February 1 – D- Day – well, God had other plans. A MAJOR snowstorm hit with number two coming tonight. The storm dropped a whopping 5 inches of snow (yes, sarcasm) but since it was supposed to be worse it caused widespread panic and cancelations including my neurologist appointment. Yeah, everyone over-reacted, big surprise. THE appointment has now moved to Friday. I have to suffer through the rest of this week wondering. My wife is right, though, chances are, I’m not going to find out anything definitive during the appointment, but I’m tired of waiting. I keep reading blogs by people that have been diagnosed over the last 5-10 years. Most are pretty upbeat. I guess I’m searching for what to expect, but the great part of Parkinson’s (yes, more sarcasm) is everyone is different. They have no idea how fast things progress or what progresses and what doesn’t. Overall the consensus is that it still sucks no matter what level you have. No one really talks about their bad days in any detail, though. Makes me nervous.
Read some articles today about the benefits of exercise at slowing the progression of the disease. Great, more of what I don’t want to do. Why is it always more exercise? Why can't it ever be more chocolate pudding?. Maybe this problem is just God’s way of making me get into shape. Here is an article on the effects of exercise
February 2, Groundhog day (new D-2), and I hope I don’t have to live last night over again. Felt pretty good going to bed, had a good day with minor symptoms so no drugs I decided (Advil or Advil PM is as hard as I go, …for now) and went to sleep.
1 am wide awake – started thinking about all the bad stuff that can happen with this disease. Just what was late stage Parkinson’s and could I survive it? By that point, would I want to? I scared myself awake and now there was no fixing it. I couldn’t get comfortable, no matter what I did.
2 am still awake
3 am still struggling then finally at 3:15am I took an Advil PM.
3:30 am still nothing.
4 am – went downstairs and laid out in the recliner. Dozed off after a bit and then, magically, it was 6 am. Time to get up. Fell back asleep till 6:15 when my wife came down. Ugh, getting up was hard – Never take Advil PM so late errr… early! From what I read most of the meds for Parkinson’s don’t help with sleep. Great, just great. This so far has been the worst part. I've got to find a way.
I’ve done so much research on Parkinson’s that if I don’t actually have the disease I’ll be lost. Not that I want it, believe me, I DON’T. But, I keep looking up other things it could be and don't like the options. Only time will tell, unfortunately. With this disease, all you can do is wait and see. Fridays appointment can’t come soon enough. I hope it’s not a letdown. It’s 6:30pm now, Wednesday, Feb 2nd and 3 hours till I take 1 or maybe 2 Advil PM’s to help, hopefully, make a restful night. Oh, by the way, groundhog predicts early spring, yippee!
February 4, 2011. The new D-day. I’ve been praying this is something else but somehow deep down I have this feeling that I know.
My wife and I got to the Doctors office at 10 am, right on time, off to a good start. Did the obligatory exchanging of the insurance info and only waited about five minutes before getting called in. The Physician’s Assistant was a happy lady, too happy for the mood I was in, and we reviewed all my symptoms. After a page full, I warned you that I am very observant, she did some quick tests and was off to get the Doctor. He was nice and was very interested in seeing for himself what was wrong with me and not jumping to conclusions. Standard tests, walk here, touch this, look over here. He tested some reflexes and grabbed my arms. At the beginning of the appointment he said he couldn’t be sure I had Parkinson’s but by the end he said it was better than 50% chance. I could tell by the way he looked at me that it was higher than that. We talked about other testing I should get and he wants an MRI to make sure there are no lesions or tumors, oh what fun this has become! Blood tests were ordered to rule out anything with the thyroid. You've got to love a disease that has no real diagnosis. "You might have this, or one of these 10 other things." You start wondering what would be the least objectionable. It surprised me he didn’t know anything about the new DaTscan approved by the FDA for detection of Parkinson’s. But, it was just approved 2 weeks prior and Parkinson’s isn’t his specialty. He suggested we go to Philly to the Parkinson’s center there, but I think we may go to Rochester. Closer and they have the DaTscan. I wonder how much that costs? (future blog coming about my many DaTscan’s and how I was almost arrested because of one). On the way out I asked what we should do going forward and his answer stung me to my core. “Enjoy life now while you still can,” he said. Now how am I supposed to take that? I know he meant well, but it felt like I was just given a death sentence.
We came home and my wife and I hugged and she cried. Although I have no idea what’s going to happen to me or how fast it will happen, I feel the worst for her. I read about these caregivers for Parkinson’s patients and I don’t want her to become one. She is my wife not my nurse. She shouldn’t have to be both. Oh, I’ve had that damn smell with me all day today too. Sweet, antiseptic, Band-Aid smell. Couldn’t shake it. This disease is just weird.
Couple things I didn’t tell the Doctor and will wait for the specialist. I’m worried if there could be a transfer of symptoms over to my automatic reflexes like swallowing or even breathing. I’ve started to occasionally drool at night. I know, gross right, but it was like I forgot to swallow. Scares the hell out of me if it can affect other things that are supposed to be automatic, like breathing. Update: I confirmed with my new neuro that it can’t – whew! Although, I did find this on autonomic dysfunction, hmmmm?
Next up – Superbowl meltdown plus the first of many
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