arls
New member
- Joined
- Apr 29, 2011
- Messages
- 2
- Reason
- Loved one DX
- Diagnosis
- 01/2011
- Country
- UK
- State
- Gloucestershire
- City
- Lechlade
Hi All
I am a new member. My husband was diagnosed in early January with ALS bulbar onset, and we were told he has 2 years to live. Massive shock obviously. He has worked in Formula One for 35 and now Moto Gp so has always travelled a lot. He is still working, but this disease seems to be progressing very rapidly. He started with slurred speech and now has no feeling in his tongue and swallowing is becoming difficult. His left arm is very weak and now his right is getting weaker. I feel so helpless. He is coping very well, but his job involves lot of communication so dont know how long he can keep travelling. Our eldest son (22 years) or myself are going with him when we can. Can anyone tell me how quickly this can progress? Does it level off at all? We are under a great team of experts but they wont give me any timings and I want to make sure we make the most of the time we have together. Any information or help would be greatly appreciated.
I am a new member. My husband was diagnosed in early January with ALS bulbar onset, and we were told he has 2 years to live. Massive shock obviously. He has worked in Formula One for 35 and now Moto Gp so has always travelled a lot. He is still working, but this disease seems to be progressing very rapidly. He started with slurred speech and now has no feeling in his tongue and swallowing is becoming difficult. His left arm is very weak and now his right is getting weaker. I feel so helpless. He is coping very well, but his job involves lot of communication so dont know how long he can keep travelling. Our eldest son (22 years) or myself are going with him when we can. Can anyone tell me how quickly this can progress? Does it level off at all? We are under a great team of experts but they wont give me any timings and I want to make sure we make the most of the time we have together. Any information or help would be greatly appreciated.