Just curious how many Canadians are on this site? Which province?
Canadians: Just curious how many Canadians... - PSP Association
Canadians
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hiebert
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36 Replies
•
Hi there Hiebert!
I'm from (near) Vancouver. Just watched the Leafs beat the Red Wings. Good Saturday night fare for hubby (CBD patient) 
Anne G.
Thanks for responding. I feel there are few Canadians on this site. Plus with each province managing its own health care it makes supporting each other more complicated. My mom has psp. We could no longer care for her at home. 
Sorry to hear that Hiebert; it must have been a tough decision. So far so good with my hubby: it's not too much, as he is somewhat mobile, can eat, and any help he needs I can supply. It will be interesting to see how Community Health comes through once I start needing care aides..!
PS: I know there are at least 2-3 other members (or occasional members) of this site here in BC. Some don't post often. Dee (dw12345) posts fairly consistently. Where are you ??
Manitoba. My mom is elderly she was diagnosed very late in the process of the disease. Dr kept putting it off as old age.
I think the UK has a very strong support system which is probably most helpful when you are diagnosed early in the disease process and are younger in years.
Does your community health supply aids or are you required to purchase.
I actually don't know the extent of community care yet: I haven't applied so can't say for sure, but everyone I've heard from says you get about 20 minutes - I don't know if it's every day: I guess they have a system for assessment.... I've called them and asked if there's a wait for service: ie I don't want to wait until I'm desperate and find I have a 4 month wait for an assessment! They said, they'd open a "dormant" file on us, and I'm just to call when I need help - and they'll assess then. Speed of response depends on severity of problem - so we'll see!
Anne G.
Hello Hiebert
I live in chilliwack bc,my husband has PSP as well.I have found very little equipment is supplied other then the red cross,some financial aid through the federal government if your income is low enough.lots and lots of paperwork,phone calls for anything.Seen a commercial on tv for the als society, they say they will suppy all kind of equipment within 48 hours,I belive there is some help for Parkinson person as well through the Parkinson society. Just not enough people with these diseases as sad as it is to get funding.
My husband hail from Belmont MB about a hour south of Brandon,lots of family still there.
Dee
hiebert• in reply to
We were able to have use of a hospital bed and a lift however the care needs were so high we had to place her in a home. I work and my sister lives over an hour a way. Not ideal but I try to go 3x per week and my sister comes and spends a day a week with her. However we purchased 3 wheelchairs (stages of disease) and a toilet seat bidet (such a help) and grab bars/poles. Home care also supplied incontinent products. She is not really incontinent but we could not physically keep up with hourly bathroom visits. Life with psp is a whole new learning curve.
easterncedar• in reply to
Don't know if it applies to Canada, but FWIW the Alzheimer's Association here told me my guy with PSP would be eligible for assistance from them. I didn't follow up as the VA came through so well.
• in reply toeasterncedar
Thanks EC, will put it on a list to check and I think I will check the Parkinson and ALS as well,can't hurt to try,We are pretty much set up now . like closing the barn door after the horse got out,but other that come behind us may benefit.
Dee
Progressive5• in reply to
Hi, Dee I am also from Chilliwack and my husband has had PSP since 2007. He is from Kenora, Ontario not far from Winnipeg. We also know several other people with PSP in Chiiliwack. We go to PSP meetings every month on the second to last Friday In Surrey. This group has PSP and CBD people. Wonderful group, would like you to join us and we would love to meet you and your husband.
Ingrid
• in reply toProgressive5
Hello Ingrid
I did go to a meeting about a year and half ago I think .is it the one off 160th street and run by Bob Brett.We don't go out much anymore,it has been proven to be to much for my husband and I end up paying for it in the long run( laundry ect ).
Home care had said that there might be 3 others in chilliwack with PSP.
• in reply to
You and your husband have been fighting this battle for couple of years longer then we have,how is your husband?
Progressive5• in reply to
Dee - Yes, wonder if we were at the meeting. Eric is not easy to take anymore to the meetings. He is now having trouble swallowing and it is a daily struggle. He does not want a feeding tube so will do the best we can. He goes to Netcare on Tuesday's and Friday's . It has been a lifesaver for me. He is in his 11 th year so he has done good. He is in his 80 th year. Had no health problems before he got PSP. Wishing you and your husband the best.
Dee, that should have read 70 th year, for Eric. My eyes must be going.
Eric is up, must go. Ingrid
Bonjour hiebert. We live in Markham, outside Toronto, Ontario. My husband Michael was diagnosed with PSP and mild dementia a year ago. He fractured 4 ribs falling in December. Govt is providing a personal service worker 3 days a week fo shave and shower. No caregiver respite. Most people around here are not aware of PSP.
Suzanne
Hi we sure are spread across this great big country. I lived in TO in the 80’s. Caregiver respite is so needed but yes we don’t have that service either. If we want respite it’s through home care and they are placed in a personal care home facility for the respite time. We did use this service earlier however it is very unsettling for my mom. Hopefully you have family help?
Hi we live in Bassano Alberta my husband has had the disease for at least ten years I look after him at home his eyes are real bad and sleeps a lot always tired.Not much support people just don’t know about the disease. Family Dr. Had never heard of psp. I have family which is good I need to vent sometimes. My husband is 75 and this is not how we planned on spending our retirement but have to make the best of it. Hoping they find out why people get this disease and a cure
Was he diagnosed early on?
No diagnosis till 2014 kept telling him he had diabetic neuropathy because of the palsy in the legs. He even saw a neurologist but he had no idea once we got into the movement clinic he was diagnosed after 2 appointment
I understand. They kept saying it was old age for my mom. One day her heart went crazy and took her to a tiny local hospital. This doc finally listened to me. He ruled out stroke and sent her to a neurologist. Diagnosis PSP.
I believe Daddyt who writes the PSP Chronicles is also in Canada.I saw him respond on Suzanne's first post.
It seems to me that the UK is much further ahead in supporting longterm care at home than Canada is...so far...
I agree. Support systems in Canada seem non-existent. Thank God for this forum 
raincitygirl, what do you know about home care services in BC and how they are funded?
Hi Adrianna,
I really don't know much, as I haven't asked for care hours yet. I just contacted our regional health authority's Community Care and asked how to start a file with them; that I didn't need them yet, but didn't want to wait 6 months if/when I decided I needed help. They said they'd open a file and leave it (dormant) and when I needed them just to call and they'd have hubby assessed. Of course they won't commit to what support we would get without assessing him - I get that. The funding is divided by the Ministry of Health's budget between the 6 health authorities and each one runs their own Community Care Services - but probably fund about the same for community care. I think there are provincial standards or targets - as there are for residential care homes, etc.
Most of my experience in the past was second-hand, where a sibling was organizing home care or home support for an elderly parent...
Ontario
Lots of support if you want it.
Husband diagnosed right away after seeing second neurologist
I think he had disease for about two or three years before he was diagnosed, and he had it after that for four years, passed away last month
hiebert• in reply to
Sorry to hear that Mandy. That seems so fast. I am sure it still feels very raw for you. Take care of your self.
raincitygirl• in reply to
I add my condolences Mandy: I hadn't realized your husband was so close to the end (I'd seen you reply a few times.) I hope you have good support for these hard days.
XX
Anne G.
Hello, I'm from Ayr, Ontario (southwestern)
Thanks for the responses everyone. I wonder if doctors are less aware of the disease in Canada? Or is it population related?
In my opinion, the responses from Canadians are close to the responses from UK folk and Americans: the general population and rank and file medicos don't know PSP or CBD - but the Neurologists do, and the tertiary neurologists and movement disorder clinics diagnose it before too long. PSP & CBD are just too rare to be well known like AZ and Parkinsons. ...and our population being so thinly stretched across this great big country...Not so many neurologists as more highly populated countries, either!
Anne G.
Kitchener Ontario
My mom died January 7, 2020. I am so thankful for that as it would have been too hard not to have had access to her all these months. She no longer suffers, for this I am grateful.
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