Cindy Says, #MyPDPriority is Dystonia

#2bittker_cindy_grandkids_2015Which question about Parkinson’s is your priority for scientists to answer? According to Cindy Bittker, M.S.W., a PDF Research Advocate from Hull, MA, the answer is: dystonia.

As part of its Second Annual Community Choice Research Awards (open during April), PDF is profiling members of the PD community who have taken our survey to find out the priorities they suggest for scientists. The survey — open to people with PD and care partners until Thursday, April 30 — asks what is most important for researchers to study regarding specific aspects of the disease, including its symptoms, day-to-day management and treatment. Later in 2015, PDF will select two community priorities to be studied with $15,000 grants.

See our interview with Cindy and be sure to share YOUR PD priority by Thursday, April 30!

Q. Is this your first time participating in the Community Choice Research Award survey? Why did you choose to participate?
A. Yes, this is my first time participating in the Community Choice Research Awards. Now that I have had Parkinson’s for 10 years, the disease is impacting my life in much more significant ways than it did years ago. This has given me the ability to talk about new issues and symptoms that arise as the disease progresses. These needs are front and center in my daily life, but were not so years ago.

Q. In the survey, you included dystonia as your top priority. Why is it important for scientists to study this issue? How could studying dystonia improve life for people with Parkinson’s?
A. Dystonia is important to study because it has such a big impact on function and quality of life. Dystonia is a painful cramping of muscles. It happens both when medications are wearing off as well as when medications are working, making it difficult to control by adjusting medications. I experience both on and off dystonia in my right toes, yet my PD symptoms are on my left side, which is another confusing aspect of dystonia. When my toes curl and lock up in a curled position, it is impossible to balance and walk.

I suggested dystonia for scientists because I wonder: if the topic is researched, could the timeline for finding better treatments be shortened? Could scientists find new ideas by looking at non-pharmaceutical ideas, for example, medical devices? Could there be a treatment method already FDA approved that could be adapted or used to treat dystonia?

Q. Would you encourage readers, others living with PD and care partners, to
participate in the Community Choice Research Awards survey? If yes, why?
A. Absolutely. A patient or a caregiver’s perspective and needs are not automatically known to the research community. Ten years ago, when I was diagnosed, there was much less recognition of the nonmotor symptoms of Parkinson’s disease. Only recently are clinicians becoming aware that Parkinson’s affects the entire body and most of its systems. The nonmotor symptoms are not visible and can be more debilitating than the visible motor symptoms. We need to tell researchers what is most troubling to us, because so many of these problems are invisible!

Maybe PDF will fund my idea to study dystonia, as they funded Anne’s idea to study fatigue through last year’s Community Choice Research Awards. Maybe they won’t. But either way, I’ve made my priorities known to PDF and their scientific advisors. And ultimately, two ideas that come from us — the people who live with Parkinson’s disease day in and day out — will actually be funded! That is exciting and keeps me hopeful.

Q. As a PDF Research Advocate, can you share your opinion as to why scientists
need to hear about the priorities of people with Parkinson’s and care partners?
It is my perception that, as a whole, people with Parkinson’s are not “squeaky wheels.” We tend to accept a lot of the symptoms we have. It wouldn’t be possible in a visit to our neurologists to discuss all that is going on in our bodies and our minds, so we tend to only bring awareness to our most debilitating symptoms. We need to change that. The PDF Community Choice Research Awards are a great opportunity for us to speak up and know we will be heard!

I read a blog post written by my fellow PDF Research Advocate, Maria De Leon, M.D., who practiced for years as a movement disorder specialist before being diagnosed with Parkinson’s, that speaks to this issue. She says that it “is long overdue to start making our health professionals, researchers and law makers aware of our daily difficulties and struggles.”

Now the exciting thing is, we can share our difficulties and struggles. I urge other people with Parkinson’s and care partners to take the Community Choice Research Awards survey this April to help make researchers aware of what is important to us.

Cindy Bittker of Hull, MA, is a Research Advocate with the Parkinson’s Disease Foundation. Since her diagnosis with young onset Parkinson’s disease ten years ago, she not only became involved with PDF, she also founded the Greater Boston Young Onset Parkinson’s Support Group. A former social worker who began a second successful career in real estate in the same year of her PD diagnosis, Cindy has three grandchildren under the age of four who are, “my motivation to fight PD daily with every weapon at my disposal.”

5 thoughts on “Cindy Says, #MyPDPriority is Dystonia

  1. Wayne King

    Yes, I agree with Cindy. I have not found a lot on it and I have had it in my neck for over 3 years. Simply stated I cannot put my head in an up-right position. Must wear a collar to keep my chin off my chest. My doctor suggested DBS but after a series of tests and consultations it was concluded that DBS was not a good option.

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  2. Barbara K

    As a person with Parkinson’s for 10 years I agree that this is an important area to be studied. I have found over the past two years that acupuncture has relieved the dystonia in my toes , feet and in my neck. I also wear Vibram toe shoes which helps keep the muscles in the bottom of my feet stretched our which releases my toe cramping. I would like to see research look at the benefit of Holistic medicine and traditional medicine use to compliment the benefits of both.

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  3. Gary Goodman

    I agree. Dystonia in my left foot was a leading symptom of PD, but not identified as such for several years (a 40-year old injury was blamed for the distorted toes and cramping until other symptoms of PD appeared). Now that it has been correctly identified, the anti-spasmotic Baclofen and Botox injections have relieved the pain somewhat, and I’m going to try acupuncture, but the dystonia is by far the most limiting symptom, affecting my gait and balance, but also often preventing sleep.

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  4. Helena Camps

    Thank you Cindy for bringing this important debilitating disorder to the attention of the PD research community. I was wrongly diagnosed with PD for five years; it seems my primary disorder is Generalized Dystonia; it is not an easy road but the more research will be done the better for our community.
    I wish you and all PWP, Dystonia and all movement disorders a healing journey.
    God Bless.

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  5. Kathy W.

    After seven years with PD, I, too, am experiencing dystonia in my toes and both feet, although my PD symptoms remain on my left side. Also like Cindy’s situation, the dystonia occurs both during “on” and “off” times with my medication, causing my toes to curl and lock up, resulting in my inability to walk. For me, the dystonia is far more debilitating than many of the other PD symptoms I experience, in part because it so painful. Thank you, Cindy, for taking the time to participate in the Community Choice Research Awards survey and for shining a bright light on dystonia.

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