Main » July 2004

July 23, 2004

Just For Smiles

"Man wait for long time with mouth open before Roast Duck fly in"

Posted by Lalo at 9:29 PM | Comments (3)

July 20, 2004

More Movement Better Feeling

Well, me actually.
I finally finished putting together my wife's bicycle last night. When you have PD, trying to screw nuts on bolts and other fine motor type tasks can be pretty difficult.
Neither of us had been on a bicycle in years and years so my wife was a little nervous about getting up on it.
But someone had to test the bicycle out, right?
(raising my hand)
So there I went, hopped up on that thing and wobbled off tentatively.
Did I mention it was after midnight?
Well, I think that was a good time because the evening was cool and the streets empty.
It's a one speed bicycle so peddling is strenuous but once I got going I was surprised how quickly I took to it.
At first there was a rush of disorientation which I think is the body's balancing system asking "What is going on???"
But it soon found it's level and memories of my last bicycle ride probably 25 years ago kicked in and I was peddling away.
Don't let me make this sound like it was a breeze, I still wobbled and had to stop a lot to get my bearings. Being on a bicycle is a very different feeling.
With a bit of practice I was going up and down the street to the point that I could drop the hypervigilance and just enjoy the cool night air on my skin and the coasting of the bike.
After I parked the bike, my wife told me I had a big smile on my face.
Yeah, I guess I did.
I had acomplished something pretty major.
I had put a bicycle together... one that came with instructions missing... thanks Walmart.
And, after a few adjustments the bicycle actually worked.
And I found the gumption (how's that for a Southern word?) to get up on the bike and ride around the neighborhood.
Okay, so maybe I may have looked to the one truck that passed me on the road that night like one of those bicycle-riding Russian bears you see in the circus, but I didn't care.
I had a great time.

Posted by Lalo at 10:36 PM | Comments (2)

July 13, 2004

First The Rise...

It's 3:15am here in Georgia. I am about to go to bed.
Last night we went to an auction and for the first time in a long time I felt normal out in public.
Why was that?
(thinking)
People were friendly for the most part.
Maybe the attention required at an auction and the excitement kept my mind off the PD. I noticed some shaking but did not feel it was a lot.
Maybe I'm just used to it.
But tonight I feel good. Normal.
Something I once took for granted becomes something to cherish.
Makes me want to get out more.
Ride this wave of good feeling.
But, as someone once told me...
" I feel at one with the universe, I feel happy and content, at peace with everything around me.
But then it could just be the medication...."
lol
Hey it might be, but I am still going to enjoy it.
Good night world.
Things aren't so bad sometimes, huh?

Posted by Lalo at 5:19 AM | Comments (1)

July 10, 2004

Neurology Here I Come

So to continue my basic biography, which will probably end up being an ongoing thing in between regular updates, I was referred to a neurologist by my regular physician.
The neurologist (Dr. K) seemed very knowledgable, he told me that Parkinson's is really only truly diagnosed via a biopsy and that it is disgnosed in the living basicallly by process of elimination and how/if I responded to medication.
So if I am given PD meds and my body responds positively, it's most likely PD?
Hmmmm.... ok.... this was a new way of approaching things.
So I was prescribed Requip which, I was assured, was the "latest drug" and had the least chance of causing long term nerve damage... dyskinesia... where your nerves go through involuntary twitches.
Wait a minute...I thought PD already had that twitching base covered?
Hey if nothing else, one good thing about having PD is that it increases your vocabulary with some cool sounding multi-syllabic words.
Besides being prescribed Requip I was sent for an MRI on my brain in order to rule out other neurological problems that might be causing the tremor.
But... before we cover the joys of an MRI let me tell you of the sheer fun of Requip.
Let's see... nausea every morning, dry heaves...absolute bliss and rapture, you can be assured.
It felt, to be frank, like the way I have heard chemotherapy patients describe their reactions to treatment.
My wife calls Dr.K and he responds "Oh, his dosage must be too much, take it down a bit". Well, I do that and lose the vomiting part but nausea every morning sticks with me.
Just a side effect, I am assured.
Now my mind starts to put things together here, sort of adding things up.
I went to Dr.K because I had a slight tremor in my left hand.
I was given medication.
Now the tremor has lessened somewhat but I feel nauseated most of the day.
Is this worth it?
Is the tradeoff worth it?
Well, in seeing that the tremor was lessening I remembered Dr. K saying that if my symptoms responded to the meds it was probably PD.
It was responding.
Lessening.
Uh oh.
That and also my MRI came back showing nothing that might be causing a tremor.

Now the MRI was interesting... you are put on a table, your head in a brace cage of the sort not unresembling something Hannibal Lecter might have sported on days he was being moved.
But the head must stay steady for these things.
I understood that.
You hold steady while a technician is behind a glass partition adjusting the mechanism.
You have time to think while having an MRI.
Staring at the ceiling through the bars of your brace you wonder what in the world brought you to this point in life.
I found myself going over my life, oddly enough.
Picturing myself as a child with such tremendous potential and life.
Such hope and possibilities for the future.
Playing, moving freely, happy.
The scene returns to present day and I realize that here, strapped on this mysterious contraption which makes strange noises, I have never felt so vulnerable... so lost.
Like in those stories we all heard as children where Hansel and Gretel go off into the forest, leaving breadcrumbs behind to find their way home only to realize too late that the birds had eaten all hope of return.
How did I get here? This dark forest of medical mysteries.
Machines and brain scans, nerve endings and muscles that no longer respond properly. A new language that I don't speak but pertains to me intimately.
A not a bread crumb in sight.
Not a signpost home.

An MRI is like an X-ray, but very sophisticated. Unlike the typical X-ray we think of for bones, an MRI can sense softer tissue like brain, sinuses, spinal cord, eyeballs, all those fun innards.
It takes cross section pictures. Not unlike someone taking slices about a half-inch or so thick. (I apologize for the grotesque imagery)
I was given the MRI films, after Dr. K Gave them a cursory glance he said they looked fine and so we would proceed, based on that and the response to the meds, to treat this as Parkinson's Disease.
Thus was I diagnosed.

Enough for this entry I think.
Thank you for reading this.
Thanks for listening.

Posted by Lalo at 5:32 AM | Comments (0)

July 9, 2004

The After Midnight Mirapex Blues

Here it is almost 1:30am and I am awake.
And this has become my norm.
Bed at maybe 3am when my body and mind just crash.
Up at 7 or 8am feeling like the Tin Man from the Wizard Of Oz looking for his lost oil can.
I am usually okay in the morning, then I take the Mirapex and an hour or so later I am groggy, my thinking clouded and confused, my energy down to almost nil. Sleeping if I sit still for more than 5 minutes.
Like old people.
Mirapex has this affect I am told, switches with your circadian rhythm.
But I push myself.
I have to.
Because unless I intend to spend my time haunting the all-night Walmart, the real world keeps daylight hours. I have to be up, make myself function as a sleepwalker in the world of the well rested.

Posted by Lalo at 10:19 PM | Comments (0)

By Way Of Introduction

I am sitting here at the outset of an online diary and I am wondering how to approach this.
I think what I will do is give you a few basic facts about me, the rest should fall into place as I write more.
I am 43 years old and have been diagnosed with Parkinson's Disease.
My diagnosis was given to me almost two years ago.
I take Mirapex for it.
The very first thing I noticed was a slight trembling in my left hand. It was the middle of winter and I put it off as being shivering from the cold, that it was only in one hand did seem odd but my mind did not/could not conceive of it being anything more than just winter shivers.
Well, winter passed but the shaking did not.
I looked up my symptoms online and discovered that the closest thing to what I was experiencing... I learned a new phrase "resting tremor"... were people with Parkinson's Disease.
I dismissed that thought from my mind.
No not me.
Couldn't be.
I was way too young for this to be happening.
So we went to our family doctor and told him what I was experiencing, I purposely avoided using the term Parkinson's because I disdn't want to lead his thinking at all.
He said it though.
I remember it clearly.
"It looks almost Parkinsonian."
He did some wrist movement exercises and it shocked me how stiff my wrist had become. There's a thing they call "cog-wheel rigidity" which means that when the affected side wrist is rotated the person doing the rotating can feel it moving not smoothly at all but with a clicking sensation like, as it is called, a cogwheel.
At this point my wife asks me if I am okay because I apparently went very pale.
Maybe the combination of seeing that my wrist was worse than I even knew, the word "Parkinson's" being mentioned or being told by my wife that I had gone pale... I don't know. But suddenly I felt tears welling up.
The doctor reached for his trusty box of kleenex and tried to be as reassuring as he could be.
He's a good doctor.
Anyway, he is not a neurologist and neurologists are where you go to get deeper into finding out what a problem like this might be.
This is probably enough to read for one entry though.
I'll continue this later on, okay?
Gee, I hope this somehow helps someone out there.

Posted by Lalo at 7:07 AM | Comments (0)