Search results for query: *

Thanks for the responses. It seems there are very few who have used the drug. My husband began using Rilutek within 60 days of diagnosis. A few months later he began using the Mestinon. So he has been taking the Rilutek/Mestinon "cocktail" for well over a year. During that time he has had...

Hi, Joe: Ouch! V, Caregiver

Ted: Yes the ALS Clinic doctor knows he is on the drug and was very interested to learn that. As I indicated, he made no negative remark about it--just seemed surprised. My personal doctor (an internist) tells me that the study of neurology is still in the dark ages. So much is still...

Hi, TedH5, There has been no specific testing by either the ALS Clinic doctor or the individual neurologist. Or even the pulmonolgist. They simply say he is strong and that he is "stable" after they do their arm and leg and breathing evaluations. The pulmonologist has now pushed out...

I have no clue as to what percentage of the ALS population might benefit. But within a few months of diagnosis, my husband's neurologist (not from the ALS Clinic) prescribed Mestinon (the generic version), which is a drug for myasthenia gravis. He quoted a mentor of his as suggesting: why not...

I agree with KKay. The transport chair is essential at this stage. Also, a heavy duty rubber mat for shower or tub. Shower chair is a must. House must be cleared of anything that is a barrier for the transport chair or that will cause a trip/fall. Your neuro may want to order a safety...

Two things about the nose discomfort: bruising and infection. It's really important to keep the tissue from breaking down. That means keeping the nose (and all of the face) clean with mild soap and water. If redness occurs and doesn't go away within an hour, there may be an infection...

There are so many variants of motor neuron disease that each person has to take into account his/her own personal situation about PEG. The stress of the diagnosis caused my husband to go from over 200 pounds to 169 pounds in less than three months. After our first visit to the ALS clinic we...

I picked up in one of Sammantha's previous posts that she may be working with a psychologist. Not sure. Just a brief reference. But encouraging if she chooses to contact that person. In the meantime, all of us are overlaying Sammantha's unique circumstance onto our personal beliefs, concerns...

Hi, Sammantha: I'm writing you from California. I'm a caregiver. My husband has ALS. I'd like to ask that you spend only one more night on this earth. We all know that the nights are the worst, but if you can get through this one night, something might occur to you that is...