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Old 09-25-2017, 07:45 AM #2 (permalink)
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Nikki J Nikki J is offline
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Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,359
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Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,359
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
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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