Some Q & A about Parkinson's

At Blazing Toward a Cure, one fact was blatantly obvious. The professionals repeated it. Hundreds of beautiful beautiful people provided the empirical evidence: Everybody's Parkinson's Disease [PD] is different.  There were people who walked so fast I couldn't keep up with them as we walked to and from our cars, and there were people with walkers and in wheelchairs. Some people's tremors were the obvious motor symptom and others, like me, were there in part because there was going to be a talk about the non-motor symptoms that my new friends at our table admitted scared us.  Today I want to tackle some preliminary questions I hear frequently. As I do more research, see my doctor,  hear from readers, and live each day with PD, I hope to share more information.

MaryAnn, my partner, and Emma Alice, one of our grandchildren. Both are alive thanks  to modern chemistry, loving family,  great doctors and nurses, and a hearty dose of prayer.  They also motivate me to get with the program.

Q: What is PD?
A:  It's a progressive, degenerative disease of the central nervous system and is characterized by impaired movement [e.g. the classical hand tremors] and other problems involving non-motor functions [e.g. swallowing, speech, cognitive functions].   I want to stress that I am not a physician, that this information derives from my years living with PD.  We have what works as  neurotransmitters in our brains: dopamine.  For whatever reason--age, exposure, genetics, other medications--our dopamine, to put it in lay terms, quits working.  As  my neurotransmitters misfire, I experience the symptoms of Parkinson's. Dopamine agonists, which I take in the form of cardidopa/levadopa,  bind to the dopamine receptors and enable proper firing. 

Q:  How did you get PD? Did anyone in your family have it?
A: I don't know and no.  That question came up at the symposium.  Is it nature or nurture, stress, genetics, the environment?  Michael J. Fox got it at a very early age, and there is some indication that early onset may have more of a genetic component than late.  Nobody in my family had PD, and my parents died in their late 90s. I was, however, exposed to toxic environments all my life. I grew up in the otherwise perfect city of Oak Ridge, TN, where we built part of the atomic bomb, but the beautiful environment and lots of residents and workers suffered various forms of cancer and neurological disorders.  Then I spent 16 years safely ensconced in the academic life, but at 33 I fulfilled my life long dream of becoming a fireman (sic). Talk about hazardous environments!  Did all of this cause PD? The answer is we don't know, but my body has been exposed to significant toxicity.

Q:  How do you know you have PD?
A:  Difficult question.  In my case--and I am in no way trying to give medical advice--I developed tremors when I was 56. When I turned 60 (classical time for PD to manifest itself) worsening tremors sent me to my primary care physician.  This is a man who saved MaryAnn's life, who is an absolute genius, and who really listens to and studies his patients.  He looked very worried, prescribed Sinemet, and referred me to a new neurologist.   At that point, my MRI showed nothing except a brain, which I was beginning to doubt. But my neurologist observed beginning rigidity, increasingly terrible tremors,  legs that took on a life of their own, imbalance, falling, and, occasionally, the tell-tale shuffling walk. 

Q:  What is PD treatment?
A:   I can only tell you what I do, although I know the meds I take are commonly prescribed for PD.  I take Sinemet, which is Cardidopa/Levodopa, and Mirapex.   There are other drugs with which I am not familiar, and there is also Deep Brain Stimulation.  Then there is what's looking like the most significant variable in PD therapy--EXERCISE.  And that's one motivation for this blog.  If I tell people that I am going to do this more faithfully--and report on it--I have to do it.
 

C6H3(OH)2-CH2-C2H2-NH

This is my friend--Dopamine.

Coming tomorrow:  A person with Parkinson's most embarrassing moment.



Come Run with Me

Be, the box turtle, who owns my friend Toni

No?  You might do what I do and trip over something that leaped up out of the sidewalk and sent you face first onto the ground?  OK, then, come exercise sanely with me on this first day of our new adventure together through Parkinson's [hereafter known as "PD"].

It was almost funny--a possible scene for Saturday Night Live. On Saturday, Oct. 16, 2010, approximately 500 other people with PD and their family members were leaving an incredible educational symposium sponsored by Vanderbilt University Medical Center and the  National Parkinson Foundation.  It was a gorgeous day, and there were crowds of people in the highly-congested Vanderbilt-Hillsboro Village area as we all left Belmont Methodist Church. I had never been in a group of people with PD before, and, physically, I was having a bad day. I wanted the high and the energy of a fantastic program to propel me out the door faster than the speed of light. OK....maybe a little slower. After all, I had my Dr. Marten's 5 lb shoes on, so the sprint would have to wait. Good thing. As this group of us headed towards our cars--some on walkers, a few "shuffling" as PD often makes us do, all of us moving as slowly as a herd of box turtles, I noticed the bright yellow and black banner that heralded the symposium: "Blazing Toward a Cure."  I wondered if anyone else noticed the irony there. 
Maybe our group was turtle slow, but it sure was as determined as a box turtle is when s/he sticks that neck out, stands tall, and runs (and they do, trust me) with single-minded determination.  For what we had been doing since 8AM--besides eating breakfast and making new friends--was learning from the best and the brightest and most inspiring people in the field of PD research, treatment, and management.  For me, it was a revolutionary, life-altering day. Exercise might do more for PD than meds. Terrified of my swallowing problems, I have been avoiding them by resorting to my ice cream diet [addiction], but my only exercise has been schlepping textbooks around the campus where I teach.
     So I am starting fresh, and I am armed with exercise tips and more empowering information. I am morphing from being a woman in denial about my PD and  approaching middle age [I will be 64 in Dec:)] into a proactive "PD person" who's ready to take on the world.  Won't you join me?