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Ten Things You Need to Know About Parkinson's Disease

Posted Sep 13 2008 1:04am

I’ve been frustrated with my inability to communicate what it’s like to have Parkinson's Disease (PD) and upset with others who don’t seem to “get it.” So I’ll give it another try:

1. My experience with PD is different from other persons living with PD. While we do share some of the same symptoms of this disease (tremor, stiffness, rigidity, slowness, balance problems), persons living with PD are unique in their experiences. Even with the same diagnosis, we all have differences in symptoms, severity, and the progression of PD.

2. Most of us living with PD hate being handicapped and would gladly trade our handicapped parking stickers for a return to healthy living. PD is chronic and progressive, and our futures are uncertain.

3. We all have good days and bad days, and for people living with PD, parts of every day are good, and other parts are bad. We have PD symptoms that can vary from minute to minute. It is maddening to have such little control.

4. One of our greatest losses is our inability to continue working. Many of us with PD have advanced degrees and have experienced satisfying careers. To discontinue working at a young age is heartbreaking for us. We would gladly trade our disability income checks for gainful employment.

5. Dyskinesia or the flailing and involuntary movements of the arms, legs and head is different than tremor. It is caused by taking Sinemet, the gold standard for medicine, over time and not caused by PD itself. If we don’t take this medication, most of us living with PD would be totally immobilized.

6. Even when taking Sinemet in the same quantity and frequency every day (for me it’s every three hours), we can never predict if and when the medication will kick in, and how much of it will take effect. All of us living with PD would like to have the control that Rush Limbaugh thinks we have.

7. When I’m “off” (when my medications are not working), I am slow-moving, slow thinking, slur my words, and am very shaky. Being “off” for others living with PD is a different experience. Stress can exacerbate our PD symptoms, as it does with other chronic diseases.

8. Some days those of us living with PD can look good with smiles on our faces. You might wonder how we can look so fine and yet be so ill. I’ve worked in medical settings long enough to know that often the people that look the best, can be near death, and people that look dreadful can be healthy.

9. Those of us living with PD do not want to be pitied or judged. We’d prefer others to acknowledge our losses, respect our courage, and believe that our limitations are very real and beyond our control.

10. Those of us living with PD have the same needs, desires and feelings as the rest of society–to love and be loved, to enjoy friends and family, to have fun, to do meaningful work and to make a contribution in this world. We are all the same in this circle of humanity.

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