My brother (65 yrs old) had been diagnosed with PSP in May 2015. In retrospect, I think his symptoms started in 2013, maybe earlier.
He lives by himself in a building that is not suitable for someone with PSP (stairs to go outside).
His balance is very bad. He falls hard. He has difficulties with prehension, with the computer keyboard, the ipad & cellphone screens and writing. At night, he wake up quite a bit for peeing. During the day, it’s the contrary: he tries to pee but sometimes nothing comes out (enlarge prostate?).
His voice is softer and his speech is slurred. Sometimes, there is no sound for part of a sentence.
His personality has changed. At times, he becomes angry. I find it happens mostly when he cannot find the words to express what he want to say and his conversation partner has misunderstood him.
I have not been successful at making contact with other caregivers / PSP sufferers in Montreal or in the province of Quebec. If some of the readers are from there, can you tell me if you are connecting with others, and if yes, when and where.
My questions are mostly related to the health care system in the province of Québec (Canada)
1. Have you been to the Centre d’évaluation Renata-Hornstein du CHUM in Montréal?
2. If you have, can you tell me what to expect?
3. Does the multidisciplinary team at this centre “take charge” of the person who suffers from PSP and follow him/her the whole journey?
4. Is the nurse working with this group the main contact for families/caregivers of PSP sufferers when a problem arise?
5. What elements are included in a intervention plan? Who makes it?
6. What is the role of a “case worker” from the CLSC?
Thank you for all the posts. They are helpful in many ways.
(Our first language is French. )