NO PSP Association in Canada

I know there are a few Canadians on here. Like me, you are probably frustrated by the lack of resources, assistance, information, basically everything here in Canada.

Personally, I have had to get everything I know from this fabulous site, from google and from some of my American friends I have met since Dad's diagnosis.

I am off to Dallas/Fort Worth to the PSP conference on June 2nd. It cost me a pretty penny for flights, hotel etc. I keep thinking, wouldnt it be great if we had a PSP Association in this country??

I am far too busy taking care of my Dad to get into all that right now. HOWEVER, as we all know, I sadly will not be busy forever! It is my intention to start up something to help in our own country. I have this as my number one goal. I dont know how, where but I will. I could use any help from ANYONE who has ideas....whether they are Canadian, American, British, whatever. It is high time we had some local help.

Anyone with ideas, please help!

Thank you all very much!!

MJ

13 Replies

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  • hi mj mark,

    i hope you and your dad are keeping well, im sorry to hear

    that you dont have a psp association there in canada we in

    england have a great assocciation who dose a lot of good

    work for those with psp/cbd, since they stopped running the

    support group meetings in england last year we all felt the same

    as you are feeling right now, but do to some great volunteers we

    now have a lot more great meetings all over the country run by

    some very kind hearted people and they take place in some great

    venues, i dont know if you have a parkingsons disease association

    there in canada as they are very good people to deal with in the uk

    as they deal with suffers of psp/cbd also so we always have some

    body to call if we need two,

    take care mark,

    best wishers ray

  • I always say Dad had the bad luck to get this disease and the bad luck of geography because we live in Canada. It is virtually unheard of here. We really need to change that. I am glad you guys get support and help. i know I have learned TONS just from reading blogs, psp site, and of course youtube videos...

    Take care, MJ

  • Him ray

    Good to c u blogging again

    Lol Jill

    :-)

  • Hi MJ,

    I understand exactly what you mean. I'm in Ott, Ont and so far I haven't found any support locally. The Parkinson's people were very kind, but had nothing to offer except an invitation to go to their library. They said that because PSP was so rare there just wasn't the demand for local resources and referred me to this site. I would be very interested in keeping in touch with you (and anyone else interested) as I fully intend to do something. Not sure exactly what just yet but increasing awareness about PSP and building a Canadian support network seems like a good start.

    Stay strong,

    Candice

  • have you had any joy starting a PSP Asoc ?

  • HI THERE!!

    Its ironic, I am going to Ottawa this morning for my six month cancer checkup! I recently moved from Ottawa to Kingston. My parents live here, so my husband and I take care of my Dad (he is 71 and has had PSP for about six years!)

    I am excited to "meet" you here.

    I believe (rare or not) that EVERYONE deserves proper support and our country has dropped the ball! Drives me crazy. I am not sure how, but when my husband and I are ready, we want to start some sort of awareness campaign, a PSP site for our country. We sure could use your help!!

    I am going to Dallas/Fort Worth on June 1st for the Midwestern PSP conference on the 2nd. I hope to bring back some positive information for my Dad.

    My email address is taxvictim@rogers.com

    Please drop me a note. Does your Dad need prism glasses? I bought some for Dad and another patient here in Kingston. They are a tremendous help when they have no ability to look down, especially for eating!!!

    Gotta run, Ottawa at 11 am...traffic will be nuts!

    THANKS FOR REPLYING!!!

    MJ

  • Hi MJ,

    Even more ironic - I work for a non-profit cancer org...!

    Sorry for the delayed reply - like you, it's hard to find 'free' time in between work and family. How did the conference go in Texas?

    Where in Kingston did you purchase the prism glasses? Nice to know they've worked for your Dad. My Dad's mentioned them a couple times and I think he plans to get them eventually. At the moment, thankfully, he is still relatively independant.

    Let's keep in touch - I may take a while to reply, but I'll be checking in periodically.

    Stay strong,

    Candice

  • Hi MJ Mark,

    I live in ( a small town) B.C.I know what you mean! I am 67and was diagnosed

    one year ago. I am tired of doctors that know nothing about this disease.

    Lynda

  • Himlynda

    The little PSP card r good to give to anyone in health people

    And r free from th e PSP ASSSOC

    Loo Jill

    :-)

  • Hi MJ,

    Good for you! It's so frustrating to see how little PSP awareness we have from the health care field compaired to other places. I see terms like PSP nurse and think to myself "whaaaat!??!?!?!?!?!? We had a hard time finding Dad a doc. who was farmiliar with PSP, and his nuro. has only treated one other case. Good luck to you, I would love to help out if I can.

    Take care,

    Nel

  • Thanks Nel. I really am going to do something when all this is over. Right now, its impossible to find two hours for anything! I sure could use some help with it. I think Canada has dropped the ball and psp caregivers need more help, starting with awareness.

    I know what you mean about the psp nurse....unreal!!

    My email address is taxvictim@rogers.com

    Thanks for replying and offering to help. I dont suppose you are going to the PSP conference in Texas on June 1st?? I wont know anyone.....but I am going!!

    MJ

  • Hi,

    Im from Toronto and had the same frustrations. My father was diagnosed with PSP in 2010 and he suffered a great deal before passing away in March 2013. His loss was bitter sweet - but the journey was heartbreaking. I had more information, education and knowledge about the condition, stages, symptoms and treatments (I use that word loosely) than most health practitioners. We attended some of the best hospitals in the city and only a small handful of doctors knew anything about the condition. I want to get involved and help build awareness about this horrific condition. The only war to battle it is through education, awareness and knowledge. I see the amount of resources and attention conditions such as breast cancer get and it frustrates me that PSP is still unknown despite how terrible the condition is. I hope to get more people involved.

  • Hi MJ-Mark,

    Bravo to you - like you and many others in Canada it is so frustrating that we cannot get help/information for our loved ones - my husband too was diagnosed with PSP eventually after many trials and is it heartwrenching - he is presently in a home care facility and I find it hard - most of the information I got or enlightened my mind was from Healthunlocked or from the PSPCure from the States. It has helped me a lot as we not alone. I live in Montreal, Quebec and am referred to the Parkinson Association which does not help. Anyways hope the conference helped and that someone like you will help us for the future. God Bless you for the challenge ahead and keep us the good work.

    Hugs from Montreal.

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