It was Friday, November 14, 2008. A particularly crisp fall day in Memphis. The kind of day you wish would go on forever.
I had been to a total of five doctors, had at least five MRI's, and still didn't know why I was losing the fine motor skills in my right hand. Today I was seeing doctor number six with the attitude that any diagnosis would be a relief. I was wrong.
The doctor I had picked had an Indian name. I choose this doctor from a referral list strictly because the office was in the same clinic where some of my MRI's had been done and I didn't want to have to lug films around.
I waited two hours in a near empty waiting room slowly developing an attitude. When a rather round flowered nurses' smock called my name and ushered me to a room (I only refer to the smock because for the life of me I cannot remember another single detail about her).
I was surprised to only wait another twenty minutes before a tap on the door announced the woman that was coming to define my future. I was surprised the doctor was a woman. Her name had not given me a clue and I felt chauvinistically foolish.
She sinecerely apologized for my wait and got right down to business. I gave her a document I had prepared giving a timeline of the progression of my symptoms. She complemented my organization but I had just grown tired of repeating the same story over and over. She patiently read my past. The difficulty I had noticed shifting my bicycle during long rides, then the weird way my right arm refused to swing when I walked, then the rapid deterioration of my handwriting.
She asked me a few questions that I now do not recall. Then she confidently said, "I'm ninety percent sure I know what you have." WHAT!
She refused to spill the beans until she had spent a good 45 minutes testing my right side versus left side reflexs, sensitivities, and coordination. She left the room for a minute and returned with literature and web pages that I could go to for support. Then she said, "Corticobasal Ganglionic Degeneration, otherwise called Parkinson's Plus."
She wants to see me in six months but I'm not sure why. I've read the bad news now. "Mean survivability after diagnosis is EIGHT YEARS."
This blog will be a record of my progression (er, degeneration). This first post was typed entirely with my left hand. Kind of a bitch when you're right-handed to start with.
Subscribe to:
Post Comments (Atom)
Thanks for the comment on my Cosbygirls page. Hang in there - knowledge is everything in the progression of this disease. Did you join the Yahoo group? It's http://health.groups.yahoo.com/group/cbgd_support/
ReplyDeleteThere is a wealth of information there and some really great people.
Karen
Hey, fantastic site. I was a geriatric social worker in a nursing home, with one "rare" case of CGBG...fell in love with the family...and then my intelligent, healthy mother was dx at age 65...had probably been brewing for 5 years. I left that job after 10 years to re-enter the inpatient psychiatric population and pull myself together. Sounds like you are grieving, but have a great sense of humor. That will help with whatever is to come. Keep up the great writing. Megan
ReplyDeleteThank you Megan. I'm knew at this (both blogging & CBGD) and the irony is the more practice I get at blogging will parallel the the projected loss of skills needed to produce the blog. So as Jack Nicholson once said, "this is as good as it gets." Thanks for reading.
ReplyDeleteThank you for writing this blog. My father died of CBD in May 2002. We had no idea what he had suffered with until after the brain autopsy came back. My dad has some issues with fine motor skills, but his first large symptom was the loss of the ability to communicate (both verbally and written). So we were really unable to know what he was going through. Thank you for blogging this journey.
ReplyDeleteAnn, I am sorry about your father and sorry that he had to suffer through this without being able to give it a name. I've been a public speaker as long as I can remember and one of my fears is losing my ability to speak. We'll see, I guess.
ReplyDeleteBob
HI I love what you have done with this page you have an awesome spirit. My mother suffered from this disease for ten years. I would love to speak to you i'm enclosing my email address dse823@yahoo.com plse contact me there. Feel I have alot of information to offer you. God bless :)
ReplyDeleteArrived back from the doctors today and feel a bit empty with the possibility my husband has this disease. We have been trying to figure out what has been going on with him since 2006 and finally it looks like it has been narrowed down to this. So many doctors, so many EMG's, so many MRI's and even carpal tunnel surgery as he has lost the use of his left arm pretty much and it has a mind of it's own sometimes. His mind seems fine and his legs are fine. Not sure what to expect but will keep this blog as a pipeline as I head down the road of investigation.
ReplyDeleteI'm a 56 year old female. I've been recently diagnosed with CBGD and have had symptoms for about 2 years. Luckily, I guess, it has affected my left hand/arm and I'm right handed. I have noticed a stiffness in my left thigh the past week. I read you posts often. I have 3 sons, 1 daughter and 5 grandchildren with 2 more due within the next 5 months. I try to have a positive attitude, but as you know, somedays it's difficult.
ReplyDelete