Old 12-27-2007, 12:23 PM #1 (permalink)
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Red face Feel so helpless!

My wife, a nurse, was diagnosed on Feb. 14/2006, Valentines Day, with Bulbal ALS. Happy Valentine's Day! Her first symptom was difficulty with swallowing nd some slight slurring of her speech. These symptoms started very shortly after she tripped and fell, quite hard, hitting her head. We thought that she may have damaged a nerve and that was causing her symptoms, Alas not so. Anyway it took only about 6 months to diagnose ALS. Now almost two years later she can no longer speak, she uses a communication device and takes all of her nurishment through a feeding tube. She cannot swallow anything. She only started disability about two weeks ago, she still can drive and do most things. At this point it seems to be her fine motor skills that are affected, like doing up buttons or her bra, etc.
She is SOOOO strong, much stronger than me. I find myself crying quite often and often asking the good person upstairs to take me instead of her, she is far to good a person to be affected by this disease.
Anyway, Tammy, at a recent local walks for ALS, rallied a team together and raised close to $4,000.00. She is not letting this stop her.
There have been many contraversial dicussion on natural medicine vs traditional medicine. We chose to follow both, within reason, and we do feel that it is helping or at least slowing down the progression. But maybe we are fooling ourselves.
Thant's it for now...Happy holidays everyone.
Mark
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Old 12-27-2007, 03:25 PM #2 (permalink)
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Welcome Mark to this wonderfull forum.So sorry however at the same time that you have to be here.You will find so many caring loving people to help guide you comfort you and just listen to you anytime day or night.This disease is such a terrible monster and feeling helpless unfortunately i think comes with the whole package.Your wife sounds like such a wonderfull person whom has dedicated her life to helping others.This disease however dosnt seem to descriminate.I am so sorry that you are having such a difficult time coping right now.We all have those days and i hope you will find some comfort here!My husband also has als and was diagnosed in 2004..I have spent many a day in tears or close to tears...You are stronger than you think! Its amazing how we all seem to find the strength when we think we cannot go on.You will be in my thoughts and prayers.........Gina
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Old 12-27-2007, 04:23 PM #3 (permalink)
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Unhappy Helpless tears

I have cried many many tears,I feel so angry at times,but seeing your story mark gave me a little bit of hope,becuase you know when you hear those dreaded words there is NO CURE,I started to hyper venitilate in the dr's office,my husband is the one who has ALS,he seems to be this tower of strength right now,and it is mind numbing at times,as i sit here angry angry...I wanted to say thank you for posting mark..I mean we are in early stages here he has lost movement in his right foot and it is moving quite quickly to his other leg and arms,it scares me how fast its moving! sorry if i rambled on it just doesnt make sense to me right now...
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Old 12-28-2007, 08:01 PM #4 (permalink)
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Most people say it takes a while for it all to sink in. You've been hit with a big one. You both probably need to give yourself time. We will be here at every step of the way. regards, Cindy
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Old 12-30-2007, 10:19 AM #5 (permalink)
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Thanks. I've been reading a lot of the comments, questions and answers and it's pleasing that there are so many people willing to listen and offer help.
THANKS SO MUCH EVERYONE!
Maek
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