jcmatch
Member
- Joined
- May 9, 2017
- Messages
- 14
- Reason
- Loved one DX
- Diagnosis
- 05/2017
- Country
- UK
- State
- London
- City
- London
Hi, I'm back! After my husband's diagnosis a couple of months ago, we have been travelling and visiting friends and family so our feet haven't touched the ground. but back to reality now for a few weeks before we go off again!
Firstly, thank you all so much for taking time to reply to mine and other newly diagnosed PALs/CALs threads. It is an enormous help and I know it takes up valuable time and energy on your parts. We took the intial advice given and have now finished banking his voice with ModelTalker - really helpful people and easy to use software.
My next question, my husband's bulbar onset started with slurred and slow speech, it has now become very nasally and he feels like he has permanent cattarh, but can't clear it by trying to clear his throat.
Does anyone have any miracle cure or advice please on what he could try?
Also, his breathing is certainly starting to become compromised, he is at 95% sats and 400litres PVF. Are there any information sheets for exercises to help his breathing/sleep easier at night before he has to look at NIV. We have our next appointment at the chest clinic middle of September.
Thank you for any help.
JC
Firstly, thank you all so much for taking time to reply to mine and other newly diagnosed PALs/CALs threads. It is an enormous help and I know it takes up valuable time and energy on your parts. We took the intial advice given and have now finished banking his voice with ModelTalker - really helpful people and easy to use software.
My next question, my husband's bulbar onset started with slurred and slow speech, it has now become very nasally and he feels like he has permanent cattarh, but can't clear it by trying to clear his throat.
Does anyone have any miracle cure or advice please on what he could try?
Also, his breathing is certainly starting to become compromised, he is at 95% sats and 400litres PVF. Are there any information sheets for exercises to help his breathing/sleep easier at night before he has to look at NIV. We have our next appointment at the chest clinic middle of September.
Thank you for any help.
JC