PSP Association
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Just need to share

I really don't know who else to turn to, but my Dad has had 3 rounds of antibiotics and is now getting them through an IV for pneumonia that won't go away but the IV antibiotics seem to be helping somewhat but he won't be off them until early next week. My sadness -- my nephew is getting married next week Dad's only grandson and Dad would have been able to go to the wedding when it was planned. Unfortunately, we did not know how fast his disease would progress -- he cannot talk, walk, eat, is incontinent, and has horrible choking spells where he loses consciousness and turns purple everyday.

He is in a wonderful facility and Mom and brother go everyday (i live in TX they are in MA). Today one of the Aides called Mom and said Dad had indicated he wanted his "sports coat" for a wedding. My Mom and Brother along with Dad's primary RN had go in today and tell Dad he is too sick to go to the wedding (it is a 2 hour drive one way). Dad screamed NO NO and then the tears. I've talked to him on the phone and although he can't communicate well his breathing and sounds he made were so sad. It just broke my heart. If there were any way we could get him there we would -- but the hospital says there is no way. His Dr. will be in tomorrow to tell him he is not medically able to attend the wedding.

I'm not sure the reason I'm posting but my heart is breaking and I really have no where else to turn. All my family members feel so sad about this situation. My nephew and his new wife will come down the day after the wedding to see Dad before they go on their honeymoon but that didn't cheer him up any.

I guess I'm just so sad and my heart feels as though it is breaking. This disease just keeps getting worse. When I think we've gone through the worst something like this happens. Just needed to get this out to someone - to people who know the pain involved in this dreadful disease. Please keep us in your prayers. This group is a lifesaver and to those of you on this board who have PSP know that I pray for you everyday.



5 Replies

hi deedee

i am so sorry yhour da dwill not make your nephew;s weddding bu thow great that they willc oem and visit your dad after it

but i hav e to miss events as well (2 christenigns this year)and when you have this illness peopel hav eo understsnd

sorry i cannot be of anyh solace ot you on this difficult item

but hang on in ther e for yoru dad's sake

lol JIll



I have the same issue brewing. My youngest daughter and the last of four granchildren to marry has a ceremony n=booked for next October. Mum is now in the nursing block of her home after a terrible infectiotion during which we nearly lost her. SHe bought a dress last year thinking my daughter would get married soon(they have been together for 10 yeasr since meeting at uni) and she is the favourite granddaughter. I cannot see that mum will still be the same by then. Luckily she sometimes forgets they are not yet married so if mum is not well enough I know we will have to just keep quiet and not say anything. As she is at the moment she would only manage the actual ceremony, the best we can do is video it and play it on the TV.


Please check to see if you can use Skype at the wedding. If there was someone at the wedding that was able to hold a laptop in the vicinity of the wedding and your father had access to a computer/laptop at the hospital he would be able to watch the wedding from the hospital. You would have to have it set up prior to the wedding. It would allow him to see the wedding. It is free and available to anyone who has access to a computer. It gives a person the ability to have a face to face conversation with others through the use of the computer. It may also work on other technical devices. Skype can be used to communicate with anyone at anytime. This would be a wonderful opportunity for him to see all that is happening - almost as if he were there.


Hi DeeDee,

Sugardart has made a great suggestion if you can work out the logistics. It doesn't even need a laptop at the wedding end as you can download Skype on to smartphones and tablets. As long as you have an internet connection there is no reason why your Dad couldn't at least witness this special event. My family did something similar for Christmas last year when my nephew who lives in LA wasn't able to make it home. He called in via Skype and the laptop was ceremoniously passed round the whole family. The last word went to Mum who told him she didn't like his hair!

Praying for you



Thank you for all your thoughts and suggestions. This group is truly a blessing.


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