What’s My Story?

Do you know anything about Parkinson’s Disease (also known as PD)?  Well, simply put, certain brain cells produce dopamine, an essential neurotransmitter that controls muscle activity in the body.  With Parkinson’s these cells begin to die off.  Consequently, those of us living with Parkinson’s gradually lose the capacity to produce dopamine and, ever so slowly, our muscle control just slips away entirely.  Its most obvious outward sign is tremors, but it is far more than that.  There are numerous other motor and non-motor symptoms of PD, from stiffness and muscle rigidity to impaired balance, from fatigue and insomnia to depression. 

My diagnosis was made when I was fifty-nine, which makes me borderline early onset.  Most people first exhibit symptoms in their late 60’s and beyond.  My most obvious symptoms were uncontrollable tremors in the left hand and leg, insomnia, fatigue, softening voice and something called “micrographia,” which caused me to write so small as to make my scrawl illegible.  I was a Labor Relations Consultant, meaning I bargained labor agreements, arbitrated contractual disputes, and taught those skills to others in unionized facilities across the US. 

I worked with PD for more than three years, but finally had to stop.  Picture yourself sitting across the bargaining table from someone who could not hold a sheet of paper in his hand and read it for the shaking, or someone who hands you a note in such a tiny scrawl you can’t read it.  Or think what it would be like if the advocate presenting your case was speaking so softly that even a handful of people in a small room could not hear him.  Put yourself in the passenger seat with someone driving who travelled all the time, but could no longer trust his own driving skills due to fatigue and tremor.  Eventually it all added up to not enough.  I was very fortunate.  I worked for a large company that generously provided short and long-term disability coverage and other benefits.  Not everyone is so fortunate. 

Consider these examples.  There are  Moms who want to some day hold a grandchild, people about to retire who hoped to travel, grandparents who need to raise their grandchildren. 

Not all of my experience has been on the downbeat.  I have met people in all walks of life who have had to live with PD.  I know a lawyer with PD who has written a mystery novel with two lead characters, one with Alzheimer’s and one with Parkinson’s.  I have had the great good fortune to find a personal trainer who knows from experience what people with Parkinson’s need.  She also provides group yoga and fitness classes for people with PD and other disorders as a community service.  I have met Tai Chi leaders who have specifically chosen to work with people living with PD in light of research findings that offer evidence that Tai Chi can slow the progression of symptoms and improve flexibility and balance in persons living with PD.  Last but not least, I have been welcomed into support groups in my own area where members share their experiences and, sometimes, just listen to those who live with PD and their caregivers.

But I am here today because medical science has more questions than answers about Parkinson’s Disease.  It is a slowly progressing movement disorder—so slow-moving that many of us dream of a cure in time to save us—but it looks as if we’ll have to give up that dream.  Because, what is amazing, bewildering and just plain scary is that no one can tell us how quickly it will progress, or how we might slow its progress.  Nor can anyone tell what causes PD, much less how we might cure it or stop its progression.  More than a million people in the US suffer from this disease, so you might think that drug companies are researching these basic questions and will find the answers, launching products to make living with Parkinson’s more manageable.  But that is not how it works.  The drug companies don’t begin investing until a potential product has been developed.  Basic biomedical research is provided by organizations like the National Institutes of Health, and the Department of Defense, and through private foundations.  The NIH is the largest provider of basic biomedical research in the world.  Without the NIH, basic biomedical research into curing any number of serious diseases will grind to a halt.

It should also be noted that health care has an ever-increasing share in this country’s GDP, so investment is important.  Such investment will create jobs and make the US a leader in the technology of disease treatment and elimination.  Further, finding cures can reduce the cost of providing medical care, which is a huge drag on our country’s ability to balance its budget. 

So, what do I want?  I want to ask you to--

1. 1.    Do everything in your power to prevent the automatic cuts to the biomedical research budgets of the National Institutes of Health and the Department of Defense.  Such cuts will almost immediately lead to the cessation of ongoing research due to cutoff of research grants, meaning that much of the progress we are on the verge of making in this country to cure such things as diabetes, cancer, MS. ALS, Parkinson’s and others will be wiped out when clinical trials and other research are shut down.  
2. 2.    If stopping sequestration is not possible, then please support any and all efforts to restore critically needed research funding, whether through a Continuing Resolution or a new budget. 
3. 3.    Failing both of those, help me understand how I can become a better advocate for addressing this concern.  We desperately need more investment in biomedical research, both to find cures for the many diseases out there, and to build a strong economic future in the business of providing health care.