Ottawa CMT

[Guest guest]

I am curious to know if there is anyone else in the group from Ottawa, Ontario

(Canada) There is no support group here that I know of.

Bobbie

[Guest guest]

Hi Bobbie:

I'm in Ottawa. I looked into the MDA support meeting once but it's pretty

much Duchenne MD focused, although the group is very welcoming. I've met

through email a gentleman named who is also here and has CMT.

Crabtree (founder of CMT International) has a brother here too. There is

one other family at CHEO that I know of with a young child (about 9 or so I

think) affected, though Gavin is the youngest they've had in a number of

years.

We're in Westboro..where are you?

My email is above - if you'd like to contact me directly, or phone 943-8883

Cheers

Sally

[Guest guest]

Hi Sally,

Nice to hear from you. I have also been invited to the MD meeting but never

really got there because I was working until last October. I am really

interested in meeting others here in Ottawa who have CMT . I am also interested

in finding doctors, neurologists and rheumatologists here who may be

knowledgeable about CMT. It has been my experience that there are not too many .

At least I have not found any who were.

Thank you for sharing your phone number. I live in Beacon Hell North. I did

telephone you as soon as read your email but you were not there so I left a

message.

I started to use a cane last year, no choice. I am now using a walker due to

having CMT, arthritis, deteriorating disc in lower back. Also Gaget's disease of

the bone.

I take Neurontin and it has helped with the problems in my feet. But I am still

having problems with my left ankle, knee and hip. I do go for

physio,acupuncture, & chiropractor.

I have inner soles for my shoes and have bought New Balance shoes - only

problem is that the straps are too short because of the swelling on the top of

my feet. I have to find a shoemaker who can extend the straps so the velcro will

work on them.

It would be nice to find a group of individuals here in Ottawa and be able to

meet once in awhile to share info. I left my telephone number on your answering

machine.

Bobbie (Barb Conlin)

[Guest guest]

Hi Bobbie/Barb:

Sorry I missed you yesterday, I was in and out of meetings. I'll give you a

ring today and yes..it would be great to connect and share info. We were

referred to CHEO through Dr. Keen, who has specialized in the past in

pediatric neurology but now principally sees adults. He knew immediately

what Gavin had, I think because he had no tendon reflexes. I suspect you

are right about the general difficulty of finding knowledgable doctors. We

have a friend who had been seeing a neurologist here for 2 years due to

numbess/tingling in the feet/hands and sudden deafness in one ear. When we

mentioned generalities about CMT to him after Gavin was diagnosed he was

flabbergasted because he has prominant hammertoes and has always had balance

problems. His neurologist has never mentioned CMT, although his symptoms

are consistant with it.

Gavin has only periodic pain in his feet right now, wears AFOs part of the

day and inserts the other part. We're doing OT and physio with him. He has

had back pain, but that seems to have gone away now he's in orthotics. His

hands thankfully seem unaffected as of yet.

Brown's shoes in Perth will supposedly do custom work...

Our orthotist seems to have a number of CMT adult patients...I'm sure we

could find a group.

Talk to you soon

Cheers

Sally