Lost

[MonicaVal]

My mom was diagnosed with CBD/ PSP 4 years ago aged 69. Progressed rapidly and she ia now wheelchair bound and lost all apeech and ability to communicate. Now she is completely motionless as well. Ahe eats with her eyes closed. Swallowing is not an issue yet. What are we to expect next ? How much longer will her sufferring continue ?

[laroux]

Hi,

My husband was diagnosed almost 5 yrs ago with PSP, just had his 61st Bday this week. He has been in a care facility for 3 yrs now, had a peg tube placed a yr before going into care, developed chewing and swallowing problems early on. He was still able to have pureed foods and juice, recently had to sign a risk agreement so he could continue to have yogurt and juice. The swallowing and aspirating has become quite dangerous for him, but he wants those things and has already had so many things taken away because of this disease. His eyes are closing more often, his ability to communicate with ipad or even thumbs up or down is almost impossible.He cannot use his arms and hands most days, obviously can't walk at all. The nursing staff are able to get him up in his wheel chair some days, but not on others. I don't have an answer for you, just have the same questions. Don't know what to expect next or when. It's an on going grieving process, hard to keep my chin up some days. Not helpful, but at least you know you are not alone on this brutal journey.

Joan

[Yvonneandgeorge in reply to laroux]

Joan don't you just hate this illness, my husband eats with his eyes closed so sad everything has been taken away from them. Yvonne xxxx

[MonicaVal in reply to Yvonneandgeorge]

Thanks Yvonne. Any idea of what stage of the disease these symptoms appear ?

[Yvonneandgeorge in reply to MonicaVal]

I think everyone is different George went from walking in 2014 in 2015 in a wheelchair. Xxxx

[Karynleitner in reply to Yvonneandgeorge]

When did you first realize something was wrong with George and when was he diagnosed? Does he go out anymore? What about choking? Can he communicate with you? I know he gets agitated At night. Does he sleep a lot during the day.? Any answers would be helpful. We started Dan on aricept (may be wrong spelling) about 3weeks ago. It seems to be helping a little with his ability to communicate a few feelings. Just a little.

[Yvonneandgeorge in reply to Karynleitner]

About 4-5 years ago he was diagnosed in 2014 and again in 2015 he can communicate but not much good and bad days , he does not really sleep much during the day . Yvonne xxx

[enjoysalud in reply to laroux]

Hi Laroux I have a single 55 year old son (March 30th) who was DX with PSP Jan, 2017. He can barely see. He is at home. We don't live together. I have a 24 hour caretaker for him 5 days and I stay with him on weekends.

He has had two serious bouts of pneumonia. March 23, after the 2nd bout he had a PEG installed.

Has your husband had pneumonia or only the risk?

Thank you!

[laroux in reply to enjoysalud]

sorry for the slow response. yes he has had a few bouts of pneumonia, they give broad spectrum antibiotics at first sign of infection. Even now, with tube feeds, it sometimes comes up and he chokes and aspirates. But the risk is far less than it would be with trying to consume anything orally.

Joan

[enjoysalud in reply to laroux]

Joan, thank you for the info!

[MonicaVal in reply to laroux]

Thanks Joan. Have the doctors said anything about what to expect next or what stage these symtoms are at ?

[laroux in reply to MonicaVal]

In all honesty, I don't think the medical staff is familiar enough with this disease to make that judgment. They simply agree things have gone down hill, and try to put the required necessities into place as the need arises . They have indicated that choking and aspiration is a high risk.

joan

[Keiramurphy]

Haven't got any Advice sorry, but my nanna is in the exact same position, so sorry. It's heartbreaking Xxx

[VronB]

Everyone develops the disease differently it seems so almost impossible to say what will happen next. My husband refuses to havevpureed food or thickened drinks. He coughs a great deal when eating but so far hasn't had any pneumonia xx

[pzagy]

Hi Monica

I wish someone would have given us a timeline, everyone just told us that everyone is different. In our case CBD didn't take my mother in law, at least I dont think it did. I did take all her dignity, strength and everything else you could imagine, but in the end she suffered a massive heart attack, I believe she told CBD that she would win.....

In the end, she was in a wheelchair, lost most of her speech and needed help with most everything. She did walk with the physio ladies using a high walker, I say her do this 2 days before she died.

I pray for everyone suffering from these dreaded diseases and those that care for them...