Looking for info from my neighbours in Canada particularly Montreal if possible

Wrote a while ago if there was anybody from Canada - as my husband too has PSP but is now in a care facility and am finding it difficult - he is taken care well but I live with a lot of despair ! I did not receive

any information and wondering if I posted it right - please let me know - like I said before I am inspired by all the replies and even though I am not alone I take strength from these people. Thanks to all of you for the insights of our loved ones - we are all so different but yet strong in faith and comradeship.

Please let me know if there are people from Canada - particullarly in Montreal, Quebec. Anxiously awaiting your responses.

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  • Hi there, I live in London, my husband has got PSP, such a horrible illness, how long as your husband had PSP? We take one day at a time, that is all we can do. Sending you a big hug, from cold London, and ope you get some responses from Canada, but we are all together fighting this long battle, no matter where you are. Yvonne xxxxxxxxx

  • Thanks it is indeed encouraging to read the responses - it gives me hope.

    Thanks for your response. Hugs from Montreal.

  • I've just looked back at your previous posts and you did get replies so you are doing it right. I hope you get some replies from folk in Canada this time. My husband with PSP and I in the UK.

    Keep posting. Posts will be read by folk from many different countries and although most of us won't know much about the Canadian medical/social help, we know how you are feeling and what you are going through. Some of us still have our loved ones at home but others are in the same situation as you.

    Very best wishes.

    Nanna B


  • Thank you so much for your response - yes I love all the posts which has helped me along the way. Hugs and best wishes.

  • Hi, I am also in UK! All any of us can do, is listen! So feel free to rant and rave, if you need to, you will be heard. Even if it is across the pond!!!

    Lots of love


  • Thanks Heady - it is indeed great to have comradeship and wow what a blessing to listen and read what all PSP caregivers have to go through - I will not despair and wish all those suffering and also the caregivers big hugs from Canada - love you all!

  • On the US equivalent of this forum at curepsp.com or it could be .org, there is information about Canadian support groups.

  • Hi, I did not see your original post. I am in Kelowna, BC. My husband was diagnosed with PSP in 2011. I am his carer pretty much 24/7 - but he does go to a day program 3 times a week now. He is in a speech therapy program which does seem to help. His voice is a little stronger and we are hoping it helps with his swallowing. Did you have other questions about care in Canada?

  • Hi Nana-J,Yes, we are from Montreal - my husband was diagnosed with PSP in 2011 and I was his carer that time - he attended speech therapy program and eventually was not able to communicate just by signs thumbs up or down and also his writing was unrecognizable but he was not able to jot down things he does not speak at all did have botox and even that failed - 2013 we downsized and moved to a seniors residence and things were fine when suddenly in 2014 he started with his falls which were many and also constipation I did have help with CLSC but for 3 hrs etc it was not enough as he started to get stiff - was not able to leave him alone did also keep private care from VON then Christmas eve he got up to go the washroom and had a nasty fall had to take him to the hospital and had to have 15 stitches just above his eye so there after they kept an eye on him as I too suffer from RA and eventually this March he was moved to Govt assisted care facility - it is heartwrenching but thank God no falls - he has slowly lost his ability to walk and also has swallowing problems everything is pureed and I go to feed him and have private nurse in the evenings as I don't like night driving. So presently this is where I am - not knowing anything about PSP and after going on this site learnt so much and that I am no alone has helped me to keep on going. Like all said we are there to help each other. Thank you and hopefully in some small way it will help. Good luck

  • Hi again, So sorry to hear your husband's condition has progressed so quickly. None of us really know how this disease is going to affect our loved ones, do we. It is so very hard to watch them struggle remembering how capable they used to be. This site is so good. I have learned so much since finding it. There are so many posts from people who have already experienced what we are going through - very helpful. There does not appear to be anyone close to us here in Kelowna with PSP. Have you found anyone in Montreal yet? Take care and hugs from Kelowna.

  • Hi 1009luck. My husband has PSP. We are in UK, in Kent, and I look after him at home with the help of carers who come in twice a day. Do hope you find people who live near you but in the meantime, rest assured that we are all here to help and support if we can despite being far away.


  • Is there anyone here from Grand Rapids, MI

  • This is from the CurePSP site under online support groups. It may be of help to you.


    Carepartners of People with PSP

    Meeting Time(s): 3rd Monday of each month at 6:00pm Eastern

    Meeting Link: www1.gotomeeting.com/regist...

    Meeting Tel: +1 646-307-1721; Access Code: 888-602-095

    Facilitator: Mike Flanagan (Canada), 519-995-4073, mikeflanagan1003@hotmail.com

    - See more at: psp.org/support/online-grou...

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