No cramping with ALS

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BWk

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Is there anyone out there that has not had any cramping at all like myself ?I am about 1 1/2 to 2 yrs into this disease [als]. It seems to be pretty much the case with most others[cramping]. Am I just lucky so far?Also I feel weaker but it is pretty much 'whole body ' I don't have any part of me that is weaker than any other part of me? Barry
 

marlo

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Barry,

I don't think your all that unusual ,, mine is progressing slowly too. Sometimes i almost feel guilty that others are breaking down faster than i am,, but then i stop and thank God for his blessing. Hope you have many good days too.

Love and Prayers
Marlo
 

papaw50

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cramping

Hello,
My husband was just diagnosed about three months ago. I've done LOTS of research! I've been wondering the same thing because he's not had any cramping. He has the twitches, both arms are weak, both hands are weak and his fingers are curling under, fatique but no cramping whatsoever. We are going for a 3rd opinion in August.
We were on vacation last week and I noticed his hands are trembling more now whenever he is eating. He dropped his fork/knife a LOT and spill his drinks. On Sunday, he even "allowed" me to cut up his steak for him. I've been buttoning his shirts.
How does one know if they progressing slowly? what is the time frame?
Thanks,
Patty
 

Al

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It is so hard to give you an answer Patty. I haven't been able to button up for about a year but can still cut my meat. I can still walk but not far and have had a Dx since. Oct 03. Another guy I know was diagnosed in Dec. and can't walk now. His hands are better than mine. You just never know. Try to do the best you can today and not worry about tomorrow. AL.
 

BWk

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Go figure

Al
A lady in my town who started with sypmtoms about the same time as myself died already in March of this year ! She was 70 yrs old. The other lady here with Als has lived twenty yrs. She is a vegetarian,that's all I know about her. Al, I moved out to the country and it was exhausting, but worth it, I read somewhere where you had moved to a country place. It is a lot more restful for me, same for you?Thanks for the reply, MARLO.You young people hang in there it's rough, but you will have support from us on the site here. I live each day one day at a time. I almost was struck by lightning yesterday so who knows for sure when and how one's going to go! Barry
 

Al

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Geez Barry now that would have been real bad luck. Getting hit by lightning and having ALS. What are the odds of that. Better buy a lottery ticket. Maybe your number is coming up. I find the country very peaceful. Our backyard in our last place was 36 X 30 feet. Our patio here is bigger than that. There are at least 60 trees on the property and I just love to sit in the shade on the patio and have coffee in the morning. Very restful and the wife and I get to talk.
 

southern lady

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Wishful thinking...

ordinarily I do not dwell on what I can no longer do, but hearing about drinking coffee & talking to your wife, brings back old memories. I was diagnosed with bulbar ALS in Mar 05, tho I had symptoms some months before. Slurring of speech forced me to give up teaching (algebra & Spanish), I can no longer go to Nicaragua with mission team (one of my greatest joys!), now I cannot communicate unless I write it down. It's hard to have a real conversation with a dry erase board. I gave up coffee since I have to have thickener in it to get it down without aspirating. Thickened coffee just won't cut it--& what I would give for a glass of ice water! My daughter & 2 Granddaughters are here for a visit & it is so hard not to be able to say prayers when I tuck them in at night, not reading bedtime stories. They always thought I was the "fun" Meme who could do whatever they did. Oh, well, enough of this it is beginning to omit the stench of self-pity & I ONLY ALLOW MYSELF 15 MIN OF PITY PARTY ONCE A MONTH. This is the day the Lord has made; I will rejoice & be glad in it. I may even live dangerously & have some coffee!
 

Al

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Sorry southern lady. My intent was not to make anyone feel bad. I know how the pity parties can be as I have had a few myself. I hope to be able to remember these days on the patio for a long time. I cherish the times I have now and don't dwell on the things I can't do anymore and there are lots of them that used to be fun. A friend brought a new model of motorcycle for me to see the other day. 2 years ago I would have rode it. Last year I could have been a passenger. This year I couldn't swing my leg over the seat. The good thing about all this is that my friend came to visit and knows I still like to look at a fine piece of machinery. We had a beer, shot the breeze and it was like old times. I've known this guy almost 50 years. Friends since grade 5. Makes you forget your disabilities when people like that visit. Going to visit friends tomorrow and we're going to this bar down on Lake Erie that we go to to eat perch and watch the boats go by. I don't want to make anyone jealous but just want to let you know I'm not done yet and I still live for the day. Also might not get to post until late Sunday. Have a good weekend. AL.
 
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