Back again - but for how long? : Had a huge... - PSP Association

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Back again - but for how long?

Marysmother
Marysmother

Had a huge surprise today when going to see my mother (84 and diagnosed with CBD 8 years ago). When I visited a week ago she was totally immobile, unresponsive and unable to speak. This has been her world for at least two years - getting worse and worse in fits and starts despite a very brief respite for a few days a year or so ago, after which she relapsed back to how she was before. When we got there this morning my dad, who cares for her said that she had shown big improvements across the last three days and she greeted me with a smile, some unintelligible speech and an alert face. Such a contrast!! Her previously rigid arms were moving about in a fluid way and later in the day she managed to answer simple questions, said she was feeling “tired and disorientated” and, when asked whether she wanted me to read to her or to let her have her afternoon rest said “I am tired and wouldn’t want to waste your time”. Absolutely incredible!!! I am so hoping that this is more than a brief respite as how she was today means that she can, at least have some human interaction and express her wishes, unlike before. Please if you have a similar tale to tell, do reply to this as I am totally baffled and don’t know what to expect. Thanks so much in advance, and all my best wishes to you for 2019. Mary xx

9 Replies
oldestnewest

I've not heard of nor experienced it..! I will follow this post with interest. Would be interesting to know what your neurologist thinks.....

Here's to more good episodes in 2019!

Anne G.

Thanks for your good wishes - will update soon

What a lovely surprise, Mary! Long may it last. And however long the duration, you will all enjoy having her back.

Never heard of such an event before either.

Big hugs

Jen XXX

Hi Marysmother!

Never heard of such an event before either.

Please, keep us informed of the evolution and if it is possible to relate the great improvement with any medication, activity or situation.

Congratulations, hug and luck.

Luis

Well that is certainly unusual but I have heard of this before through posts on an American website. It is quite an old website. My husband has CBD and is currently in hospital following a fifth episode of aspiration pneumonia. He is in the same way as your mother but his condition varies from day to day. Sometimes he is responsive and sometimes not. He hasn’t spoken for a year but he communicates with his eyes. It is quite a challenge. I wish you well with your mum. This is such a horrible and challenging illness it must be lovely to have her back however briefly. Do you think this is related to changes in medication?

X

Steve had a few episodes like this, when he could suddenly speak. Lasted a couple of hours each. Short but very, very sweet.

Lots of love

Anne

Wow i have to follow your post. How wonderful and however long it lasts it must be amazing to see part of your Mum back. The only thing i have ever had near is in my dreams 😪 i have had a repeated dream where my Mum in her 6th year with PSP is standing and talking smiling like she use to be. Even though in my dream you can still see this dreadful disease is there but to have one day with our love ones back like you are experiencing would be a dream come true.

We have not had this experience though like many others my husband experiences phases where he may not speak for 5-6 days and then resume speaking. I do hope this period of interaction can continue. To. Be able to communicate effectively is so important

Love Tippy

That’s an amazing development, long may it continue!

Could you attribute this yo any changes in medications or routine, perhaps?

Very interested

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