Hi Y'all. Ken again. Better get used to it. (ha ha)
It's 7:43am on Thursday... three days after Lift Off and I'm still doing fine.
This morning I'm a bit melancholy. I think I just went through something that I believe is going to change my life. For the past 4 years, I've been slowly coming to grips with the reality of Parkinsons... not from your perspective - from mine.
Let me explain.
Your perspective is, "Ken Miller has Parkinsons. How sad. Just like Michael J. Fox - I saw him on Oprah a while back. Doesn't Mohammed Ali have that? Somebody said Billy Graham has it, too. I guess just about anybody can get it. What a drag."
"I saw Ken the other day. He looked pretty good, considering. I have a relative with Parkinsons who's really old and he's in pretty bad shape. I wonder if Kenny will get that bad someday? Well, fortunately he's got a while to go 'till then. Hang in there Kenny, we're praying for you."
Here's my perspective:
"Another day. Same old routine. Last night I woke up every 3 hours craving medicine. If I take a sleeping pill, I get 5 hours, but when I wake up, things are worse. When I sleep, there is basically no brain activity, and therefore no symptoms. But the moment I wake and start thinking, the stupid tremor starts. I try to put my aching right arm behind my head, but it starts banging my head so much I have to pull it away. So, I put it under my butt ...that only minimizes the shaking. It works for about 2 or 3 minutes, then I have to move it again. When the tremor is prevalent, NOTHING is comfortable. I can't put my arm anywhere and relax. Give me some Sinemet (dopamine medicine). In an hour or so, the pain and shaking will go away and I'll be okay for a couple of hours... as long as I take my next dose of meds - on schedule BEFORE the symptoms come back. If I wait too long, and the symptoms start up, I'm dead in the water for another hour and a half until the cycle repeats.
I find myself living by the clock. Every two hours is a checkpoint. If I miss one, I'm in trouble.
This is my life now. It's a dual identity. When I'm out in public during the ON times, I'm like a duck on the water. Above the water line, calm and cool, be-boppin' down the lake. But under the water, the feet are going a thousand miles an hour. By the time I get home, I have to sit or lay down to recover from the ordeal.
I hate night time..... I'm usually exhausted, but can't relax. I lay down on the bed, and my stupid arm won't stop moving -- for at least 30 minutes, or until I finally fall asleep in spite of it. This has become my life. It's crap. But I'm too busy coping with it to realize that it's crap.
NOTE: If you can take the time to watch some of the (ridiculously slow) videos on YouTube that chronicle the ups and downs of my days, please do. A picture is worth a thousand words. The first couple of videos (Pt 1 , 2 and 3) are long but they are revealing. The link at the top of the left column on this blog will take you to my YouTube channel (april13kid - that's my birthday).
When you get there, watch Pt. 00 first. It sets up everything.
Anyway, daytimes aren't much better. Everytime I think about doing something, it stresses me out. Stress magnifies Parkinsons. How do you live a life without STRESS? It's part of the package for a self-employed person, trying to make things happen.
I live for the few good hours where the medicine is covering things up. But still, the more stress in the equation, the less effective I am.
The riduculous thing about this, is that I had become accustomed to this routine. I had gotten to the point where it was a fact of life... my life. I remember thinking at one point a few months ago how great it would be to just be able to stand among a group of friends and talk... about nothing, about everything. How great that would be to be able to engage others in conversation without mind farts and physical fatigue. Oh well, can't do that.
THAT'S BEEN MY PERSPECTIVE... UNTIL LAST MONDAY.
It's hard to fathom that a few volts properly placed in the Substantia Nigra part of my brain could change my life. But apparently it has. No more frustration - No more depression - No more accomodating the Disease.
I'm starting over. (Please, God, let this continue. I beg you to allow me to HOPE again.)
I'm melancholy, because I don't want this to stop. It's so good. Last night I slept from Midnight until 6am - STRAIGHT THROUGH with no sleeping pills! I was rested this morning and actually had energy when I stood up and WALKED to the bathroom... YES - WALKED, not shuffled.
I've been typing without difficulty for an hour now... and I could just go on all day if I needed to.
This week has been life changing...
...HOPE changes everything.
You know, that must be what the writer of Proverbs was talking about when he penned the words, "Hope deferred makes the heart sick, but a longing fulfilled is a tree of life."
DBS has opened up a new tree of life for me. May it be so ... for a long time.
And GOD, please don't let me become complacent and forget where I've been. There is Value in the struggle that needs to be remembered and shared with others.
Enough Melancholy. Let's PARTY!
(Don't make me bring out my accordian, dude!)
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No Crying this time, this was, shall i say, HOPEfull! ;)
ReplyDeleteLove you Dad, we are all praying this will keep up 4-ever! and keep the hope alive!
I feel happiness in knowing that you are able to share how you felt during those long and hard days. It's almost as if being open and honest about the truth of it all is release in itself.
ReplyDeleteI am sure that the difference your body and mind feels is like experiencing the feeling of a true miracle, just like they experienced in Jesus' time. Miracles, even medical driven miracles, are mind boggling and unbelievable. But, as a wise woman (my mother) once said, (ironically during the Christmas season)...."I Believe".
I remember telling Sam when we were first together how you were a different person with parkinsons. It was not a "bad" thing, I was just trying to explain the obvious effect coping had on how you functioned. That I wish he could know the dad exactly the way I remember him to be before PD.
Well, I cannot express how excited I am to see you guys next week, so that Sam and Leo might see the dad and grandpa who is even better than the way I remember him before PD.
I remember observing in the OR one of the doctors massaging your huge cramping calf muscle with her tiny little hands. It was then I came to realize what a "beast" of man your are. I thought to myself, this Alaskan warrior has been fighting his whole life. If it was not one thing it was another and now, after he has managed to help raise two girls and provide for his wife for so many years he has deal with this gnarly condition. I never heard you complain once. Sure you talked about your symptoms and admitted frustration but you held on strong the whole time for us and for yourself. Only now do you take the time to truly reveal the agony of it all. Not hat we didn't have any idea what you were going through, but now your mouth (and hand) is free to share in a spirit of truth and hope as opposed to agony and frustration. Now we see plainly that God is not finished with you yet. Keep it it stud!
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