Old 09-25-2017, 06:51 AM #1 (permalink)
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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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Old 09-25-2017, 07:45 AM #2 (permalink)
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Default Re: My Dad has progressive bulbar Palsy

I am glad you have been having good times with your dad. So very important for both of you. Please continue to make memories

I am happy too that he has responded well to bipap and food supplements. Addressing breathing and nutrition makes a big difference often.

I am sorry though that you are struggling. This is horrible and grossly unfair for sure. None of us know how long we will be given. With ALS and PBP 5 years is a long time. Don't give up hope but it is probably unrealistic to count on it.

I know your dad wants you to be happy and have a good life that you have freely chosen. He doesn't want you to rush into things for which you are not ready. If you are engaged and putting off the wedding because you are planning/ saving for an expensive ceremony/ reception but are otherwise ready and both of you would be happy getting married tomorrow then moving up the ceremony would be reasonable. If you are not in that situation then don't worry about things you can't/ shouldn't change.

Try to concentrate on giving your dad happy moments. At some point he may want to write letters or record video of himself speaking or reading to future grandchildren.

If this is all too much consider speaking with a counselor. And do keep posting here too
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