Tuesday, December 30, 2003
Christmas day has come and gone, New Year's eve awaits. Christmas was very nice. It did finally snow on the 25th, so we ended up having a "White Christmas".
On New Year's eve, we are having all the nieces, nephews and their parents over for a party/sleepover. The kids will watch the DVD's they got for Christmas before watching the "balldrop" from Times Square at midnight. All the kids get to crash on the living room floor for the night. It should be fun.
An annoying ear infection a couple of weeks ago notwthstanding, I have been feeling pretty good overall. I find I actually speak better after a good night of rest. My legs feel kind of stiff most of the time, but I deal with it.
I try to remain positive in my outlook, despite my limitations. So far...so good.
I got a new tattoo last Monday on my right bicep. It's about six inches long, black. It's a picture of a hot looking chick in lingerie and heels with my wife's name under it. The picture looks a lot like her. It's racy, and cool too. I have the same image on the back of my white strat. minus her name though.
We passed a new contract at work, which includes a different health care plan. The new plan covers massage therapy (12 per year), so I will ask my neurologist if he will advise it for me. I think regular professional massage, especially on my legs, will go a long way in making me feel better.
Posted at 12/30/2003 10:17:04 am by Mike
Thursday, December 18, 2003
Have been battling an ear infection for about a week. I finally went to the Doc this past Tues. and have been taking antibiotics. I am feeling a lot better already.
I took off sick the last 2 days at work, so I went out Christmas shopping yesterday afternoon since I was feeling a bit better. I got it almost done, I need to pickup a few more things, probably this weekend. Well, I'm leaving work early today,so...gotta go!
Posted at 12/18/2003 1:23:12 pm by Mike
Wednesday, December 10, 2003
I've been putting up Christmas decorations for the last week or so. With my situation slowing me down, a 1 or 2 day job has become a long and somewhat tedious process. My wife and kids' interest in helping get the job done, seems to come and go, which has been frustrating. I don't mind doing it myself, it just takes so damn long!!! To be fair, they have all helped somewhat.
Anyways, everything is almost done, and the house looks pretty good. Every year, I make an Advent wreath out of fresh branches for the dining room table. Last night, after everyone else went to bed, I got around to making the wreath. I turned on the tree lights, put some Christmas tunes on the stereo, and started making the wreath. I cleaned everything up, and placed the wreath in the center of the table. I turned off everything but the tunes and the tree lights. I sat there in the rocking chair for almost an hour, just soaking up the atmosphere. It's hard to explain...but everything felt right. At least for me, the Christmas Spirit seems to have arrived!
Posted at 12/10/2003 1:42:20 pm by Mike
Monday, December 08, 2003
I went for my latest MRI of my brain over Thanksgiving. They called me last week and said they found nothing! (found nothing...get it? ha, ha). Seriously though, they said it appeared there has been no further deterioration since last year's MRI, which is good news. I have been feeling pretty good lately. I've been a bit more open with everybody about my condition, and everyone has been great. I think everybody is relieved to not have to tippy-toe around my situation, knowing I will not be offended at their well intentioned offers of help.
We've been decorating the house for Christmas over the past few days. I hope to finish it up tonight. Everything is looking great.
My brother in the Air Force just left for Utah for some supervisory training. He is stationed in Okinawa, and paid us a surprise visit over the Thanksgiving holiday. As we had not seen him in over 2 yrs., his visit was a great and welcome surprise. He is coming back with his family in July.
I sincerely hope everyone has a merry and blessed Christmas!
Posted at 12/8/2003 12:04:18 pm by Mike
Monday, November 10, 2003
I finally got my next MRI scheduled (Thanksgiving week). This crappy balance and messed up speech is a real pain in the ass at times! ...That concludes our whining for today. Thank you.
Posted at 11/10/2003 12:15:17 pm by Mike
Thursday, November 06, 2003
I haven't been here for a while, though not for lack of trying. For some reason, access to this site on my work PC has been blocked, until now, that is. I never get enough freetime to sit at home and do an entry.
Anyhow, saw the Doc Oct 7th, he said my condition has not changed since last time, which is good. I went back on the Celexa (it's been about 1 month now). I seem to have a better attitude and the tremors are hardly noticeable, compared to my first try with this.
He wants me to have another MRI done of the brain, I guess it will be compared to last year's model :)
Posted at 11/6/2003 12:52:07 pm by Mike
Wednesday, October 08, 2003
As of today, I have switched the background color, so I can stick with a basic color for the text. Although the first couple of posts may be a bit difficult on the eye, using one color for text will make it easier should I wish to print the pages in the future. I know,boring...but in this case the means will justify the ends.
Posted at 10/8/2003 9:21:22 am by Mike
Tuesday, October 07, 2003
Went for a visit with my neurologist today. One of the things he suggested was that I start keeping a medical journal of sorts. I figured here would be as good a place as any, so I'll use this blog primarily as a way of documenting how I feel as time goes by.
As you can probably gather from my first two posts, I've been giving off an angry/depesssed vibe.
Having an extremely rare motor-neuron disease can do that to a guy I guess :)
I have been seeing a neurologist for nearly two years now. As my diagnosis can only be made by ruling out other stuff, I have had pretty much every neuro type test known. PET's, MRI's, EMG's, SPECT Scan, various genetic blood tests, and others I forget, as well as my Doc's clinical observations. So far indications are leading to a diagnosis of Primary Lateral Sclerosis, a non-fatal little brother to ALS (Lou Gehrig's Disease). I know, it sucks, but what can you do?
At first they were leaning towards something called spino-cerebellar degeneration, but the SPECT Scan (I think) showed depressed activity in another part of the brain.
Six months ago, the Doc put me on Celexa to help with a mild depression I appeared to be developing. It definitely helped level out my mood, but was causing me to have tremors, so I discontinued it. The tremors went away, but my foul mood has been creeping back.
Last checkup 3 mos. ago, the doc referred me to a shrink, but I still didn't think I was that fucked up, so I blew it off.
On today's visit, I explained that to my doc, and he suggested I give the Celexa another try, and see if I can live with the mild tremors (a visit to theCelexa website said that side effects tend to go away over time, so I'm going to give it a shot).
I've been taking Zanaflex for over a year now. That supposedly helps relieve spasticity in my muscles.
My legs (especially my calves) always feel stiff anyhow, so I'm not sure if or how much the medication is helping (I am scared to stop the meds to find out though).
My speech is a bit messed up and my balance is off. If you didn't know me you would assume I was drunk. You can imagine the embarrassing situations I often find myself in.
My speech gets worse as I tire. I also find I fatigue a lot easier these days. I have to get back to a regular exercise regimen. I used to lift fairly heavy and was generally quite active, so needless to say, this drastic reduction in my physical activity has been playing with my head quite a bit.
I realized today though, that I am affecting my wife, kids, relatives and friends as I deal with this.
That being said, I intend to set a better example to those around me, and realize they are trying to help, not hinder me when they offer assistance.
The doc said today he has not observed a big change for the worse since he started seeing me. As this is a non-curable progressive disease, SLOW IS GOOD!
Well, I guess I'm off for today. In the words of Red Green, "Keep your stick on the ice."
Posted at 10/7/2003 8:05:41 pm by Mike
Saturday, September 27, 2003
Stupid, Tired, Mildly Hungover
Ugh! Here I sit at my desk at work, tired, with a mild hangover, recalling over and over what an ass I was towards the wife last night. Went to the weekly guitar jam, which was cool. She picked me up there at 10 and we met some other folks at a bar. I have a fairly rare neurological condition that makes my body act like I'm drunk, so after downing several beers I looked way worse than I actually was. Of course, I was very self conscious, and on the way home I stupidly lashed out at the wife for telling me I had drank enough beer (which by the way I had). I sent her an email from work apologizing for being such a tool. I'll apologize in person when I get home.
Posted at 9/27/2003 2:05:40 pm by Mike
Tuesday, September 23, 2003
I HAVE GONE BACK AND DELETED THIS ENTRY BECAUSE IT WAS NOTHING BUT NEGATIVE CRAP, I PROMISE I WON'T TAMPER WITH FUTURE ENTRIES...REALLY.
Posted at 9/23/2003 10:36:16 am by Mike