AFO aka Ankle Foot Orthosis, canes, walkers help tremendously in virtually eliminating falls. When they don't work any more then get a wheelchair. Falling can be a thing of the past with aids such as these. What is he using?
sorry, just read your message from May, we haven't been to "clinic" since January. We don't live that far away but he didn't like to see the other people that were worse than him. Now he is one of them. Not doing good at all. He has hospice now so the only thing we go for is for his baclofen pump to be refilled, the next time is in Dec.
the last continuation to my long post.My husband's illness seems to be moving in a totally different way.His balance is off, he is SO TIRED, cannot hold out more than about 10 minutes, if up and walking, his muscles in his upper back and left arm seem to be freezing up and now.He has started spasming in his legs, jaw and arms/hands if exposed to cold. It all sucks. We are trying to accept it; the one brother (my hubby's twin) is the only one without ALS. They did genetic testing on my hubby and it is not the SOD1 mutation, so the mystery deepened. Hubby is being pressured into herbal supplements and other alternative things. I have mixed feelings about it; I am a realist and do not wish to be given false hope. UGH! I havent been able to find a job, so going into debt with student loans to get a technical degree, so I can find a job. At some point I will have to as supporting a family of 4 on SS is nearly impossible. I am overwhelmed at nearly 49. I want my husband to be well.
continuation of my last post... He served and retired from the national guard after 20 years, but because he did not ever get activated for a 90-day period, he is not eligible for any VA benefits or help of any kind. Everything we had, medical, dental, vision, life, and all of our income was tied to his job. I have been home for several years, homeschooling one of two adopted children. Homeschooling due to disabilities. My husband's oldest brother and his youngest brother (there are 4 brothers) also have ALS. Somehow, they have both survived more than 10 years, but each has wasted away to I would say 60 or 70 pounds. One can talk; the other can't. Neither has bipap that I am aware of. Both still walk, but fall. to be continued,,,,,
I haven't posted in a while. Life has changed so much in the last 6 months. I am in shock. The general neurologist said it was carpel tunnel syndrome and symptoms from a damaged spinal cord from the slightly herniated disc. We went to the MDA/ALS Clinic AT Vanderbilt University in Nashville. Based on clinical exam, family history, and an abnormal EMG, my husband was diagnosed with ALS June 15, 2010. He has gone from being able to go to work on helicopters to not having the energy, balance, or dexterity to work any longer. Short-term disability has ended. He is now on SS, which for a month is less than two weeks pay. to be continued in next post...
Just want you to know that I'm thinking about you today. My husband and I just turned 49. We have two children - 18 and 15. I understand where you are coming from. I too have been a stay at home Mom most of our marriage.
How are your husband's brothers doing? Could you pool resources/ share equipment/ etc. Do they live close by?