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hke2000

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  • B
    sorry about your husband! Nice to see you post. I wish you and your husband the best that can be in dealing with this disease.
    J
    h hke, thanks for asking! All was going well till the night of Sept. 29, 2010. My wife couldn't wake me at 2 a.m. that morning due to carbon dioxide build up in my body. They ended up putting a trac in me and I also had pnemonia. Stayed in the hospital 42 days, came home for 4 months, then went back to the hospital the first week of March for 42 more days with pnemonia. Been home for a little over a week and feeling lots better this time. Got to go to church for Easter, Praise the Lord! Hope your husband is doing well! May God Bless! Jake
    D
    How ARE you doing at this time hke2000? I am sorry..it's been a while since I've been on this website...(not since last Oct.)
    D
    How have you been, hke2000? I was horrified to make a mistake about your occupation...I thought you were a turkey farmer but realized you said you were a farmer FROM Turkey. Farming has always been an honorable occupation. I worked in a place with a couple of people from Turkey..others were Kurdish, Persian and Russian. I had a supervisor from Iraq.
    Yes...PLS is usually slower than ALS BUT upon talking to my neurologist, he said he knew of a couple of long-term ALS patients. Some say Steven Hawking has ALS...
    D
    My walking ability went downhill faster than anything...in the last 4 years I went from a cane to rollator walkers, though I still use canes for shorter distances. My hips are weaker making balance more difficult..it doesn't take much to push me over if I'm not careful. It makes it harder to turn over in bed.
    You said you stopped taking Rilutek and felt better..how? I'm thinking of stopping it myself. I do also take 10mg of the muscle relaxer Baclofen 3 times a day.
    Keep trying to do the things you can do though you may do it slower or differently..it's good to keep that brain to limb connection active!
    I'm sorry this has happened to you so young..and with 2 little daughters..
    I live on a chicken farm in a rental house across from a 2 story turkey house...poultry is king around my area.
    D
    Hello, hke2000,...thank you for your messages! I'm not always on this site so be patient if I don't return messages in a timely manner. I'm trying to figure out what country you're from..where is TR?
    To answer your questions...I, actually, don't have ALS...I have PLS...but I have most of your symptoms except the sweating...the way they figure out if it's PLS is HOW LONG you've had these symptoms and how long it took to come over you.
    My symptoms started in my 40s...I am now 58..mine started with a slurred word here...and there..over the years it got worse...yes, I have the drooling problems and some dysphasia(a little swallowing problem..some throat irritation depending what I eat.) I have the balance problems and have fallen many times...you learn to slow down and be careful about walking since we drag our toes. Godspeed!
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