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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


Tammie ~
I am so sorry for you. My husband and I are in the same boat. His dad is nearing the end of his struggle w/ ALS. He was diagnosed in April 06, although he had symptoms for at least a yr and a half prior. We all thought that maybe he'd had a stroke the way his speech was beginning to blur. His symptoms appeared within a month of beginning a course of statin drugs for slightly elevated cholesterol. We've since learned that the motor neurons (which are affected by ALS) require cholesterol to function. Doesn't matter now; we've gone thru all the prayers, hopes, wishful thinking, experimental treatments (except stem cell therapy as it was cost-prohibitive) and it seems the disease is going to progress no matter what.
We visit as much as possible, call every day now that he's away, tell him how much we love him. My mother-in-law is a former nurse and is caring for him at home now, but soon the burden will be too great. Surround yourself with people to support you. Learn the best ways to care for him, from a CNA or visiting nurse, remember that while his body fails his hearing and intellect will not, so talk to him, tell him you love him, and how honored you are to have him as a father. If you're the primary care-giver, arrange to have someone come relieve you, if only for an hour or two a week or every few days. It will refresh you and help you better care for him.
God bless ~
[QUOTE=magjax;3791975]Tammie ~
I am so sorry for you. My husband and I are in the same boat. His dad is nearing the end of his struggle w/ ALS. He was diagnosed in April 06, although he had symptoms for at least a yr and a half prior. We all thought that maybe he'd had a stroke the way his speech was beginning to blur. His symptoms appeared within a month of beginning a course of statin drugs for slightly elevated cholesterol. We've since learned that the motor neurons (which are affected by ALS) require cholesterol to function. Doesn't matter now; we've gone thru all the prayers, hopes, wishful thinking, experimental treatments (except stem cell therapy as it was cost-prohibitive) and it seems the disease is going to progress no matter what.
We visit as much as possible, call every day now that he's away, tell him how much we love him. My mother-in-law is a former nurse and is caring for him at home now, but soon the burden will be too great. Surround yourself with people to support you. Learn the best ways to care for him, from a CNA or visiting nurse, remember that while his body fails his hearing and intellect will not, so talk to him, tell him you love him, and how honored you are to have him as a father. If you're the primary care-giver, arrange to have someone come relieve you, if only for an hour or two a week or every few days. It will refresh you and help you better care for him.
God bless ~[/QUOTE]
thank u for your words, my mom also cares for my dad at home, he is so mad he says he doesn't want to leave usand worries about my mom they've been together for 33 years since they were teenagers. it hurts to hear my dad say that and i also feel guilty because i have a 16 month old baby girl that my dad can't even touch with his hand, and i know how much he wanted a grandchild:( they say time left is short my dad tells my mom he can feel it comming:( i can't breath thinking of it,i just can't barrie mt dad knowing his mind is well hurts the most i just pray he goes in his sleep:( thanks for your words it helps to talk to someone who understands:)
[QUOTE=mel4;3887424]Yes, I have heard of it being misdiagnosed. Be sure they check for Lyme Disease. Sometimes the symptoms of advanced Lyme are mistaken for classic ALS (according to research that I've read). However, beware of giving yourself too much false hope. It's important to keep your spirits up and remain hopeful, but if you put all your confidence in finding some other diagnosis, you may be disappointed. It is rare to find out that and ALS diagnosis is actually something else, even though it does happen. I really hope for your sake and your family's sake, that you are some of the lucky ones! My prayers are with you!!!!!![/QUOTE]

We too struggled w/ "misdiagnosis"~~My father-in-law had bulbar onset but ideas were raised of stroke and other possibilities. When the ALS didn't progress as rapidly as initially expected, one MD said it was possibly PMA: Progressive Muscular Atrophy. Unfortunately same ultimate outcome but people w/ this condition can expect a slightly better prognosis. Never give up hope! Remain optimistic even if cautiously so, arm yourself w/ as much info as possible not just about the disease but how to best provide care and above all remember people w/ ALS are cognitively intact: tell them you love them and how much you value them. Peace to you~ there is a lot of support even in this difficult time





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