lauralibrary
New member
- Joined
- Oct 9, 2021
- Messages
- 2
- Reason
- DX MND
- Diagnosis
- 10/2021
- Country
- US
- State
- DC
- City
- Washington DC
I was diagnosed 4 days ago. Bulbar ALS. In those 4 days my speech has become noticeably less clear. By the time I see my neurologist Oct 26th I may not be able to make myself understood anymore. I wonder if the EMG testing didn't start ALS moving. Before I had the EMG test (nerve conduction and needles stuck in muscles, including my tongue) I could speak fairly clearly and had no muscle twitches. Now I miss consonants and have a lot of twitches in my upper body.
I am single, 68 years old. I retired immediately upon diagnosis. I was hoping to have a year of retirement, but I now wonder if I'll make it 6 months.
My first thought was to go the route of Death with Dignity--we have legislation in Washington DC where I live--and forego tube feeding and breathing assistance. I have good friends, most of whom are still working, but I live alone, and I can't see spending all my living moments trying to get assistance through my insurance or the George Washington Hospital, which can't even get its patient portal working. It has a certified ALS clinic, but I have to wait till Oct 26 to even find out when I can get into the clinic.
The first 4 days since diagnosis was a horrible period of time. But I have decided to push away all the bad feelings. I've gotten them out. That's enough. Now I am wondering if what I need to do is gather the strength to end this properly. I have a phone conversation appointment with a hospice.
I am single, 68 years old. I retired immediately upon diagnosis. I was hoping to have a year of retirement, but I now wonder if I'll make it 6 months.
My first thought was to go the route of Death with Dignity--we have legislation in Washington DC where I live--and forego tube feeding and breathing assistance. I have good friends, most of whom are still working, but I live alone, and I can't see spending all my living moments trying to get assistance through my insurance or the George Washington Hospital, which can't even get its patient portal working. It has a certified ALS clinic, but I have to wait till Oct 26 to even find out when I can get into the clinic.
The first 4 days since diagnosis was a horrible period of time. But I have decided to push away all the bad feelings. I've gotten them out. That's enough. Now I am wondering if what I need to do is gather the strength to end this properly. I have a phone conversation appointment with a hospice.