suchahoward
Member
- Joined
- Mar 25, 2019
- Messages
- 20
- Reason
- PALS
- Diagnosis
- 07/2018
- Country
- US
- State
- WA
- City
- Bellingham
Hi all,
First time posting here. About me:
I will of course give up alcohol if I need to. I've never had an addictive personality and before I discovered craft beer I went years without having any alcohol, having had plenty in my 20s.
I'd be grateful for any and all input.
Thanks!
P.S. Yes, per etiquette on most discussion boards, I did first search for previous threads on this topic. If I missed something that answers my questions, I apologize and would gladly read an existing thread.
First time posting here. About me:
- Diagnosed in July 2018
- Upper extremity onset
- Just completed the Brainstorm/NurOwn trial, obviously got the placebo
- 54 years old, married, 21-year old son
- Still walking, but tire easy and too much and my fasciculations intensify and cramps are excruciating
- Taking riluzole
- Longtime performing musician (guitar, vocals), can no longer play, devastating
- Longtime hiker, cyclist, kayaker, can no longer do these things, also devastating
- Can no longer button shirts, tie shoelaces, I drop stuff constantly
- I LOVE craft beer, we have 12 breweries in our town of 80K people, and I REALLY want to keep drinking socially (about 2 outings a week, 2-3 pints per outing), especially given all of the other things dear to me which I've lost.
- Has anyone identified beer or other alcoholic beverages as definite triggers for intensified fasciculations and cramps? (I have not been able to clearly determine this. I've stopped drinking for a week or two and still had flare ups, either from physical exertion or some other unidentified factor.)
- What has been your trajectory with alcohol?
- Have you been on medications that disallow alcohol? If so, which ones?
- Have you noticed any other ALS symptoms that seem to get worse when drinking alcohol?
I will of course give up alcohol if I need to. I've never had an addictive personality and before I discovered craft beer I went years without having any alcohol, having had plenty in my 20s.
I'd be grateful for any and all input.
Thanks!
P.S. Yes, per etiquette on most discussion boards, I did first search for previous threads on this topic. If I missed something that answers my questions, I apologize and would gladly read an existing thread.