging, when much of it seems to be trial and error and makes us wonder if treating PD and DBS is really “rocket science.”

I have developed patience and understanding when dealing with Kate’s changes in mood, lack of energy, upset stomach, constipation, stiffness, lack of range of affect, low voice volume/tone, dyskinesia and irregular sleeping and eating patterns.

I have developed more compassion and empathy for what Kate is experiencing with PD and DBS. I am grateful that Kate’s PD isn’t a lot worse for her.

2. What are the best things that have happened to you, your partner and your relationship since DBS?

We’ve become closer and more supportive of each other through the entire PD/DBS experience.

We have become more empathetic toward others who are experiencing “worse” symptoms.

We are more appreciative of how well Kate is doing (e.g., as compared to the symptoms of others with PD and DBS).

I have developed more compassion for Kate’s trials and tribulations with PD and DBS, including leaving her career early (which she loved!), her ups and downs with fluctuations of meds and programming, her commitment to those with PD and DBS through her volunteer work with the DBS support group and assisting patients as a volunteer as a volunteer DBS patient and family liaison at the hospital, and creating an award-winning blog. Amazing accomplishments for anyone, and particularly significant for a person with PD for 17 years and DBS for 8 years.

Opening the door to PD and DBS has presented Kate with new opportunities she never would have experienced without PD and DBS.

We decided to take this PD/DBS ride together, for better or for worse!

3. What are the worst things that happened to you, your partner, and your relationship since DBS?

“Downsizing” our previously active social and recreational activities has been difficult and has resulted in a less satisfying lifestyle. Becoming homebodies has been an adjustment.

Kate’s voice deterioration has been an on-going source of frustration, but we are working on it and making headway (adapting).

It has been more of a challenge for me to find the time to do some of the things that I enjoy such as bike-riding, fly-fishing, and walking with weights.

The challenge to Kate is maintaining her meaningful activities such as her volunteer work, writing her internationally recognized blog, writing and completing her book, maintaining contact with friends either in person or by email, taking Broadway dancing classes and performing with the Rockyettes.

4.What are your biggest worries about the future?

We worry a lot.

We worry about each of us losing our independence with the progression of PD and Kate’s increase in symptoms.

We worry about Kate losing her voice and not being able to communicate verbally.

We worry about Kate losing her mobility and not being able to go places on her own if and when she needs to stop driving.

We worry about if and when Kate may need the assistance of a wheelchair.

We worry about Kate not being able to maintain her meaningful activities, which could result in inactivity, withdrawal and depression.

We worry that Kate’s meds and her DBS will stop working with the progression of the disease.

We worry about the cost and availability of quality health care after I retire.

I worry about maintaining my own patience and health as a care partner and being able to provide support to Kate.

5. What advice would you give couples considering DBS?

Talk to each other.

Talk to people who have experienced DBS.

Do research. Read blogs, books and articles.

Question doctors.

Make an informed decision as a couple. It is NOT one person’s decision!

Weigh out in writing and through discussions the pros vs. cons of DBS surgery.

Develop realistic expectations for the results of DBS and discuss these expectations with your DBS team to determine if they are in synch with yours.

6. How have you been able to avoid burnout in your role as care partner?

I have been able to enjoy the passions in my life, including biking, fly-fishing, dog-walking, in addition to spending leisure time with Kate.

My work can get intense at times (after 40 years as a psychotherapist), so I need time for fun away from work as well as time with Kate and away from her. Of utmost importance is to maintain balance between couple and individual time and home vs. work.

The ongoing challenge for me is to continue to make new friends and enjoy more sociable activities.

7. Is there anything else that you would like to say?

To protect yourself emotionally, I would encourage DBS participants to keep expectations of success to a minimum—a task which is easier said than done! I believe DBS surgery is worth the risk, no matter how minimal the success. I think if the DBS surgery can improve your life with PD even one iota, it is worth the risk.

DBS is not a cure for PD as the disease continues to progress
despite the surgery.

It is easier to “bear the load” of PD and DBS as a couple than as a single person. Your support network and resources are critical to maintaining your life satisfaction and your sanity.

Tom Kelsall is the husband of Kate Kelsall. Tom and Kate celebrate their 39th wedding anniversary next month.

Living Alone With Parkinson's

2013-04-01T15:18:50-06:00

Living Alone With Parkinson's

By Neil Sligar

Dear Kate,

You recently remarked about the labels “caregiver” and “care partner”. What irks me about these terms is that they are often used as if all who live with Parkinson’s have the benefit of someone nearby to help them get through the day. Many of us aren’t so fortunate.

In Australia, 24% of all households in 2011 were identified by the Australian Bureau of Statistics as occupied by one person only.

http://www.aifs.gov.au/institute/info/charts/index.html

In the United States the figure is said to be 28%.

http://www.pbs.org/newshour/bb/social_issues/jan-june12/goingsolo_03-27.html

The proportion of single person dwellings is higher in cities.

Those living alone with Parkinson’s are under-represented in Parkinson’s support groups mainly because they have no way of travelling.

How many of those living by themselves while trying to cope with advancing Parkinson’s are similar to the following gentleman? He lived in a mobile home, was single, had been diagnosed with PD, was in his early fifties, had worked for a small employer, had no employment-related sickness benefits, had handed in his driver’s licence, and survived on a Government pension. As a Council member of my state association I’d been asked to increase the number of support groups in suburban Sydney. We arranged to meet the local press in his area and tell them of how much a Parkinson’s support group would mean to those like us. He did so admirably.

Shortly after, I heard he’d moved into a nursing home. I asked its location but those approached didn’t know. Similarly, a single lady who attended my local support group “disappeared.” She has moved out of her residence; we are unaware of her relatives.

The special challenges of pwp (people with Parkinson’s) who live alone are seldom featured in Parkinson’s publicity. It’s as if we don’t exist.

Similarly, pwp in the workplace are paid scant regard. I know the principal of a legal practice close by my financial planning office. John was diagnosed with Parkinson’s disease six years ago. His specialty is criminal law; much of his time is spent in court defending the accused. I also know an architect with PD and am aware of a medical specialist who works four days a week. Then there was a professional development day when from the audience I heard a gentleman tell us that he was still working five years after diagnosis.

I used to be keenly involved in attracting prominent speakers to my support group but have withdrawn to concentrate on my business.

There are over sixty Parkinson’s support groups in the state in which I live in Australia. To the best of my knowledge, none can be attended by phone or internet. Instead, I tap into U.S. internet resources (and am most grateful.) Younger pwp make great use of the internet. National boundaries mean little as people converse in chat rooms, by direct email, and other discussion groups.

In my part of the world, the stereotype of a person with Parkinson’s…..a middle class retiree of mature years living at home with husband or wife….may become reality as young pwp lean to the internet while pwp in the work force can’t see any relevance of locally-based Parkinson’s associations. Those living alone face not only the tasks of daily life….for which those with care partners have assistance….but live with the constant tension of wondering “where will I go from here?”

The following was included in my state Parkinson’s association’s 2012 annual report. Its author was “anonymous” but it could even have been me.

My day starts the night before. The timing of medication, when I’ll shave, when I’ll do up the top button on my business shirt, when I’ll leave home, when I’ll arrive at the railway station, when I’ll do damn near everything are planned and jotted down. When medication hasn’t cut in and fine motor skills are beyond me, I catch up on reading.

I was diagnosed with Parkinson’s disease in 1998, live by myself, remain in full time work as a certified financial planner, and am 67 years of age. My capacity to function physically is dictated by medication. For me, relief also follows intense exercise.

Some activities used to rate highly in priority but are no longer rated as important. Gardening is an example; I took pride in my vegetable patch and Australian native shrubs. My back yard now is full of weeds. The front lawn is spic and span, thanks to those paid to keep it that way. Some aspects of daily life remain high priorities; a slip in these won’t be tolerated. Attention to clients is uppermost.

Life isn’t a breeze. Every four or five hours, tremor emerges increasing up the Richter scale if medication hasn’t been taken on time or the day is stressful. Rigidity can overtake me, aggravating an already clumsy body. With Parkinson’s disease, the mundane becomes important. My ability to reach the 7.15am breakfast meeting is determined the previous night when creating the “to do” list for to-day.

Dressing takes me at least double the time it once took. Every button is a challenge. If all has gone to plan, the medication has cut in by the time I reach the meeting venue. I find somewhere private, do up the button at my collar and put on my tie. I dread reaching a stage at which my dress standards are any the less because of Parkinson’s.

Sleep is a precious resource. Many are the nights I lie shaking in bed around 3am until attempting to sleep seems futile and I repair to my computer to see if any northern hemisphere friend has contacted me.

At 8.30pm, three nights each week, I head for the gym. I’m also there for an hour on Saturday or Sunday. Vigorous exercise is my outlet.

“You look a different man when you leave compared to when you arrive” said the gym receptionist last week. She’s right! I arrive at Aquafit gym around 9pm, often shaking too greatly to use my bar-coded entry card. The receptionist lets me in. My gym buddies are mainly people in their teens, twenties and early thirties. They encourage and assist me immensely. I try to return their kindness.

I go home exhausted but happy. Sleep comes quickly and endures longer following exercise.

Neil Sligar

Sydney, Australia.

Responding To Loved Ones Who Don't Want to Go On Living

2013-03-19T09:32:04-06:00

I received a message on my blog from Linda, a leader of a support group for care partners. The following is an excerpt:

Linda: There has been one recent suicide of a caregiver's loved one which has raised some questions not found in the textbooks and certainly not encouraged to talk about with most of their doctors. “It is depression, here is a pill I prescribe.” My groups want to know: "What do I do/say when my loved one indicates he/she doesn't want to go on?" and “How do I react at that moment?"

Kate: Thank you for your thoughtful question, Linda. The topic of depression and suicide is indeed a sensitive one in the Parkinson’s community, and some doctors might be reluctant to discuss this topic at your appointments.

I’ve been fortunate to NOT have experienced depression during the 17 years since being diagnosed with Parkinsoon’s (occasionally a blue day and yes, I definitely have anxiety, but I am not aware of depression). However, a new study sponsored by the National Parkinson Foundation, surveyed 5,557 Parkinson's patients at 20 research centers worldwide and found that 61% reported experiencing depression. It’s not a reactive depression that comes from having been diagnosed with a neurological disease like Parkinson’s, but it’s a major depression that results from a change in brain chemistry from a loss of serotonin. Major depression cannot be gotten over simply with a strong will or trying to “tough it out.”

Depression is often underreported due to the social stigma attached to it. People with depression are afraid that others will label them as weak, lazy, crazy, lacking in will power, having out-of-control emotions, a danger to others, defective, whiney and making excuses and/or antisocial.

Depression can be seriously detrimental to people with Parkinson's if it prevents them from staying socially connected or from exercising to help improve their motor symptoms.

How do you respond when your loved one expresses that he/she doesn’t want to go on living?

What to Say

“I can’t imagine what you are going through. Would you tell me more about it?” Then really listen.

“I will miss you terribly if you take your own life. I can’t imagine living without you.”

“An antidepressant won’t cure Parkinson’s, but it would likely help reduce and manage some of the symptoms of your depression.”

“Are you considering suicide?” (This won’t put ideas into the partner’s head but will allow him or her the opportunity toexpress feelings.)

“You are not alone in this. I’m here for you.“

“You may not believe it now, but the way you’re feeling will change.“

“I may not be able to understand exactly how you feel, but I care about you and want to help.”

“When you want to give up, tell yourself you will hold off for just one more day, hour, minute — whatever you can manage.“

What NOT to Say:

“Ending your own life is not an option.”

“Snap out of it.”

“There are illnesses far worse than Parkinson’s to live with.”

"You should be grateful for all the help you've received from me, the doctors, you family and friends."

“People with Parkinson’s don’t die from the disease, but die with the disease.”

"Parkinson's is a gift."

"Your suicide will hurt your family."

"Look on the bright side."

Other Don’ts

Don’t act shocked, lecture on the value of life, or say that suicide is wrong.

Don’t promise confidentiality. Refuse to be sworn to secrecy. A life is at stake, and you may need to speak to a mental health professional in order to keep the suicidal person safe. If you promise to keep your discussions secret, you may have to break your word.

Don’t offer ways to fix their problems, or give advice, or make them feel like they have to justify their suicidal feelings. It is not about how bad the problem is, but how badly it’s hurting your friend or loved one.

Don’t blame yourself. You can’t “fix” someone’s depression. Your loved one’s happiness, or lack thereof, is not your responsibility.

Adapted from Metanoia.org and "Suicide Prevention" at http://www.helpguide.org/mental/suicide_prevention.htm

What To Do:

Obtain a mental health or psychiatric evaluation of your partner. If your partner is a senior, a psychiatrist who specializes in geriatrics might be a good choice. If there is a diagnosis of depression, it’s important that the doctor evaluate the medication that your partner is taking and determine if it contributes to the depression and that it doesn’t aggravate the motor symptoms of the disease.

In addition, when someone expresses a desire to die, it is important that the words be taken seriously, and he or she needs to be assessed by a medical professional, including an evaluation to determine the risk of a suicide attempt.

Once the depression is somewhat under control with the help of an antidepressant and/or talk therapy, encourage your loved one to not isolate himself/herself and get involved in social activities that he/she previously enjoyed.

In addition, exercise has been found to be helpful in combating depression. Help your partner find a fun exercise program that is appropriate for his/her fitness level and that also provides opportunities for socialization.

Contact your local Parkinson’s Disease associations for recommendations and referrals for services.

By seeking a solution to the treatable problem of depression, you might be able to avoid the tragic ending of your partner’s life by suicide.

Planning for End-of-Life Care

Five Wishes is a living will that lets your family and doctors know:

Who you want to make health care decisions for you when you can't make them.

The kind of medical treatment you want or don't want.

How comfortable you want to be.

How you want people to treat you.

What you want your loved ones to know.

To obtain information about Five Wishes, contact:

http://www.agingwithdignity.org/five-wishes.php

Note:
The medical information in this article is for information purposes only. It is crucial that care and treatment decisions related to Parkinson’s Disease, depression and other medical conditions be made in consultation with a physician or other qualified medical professional. The author has no medical education and training and is not a qualified medical professional.

Donna Miller: Another Inspiring Person with DBS

2013-03-13T19:05:24-06:00

I went through a lot of tissues when I read Donna Miller’s story on the Colorado Neurological Institute’s website. Donna is very active in the Parkinson’s and Deep Brain Stimulation’s communities in the metro Denver area.

Read her and her family’s inspiring story about how she got her life back with Deep Brain Stimulation at:

http://www.thecni.org/utility/showArticle/?objectID=3849

Also, to view her video, check out www.DBSDonna.com

You won’t be disappointed.

Congratulations, Donna.

The Language of Disability

2013-03-04T17:25:06-07:00

The language of disability demonstrates that people with disabilities are frequently perceived and labeled exclusively in terms of their medical disabilities.

Too often, disability-related labels are used unnecessarily to describe a person. A disability is NOT the most important descriptor of any individual. Defining a person as though the disability comprises the entirety of the person often segregates and isolates the person and fails to recognize the humanness.

For example, my 93 year old aunt lives in a facility that provides several levels of care. She is currently in the independent living unit, but she is at the point where she needs more care than provided in independent living. She needs help to set up and administer her medication, assistance in going to the bathroom, help in dressing and getting her up and ready for the day. She is beginning to have memory problems. She has observed that many of the residents in the assisted living unit (the next higher level of care) have dementia. “Those people don’t think straight,” she claims, and she objects to being identified with those who cognitive problems and dementia. Many individuals with physical or mental impairments seek to dissociate themselves from disability. To be perceived as disabled is to be seen as helpless and incompetent. She and is afraid that she and her interesting life will be discounted. And my aunt certainly doesn’t perceive herself as not thinking straight.

My 55 year old brother-in-law works as a janitor, has a busy social life filled with attending dances, bowling, going to the movies, out to eat, enjoying social activities with his family and traveling. He is also developmentally disabled and lives in a group home. He doesn’t like the labels of “mentally retarded” or “developmentally disabled.” He likes people being identified as “staff or “residents” in his group home. He prefers to be around “normal” people rather than those who are disabled.

When someone describes me only in terms of my medical diagnosis as having Parkinson’s, it doesn’t describe me as a person. The human element is overlooked, and I feel devalued.

When others without Parkinson’s generalize from their limited experience with Parkinson’s (my favorite: “My grandpa had Parkinson’s, and I know what it’s like.”), it is often more handicapping than the diagnosis itself.

So how do we change our language so that we can be helpful, not hurtful?

In terms of helpful language, we need to put the person first, not the disability. Our language should describe what a person IS, not what a person HAS. For example, “Kate is a dancer and writer of an award-winning blog. She also has Parkinson’s Disease.”

Our language is an indication of how we perceive others and their worth in the world. When describing the disabled person, we should use the same kind of language as we would when describing someone without a disability.

The following are two of my personal pet-peeves that illustrate hurtful language:

1. Calling an individual a "patient" unless you are currently his physician and providing treatment. I prefer "person with Parkinson's or PWP.

2. The word “caregiver” describes a relationship where one person is giving and providing care and the other person is taking and the recipient of the care. It does not describe the more give-and-take relationship that couples typically have where at times one person gives and the other person takes and at other times, vice versa. I prefer the term “care partner” which describes a more equal relationship.

Other hurtful language includes the following: being described as a “case,” sick with, afflicted by, suffering from, deformed, defective, infirm, victim, handicapped, abnormal, invalid, maimed, Parkinsonian, Parkie.

Being aware of the power of our language can go a long way in bridging the communication gap between those who are disabled and those who aren't. We will discover that in the end, we all value the same thing: being understood as a person.

Reference:

What’s in a Name: Our Only Label Should Be Our Name: Avoiding the Stereotypes

http://www.iidc.indiana.edu/?pageId=364

Why I Blog

2013-03-01T16:20:19-07:00

I blog to remind others and myself that we are not alone. It is easy to feel isolated in our journey down the Parkinson’s path.

I blog for a place to go to express my fears and frustrations and to share my joys and humor with others living with Parkinson’s and Deep Brain Stimulation.

I blog to educate and inspire others and to spread awareness.

I am delighted that others have actually tagged along with me on my journey, and am honored to be recognized for my work. Caring.com stated about Shake, Rattle and Roll: “We believe that your site and story serves as a fantastic glimpse into the human experience of Parkinson's Disease and DBS, and that it provides real relief, support and hope to others going through similar experiences. We truly commend you for sharing your story.”

In addition, Caring.com recently provided the recognition when they captured my story at: http://www.caring.com/articles/shake-rattle-roll-blog

Shake, Rattle and Roll

By Carol O'Dell, Caring.com contributing editor

Last updated: February 26, 2013

"Shake, Rattle and Roll, a blog by Kate Kelsall, shares the journey of Parkinson's and DBS (deep brain stimulation), written from the perspective of the person who's being cared for. It's filled with fact and fun as she lets us in on what it's like to be on the other side of care. Kate experienced early-onset Parkinson's (at the age of 46 -- 17 years ago) and offers her blog to the caregiving community. Few of those receiving care write about their experience, and Kate opens up about her life, her marriage, and her treatment with incredible resiliency and a wicked sense of humor.

In one blog titled "Why Me," she asks the questions we all ask:

"Why not me?"

"Why her or him?"

"Why not her or him?"

"Why this?"

"Why now?"

She bemoans the loss of her "real" (e.g., paid) job and professional career. She whines about losing her voice, the extreme movements (or the lack of movement) caused by Parkinson's. Yet what is so amazing is that she never seems to lose sight (not for long, anyway) of her blessings, and just when the subject gets "heavy," she lightens it with something snarky -- a joke, a quip -- that reminds us all to pick up whatever life throws at us and throw it right back.”

Other Awards and Recognition Received for Shake, Rattle and Roll: http://katekelsall.typepad.com/my_weblog/2012/11/shake-rattle-and-roll-blog-awards-.html

Check out the Caring.com’s 18 Great Caregiver Stories on the Web at http://www.caring.com/articles/best-caregiver-stories-web

Caring.com has nearly two million unique visitors each month, and is the leading resource for senior care reviews on the web. With 10,000 people turning 65 every day, they are also one of the best resources in the US for family caregivers who are caring for an aging loved one.

Valerie Graham's Personal Experience with Medtronic Implantable Pulse Generators (IPGs) or Batteries

2013-01-17T11:51:13-07:00

When contemplating DBS surgery, patients don't usually realize that there are battery options.

By Valerie Graham

When I had my first DBS surgery on August 30, 2002, little did I realize that I would become a contender for the title of "Person Who Had The Most DBS Surgeries." But, if I am correct, I suspect that I may indeed hold that title, a dubious honor to be sure, and certainly not something I set out to achieve!

In addition, I believe that I may also be one of an elite group of people, if not the only person, to have sampled virtually the entire smorgasbord of Medtronic batteries manufactured to date. This experience has made me somewhat of a connoisseur of these comparatively rare batteries, to say the least.

In an effort to educate prospective patients, I have decided to share my personal opinion regarding the perceived pros and cons of each of these batteries in the hope that it will enable patients to make a more informed choice as to which battery to have implanted or, assuming this decision is made by the DBS medical team rather than the patient himself, better educate patients so that they will be able to engage in a more intelligent discussion of this issue with their respective medical teams.

October 18, 2002 - the Dual Soletra Batteries

When I initially underwent Deep Brain Stimulation (DBS) surgery for Parkinson's disease, I was implanted with the dual Soletra batteries. These were separately connected to the electrodes implanted on each side of my brain.

Advantages of of the Dual Soletra Batteries:

Despite DBS surgical complications (my left electrode was not placed in the optimal spot and I ultimately had to have it re-implanted in February, 2003, coupled with the fact that, due to a broken extension lead on the right side, the entire right side electronics had to be replaced in yet another separate surgery in April, 2004), my batteries persisted. My Soletra IPGs lasted approximately 6 years before they had to be replaced in September, 2008. This was longer than the average length of time of 3-5 years that is more typical for battery replacement.

Disadvantages of the Dual Soletra Batteries:

My biggest objection to the old Soletra IPGs was that programming changes or adjustments could only be made by the neurologist or his programmer. Consequently, being difficult to program, I became psychologically dependent and was accustomed to having ready access to my neurologist or the programmer if I needed an adjustment.

September 29, 2008 - Single Kinetra Battery

By late September, 2008, it was time to replace my dual Soletra batteries. The neurosurgeon, at my request, agreed to replace them with the single Medtronic Kinetra battery. This required extensive rewiring of the extension leads implanted under my scalp because both electrodes implanted in my brain now needed to be connected to the single Kinetra battery.

Advantages of Single Kinetra Battery:

The most significant advantage of having a single battery rather than two implanted in my chest was that I was given the ability to make adjustments to the neurostimulator settings, within certain prescribed parameters. I found this added ability to control changes to the neurostimulation of my Kinetra battery immensely freeing.

Disadvantages of Single Kinetra Battery:

The surgery to implant the Kinetra battery and rewire the extension leads proved to be much more involved and complicated due to the extensive scar tissue that had built up around the original Soletra extension leads.

This battery only lasted approximately 15 months before I needed a replacement.

March 5, 2010 - Activa Rechargeable (RC) Battery

Due to the comparatively short period of time before I had exhausted the Kinetra battery, a determination was made by my DBS medical team that I should be implanted with the relatively new Medtronic Activa Rechargeable (RC) battery.

Advantages of the Activa RC Battery:

In theory, this battery is supposed to last a minimum of 9 years before requiring replacement.

It is a much more compact size (i.e., 2.1 in. high x 2.1 long x 0.4 in. thick, with a weight of 1.4 oz., compared to the Kinetra battery's dimensions which are 2.4 in. high x 3 in. long x 0.6 in. thick, with a weight of 2.9 oz.).

It offered the option for finer control of the stimulation field by configuring multiple programs per lead, and for achieving optimal settings sooner by defining 4 therapy groups.

Disadvantages of the Activa RC Battery:

The charge on my battery typically read 50% or less when I performed my daily check of the charge, causing me to need to recharge the battery every 2-3 days. I talked to one of the Medtronic reps while attending an APDA conference in Iowa, and he voiced his concern that because this particular IPG was a lithium battery, in theory, it should require even more frequent recharging as it ages, a fact, that, if true, I quickly realized could prove to be unduly burdensome.

It took 2-3 hours, for me to recharge the battery to 100% once it was down to 50%. However, if I recharged the IPG in several small sessions, rather than one extended session, it seemed to recharge more easily and quickly.

It was often extremely difficult to locate the best spot on my chest directly above the IPG where I was able to get the most optimal charge to the battery from the recharger (eight blackened bars signifying the most optimal charge, with the fewer boxes which were blackened on the recharger screen, the longer it took to recharge the battery). This problem was ameliorated when I was provided by Medtronic with a supply of small round sticky discs, which after removing the paper covering and attaching it to the skin directly above my implanted battery, greatly improved my ability to locate the spot where I was likely to obtain the most optimal charge.

The harness that was provided with the Activa RC battery was useless in attempting to recharge the battery. It was virtually impossible to get a tight and precise enough fit to get the most optimal charge to the battery. Instead, I found that what worked best for me was to place the recharger directly on top of the skin covering the IPG and to lie perfectly still until the battery was fully recharged.

Furthermore, while recharging, the recharger itself often became so warm during the recharging process that it was uncomfortable against my skin. I found this to be particularly true after the battery implant surgery when the scar was fresh. And, although it was my understanding that the recharger automatically shut off when it reached a certain designated temperature, I found that this only served to lengthen the time required to fully recharge the battery.

While it may have simply been my imagination, I also noticed that I began to get extremely fidgety or restless when I was recharging for any length of time. It was almost as if my skin felt prickly, making it that much more difficult to sit still so that I could get the maximum efficient charge to the battery.

It was extremely frustrating that the digital readout on the patient programmer only measured the amount of battery life remaining in quartiles, i.e., 25%, 50%, 75%, and 100%, rather than to the closest single percentile.

All in all, given the amount and degree of daily maintenance that the Activa RC IPG required, I became firmly convinced that I would not opt for re-implantation of this battery over the Activa PC, if I were given the opportunity to make the decision myself. Ultimately, for me, the amount of maintenance that the Activa RC battery required served only as a constant psychological reminder that I was not nearly as "well" as I would like to think. Given how active I had become following my DBS surgeries, this only served to reinforce the notion that I was "sick" and suffered from a chronic, presently incurable, degenerative neurological illness!

In hindsight, it is my personal opinion that the ideal candidate for the Activa RC IPG would be a more sedentary person who is capable of sitting still for long periods of time.

I can't help but ponder additional concerns which the Activa RC IPG raises if, for example, one likes to spend time in the back country camping and hiking for more than a day or two, as I do, or if one travels to foreign countries, where an adapter may be required in order to keep the battery fully charged, as was the case for when I traveled to Glasgow, Scotland, for the 2nd World Parkinson Congress in 2010.

May 7, 2012 - Activa PC Battery

Little did I know in 2010 that I would have the chance to have another battery re-implanted sooner versus later. I had surgery on December 1, 2010 to determine if the two electrical leads, that had previously been determined to be fractured, were fractured extra-cranial or intra-cranial. It was ultimately determined that the lead connected to the electrode implanted on the right side of my brain was simply a extra-cranial break that was easily remedied by replacement of that particular lead. Unfortunately, the fracture on the left side proved to be intra-cranial and, thus, required yet another brain surgery on December 9, 2010.

The incision on the right side of my scalp did not heal properly, and I was scheduled for wound revision surgery on May 20, 2011. Although that surgery was relatively minor in nature, I developed a rare staph infection that ultimately required total ex-plantation of the entire Medtronic DBS hardware system (including both electrodes, the leads and the extension leads, as well as the pulse battery itself) in two separate surgeries, the first, on June 24, 2011, and the second, on August 4, 2011. From the date of the first surgery on June 24th, I had a PICC line in my arm which was threaded through the vein into my heart, through which I was supplied with a continuous infusion (24/7) of vancomycin for approximately 14 weeks until I was finally cleared to have the PICC line removed on September 27, 2011.

During this time, I was without any neurostimulation whatsoever. It was this unanticipated vacation from DBS that made me realize and appreciate the full extent of the benefits that I had realized as a consequence of DBS surgery. I was forced to juggle approximately 45 pills per day in order to keep my PD symptoms somewhat under control. I underwent a complete new evaluation to make sure that I was still a good candidate for DBS surgery. This included a full neuro-psych exam, flying to Los Angeles to obtain a second opinion from a world-renown DBS specialist, and having a DaTscan of my brain. I was, at last, determined to be a candidate for re-implantation, which surgeries took place on April 20, April 27, and May 7, 2012.

However, when it came time to implant another IPG, I opted for the Activa PC battery, with the full approval of my neurosurgeon and my neurologist, and, to this date, do not regret my decision. It remains to be seen how long it will be before I require my next neurostimulator battery replacement.

I most definitely would have DBS surgery all over again. Despite the complications, I have experienced significant overall improvement in the quality of my life as a result of the DBS surgeries.

Disclaimer: The opinions expressed herein are those solely of the author, who has had no formal medical training whatsoever, and are based solely on the author's personal experiences and observations as a lay person diagnosed with Parkinson's disease for more than 20 years.

Victorious for Today

2013-01-16T06:39:39-07:00

I know it's too early to declare victory over the dyskinesia and tremor on the right side of my body. All that shaking was exhausting.

But for now, Monday's DBS programming session was successful.

I haven't had episodes of extreme movement since then.

My husband (and dog) haven't observed a flying arm in bed in the middle of the night.

I haven't been awaken out of a deep sleep by a tremorous right thumb.

I haven't had to sit on my shaky hands to avoid embarrassment in front of others.

So it’s all good, and for today, I’m victorious.

Anticipating DBS

2013-01-15T08:30:02-07:00

Take a look at the post, "Facing DBS Surgery Brings Excitement and Worry" on Mary Spremulli's blog at:

http://voiceaerobicsdvd.blogspot.com/2013/01/facing-dbs-surgery-brings-excitement.html

It features a transcription of my communication with Bill who is planning on having DBS in the near future.

Looking Good, But Sounding Squeaky

2013-01-09T07:59:46-07:00

Lately I have been receiving compliments about how good I’ve been looking. Someone even called me "young lady" the other day. I’m not complaining and am grateful for the compliments.

I AM looking good--even with Parkinson's. I’m down to my goal weight through adhering to the Weight Watchers program, attending their weekly meetings and exercising.

I’ve followed the fashion rules of Stacy and Clinton on my favorite TV program, TLC’s What Not to Wear (Their 10^th season begins in January 2013. Check your local listings for time and channel).

In addition, after finding Charming Charlie I’ve started accessorizing. With more than 200 stores in the U.S, Charming Charlie provides a huge variety of affordable accessories, ingeniously arranged by color, making that perfect accent fun and easy to locate.

So I can get all dressed up and look good and appear confident, while my spoken voice makes me appear stupid. My once stronger voice seems to have morphed into a soft-spoken one. Although I can look good when my tremors and dyskinesia are under control, sometimes I can barely squeak out a syllable. I can walk for miles, yet my walking companion can’t hear or understand a word I utter. Lately I can’t even hear or understand my own quiet voice when I’ve left a garbed message on my voice mail.

I’ve been unsuccessful in getting my deep brain stimulator (DBS) optimally programmed. It’s often a tradeoff with DBS between having understandable speech and having too little or too much movement. I don’t want to compromise on speech or mobility.

It is not enough for me to have a lean body with nice clothes and colorful accessories. I want to passionately participate in life through my spoken voice not just be a passive observer. While I am grateful for my strong written voice, I must keep fighting for my strong spoken voice. I'll probably die fighting, but I'm not giving up on myself anytime soon.

The "Why" Questions

2012-12-26T15:35:02-07:00

Living with Parkinson ‘s Disease (PD) and Deep Brain Stimulation (DBS), I’ve often asked myself the question, “Why me?”

Mary Spremulli addressed this issue in her insightful article "Why Me?" Might Be a Question for Good Times and Bad When Living from the Heart at: http://voiceaerobicsdvd.blogspot.com/2012/12/whyme-might-be-question-for-good-times.html

More recently, I’ve also added the following questions:

"Why not me?"

“Why her or him?”

“Why not her or him?”

“Why this?”

“Why now?”

Living with PD and DBS is a mixed bag. It results in a lot of grumbling on my part about the negative aspects of the disease and the surgery. I complain about my devastated voice caused by PD and DBS. I frequently “why me” about being diagnosed with PD at the age of 46 nearly 17 years ago. I bemoan the loss of my “real” (e.g., paid) job and professional career. I whine about the extreme movement or the lack of movement caused by this movement disorder.

In the past, I’ve ruminated about the problems that I’ve experienced as a result of PD and DBS. However, in moving forward, I am challenging myself to ask the same “why” questions about the blessings in my life that have occurred as a result of living with PD and DBS. Blessings include making new friends like Mary Spremulli and the reward of gratifying work with my friend and colleague, Valerie Graham, in assisting individuals and their families as volunteers at hospitals and through the Bionic Brigade (Denver’s DBS support group).

To help rethink the circumstances of our lives, ask the “why” questions about the good, the bad, and the ugly aspects of living with PD and DBS. When we’re able to use whatever difficulties we’ve experienced to help others, then all of our suffering and struggles are elevated to a higher level beyond ourselves. This just may lead us down the road to meaningful and purposeful lives.

And on the lighter side:

“When his life was ruined, his family killed, his farm destroyed, Job
knelt down on the ground and yelled up to the heavens, "Why god? Why
me?" and the thundering voice of God answered, There's just something
about you that pisses me off.” ― Stephen King

“Sometimes I lie awake at night and ask why me? Then a voice answers nothing
personal, your name just happened to come up.” ― Charles M. Schulz

The Label “Exercise for Parkinson's" May Do More Harm Than Good

2012-12-08T15:50:35-07:00

Opinions vary as to what type of exercise is appropriate or beneficial for those with Parkinson’s Disease—everything from gentle yoga to high intensity aerobics, chair exercises to boot camps, not breaking a sweat to forced exertion with continuous sweat.

Our Australian correspondent and guest blogger, Neil Sligar, has developed an approach that has worked well for him for nearly 13 years.

The following is Neil Sligar's opinion:

I rarely publicize my athleticism with Parkinson’s, fearful that the general public may think the condition less nasty than it is.

I particularly welcomed your remark about “exercise for Parkinson’s” and how you are more comfortable exercising (“moving” may be a preferable description) with the wider world.

My training regime was commenced in the year 2000 for overall health and because I enjoy it. It continues for that purpose. It’s conducted in the company of cheery young people who lift my spirits. It pursues little improvement targets rather than ambitious goals. I aim to finish each session feeling around 8 on a scale of 1 (barely any effort) to 10 (exhaustion). My overall mantra is “Do your best. No-one can do better.” I can accept that a 25 year old man or woman may go faster and further but I’d be very cranky if they’d worked out harder than me.

I’m not into bravado. Safety is paramount. I’m likely to be found exercising alone but if using weights, always within sight of someone else.

To me, exercise means flexibility + aerobic (puffing) + strengthening.

Some days I feel good. Other days may be terrible. I turn up for training regardless of my condition on the day. Sometimes when feeling terrible, I perform at my best. During my June 2011 video, I felt at my worst and was very shaky and rigid. Yet with encouragement from fitness instructor Danielle, I pulled out one of my better efforts. (See link to video.)

My few encounters with “exercise for Parkinson’s” have left me feeling patronised by “experts” who seem reluctant to accept that, despite the condition, I’m faster and stronger than most men of my age. The explanation for my capability is very simple. I train hard and assume that all things are possible until proven otherwise. Others with PD run marathons or cycle long distances or climb Mount Kilimanjaro or lift heavy weights.

Before diagnosis we were a heterogeneous bunch with vastly differing habits and preferences. Now we live with PD, at various stages of the condition, why is it that we should be corralled together for “Exercise for Parkinson’s”?

Some Parkinson’s websites counsel us to be “assessed” by a physical therapist before starting an exercise program, then supervised in exercises specifically focused at Parkinson’s. Other websites counsel us to ask our doctors what exercises they recommend. What do they know about exercise? Does their medical training include anything to do with the topic? The upshot too often is that PWP are informed of an “exercise for Parkinson’s group” in which PWP are brought down to that minimal level at which all PWP can participate. Some PD exercise groups are conducted sitting down and use soup tins as weights.

Why not begin with the assumption that we are not handicapped until evidence is found to the contrary? Then treat that specific shortcoming rather than consign someone labelled “Parkinson’s” to a group for those of lower physical capacity?

Some people wish to cluster with others diagnosed with PD. Others, like me, wish to remain fully participating in the wider community. Some join dance classes for those with PD. Others prefer to dance with the wider community.

Over fourteen years following diagnosis of Parkinson’s disease, my fitness level is far superior to what it was prior to 2000.

Learn more about Neil Sligar from:

Video and PDF of Neil’s presentation to the Parkinson’s Australia conference in Brisbane, July 2012

http://www.parkinsonsconference.com.au/presentations2012.php

Video shown at the conference is a four minute abbreviation of a twelve minute video produced in 2011.

http://www.youtube.com/watch?v=R_-nRQmO8ko

Read more from Neil Sligar at:

Parkinson's Disease and Intense Exercise

http://katekelsall.typepad.com/my_weblog/2010/01/parkinsons-disease-and-intense-exercise-neil-sligars-10-year-experience.html

An anonymous piece written by Neil Sligar for the Parkinson’s NSW annual report in 2012 http://www.parkinsonsnsw.org.au/assets/attachments/documents/AnnualReport_2012.pdf

Disclaimer: Those contemplating a vigorous exercise program should first ask a medical practitioner to check their overall general health.

Medicare Therapy Caps Jeopardizes Care of Persons with Parkison's

2012-12-04T18:40:00-07:00

The information below is from the website of the Parkinson’s Action Network (PAN).

What are the Medicare Therapy Caps?

The Balanced Budget Act of 1997 created limits, or caps, on the amount of outpatient physical, speech language, and occupational therapy a Medicare beneficiary could receive each calendar year. Beginning in 1997, Congress voted several times to keep the caps from going into effect. However, on January 1, 2006, Congress allowed the therapy caps to take effect. The cap for 2012 is $1,880. Once the cap is reached, beneficiaries who require additional services in the calendar year are responsible for 100% of the cost.

Exceptions to the Medicare Therapy Caps

To mitigate the impact of the therapy caps on Medicare beneficiaries who need therapy services beyond the cap, in 2006, Congress created an exceptions process for services deemed medically necessary. Unfortunately, the exceptions process is temporary and must be reauthorized by Congress almost every year. In February 2012, Congress
passed, and the president signed, a continuation of the exceptions process.
This extension expires December 31, 2012.

PAN supports a repeal of the Medicare therapy caps. People with Parkinson’s disease commonly have a medical need for physical and speech language therapy. The Medicare therapy caps place an unnecessary burden on many individuals with Parkinson’s and other diseases, whose annual costs for these services exceed the cap. In addition, if an exception is not granted by Medicare, the beneficiary may face the decision of forgoing care, paying out of pocket for the services, or traveling to an outpatient hospital for continued care. PAN supports the Medicare Access to Rehabilitation Services Act of 2011 (H.R. 1546/S. 829), which wouldeliminate Medicare therapy caps all together. Voice your support to your Representative and Senator today!

Access to Therapy in Jeopardy:Act Now!

Congress has less than 30 days to extend the Medicare therapy caps exceptions process. Tell your Member of Congress to act today to prevent harmful restrictions on physical, occupational, and speech-language therapy from going into effect on January 1!

Medicare therapy caps disproportionately impact people with chronic diseases like Parkinson’s. Twenty-five percent of Medicare beneficiaries with Parkinson’s exceed the arbitrary annual cap Congress has placed on medically necessary therapy services. Congress has just days left to act to ensure that people with Parkinson’s won’t be denied the treatments they need to maintain their quality of life.

TIME IS RUNNING OUT – TAKE ACTION! by clicking on:

http://www.parkinsonsaction.org/federal-initiatives/ssdi-medicare/medicare-therapy-caps and complete the information under “Join Us-Take Action.”

.

Worsening of Speech Attributed to DBS by Some Persons with Parkinson’s

2012-11-26T11:52:32-07:00

I was upset but not surprised by the results of the study, Speech in Individuals with Parkinson’s Disease With and Without Deep Brain Stimulation, prepared by DBS-STN.org, an affiliate of The Parkinson Alliance. DBS has been found to adversely impact speech in a number of Parkinson’s (PD) patients. Although I have observed the devastating effect of DBS on my own speech and the speech of many PD patients with DBS throughout the years, I didn’t realize the magnitude and severity of the problem until reading this study.

Also troubling is that so many patients were not informed before their DBS about the possible adverse effect of DBS worsening their speech.

If you are the person struggling to be heard and understood, it is no consolation that so many folks also experience speech problems after DBS.

Now that the secret is out, what can be done to remedy this problem? This is a complex issue requiring complex solutions. It requires a village--patients, speech and language pathologists, neurologists, neurosurgeons, Medtronic, DBS programmers and researchers--all working together to generate creative solutions.

A complete report of the study can be found at:

http://www.dbs-stn.org/media/file/DBS-SpeechReport-withReferences.pdf

Some of the findings in the report are below:

First the Bad News

One of the objectives of the study was to compare and contrast speech symptoms for DBS and Non-DBS patients in both a Younger PD group (50-69 years of age) and an Older PD group (70+ years of age).

For both the Younger and Older PD groups, there were statistically significant differences in speech disturbance severity between the DBS group and the Non-DBS group, with the DBS group reporting more severe symptoms.

For the Younger PD group, 75% of the DBS group (versus 29% of the Non-DBS group) characterized the severity of the speech problems as moderate to severe.

For the Older PD group, 81% of the DBS group (versus 48% of the Non-DBS group) characterized the severity of the speech problems as moderate to severe.

Low volume was the “most troubling speech symptom” for DBS and Non-DBS participants in both the Younger and Older PD Groups.

Slurred speech is one of the most common speech symptoms and appears to be the symptom most negatively impacted by DBS for both the Younger and Older PD groups of the DBS group.

The frequency of swallowing difficulties is greater in the DBS group as compared to the Non-DBS group.

In both the Younger and Older PD Groups, the DBS group had higher ratings of voice disturbance that interfered with their daily life and indicated that due to speech difficulties, they were communicating and socializing less often than the Non-DBS group.The DBS group reported having greater emotional difficulties in response to their voice problems.

More Bad News

The second objective of the study was to compare and contrast speech symptoms as it relates to duration of PD (Advanced PD 6-10 group and the Advanced PD 11+ years group).

For both the Advanced PD 6-10 years and the Advanced PD 11+ years groups, there were statistically significant differences in speech disturbance severity between the DBS group and the Non-DBS group, with the DBS group reporting more severe symptoms.

For the Advanced PD 6-10 years group, 74% of the DBS group (versus 42% of the Non-DBS group) characterized the severity of the speech problems as moderate to severe.

For the Advanced PD 11+ years group, 81% of the DBS group (versus 52% of the Non-DBS group) characterized the severity of the speech problems as moderate to severe.

Low volume was the “most troubling speech symptom” for DBS and Non-DBS participants in both of the Advanced PD 6-10 years and the Advanced PD 11+ years Groups.

Slurred speech is one of the most common speech symptoms and appears to be the symptom most impacted by DBS in both of the Advanced PD 6-10 years and the Advanced PD 11+ years Groups.

For both of the Advanced PD 6-10 years and the Advanced PD 11+ years groups, the frequency of swallowing difficulties is greater in the DBS group as compared to the Non-DBS group.

For both of the Advanced PD 6-10 years and the Advanced PD 11+ years groups the DBS group had higher ratings of voice disturbance that interfered with their daily life and indicated that due to speech difficulties, they were communicating and socializing less often than the Non-DBS group. The DBS group reported having greater emotional difficulties in response to their voice problems.

DBS Participants

66% of the DBS participants perceived that their speech worsened as a result of DBS, as compared to 34% of the DBS participants who perceived improvement of their speech symptoms.

50% of those DBS participants who perceived that their speech worsened following DBS said that it was unexpected.

For those who perceived worsening of speech to be attributed to DBS, low volume, slurred speech,word-finding difficulties and swallowing were the symptoms most frequently indicated as being adversely impacted by DBS therapy.

94% of the participants indicated they are satisfied with outcome of their DBS therapy based on overall symptom improvement received from DBS, even in the context of having some side effects.

Despite speech disturbance following DBS, 97% of the participants reported that DBS has improved their overall quality of life.

Shake, Rattle and Roll-–Blog Awards

2012-11-17T15:36:35-07:00

I am honored and humbled to have received the following awards for my blog, Shake, Rattle and Roll.

15 Best Parkinson's Blogs of 2012

You can find the complete list (in no particular order) at: http://www.healthline.com/health-slideshow/best-parkinsons-blogs

“Blogger Kate Kelsall tells all on her candid Parkinson’s blog cleverly entitled Shake, Rattle and Roll. Having lived with this disease for 16 years, Kate knows a thing or two about managing symptoms, searching for treatments, and even playing the accordion. Don’t let her disarming exterior fool you, however -- she is one tough cookie, and Parkinson’s disease has met in her a formidable foe. Learn from her tireless enthusiasm for life, rejoice in her successes, and share in her challenges. You will be glad she’s on your side when PD symptoms come a-calling!"

100 Top Senior Living Sites for Nurses

http://nursingassistantguides.com/senior-living/#aging-ailments

"A 60-year-old woman who was diagnosed with Parkinson’s disease 14 years ago provides her insights and inspirations in this blog. She shares a lot — including her love of accordion jazz.”

Removing the Mystery: Top 49 Blogs About Parkinson’s Disease http://www.healthcaretechnicians.org/removing-the-mystery-top-49-blogs-about-parkinsons-disease/

"Katie Kelsall is a 60 year old “shaky accordionist.” She was diagnosed 14 years ago and has been blogging about it for a while. Thoughts, tips, and more are all shared."

40 Blogs to Follow for Parkinson’s Awareness Month http://www.nursingschools.net/blog/2011/04/40-blogs-to-follow-for-parkinsons-awareness-month/

“Kate Kelsall does not allow Parkinson's to interfere with the life she loves, and she dedicates her blog to spreading awareness of the realities behind having it.”

Ouch—That Hurts!

2012-11-17T03:38:35-07:00

I hadn’t realized that her words were still hurtful and that I had continued to feel wounded.

This past summer, I participated in an exercise class, led by a Physical Therapist and that was geared to people with Parkinson’s. In the middle of one of the classes, the instructor ran over to me, grabbed my right hand and said in her loud outside voice, “I hate that shaky right hand.” I was shocked and without a quick comeback, responded in my whispery inside voice, “I hate it too.” There was a pause. She then said in a quieter voice, “you know you can stop the tremor, but just temporarily.” Of course, I knew that I could stop the tremor if I focused on it 24/7, but I chose to focus on living life instead of scrutinizing my shaky paw.

I took the coward’s way out and simply withdrew from the class. Being preoccupied with “ouch—that hurts,” I missed that teachable moment.

I wish I would have said to her that if she wants to work with people with Parkinson’s, she’d have to get over her hatred of the shaky hands of her patients. She would encounter a lot of persons with shaky limbs if she chose to specialize in Parkinson’s.

I would have told her that we also hated our shakiness, that we didn’t choose to be shaky, and that it was exhausting for us to attempt to cover it up from people like her.

I also would have said that her approach of singling me out for my shakines was hurtful, not helpful.

I can’t imagine having this experience in an exercise class of everyday folks. As a result, I’ve decided to avoid exercise classes geared to those with Parkinson’s and only attend exercise classes for those WITHOUT Parkinson’s.

What Are You Waiting For?

2012-11-11T12:12:18-07:00

I attended the Victory Summit sponsored by the Davis Phinney Foundation in Denver, Colorado yesterday. I become informed and inspired.

Davis Phinney said that he dislikes the phrase “waiting for a cure.” It implies inaction, passivity and being stationary.

One definition of “waiting” is being in the state of inactivity or repose until something expected happens.

The folks attending the Victory Summit are not waiting for the cure. They are living life fully, as best they can, despite Parkinson's. They are speaking, writing, working, volunteering, advocating, singing, painting, parenting, dancing, exercising, bicycling, hiking, drumming, playing musical instruments, acting. They are doing whatever they can to NOT WAIT for the cure, with the realization that the cure may not come in their lifetime.

Barack Obama said: “Change will not come if we wait for some other person or some other time. We are the ones we've been waiting for. We are the change that we seek.”

What are you waiting for?

A cure for Parkinson’s Disease?

To have more money?

To win the lottery?

To find the time?

To find a partner?

To get married?

To get a better job?

If we wait for some person to appear or an event to occur, it may not happen We must be the change agent for what we want changed in our lives.

Be Prepared: Tips for Creating Productive Neurology Appointments

2012-11-04T16:15:27-07:00

Managing your Parkinson’s Disease is a partnership between you and your neurologist. Help make the limited time you have together in appointments productive by being prepared.

Preparing for Your First Appointment

Prepare your health history (previous illnesses, hospitalizations, surgeries, allergies, etc.) and bring it to the visit. You may want to ask your neurologist if there is a form you can complete prior to the visit.

Bring other medical information and test results, such as lab work, x-rays, and MRIs. For radiological studies, ask the office if they prefer copies of the films or if reports are adequate. You may also ask your primary doctor to send records directly to your neurologist's office.

Bring a list of the doctors you want your neurologist to update about your medical condition. Be sure to include their telephone, fax numbers, and addresses.

Bring your insurance card, co-pay, photo ID and referral, if needed.

Ask your care partner to attend the appointment. It’s important to have another set of eyes and ears and someone to listen, take notes, and ask questions. If your care partner is unavailable, ask a family member or friend to accompany you.

Arrive early to allow time for parking, using the restroom, getting to the appropriate building and reception area, checking in and filling out paperwork. If you need your doctor’s signature on any paperwork (such as prescriptions to be refilled, disability forms to be completed, request for handicapped parking, request to be excused from work), it is important to give the paperwork to the nurse or doctor upon arrival at your appointment.

Preparing for Subsequent Appointments

Before the appointment, prepare the following:

List of current prescriptions including names, dosage, and how often and what time you take them. Gather all your medications in a bag to bring to your visit.

List of current supplements including names, dosage, and how often and what time you take them.

List of current symptoms in order of how troublesome they are to you. Use bold type to identify the three most troublesome symptoms.

List of movement symptoms such as walking, falling, freezing, getting out of a chair, moving in bed, etc.

List of nonmovement symptoms such as swallowing, speech, nausea, constipation, urinary frequency and/or urgency, drooling, excessive sweating, dizziness upon standing, swollen ankles, sleep disorders, restless legs, etc.

List of fluctuations in your symptoms including on/off fluctuations such as those related to medication cycle eating, sleeping, and exercise.

List of episodes of dyskinesias (those involuntary movements caused by Parkinson’s medications) and whether they occur at the peak or end of the medication cycle.

List of changes in your mental status such as depression, anxiety, cognition, difficulty in ability to make plans, hallucinations, compulsive or excessive behaviors such as shopping, gambling or sex.

List of observations/information regarding your condition or any changes in your condition.

List of questions regarding your condition, symptoms, treatment, medications, alternative therapies, or new developments you have heard about that may apply to you. List the three important questions first. It is important to prioritize in case there is not enough time to address everything in your appointment.

During the appointment, ask for referrals to the following:

Speech Therapy for help with speech, communication and swallowing problems.

Physical Therapy for help with balance, gait, strength, pain, and flexibility issues.

Occupational Therapy for help with handwriting problems, home modifications, and adaptations to make your activities of daily living easier.

If your neurologist prescribes medication, make sure you fully understand:

What has been prescribed and its potential benefits, possible side effects and what to do if these side effects occur.

If there is an acceptable generic substitution?

Exactly when and how long you are to take your medication(s).

Make sure to double-check that the medications you get from the pharmacy are the same medications that have been prescribed for you.

At the End of the Appointment

Make a follow-up appointment, if necessary.

Find out when your neurologist will get back to you with your test results.

Know what the next steps are in your care.

References:

Shaky Paws Top 10 Recommendations for PWP's by Kirk Hall http://shakypawsgrampa.blogspot.com/2012/05/shaky-paws-top-10-recommendations-for.html

Making the Most Out of Your Visit to the Neurologist: A Check-Up Checklist by Lawrence I. Golbe, MD http://www.pdf.org/en/yy_doctor_checklist

Preparing for Your Neurology Appointments: Helping Your Neurologist to Help You! Prepared by Diane Church, PhD http://www.apdama.org/cmsAdmin/uploads/Preparing-for-Your-Neurology-Appointment.pdf

I Never Knew that Swallowing Could Be So Complicated

2012-10-23T12:00:06-06:00

I should have noticed the red flag—coughing and choking when eating and drinking during meals. I was clueless. I simply avoided dealing with it, thinking I already had too many other issues on my Parkinson’s plate. I recently discovered that have been experiencing difficulty swallowing (dysphagia).

Estimates of dysphagia’s prevalence in Parkinson’s Disease run as high as 90 percent. But how do you know if and when swallowing becomes a problem? The National Parkinson Foundation (www.parkinson.org) has a highly informative booklet, Parkinson Disease: Speech and Swallowing, 2nd Edition written by Marjorie L. Johnson, MA, CCC-SLP. Included in the booklet is a self-assessment checklist that helps you determine if you may have a swallowing problem. Their checklist below is a good place to start. Check all that apply.

Swallowing Checklist for Persons with Parkinson’s Disease

I have recently lost weight without trying.

I tend to avoid drinking liquids.

I get the sensation of food being stuck in my throat.

I tend to drool.

I notice food collecting around my gum line.

I tend to cough or choke before, during, or after eating or drinking.

I often have heartburn or a sore throat.

I have trouble moving food to the back of my mouth.

I have trouble keeping food or liquid in my mouth.

It takes me a long time to eat a meal.

I sometimes have trouble swallowing pills.

My eating habits have changed recently, and/or I have a loss of appetite.

SometimesI have fever for unexplained reasons.

I notice changes in my voice quality after eating or drinking.

If you checked any of the boxes above, you may need to get a referral from your doctor to see a speech-language pathologist (SLP) for a swallowing assessment.

And if you are really brave, you may want to ask your care partner to complete the following checklist and check all the statements that apply.

Swallowing Checklist for Care Partners of Persons with Parkinson’s Disease

She/he seems uninterested in food.

She/he coughs or gets “strangled” during meals.

She/he often coughs following a meal when we are doing other activities such as watching TV or reading.

I have had to use the Heimlich Maneuver on the person that I am helping.

If the care partner checks any of the above statements, it is important to encourage the person with Parkinson’s to get a referral from the doctor for a swallowing evaluation by a SLP.

By completing the checklists, you and your care partner have taken the first step toward recognizing, understanding and getting help for your swallowing difficulties. Be proactive--don’t let a swallowing problem turn into a life-threatening event.

15 Best Parkinson's Blogs of 2012

2012-09-16T16:33:57-06:00

Healthline recently published the list of their 15 favorite Parkinson’s blogs. I was delighted that Shake, Rattle and Roll made the list.

You can find the complete list (in no particular order) at:

http://www.healthline.com/health-slideshow/best-parkinsons-blogs

From Healthline:

“Blogger Kate Kelsall tells all on her candid Parkinson’s blog cleverly entitled Shake, Rattle and Roll. Having lived with this disease for 16 years, Kate knows a thing or two about managing symptoms, searching for treatments, and even playing the accordion.

Don’t let her disarming exterior fool you, however -- she is one tough cookie, and Parkinson’s disease has met in her a formidable foe. Learn from her tireless enthusiasm for life, rejoice in her successes, and share in her challenges. You will be glad she’s on your side when PD symptoms come a-calling!"

Tough to Swallow

2012-09-03T13:16:21-06:00

August is usually my favorite month for enjoying the warm summer days. Not this August—it was just a blur of medical appointments. I consumed a lot of barium, which is heavy in weight and sandy in texture and yucky in taste, while being zapped with radiation at two appointments during the month.

I was tested for aspiration (food, liquid, or other material getting into the “wrong tube”-- the trachea instead of the esophagus) and voice and swallowing problems.

On August 3, I had the Barium Swallow. This test involves drinking barium while in various body contortions--right side up, upside down, facing right, facing left, facing back, while lying down on my back, and while lying face down. I aspirated while drinking barium in a prone position (face down). I silently wondered who drinks while lying on their stomachs, but didn’t question it.

Fortunately, since I am in overall good health, I got rid of that offensive barium by coughing vigorously. I was required to take this test without food, drink or medication for 8 to 12 hours. Without Parkinson’s meds for 12 hours, I arrived at the appointment stiff and in very slow motion. Picture the tin man without oil. NPO (nothing by mouth) after midnight can be disastrous for someone with Parkinson's, and I should have asked if my medications were an exception to that rule.

What I learned: If something gets into the airway, it has a good chance of getting into the lungs. The worst case scenario is that it could result in aspiration pneumonia, which, for a person with moderate or advanced Parkinson's might result in alteration in diet (thick liquids) and worse, even a feeding tube. Persons with Parkinson’s Disease who are weak from another illness or surgery are more at risk.

On August 17, I had the Modified Barium Swallow (MBS). It’s confusing in that this test has the same name as the previous test with a “Modified” in front of it. Apparently, the referring physician was also confused by this, as the MBS would have been the safer and more appropriate of the two tests to order when looking for aspiration. This test is conducted by a speech-language pathologist (SLP) in Radiology. I was asked to swallow small amounts of food and liquid such as applesauce and a cookie that was mixed with barium, and recorded on video. The results revealed no evidence of aspiration or dysphagia (difficulty swallowing). When I asked about swallowing strategies and swallowing therapy, the SLP responded that it wasn’t necessary because I was already using swallowing strategies that were effective.

What I learned: The Barium Swallow is indicated for looking at the function of the esophagus, including reflux. Although the liquid barium must pass through the mouth and throat on its way to the stomach, for persons with swallowing difficulty (known or suspected), drinking large amount of barium in positions not natural to eating and drinking may actually result in aspiration.

Make sure you are getting the correct test as ordered by your physician.

Following my swallow studies, I was evaluated again by an Ear, Nose and Throat (ENT) and voice specialist. Yet another swallowing test was completed, this time with a scope passed through my nose just above the voice box. The ENT made no recommendations for immediate medical or non-medical treatment, but suggested that I may want to return if my aspiration worsened considerably in a year. It seemed odd to me that I should "wait" for my aspiration to worsen before further medical treatment would be offered.

What I learned: I am as much of an expert on my own medical condition as any specialist. It is important for me to take charge, learn as much as possible about my health, ask why a particular test is being ordered, and seek out remedies to manage my health issues.

The Show Must Go On

2012-08-22T14:39:36-06:00

Check out my video, The Show Must Go On at:

http://youtu.be/enff5rH927M