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Old 09-25-2017, 07:51 AM #1 (permalink)
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Niamh Niamh is offline
New Member (Say Hi)
 
Join Date: 2017
City: Dublin
State: Dublin
Country: IRE
Interest: I am a family member of someone with ALS/MND.
Posts: 8
Niamh is on a distinguished road
Niamh Niamh is offline
New Member (Say Hi)
Niamh's Avatar
Join Date: 2017
City: Dublin
State: Dublin
Country: IRE
Interest: I am a family member of someone with ALS/MND.
Posts: 8
Niamh is on a distinguished road
Unhappy My Dad has progressive bulbar Palsy

Hi everyone,

I wrote a couple of posts back in May after Dad's initial diagnosis but havent wrote anything since. Im having a bad day today so im hoping it might help.

As I said my 63 year old Dad was diagnosed with MND in May but its only recently that it has been confirmed that he has Progressive Bulbar Palsy. This has devastated my brother and I as the prognosis seems so poor compared to other forms of ALS, My Dad and Mam have done the right thing and stayed away from googling about it and I wish now that we had done the same.

Up until this point I had been very positive about how my Dad was progressing it seemed to be going slow. Prior to diagnosis he had been losing weight for 18 months, his speech, swallow and breathing got bad about 5 months before he was diagnosed.
But since he was diagnosed a lot of things improved, he was put on supplements so he gained weight, his speech got much better and he uses a BIPAP machine to breath at night and morphine drink to help his energy. He walks with a walking frame but other than that he is pretty mobile, he still drives, cooks, eats whatever he wants (as long as he brushes his teeth after) and still enjoys a glass of wine. After the shock of the diagnosis we were just starting to accept this as a new kind of normal, me and my brother travel home every weekend to spend time with him and we have had some really wonderful weekends eating good food watching old home movies and drinking wine. together as a family... but now everything feels so hopeless again.

Google says life expectancy is 6months-3 years from onset of symptoms. I am not ready to lose my Dad. I feel pressure (from myself) to rush things forward like getting married and have a baby while he is still around. I know he would love a grandchild more than anything.

I want to get back into that positive frame of mind, where i can hope that I will still have my dad in 5 years time but am I kidding myself?
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