Recently diagnosed, Montréal, Québec, Canada

[Etoile]

Hello,

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. )

[abirke]

Oh good luck to you. I'm from the US so I cannot help you except to say welcome to this site where you will find comfort, strength and maybe some good info to help your brother with this horrible disease. But in flesh only, our spirit can continue to grow strong if we choose.

PSPA and CurePSP.org are good resources to learn what PSP is and how to help the patient...and also their doctors and other medical staff who have never heard of PSP. Remember you are your brother's greatest advocate...you will find yourself working in ways you never thought needed to be worked! Be strong, we are hear when you need us.

I don't speak French so here goes....

AVB

Que Dieu vous bénisse et jours de ton frère.

Je peux faire toutes choses par Christ qui me fortifie.

Philippians 4:13

[NannaB]

I'm in the UK and welcome you. I don't speak French and am not brave enough to attempt it here ( well done AVB) but I'm sure someone will be able to answer your questions. It may prompt folk in Canada who maybe have not posted yet but have read the posts for some time.

Best wishes.

Nanna B

X

[Amilazy]

Bid venue, Welcome, (excuse my attempt at French) again in UK but know a few members live in East Canada they will be in touch. My only thought is your brother needs to consider moving while he can as living in an unsuitable place rapidly becomes a prison especially if he is on his own.

Best wishes Tim

[nomansland]

Salut Etoile,to start, call Lucie Lachance,infirmierte clinicienne specialisee hospital general de montreal,934-1934 ext 42944, a great contact,regards,Roland

[abirke]

Etoile, AMILAZY speaks the truth . Brother will need to find suitable one-story accommodations. There will be falls. Dont' let them be down the stairs...sorry

AVB

[Pokey]

Hi,

We are from Northern New Brunswick, right on the Quebec border. We travel to Montreal twice a year for appointments. My husband is followed by a neurologist (Dr. Ron Postuma) at the Movement Disorder Clinic at the Montreal Greneral Hospital. It was Dr. Postuma who diagnosed him with PSP after a neurologist in NB had diagnosed him with Parkinson’s. Sorry, I know about the other services.

Kathy