Well this time things are rough, I fell numerous times. One where I went to turn, my other foot locked and I fell on my side on the ground landed on one of tools, I got a nice tattoo from it, very painful. Equal Librium is off, bending and leaning over, turns into a unexpected free fall. I was taking a shower, for the most part I'm sitting down in a shower chair, went to get up and turn, fell out of shower, I got lucky no bruises. My mornings are getting hard..taking longer to eat, barely able to pick up a cup of coffee. Using fork, spoon are becoming barbaric. Getting cramps more often, nerves are pulsating very much now. Talking is getting worst, labored, lower softer voice. Pain in back of neck increasing when moving head certain ways, raising arms, reaching out. My writing is very sloppy, signature is difficult to sign. thank God for medicine, getting good night sleep. Using bed rail more often to lift up. Opening doors, pull on it, hand slips of, closing door with body, no power in arms to shut it. In the car, hard to seat belt, using feet to open car door. Starting feel more in the spot light with people eyeing my walk and dropping things. Funny when people hear me talk, they think I'm drunk, I give them a wink and a smile.
Well that's it for now, check back for updates. PS, I rewrote "What does feel like to die", I went off track, carried off in the wrong direction, check it out now, seems more of what I intended. Also be watching for my new poem coming in a day or two....Hope it touches your heart....
Wednesday, April 15, 2009
Tuesday, April 14, 2009
My conditions, 04/14/09
Today over all has been a good day ALS clinic, sent technician over to hook up voice activation on my computer, I can also use it on the phone. I received a hands free phone, nice and loud..(thanks God) My voice and speech are deteriorating quickly, so it a good thing to have the prgram at this point, not mobile yet, but then again where do I go, can't drive anymore. It's OK, I was getting tired from driving. A few new things arose, one is in my fingers and hands. The right hand my outside finder, pinkie, I can't close it to my hand, which stays spaced out from the rest. The first finger, pointer, is starting to curl downward and freezing position. When I'm eating, I have to bring my mouth to meet my hand. RI hospital physical therapist gave me some stretching exercising to do. The most important thing now is to stay mobile and flexible, because it will waiste away the muscles and perilize your features. My left hand started showing signs of this disease also, spreading my thumb has become limited to its full movement. In regards to my swallowing, I've been choking more often, certain foods had to be eliminated, lettuces, string beans, certain meats. I started the new medicine last week, I don't the name of it, begins with an Rilusole?, I think thats how you spell it... It is the only medicine approved for ALS/MND, it slows the process down, extends life for two months, in my case two months is a lot to share with my wife and children. Still feeling a lot of weakness, labored breath when talking. Half of my basic functions have been affected now.... I absolutely couldn't button or zipper my pants today, going to the bathroom is a killer, you're one step from ripping your pants off to avoid doing #1/2 in your pants... lifting pants feels like a thousand pounds... I think the pull overs are coming to an end, tee shirts are getting stuck on my head..lol I got a massive tooth ache, dentists won't touch it, fear I'll choke on saliva and micro valve needs prior antibiotics. The last thing I need is pneumonia, or an infection, not a good picture to have. Well that's all I have for this week, come back for updates please pray for my family, God have mercy on me.....
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