Since I am new here, first let me say that it is my Dad who has PSP. In my opinion, about 8 years now. I am encouraged by the support offered here and have learned alot by reading for hours upon hours online. Knowledge is power!
I want to know if other Canadians are as frustrated as I am about the lack of resources, support and research right in Canada.
I would give anything to attend the symposium in London this week!! There is nothing near me like that.
Just wondering if anyone else feels this way?
MJ
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MJ-Mark
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After the Symposium, we will be able to email the presentations/abstracts. If you would like a copy, do please get in touch with either myself at debbie.benadie@pspeur.org or my colleague, deborah.wheeler@pspeur.org and will email them to you.
I would love it if you could do that for me! I seriously was going to buy a plane ticket last night but I cannot leave Mom and Dad alone for that long. Had I known about it a couple of months ago, I could have made arrangements!! My email address is taxvictim@rogers.com
I havent looked into the cost yet. I want to speak to my Dads neurologist because it could interfere with his blood pressure meds. How expensive is it?? Hmmmm
No, you do not need a prescription for co enzyme q10 - but it is expensive and comes in various strengths, research before you buy.
Anyway, welcome to our forum! My husband has PSP, around about 6 years now, looking back, and he has been going down hill since then. Having said that, he's still fairly mobile, has very few falls and then only when he's exercises or is tired! He can eat and swallow well and 'participates in the world' up to a point. Unfortunately, he gets very bad tampered with me sometimes and is still very stubborn - hey ho!
On a more helpful/positive? note, he is taking part in a drugs trial for Davenutide at Haywards Heath here in Sussex. Its very early days - third week - so watch this space.
Speaking of temper......does your husband say mean things and not remember?? dad can be VERY NASTY and then 20 minutes later not even remember!! He can be one foul mouthed impatient mean spirit!!
Just wondering if you were having the same experience!
I am in Canada and I agree that not much is known about PSP here. I didn't even know what it was when diagnosed. I went home and googled it - Since then I have been trying to get rid of it but to no avail.
Dont feel bad, 65% of doctors have never heard if it! I certainly hadnt heard of it either when Dad was diagnosed. I knew for years that there was something wrong.....took forever for someone to put a name to it.
It makes me angry at the lack of resources in this country. So many other countries have so much more to offer!!
Yes, it is atrocious here in Canada regarding the lack of resourses. It took us 2 years to get Jeff properly diagnosed and then there has been ZERO in terms of support. We reached out to the Parkinson Society and they were incredibliy helpful. We are still struggling to find an MD in this country that fully understands the disease that can guide us on care and treatment.
In the early stages, Jeff's family doctor didn't have a clue and even with a detailed list of symptoms and behavioral changes. What I never understood was why the heck we were never referred to a specialist?? Long and short of it was, we have been in 4 different countries seeking treatment.
First, where do you live?? We live in Kingston, ON. home to Queens University. There are some fabulous doctors here, the neurology Dept is awesome!! They know what theyre doing!! Are you close to here?
The lack of knowledge on the part of GP's is mind bending!! my Dads GP is a nitwit. Seriously, not even joking! Did you know that 65% of physicians have never heard of PSP?? Its true! I have read so much, watched so much, I believe I could teach it to them! I am consumed by this. Its all I do!!
I take care of my Dad (helping Mom). I think he has had this about 8 years....such an incidious disease.
It says something that we have to go outside our country for resources and specific support for PSP......sad really.
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