PSP Association
5,297 members7,289 posts

Wanted: new friends

Good morning from New York City.

Please connect with us if you are in the USA.

I feel so much better since I found this site, and I welcome new international friends, but I can help my Joe more if I can get info on services in our hometown. We are in the early stages. He has delirium for the past 36 days that may have come about since he fell on 8/26 and suffered a broken collar bone and finger. He does not feel I am his wife yet he remembers others in the family. He was given Seriquil and is also on 75mg. Of Effexor.

He is completely incontinent, has difficulty eating, and his right hand is very painful during sleep and he does better sleeping in an upright position.

He is ibeing treated by the Memory Disorder Center.

However, we are blessed that he is still mobile.

He attends an O/T program (just started) and P/T program he has been in for months and now that Medicare ran out we pay $60 a session 2x a week.

He has pernicious Anemia and takes B12 shots every two weeks and 5,000 mg. a day sublingual.

Hope this info sends some new friends our way.

Joe is 78 and I am 74. First signs appeared in 2011 and he was diagnosed with Early Alzeheimers by A famous doctor.



6 Replies

Good morning. We are in Maine, so not close to NYC, but on the right side of the Atlantic. Glad to help if I can. Finding resources is a big challenge.

Has your husband been diagnosed with PSP? There is an Alzheimer's support group here as well, I believe, and, since, sadly, that disease is more common, you might find more immediate local responses there.

Best wishes, Easterncedar

1 like

Good morning. In 2014 a well known doctor said it was early alzeimers but in Aug 2014 at Cornell they said he has CBGD. He suffers a great deal with pain in his hands especially the right side. He is still mobile and eating has become more difficult. It is 36 days since he is confused about my identity.

Thanks for your reply. I am grateful for new friends.


I am sorry to hear of your husbands issues. I do agree with easterncedar that your husband may have issues other than PSP. You might ask your DR. if his primary diagnosis is Alzheimer' kind of sounds like it....Albeit the same protein that becomes harmful in the brain, the symptoms and care can be different.

Good Luck and welcome if this is the site for you.



Welcome to the site, we are all good friends even though we have not met, I love this site. PSP is one of the worse disease there is, sending you a big hug from London. Yvonne xxxxxxx


Good morning, We are in Fl, not close to NYC but on the right side, Getting help is a big challenge.

My hubby has PSP, whch is part of the Parknson's family, so I really can't be much help but I think there might be a group that deals with his other issues. Not easy, but we all survive.




Hi I'm from New Mexico. We just finished our horrible struggle with CBDG, Parkinson's Plus on September 30th when my dear sweet husband passed away. we were on Hospice which his neurologist prescribed. So he got to stay home and died peacefully in my arms. He was double diagnosed in May 2013 and September 2013. I believe his symptoms started with unusual falls and stumbles in 2011.

It is not easy. You are so correct. He was 64. I am 71 and sad but know he has laid down this horrid disease.



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