Maya Ellis is a 12 year old middle school student in Boulder, Colorado. She chose to study Parkinson’s Disease for her class project because her great uncle has it, and she wanted to know more about it. In her free time, she studies for her Bat Mitzvah, plays soccer and the piano.
1. What is it like to live with Parkinson’s disease (PD)?
Life with PD is unpredictable. I never know for sure when and if the medication will be working. Life with PD can be embarrassing, particularly with difficulty walking and talking. Feelings of isolation and being different often set in.
2. Can PD be misdiagnosed?
PD is frequently misdiagnosed. My neurologist had to rule out Essential Tremor, brain tumor, Lou Gehrig’s disease and Wilson’s disease before considering PD. A Movement Disorder Specialist (MDS) is a specialist within neurology who is frequently called upon to diagnose PD.
3. What treatments are there for PD?
The traditional treatments for PD are combinations of medications and/or surgery. The gold standard of treatment is the medication, Sinemet. However, over time Sinemet can cause dyskinesia (e.g., those involuntary movements of Michael J. Fox). The most effective surgical treatment to date is Deep Brain Stimulation (DBS). View a clip of Deborah Fryer’s award-winning film, Shaken: Journey into the Mind of a Parkinson’s Patient, at:
http://www.youtube.com/watch?v=QFtgV1vqwiE
I and many others with PD often experience some temporary relief of symptoms through yoga, dance and other forms of exercise as well as massage and acupuncture.
4. What are the side effects of the treatment?
The side effects of taking Sinemet over time include dyskinesia.
The possible adverse effects of DBS include:
Difficulties with speech
Confusion and other cognitive problems
Infection
Weight gain
See more about adverse effects of DBS at:
http://katekelsall.typepad.com/my_weblog/2008/03/adverse-events.html
5. What cause the lack of dopamine?
No one knows for sure, but it’s probably a combination of genetic and environmental factors.
6. How long does the average person live after they are diagnosed?
This is a topic that most of us with PD don’t want to talk or think about. I’ve seen people in their eighties who die several years after being diagnosed with PD (e.g., my mother-in-law) while I know three persons living with PD who were diagnosed 33 years ago.
For more information, see:
http://katekelsall.typepad.com/my_weblog/2007/10/stages-and-prog.html
7. Are there any common misperceptions about PD?
The primary misperceptions about PD include:
• It is an old person’s disease (when 15% of those with PD were diagnosed when they are less than 50-year old). I know a 21-year old with PD.
• The prevalence of PD (it is estimated that 1.5 million people in the US and 6 million people worldwide have PD).
8. What are the most important things to know about PD?
• The primary four symptoms include: tremor, stiffness of muscles, slowness of movement and impaired balance.
• The onset of PD, which is typically subtle and gradual, is most often unilateral, with tremors the most common symptom. However, many people with PD have no tremor.
• There is currently no cure. It is chronic and progressive.
• The symptoms of PD are different in each individual.
• PD will affect you, your family or friends in your lifetime.
9. What interested you in studying PD?
I wouldn’t be studying PD if I personally didn’t have it.
10. Other facts about PD?
• At time of diagnosis of PD, 80% of dopamine cells are damaged, dead or degenerated.
• April is National PD Awareness Month. Please help by spreading the word.
Let me know on my blog next time PD month arrives---I'll post on my blog.
Posted by: Diane J Standiford | April 29, 2008 at 12:03 AM