Dear E of the headdress,

My limited knowledge of PD is based on taking care of my wife with at least 12 years of the lousy disease.  This was supplemented with occasional reading in papers, books, and regularly attending support group meetings.  As far as I could tell after meeting hundreds of PWP, I never saw two people with identical symptoms, or in your terms no one had a square peg and no round hole was really round.  I could never find somebody with all the same symptoms Barbara showed and I also know people who have RLS and no other symptoms.  Neither could I find anyone else being treated the same way Barbara was, nor anyone else responding to medication the same way.  I know little about RLS because we were not involved with it, but I know that some people with no other symptoms due to PD, can teat it with Sinemet, but some refuse to treat it that way.

At the last support group meeting last month, our neuro mentioned possible precursors and that list is rather lengthy, ranging from elemental (e.g. paint pigments, cadmium, etc.), to fertilizers poisoning, genetic predisposition, head trauma, previous viral or bacterial infections, and hosts of other.  It appears that scientific evidence for causal factors is still lacking to arrive to a valid conclusion.

However, from what I read, there is cause for optimism for the younger PWP because the pace of research has increased and new findings are ever coming out and I am confident that a cure is in sight........if Mr. Bush and his henchmen do not obscure the field. 
Be well my friend,

Michel

  ----- Original Message ----- 
  From: Edith S. Love 
  To: [log in to unmask] 
  Sent: Tuesday, April 24, 2001 7:12 PM
  Subject: RLS and Precursors


  Rick,

  I can only speak for myself. After almost six years of symptoms and medications my square peg still doesn't fit in either a PD or a PD+ round hole. Therefore, what I have to say might not be pertinent for you.

  Personally, I've wanted to discuss the subject of precursors with our PD family for some time. Because PD manifests itself so differently in each
  individual, I don't believe we can put definite precursors in a tightly closed bottle, that says, "one size fits all", to everyone who wants knowledge re the subject.

  One thing I do know and that is that not all PDers or PD+ers suffer from RLS.
  However, for me, whatever my category, RLS is on my list but BIG TIME. I inherited the darlin' from my father and his ancestors (I'll have my say with them in particular someday). From the time I became a square peg, my legs have not only been traveling to China by way of the floor boards, they have ached and pained one hundred fold. Even a lowly sheet often feels like lead and becomes unbearable!

  Also on my list of precursors is the Epstein Barr Virus, the lean of the body left or right and sight problems when there is nothing wrong with my eyes. For me, the inability to blink is somehow related (I can now blink some but still have very dry eyes. Refresh is my sidekick.).

  Three months before possible diagnosis, I was heading home facing the west. My eyes were protected by prescription sunglasses. I couldn't get away from the sun. It hit my eyes so strongly and seared so strongly that my eyes literally closed before I could pull over to the side of the road. I count this among my challenging experiences. It was close to noon when I called my friend the optometrist who in turn sent me to his friend the opthamologist who was missing his lunch. Boy, did he ever get angry at me! "Well, blankety, blankety, blank, she doesn't even blink!" Like I knew what was going on!

  As I think about this subject, I can add to my list an accident as a child that left two indentations in the frontal area of my skull. At another time, I fell and hit my head heavily against a radiator. I think of balance problems obvious only to me that prevented me from riding a bike or from ever using a balance beam successfully. Was this due to my ambidexterity, my injuries or to something else? Having dealt with head trauma, I am fully aware that injuries suffered many years ago can come to the surface years later. Surprisingly, not all physicians believe or consider this possible.

  Look, too, at spinal injuries received over the years. A beautiful Appaloosa mare on a gallop spooked a standing, patient sixteen hundred pound foundation mare who then ran forward and hit me in the chest with all her power. This sent me to the rock-hard ground one August many years ago. I fractured my spine, but she saved my life by jumping over me. What part does this play in what is wrong with me now? Inquisitively, I ask, "How long and how far can this mechanism we call me or you be sustained, and how do these experiences relate to PD and/or PD+"?

  In the long run, there are many of us out here who may not really belong to a category, but who, because of like symptoms, have found a home with the PD family. If my offerings assist, all the better. If they don't, perhaps some of the other family members will share their precursors. It's possible we will generate some very interesting medical information.
  E of the headdress
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