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Re: Canada CMT

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  • 5 years later...

Hi Barb,

I'm in Castlegar British Columbia Canada. Are you in Canada,if

so where? I do not know any one in Canada besided my family with CMT.

Hope your Christmas holidays went well.

Debra

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Hi Debra,

Merry Christmas and Happy New Year. Yes I am in Canada. I live in

Ottawa. I had one son who had CMT also but he had CMT also. Do you have a doctor

who is knowledgeable about CMT? I do not. I have a GP and a rheumatologist for

my arthritis. I have been to a neurologist. He was more interested in the fact

that my sciatic nerve was causiing back pain. I also have deteriorating disc

disease and Pagets disease of the bone. At this point I am 72 years old and I

use a and I am know looking for a Wheel chair that is heavy enough for me

as I am overweight but light enough for people to put into their car. I will be

going to Cuba in January and my daughter will be coming from North Vancouver to

accompany me to Cuba.

Barb

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Hi Debra:

I too live in Canada. Port Elgin, Ontario on the shores of Lake Huron. Great

sandy beaches in the summer (cottage country) but we have quite severe winters

with the West winds coming off of Lake Huron.

It is actually quite nice just now....11 degrees C or 52 degrees F and raining

slightly. It has taken most of the snow away.

I am originally from Saint , NB and both my younger sister and brother have

CMT. I was diagnosed using DNA testing and so were my siblings. We think my

father had CMT but he died very young (42).

In any event a big hi from another Canadian who has CMT. I'm sure there are many

of us.

Regards................

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Happy Holidays! I'm from Mount Pearl, NL, right outside of St. 's. I got

checked by a neurologist and brace people and they weren't at all interested in

helping me get anything better than I have now. I was diagnosed in '92 (tho I've

tripped my whole life) when I lived in New Jersey and have been wearing casted

AFOs since then. I was wearing the Helios for a year or so. They were wonderful,

but kept breaking. I did try the Toe-Offs, but they didn't work at all for me.

My balance is really off and they only helped with foot drop. The AFOs I have

now are about 10 years old and wearing well.

JoAnn N.

Newfoundland, Canada

(originally from NJ)

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Good to see people from Canada. I am from western Canada, Alberta,

small town called Bowden. Red Deer is the closest main centre. I

would appreciate hearing from anyone in this Central Alberta region.

I have often thought a support group would be nice. Anyone out this

way? Red Deer, Innisfail, Olds - all towns nearby. Anyone in these

areas with CMT? Calgary is the closest large city - to the south

Edmonton is to the North (I do not know Edmonton well at all) Grew up

in Calgary. Even if someone in Edmonton or Calgary, I would love to

hear from you and see if maybe we could meet. I find this a lonely

world at times - CMT wise - I have many friends - just would love

support for CMT.

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  • 2 weeks later...

Hi Barb,

Sorry this is so late in coming to you. I got sick over the holidays then had

computer problems. You have most likely left for Cuba by now but this will be

waiting for you when you get back.

I live in Castlegar British Columbia. We've had so much snow during the holidays

I didn't think it would ever quit. Finally it has warmed up here so the snow is

finally melting. Yes I do have a GP but I think I know more about CMT then she

does. I had a very good doctor but he retired so I am stuck with this one for

now. She is always on my case about my weight(She of course is very thin :o( )I

am about 40 bls over weight. 

I do use my treadmill and my bowflex as much as I can. Some days the pain is so

bad that I can not even think of using the machines. I do try to push my self

though. I have lost 36 lbs so far but now that I'm over 50 it is getting harder

to do so. I also walk with a walker so it is slow going when I am out walking.

My balance is so poor so the walker does come in handy. I use my leg brace on

the treadmill so it does help.  I was told I would be in a wheel chair by the

age of 30 and I am now 52 and still going strong so I must be doing somthing

right.

I do not know for sure which CMT I have. I think it is CMT 1. Six out of seven

of us have CMT. Two of us were affected with it the worst. Some of my Nieces and

Nephews have CMT too.

I've had a hip replacment done on the left side thirteen years ago and because

of my stupidity of not wearing my leg bracing one day I fell and damaged the cup

and cracked my pevis in 2001. Since it was redone I've been good. I do have a

problems with the sciatic nerve not but I deal with it.

We take in International students from all over the world. We usually have three

boys with us at a time but I am getting a little tired so I have cut back to

two. They are from Korea and Japan. I do so enjoy them in our home, I think

they keep us young. We never did have children of our own due to the facted that

there was a fifty fifty chance of our childern getting CMT.

I went through so many surgurys when I was younger that I did not want to put

our children through this. My husband was so understanding. He's a great

suporter of mine. He always worries that I'm over doing it all the time and he

complained to the Doc once about it and the Doc said what ever she is doing it

is keeping her out of the wheel chair. But I find I do need a nap in the after

noon. :o)

Well I guess I am getting a little long winded here so I better sign off for

now. Hope you had a great time in Cuba. Take care.

Debra(Canada)

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Hi JoAnn,

I am in Castlegar British Columbia, I was diagnosed when I was eight years old.

I needed surgery for scoliosis and hammer toes. I too tripped all my life. When

I was in my thirties I received my leg braces and as long as I wear them I do

not fall any more.They are a hard plastic and ugly but I do not care as they

stop me from falling and helps with the pain in my lower back.

I walk with a limp as I have 1 leg shorter then the other but the braces helps

to minimize this. I do walk with a walker and it helps with my balance. My

walker is a bright yellow so they can see me coming.LOL bye for now.

Debra(Canada)

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Hi ,

Big hello from Castlgar BC. The weather is not to bad here now but during the

Christmas holidays it started to snow and did not stop till last week. We have

about six feet of snow in the yard. Hubby had to go up on the roof and take some

off  so it would not damage the rafters.  We have not had this much snow since

96. The coldest it ever got here was minus 18, but now it is about minus 1. So

lots warmer.

My father to had CMT and six out of seven of us have it now. Some nieces and

nephews has it also.My self and older sister has been affected by CMT the worst.

The others shows small signs of it. Hope all is well in Ontario. Take care.

Debra(Canada)

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Hello ,

I am in Castlegar BC. I was born in OLDS ALTA.Many many many years ago. :o) Grew

up in Edmonton and then moved to British Columbia in the early seventies and

lived here ever since. I did move to Wainwright Atla. in 1984 with hubby for

about seven years then moved back to British Columbia in 1991 . If you ever want

to chat with a CMTer from BC I'm here. Take care.

Debra(Canada) :o)

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Hi JoAnn,

It's me again. I need to make a correction on my last email,the surgery I had

was not for hammer toe but for clubed feet. I'm not sure what I was thinking. I

do need surgery on the left foot due to the hammer toes but I'm not sure I will

get it done as they can not promise it will work.  

Any ways have a great day.

Debra(Canada)

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