hope_faith
Active member
- Joined
- May 27, 2009
- Messages
- 77
- Reason
- Loved one DX
- Country
- US
- State
- FL
- City
- Fort Myers
Finally we are on the road to getting my husband the help he needs! Yesterday, he had his second appt with the ALS specialist in Miami. The first time he saw him was 4 months ago, just after he'd been diagnosed. He was a lot stonger then. Since then, this disease has really progressed rapidly. There was a big difference in what the doctor saw yesterday compared to his first visit in Feb.
His Doctor, is the medical director of the Kessenich Family MDA ALS Center. It is affiliated with the University of Miami. I know he is under very good care and feel blessed for this.
While he was there yesterday, they got him registered with the MDA and gave him lots of reading material with good information. They also gave him a breathing test and he did good on that, so he doesn't need the Bipap..yet.
He is going to be getting involved with a clinical drug trial. The doctor told him that 3/4 of the people actually do receive the drug and only 1/4 get the placebo, so I'm excited about this! I hope he gets the drug and it helps him.
We are hoping to get him some assistive technology help. Maybe Dynavox? I've read on here some people are using their devices and are having good results. He really needs something. His speech is getting worse and harder to understand by the day. His arms and hands are getting so weak that he can hardly type on his computer anymore. He told me last night it took him 1 hour to type 30 words. This is so sad, he loves his computer. If you have any recommendations on different assistive devices that would be helpful, I would love to hear about them!
I finally feel like we are getting the information and help we need. I'm very overwhelmed at the moment on how much we/I need to learn and reality is just setting in.
Thanks for reading...
Judi
His Doctor, is the medical director of the Kessenich Family MDA ALS Center. It is affiliated with the University of Miami. I know he is under very good care and feel blessed for this.
While he was there yesterday, they got him registered with the MDA and gave him lots of reading material with good information. They also gave him a breathing test and he did good on that, so he doesn't need the Bipap..yet.
He is going to be getting involved with a clinical drug trial. The doctor told him that 3/4 of the people actually do receive the drug and only 1/4 get the placebo, so I'm excited about this! I hope he gets the drug and it helps him.
We are hoping to get him some assistive technology help. Maybe Dynavox? I've read on here some people are using their devices and are having good results. He really needs something. His speech is getting worse and harder to understand by the day. His arms and hands are getting so weak that he can hardly type on his computer anymore. He told me last night it took him 1 hour to type 30 words. This is so sad, he loves his computer. If you have any recommendations on different assistive devices that would be helpful, I would love to hear about them!
I finally feel like we are getting the information and help we need. I'm very overwhelmed at the moment on how much we/I need to learn and reality is just setting in.
Thanks for reading...
Judi