Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Hello--
I would like to connect with fellow Canadians on the list who've got WD......and curious if any of you are out West!
I'm a 29 year old, female patient diagnosed last April, and spent my 6 weeks in Ann Arbor...with neurological presentations (tremors in hands, voice problems, etc.)--
I met with a few other WDers in Ann Arbor....but curious if there are any out this way...
Cheers,
Bronwyn
Hi,
My name is George & I am from Winnipeg, but in the preocess of moving to the USA. I was diagnosed in 1966. I am 60 years old. My little sister Jean, who lives outside Kamploops also has WD.
Looking forward to hearing from you.
Best regards,
George
Hi Bronwyn,
We live in North Carolina. My 17 year old son was diagnosed in Aug. 2007. We were in Ann Arbor, for six weeks and are going back the 17th of this month. Our son has lots of neuro presentation. Dystonia, dysarthria, dysphasia. I was wondering, were you on medication for the symptoms and how are you now? Good luck with finding more Canadians!
Thanks,
Amy Christian
Dear Amy,
Yes! I took the TM and am now solely on zinc acetate ----- and it's working! My balance has returned, my voice has infldections now, my distonia had disssapeared (face hands, eyes, feet), and my shaking has decreased a litle -- oh! and more energy!
So...of course, it's not fast enough -- but I do notice a change...and so do those aroundd me!
I was in Ann Arbor for 3 days in August -- too bad I missed you. I'll be back in April....
Write back with any more queeries!
And good luck to both your son and to you...
Bronwyn
Dear George---
Thanks so much..so at least there are two of us in BC! So were you initially on penicillaamine when first diagnosed -- and now?
Thanks so much for the info---
good luck with your move!
Bronwyn
Hi,
I have been on zinc since 1986, when I went to Dr Brewer's research study to pass zinc acetate. I was his 34th patient & went to Ann Arbor twice a year, for 2 week periods for 11 years.
Jean was diagnosed in 1967 & has been on Pen for over 40 years. There is another young gal from BC. around the Kelowna, I do believe.
Jean is on this site too, but is to0o busy travelling to check messages often.
I hope you are doing ok.
George
Welcome to our wonderful world of WD'ers, Amy. Your son & you Bronwyn had the best treatment in the world. We are lucky to live in North America.
WD some times takes up to 2 years before one is back to normal; if caught on time. In most cases we can lead a normal life. You must take your meds faithfully. I know a teen age boy has his friends & his sports & can get busy & forget the odd dose; that is OK.
Once you are on zinc for awhile you might be able to switch to 2 zinc a day. That makes it much easier.
Good luck.
Best regards,
George
Hi Brownwyn
Like you I am in BC (the little sister of George) Where are you? I'm outside Kamloops but travel throughout the province to visit friends --- maybe we could connect in person. It would be great to meet you. There are others of us in BC but not yet connecting to this community.
Jean (aka MJ)
Hey Jean--
I'm in VICTORIA---- would love to meet you in person at some future point!
ronwyn
Hi Bronwyn,
I am in Canada too, although I am not Canadian, I'm an American. My hubby is the Canadian, lol. I am in Hamilton, ON. I have Wilsons disease. I have the neurological presentation too.
take care,
hugs,
Kecia
Hi Kecia --
I'm in BC, but nonetheless we're both here.
All the best,
Bronwyn
I lived in Victoria for 2 years (2003-2005) and just got back from a visit there last week, can't remember the name of my Liver Specialist in Vic (but I much preferred him to the ones I've had in Toronto since Dr. Blendis retired in the 90's).
I think at the time he said I was the only Wilson's case on the island (gosh lonely!) but apparently that was not true.
;-)
I only just noticed this post - if you ever remember his name please e-mail me directly at improvise@shaw.ca
Thank you!
I'll ask my current specialist at my next appointment in June, he should have the referral on file.
Though I am not Canadian, I lived in Montreal during the '70's while attending McGill and during my time there, I went to an opthalmologist at Royal Victoria Hospital for a routine eye exam and he noticed my K-F rings though unfortunately, the hospital lab screwed up on the blood tests (they did not use the right color tube top) so I did not get diagnosed until 2 years later after I'd graduated and returned to Boston--still with no symptoms at the time.
In any case, I'll be forever grateful to that opthalmologist at RVH because I pursued the matter a couple years later with another opthalmologist in Boston who was unable to see my K-F rings but insisted that I get tested again for wd which I did and this time the lab tests proved I did have wd and the diagnosis was confirmed with a second opinion.
Don't know why I didn't answer to this post before?
My son, Jeremy has Neurological Wilsons and we live in Kelowna, BC.
Jeremy was diagnosed last July 2008. Would love to chat...hwallman@shaw.ca
Add to the discussion