Main » August 2004

August 31, 2004

Goodbye Mirapex... Hello Sinemet... Oh, And Lexapro

My appointment with my neurologist was yesterday. He runs his office in an interesting way. He was once Head Resident of Neurology at Emory University Hospital and I believe he still has rather close ties with them. The people I saw at Emory back in June all spoke very, very highly of this doctor and assured me I am in very capable hands with him. I think that a recommendation from a nationally recognized recognized hospital like Emory says a great deal.
I said earlier that he has an interesting way of running his office in that there are interns working with him, you go in and two or three students come in after you and do your initial information taking and recent history. They do the physical checking also. Then they go and consult with the neurologist and he comes back in with them and they observe him in action.
It can be a little overwhelming to have 5 people (including my wife) in the examination room with you... especially talking about things that it's sort of embarrassing to discuss like depression, my arms shaking and my toes forming cracks and calluses (sp?) from curling in as I walk.
But I guess you have to get beyond that and figure that this is part of their education and this might in some ways help future patients of theirs. And it doesn't help me to hold back because I am being shy, right? Right.
What it boils down to in a nutshell is that the Mirapex wasn't helping as much as it was hindering so he is prescribing me Sinemet for the Parkinson's symptoms and also Lexapro as an antidepressant. I literally just took the first dose just before I began writing this entry so I can't report yet on anything except slight anxiety over what effects these medications may have on me.
I have never taken an anti-depressant before so I have no idea what to expect to feel or anything. I'm not wild about the idea and have resisted the idea for years. But even the casual reader of this diary can see something is up in that department that needs dealing with.
I'll try to keep things updated here so that perhaps patterns can be seen.
Forgive me in advance if this diary just seems very self-indulgent for the next little bit here. But gee, aren't diaries by their very nature self-indulgent?
Thanks for being there.

Posted by Lalo at 5:19 PM | Comments (13)

August 19, 2004

Letter To The Editor Adventure Continues

Our local paper is a weekly and comes out every Wednesday.
Yesterday we got our paper and noticed they did publish my letter.
Every word of it.
It did sort of freak me out to see my words in print like that.
For the first few hours I found it sort of hard to look at.
Did I really write this?
It felt kind of disorienting to see my name at the bottom and my life in a newspaper.
I don't regret writing the letter, in fact I am pretty proud of it.
It just feels odd, you know?

Posted by Lalo at 4:57 PM | Comments (3)

Mirapex... Our Love/Hate Relationship

I was prescribed Mirapex for my Parkinson's symptoms.
It does lessen the tremors a lot. But the side effects are kind of difficult to deal with.
Like today for example.
Woke up in a semi-depressed cloud this morning.
The closest I can explain it is to picture how it feels right after you've had a turkey dinner and you just feel so tired and want nothing more than to sit or lie down someplace and just veg out.
With Mirapex, that's the way it feels.
That grogginess.
The difficulty comes when you wake up feeling this way but also have a busy day ahead of you. The demands, which wouldn't be excessive normally, seem so overwhelming. Each little thing seems like too much to ask.
But you have to push through those groggy feelings.
Well, try to anyway.

Posted by Lalo at 5:52 AM | Comments (3)

August 13, 2004

"Coming Out" As A Person With Parkinson's

Well, now I've gone and done it.
In this week's local paper someone wrote in criticizing Stem-Cell research and I just had to respond. It was just so full of misinformation and political/religious agendas.
I thought it might be interesting for people to get a viewpoint on Stem Cell research from a person who might quite possibly benefit.
Anyway, here's the letter. It's kind of long, but I did have quite a bit to say.

To The Editor;
Jackson Progress-Argus

Dear Sir;
Imagine what it might feel like to be 42 years old, finally after years of hard work and struggle, building a career and life, to discover a tremor in your arm and then be told after testing that you have Parkinson's Disease, a term you had never thought twice about before. When you have heard of it in the past it was always associated with the elderly, surely not someone as young as you.
You then go on to discover that Parkinson's Disease is a neurological disorder that affects the neuro-muscular functioning of your body, looking down the road you picture yourself wasting away to weakness and incapacity, the only variable in Parkinson's being not necessarily what will happen to you but how fast it will all come to pass.
Imagine having to leave the career you had spent more than a decade working hard to build, one in which you had achieved an amount of success that told you that perhaps you had found your life's purpose. Imagine that you had to leave all that behind because your body could no longer keep up with the demands of your job.
Imagine your self-esteem in that all your life you had an image of an adult male as being a breadwinner to his family, holding up his own end of the financial bargain in a marriage, and now you find yourself increasingly relying upon your spouse to take up the slack at the end of the month. Imagine how this might affect your self-esteem and sense of worth.
Imagine the medications you are prescribed having side effects that often seem to outweigh the Parkinson's symptoms, including fatigue and grogginess which makes you feel tired and worn out most of the time.
Now imagine that you begin hearing about something called Stem-cell research. It's also a term, like Parkinson's that you had not had reason to come across until now, but you are also hearing new words associated with Parkinson's and Stem-cell research that you had never heard before. Words like "hope", "possibility" and those precious words, "heal" and "cure".
You had been picturing a life of less and less functioning, growing weaker and weaker until you were finally prematurely bedridden, a living death, but now you sense something new, a spark of hope. A dream perhaps because it is all so experimental and sounds so complex, but nevertheless, a spark inside that you had not felt in a long time.
Now imagine this hope being dimmed. Dimmed due not to the limits of scientific possibility but due to a world-view, an ideology. A view based on one group of people's interpretation of their sacred book. Their religious viewpoint. Due to this world view much-needed federal funding is prevented from paying for research that could alleviate your discomfort and perhaps even find a cure.
You try to imagine why something so personal as a religious view has to encroach on others like this. While you respect and admire their convictions, you realize that this should work both ways, after all, you have always been careful not to impose your spiritual values on others.
It becomes confusing when you think that the people who have this thinking seem to value a barely formed set of embrionic cells more than they value you, a formerly very productive adult with a family and loved ones, who would like nothing more than to return to full employment and his place in society.
You then wonder about a set of beliefs that proclaim God is love, so much love that it is taught this God willingly gave His only son to earth to die for man. Surely, a God of sacrificial love and giving for others could not be adverse to a few cells being given to save an adult human life. But sadly, this God's followers would seem to disagree.
In this letter I've written "imagine this" and "imagine that" a lot, but this is not an imaginary journey for me at all. I live this letter daily, it is my very life and my heart. You will probably turn your eyes from this article and my life will be forgotten, and that's okay, but I want to write this so you know that this is not some game of debate and theories we are facing here. I am the guy in the line with you at Ingles'. I am in the car next to you going down Third street. I am the man in the voting booth beside you. This is real and we need real answers to this devastating problem.
Perhaps one day we will look back at 2004 and wonder about how backwards we could have had things. I remember hearing that certain vocal members of the clergy used to preach against radio and "aeroplanes" because the devil is called "the prince of the power of the air". We can chuckle at them and think they were so wrong, but let's not be like them, let's not stand in the way of possibility and potential with active, productive people like myself falling from our ranks, a possible cure sitting on a shelf as we debate and quibble endlessly.
Stem Cell research means needed hope and a possible cure for me and others like me with many, many diseases and disorders, not just Parkinson's. That is the reality of it all. The rest is details.

Posted by Lalo at 10:35 PM | Comments (0)

Shaken Not Stirred

My apologies for not updating this diary in the past several days. I haven't felt like I had anything worth saving for posterity, you know?
It's been just an average week, good days and off days, things come and they go.
Foot pain has been an issue. I haven't read about this anywhere but I'm discovering that the toes on my left foot are starting to curl and clench as I walk around, kind of stiffening as my fingers first did on my left hand.
We will see I suppose if anything comes of that.
Because of feeling down, I haven't been getting out at all except for absolute necessities.
But I'll be all right.
You watch.
I'd like to publically thank those who left comments for me on my last entry. I take these letters to heart and they have helped to keep me focused and lighter in heart. I thank you for taking the time to share of yourself with me.

Posted by Lalo at 10:21 PM | Comments (0)

August 1, 2004

Randomnities

Over at the Muhammad Ali Parkinson's Research Center they are compiling an interesting long-term study involving a PD patient database. The Link Is Here. I gladly participate in studies like this because PD is being intensely researched and perhaps the information I share, combined with others might be a key.
Well, you just never know.
It's something I can do, you know?

Posted by Lalo at 9:47 AM | Comments (2)