Doctor visit : Hi everyone hope all is well... - PSP Association

PSP Association

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Doctor visit

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Hi everyone hope all is well.

We finally had our Dr. visit with Dr Bang from John Hopkins after over a year. She said that Rick is in the last stage and told me to take him off Tramadol and to only give him clonazepam only when needed. She also gave him some new medicine Trazodone 50 mg for his sleeping . It’s so aggravating to know that he’s in the final stage but what does that mean? I know it means he is just going to get worse, but for how long?

Thanks for listening and I appreciate any advice.

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6 Replies
AJK2001 profile image
AJK2001

It's one of the hardest things not knowing how long we have left with a loved one, you just have to try and make each day count in a small way. If I could get a glimmer of a smile from Mum or a hint of who she used to be, I thought I'd had a good day :)

in reply toAJK2001

Agree when he laughs it’s a good day.

AliBee1 profile image
AliBee1

Dear Penny. I am sorry to hear your news. Sadly there is no 'set' time as everyone is different but if the doctor has said this you can certainly now get help from the palliative care team from the local hospice. They are so knowledgeable and helpful. Good lug and big hug. AliBee x

Hi penny1956!Each PSP patient seems to have a different evolution although with similar symptoms.

By internal mail I send you information on symptoms, attitudes of the patient and stages of the disease that have helped me to understand, approximately, where we were at different times.

Hug, luck and courage

Luis

in reply toLuisRodicioRodicio

Thanks

Esra profile image
Esra

Dear Penny1956,I am so sorry for your beloved one.

My mom used clonazepam which was helpful for her sleep and also her spasm.

She used it max 30 drops in total daily sometimes. We gave it to her approximately ten drops three times a day.

Hopefully it also helps your beloved one

Warm regards

Esra

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