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Comments

kurtkrebs's picture

My brother was diagnosed 4 months ago at age 51. He started with muscle twitches a year or more prior, but was uninsured and too stubborn to go to the doctor. When his speech started to slur, we chalked it up as alcohol, as it was usually when he was drinking. Finally, my mom got him accepted by Medicaid and he was diagnosed in April. We have a few pressing questions we are hoping for input from the group. 1. Communication – His speech is all but gone at this point. He also has had some cognitive loss. We believe there is a secondary undiagnosed issue. (possibly a stroke) It is like dealing with an 8 year old. He has a phone but doesn’t text. He isn’t good at it. Whether it is the cognitive issue, non techy, or stubborn. I’m considering buying an ipad and loading an AAC. I’ve looked at a couple apps and have liked Speech Assistant AAC, but it only has a female voice. I’m looking for thoughts around this issue. 2. Medicaid – He is walking slowly. He says it is from falls and stubbing his toe. He is in a bit of denial that it is also his legs starting to go. In any event, he has also had trouble with using the bathroom. It all boils down to the fact that we need to start to concern ourselves with the eminent wheelchair and caregiver requirements. Has anyone had experience with how Medicaid deals with these issues? I’m sure the doctor will simply approve the wheelchair, but what can we expect as far a caregiver? Can it be in home, etc? Thank you. Your input is greatly appreciated.
Anonymous's picture

Is there a group with support of people whose lives fell apart because of ALS