| Help me please for My Mother |  | ||
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Posted by: Todd Massey ® 01/08/2003, 10:00:14 Author Profile Mail author |
My Mom has suffered with blepharospasm and Spasmodic Dysphonia and the Bot. Toxin that only helped mildly at first dosen't work anymore and she is living like a shut in and in what I believe is a spiralling depression.I am not sure of diagnosis even .is it possible that she may be dopa responsive??? and do we have any Canadian Dr.s that are fluent in Dystonia Rx.?? Help if you can. Thx |
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Re: Help me please for My Mother Re: Help me please for My Mother -- Todd Massey Top of Thread Archive
Posted by: catherine pender ®
01/08/2003, 11:10:13
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ToddThere are a couple of Canadians on this site. What city does your mother live in. Maybe we can point her in the right direction
June lives in Toronto, Debbie in London and I live in Calgary. I think there are some lurkers out there that might jump in
We are all happy with our doctors.Its wonderful you are supporting her
Catherine
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Re: Help me please for My Mother Re: Re: Help me please for My Mother -- catherine pender Top of Thread Archive
Posted by: Debbie Campbell ®
01/08/2003, 19:38:24
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Sorry hear your mother isn't doing very well. I'm from Ontario and was diagnosed a year ago. I see an excellent neurologist. MIf you need more details, don't hesitate to ask!
I hope your mother begins to feel better. I think we all go through periods where we get fed up and become depressed. At times, it's hard to shake if off especially if your not seeing any results from the treatment your receiving. We completely understand.
Debbie from Canada--modified by Debbie Campbell at Wed, Jan 08, 2003, 19:41:19
Modified by at Wed, Jan 08, 2003, 19:41:20
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Re: Help from Canadians, please Re: Help me please for My Mother -- Todd Massey Top of Thread Archive
Posted by: Sally - in - Idaho ®
01/08/2003, 16:00:24
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Another caring son ... how wonderful! Welcome to you and your mother. As Catherine has told you, there are several Canadians who post on this BB (have you also checked out the SD BB?). I'm sure one of our Canadians will pop in here soon.
Please feel free to ask any questions you/mother have and someone will try to help you. Don't hesitate to bring up anything that might seem "far out," because it's often something that someone else has dealt with.
Good luck in finding the help needed. Pleae drop in often.
A hug to your mother.
Sally in North Idaho
--modified by Sally - in - Idaho at Wed, Jan 08, 2003, 16:01:23
Modified by at Wed, Jan 08, 2003, 16:01:23
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Re: WELCOME TODD Re: Help me please for My Mother -- Todd Massey Top of Thread Archive
Posted by: June in Toronto ®
01/08/2003, 16:16:31
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I just welcomed another son (Ken from the U.K.) who is asking questions for his mother as well. Welcome to the beb bb Todd, I notice you live in Edmonton, Alberta (I live in Toronto). Both your mothers are depressed and perhaps its because their dystonias are not responding to Botox treatments. You should read all you can about these Dystonias on the main page here and also by applying to the BEBRF Foundation at the link below, if you haven't done so already. There is also a Spasmodic Dysponia bb here - you go to the bottom of this beb bb page and click on Dystonia, then to the bottom of that page and click on Spasmodic Dysponia. The Dystonia Foundation main page is at www.dystonia-support.org.There used to be a Dystonia clinic in Edmonton (Wayne Martin, M.D. Movement Disorder Clinic, Room 19, 10230 111 Avenue, Edmonton,AB T5G 0B7,Tel:403-474-88050I have NO IDEA of what it is like.
There is a Canadian Representative for Dystonia in Toronto - her name and telephone number are:
Shirley Morris, Canadian Rep, Dystonia, 416-488-6974 or 1-800-361-8061
She might be able to help you with doctor's names in your area.Can you tell us more about your mother please? How long she has had beb, how many units of botox she has been receiving and at what intervals. We beb'ers (on this bb) feel that the placement of injections and a good movement disorder doctor is ALL important to the best results. Sometimes it takes a few sets of injections (and another doctor in some cases) before you find what works well.
We care, Todd, so keep in touch and I'm sure othrs will be posting back to you.
June in Toronto (beb/meige)
Related link: http://www.blepharospasm.org
Related link: http://www.blepharospasm.org
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