Cherise77
Active member
- Joined
- Jun 18, 2018
- Messages
- 72
- Reason
- Loved one DX
- Diagnosis
- 07/2018
- Country
- CA
- State
- BC
- City
- Vancouver
Limb onset with possible breathing problem?
my Dad had a hard night last night. He explained it to me as he woke up with twitching in his rib cage and back and shortly after had shortness of breathe. He says he feels today like it’s hard to take a full deep breathe. A side note is that twitching has always made him very nervous and makes him feel like the disease is progressing to where the twitching is occurring even though neurologists have confirmed that’s not the case.
He is limb onset and has no issue with swallowing or speaking. My question is do breathing problems come before other bulbar symptoms?
My thought is he’s anxious as this week he starts the AMX0035 trial and then leave for 3 weeks with my Mom to Hawaii. It sounds relaxing to be going away but I can tell he’s nervous to be away for so long as well as he can’t take the CBD oil that has been helping him manage his twitching.
Any insight fellow PALS or CALS might have would be much appreciated. Thank you!
my Dad had a hard night last night. He explained it to me as he woke up with twitching in his rib cage and back and shortly after had shortness of breathe. He says he feels today like it’s hard to take a full deep breathe. A side note is that twitching has always made him very nervous and makes him feel like the disease is progressing to where the twitching is occurring even though neurologists have confirmed that’s not the case.
He is limb onset and has no issue with swallowing or speaking. My question is do breathing problems come before other bulbar symptoms?
My thought is he’s anxious as this week he starts the AMX0035 trial and then leave for 3 weeks with my Mom to Hawaii. It sounds relaxing to be going away but I can tell he’s nervous to be away for so long as well as he can’t take the CBD oil that has been helping him manage his twitching.
Any insight fellow PALS or CALS might have would be much appreciated. Thank you!
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