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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


Hi there Panama, so sorry that you & your husband are going thru this time. My husband was also diagnosed with ALS, bulbar onset and we believe he has had the disease for 2 yrs or so. We look back and see that he was having some signs & symptoms years ago. Do you mind if I ask where do yall go for treatment? We attend the ALS Clinic in Houston and it is overall a good experience. (As good as can be, ya know :-)) My husband is progressing alittle more rapidly just recently. They have told us what is normally the average of 2-5 yrs. My hubby thinks it will possibly be sometime next year. Please take care & the most important thing I can share with you is to pray dear & hold onto God & your relationship with Him and your husband more than anything. Please let me hear how you are doing, ok? Praying for you both! Love in Christ, Roseh
The Bulbar form of ALS is very rare. My husband was diagnosed a little over 2 years ago. He lost his voice last year and gradually the use of his right hand and arm. He has trouble with saliva now. He walks and uses left hand with IPad typing. I suggest you find a ALS clinic because they are very helpful. Hospice also has what the call Palliative support,this means that the provide all the help needed at no cost. Most important is the advice and availability of wonderful nurses. Each ALS patient,we have learned,has different symptoms. We don't dwell on the 3 year tops prognosis because really nobody knows. I think you should do exactly what you want and focus on living. It is to exhausting worrying all the time. Practically, finances have to be put in order so that you are able to take over when needed. Power of Attorney,Living Will and Proxys are a good idea for everybody. Please don't give up. We are out there and looking for someone to talk with. Hugs,Hanna





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