Hi from Lynda,

Hi everyone,

I have been reading healthunlocked since inception but I have never posted a blog. I wonder if anyone lives in Western Canada like I do. It would be good to hear from you. I don't feel that PSP is any known disease at all, especially here in Canada. I was diagnosed one year ago. I live in a small town which makes things so bad. The nearest neurologist is 4 hours away by car. I want to ask if anyone is on amitriptyline and what dose. I was on it but my psychiatrist has recently taken me off it and put me on ciprolex instead. I think I should be on it still because I don't feel as well as I did. It could be that the disease is progressing. I am grateful for contact with everyone.

10 Replies

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  • Hi

    I am in UK and have been diagnosed since 2010.

    I have learnt so much from this site and the PRkinson site

    Lol jill

  • Hi Lynda

    My husband was diagnosed last year June,after 4 years of testing etc.He was put on amytriptoline,first, because of the nerve pain and leg and muscle cramps.This did help.He has been on lyrica(pregabolin) for a year now.Look on patientslikeme.com,for the same illness,it will help you find other patients in Canada,My husband found someone in near Ontario.Keep looking on this site too,we have found it to be the best information we can get.We live in England.Neurologist here are not great either ,it is such a rare illness and we too live rural.

    Good luck and best wishes,it is a ghastly ghastly disease.We also have a wonderful PSP Association,they have been great.See if there is one in Canada otherwise,join ours in England,they are the ones who developed the health unlocked site.

  • Dorothy-Thompson

    My husband was diagnosed with PSP in 2010 but it has been coming on since 2006.

    He was originally put on sinemet but it did not help, so the neurologist at St Thomas' told us that as there is nothing that can be done for PSP there was no point in taking anything, so he has no medication at all. He is on the davenutide trials but I and most other people think he is steadily getting worse. His walking is very stiff, he has trouble with stairs and is very very irritable most of the time. But on a positive note, he can still exercise, he eats well, can keep himself clean and is not incontinent, so upwards and onwards!

  • Hi there

    I :liv e in BC.it that is any help.

    helnf

  • What part of BCdo you live in? I live in Rossland.

  • Hi Lynda

    am in FT lANGLERY NOW

  • this $%^&*() computer sends stuff all by itself/ Used to be in McBrid e umtil qbout a year ago so know what yiou mean about being 4 hrs from a neurologist'

    how in Ft. Langely

    helnf

  • My email address is mlellis@shaw.ca. I would like it if you wrote to me.

  • Hi Lynda,

    My Family lives in Nanaimo and I am just over on Protection Island. My Dad was diagnosed with PSP in spring 2010 after a bad fall the January before. He had been sick for much longer thou. It is hard for my parents being on Vancouver Island as many more specialists are in Vancouver than Victoria.

    Best of luck to you,

    Nel

  • I have a sister that lives in Nanaimo. I am 67 years old and was diagnosed one year ago. I have had PSP for 3 years. I live in Rossland.

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