themommy
Active member
- Joined
- May 3, 2012
- Messages
- 82
- Reason
- CALS
- Diagnosis
- 03/2012
- Country
- US
- State
- FL
- City
- Saint Petersburg
Christmas has left me empty. The season for joy and happiness has been haunted by the thought that this might be the last. Michael has gone down hill in the last six months...He is dependent - although not all day - on the ventilator. It has gotten into his digestive system - so food creates all kinds of problems. Mostly constipation - but terrible stomach pain and spasms. He tries mostly to have juice - since that is what he can tolerate...We juice everything! But with lack of real food - he has lost a lot of weight. He is complaining that an elephant has taken up residency on his chest...
I am worried about what the next six months will bring. I will say though that I am happy the dementia issues have subsides somewhat - at least the raging/anger part - although he does have OCD and will repeat himself 100 times a day...I used to get aggravated with him - now I just laugh at it. See how time changes things?
For any of you all that have been through bulbar als - can you help me with the progression? I don't know how long we have given the symptoms. I have talked with the DR. and of course they won't commit. And I know = they don't know for sure - but...surely they could give a guestimate based on the decline. Its not like it's stop and go...once its on the course - it stays moving forward....
I am worried about what the next six months will bring. I will say though that I am happy the dementia issues have subsides somewhat - at least the raging/anger part - although he does have OCD and will repeat himself 100 times a day...I used to get aggravated with him - now I just laugh at it. See how time changes things?
For any of you all that have been through bulbar als - can you help me with the progression? I don't know how long we have given the symptoms. I have talked with the DR. and of course they won't commit. And I know = they don't know for sure - but...surely they could give a guestimate based on the decline. Its not like it's stop and go...once its on the course - it stays moving forward....