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I WAS FITTED WITH A HEIL BRACE WHICH WAS VERYHELPFUL WITH MY FOOT DROP CAUSED

BY MY WEAK ANKLES. THEY ARE ATTACHED TO YOUR SHOES AND ARE VERY EASY TO WALK

IN. THEY MAY NOT BE FOR EVERYONE, BUT WORK WELL FOR ME.

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Kathy/, please scroll down. My answers are in capital letters. Jeanie

****************

In a message dated 5/11/00 7:55:24 AM Pacific Daylight Time,

wolfhybrid2000@... writes:

<< Dear Member,

As some of you know, my son has CMT. We do not have Insurance, so

all of our Dr. visits need for us to have some suggestions for the Dr. Most

of the Ortho's we've seen either say " you have what? " or they have just

heard of it. Anyhow, on our next expensive visit, I need to have some

suggestions on what type of brace we need for his condition. I would feel

more comfortable with me having the suggestion based on CMT experience rather

than trial and error on doc's part- I can't afford that. So here are a list

of some things I've heard of using, but I'm not sure how they work-

Please help if you can.

What is a heel orthosis?

How do the A.F.O's work? I HAVE A PLASTIC AFO THAT FITS INSIDE MY

SHOE AND GOES UP THE BACK OF MY LEG TO JUST BELOW THE KNEE AREA. IT HAS A

WIDE STRAP THAT GOES AROUND THE FRONT OF MY LEG TO KEEP IT ON. THE AFO KEEPS

MY FEET FROM DROPPING (I HAVE DROP FOOT), SO I DON'T HAVE TO PICK MY LEGS UP

AS HIGH IN ORDER TO NOT TRIP OVER MY FEET. MY AFO HAS ALLOWED ME TO GET

AROUND MORE SAFELY.

How does heel fusion help?

How does a Toe-Off brace work?

Also, I've heard that the Toe-Off brace can be purchased over

the counter, is this true? Where would I find that kind of store?

has trouble with balance, Legs going numb, Feet hooking and

curling inward-he walks on the outside of his feet. Weak ankles too. Since

everyones condition is different, I just wanted to give you guys an idea of

what we needed help with.

WHEN I WAS YOUNGER I WAS ALWAYS TURNING MY ANKLES. MY DOCTOR SUGGESTED

SURGERY. TRIPLE ARTHODESIS IS WHAT HE WANTED TO DO. AFTER THE SURGERY I

DIDN'T TRIP OR TURN MY ANKLES NEARLY AS MUCH. THE SURGERY KEPT MY ANKLES FROM

MOVING OR TURNING IN OR OUT.

I HAVE ALSO HAD PROBLEMS WITH BALANCE. WHEN I STARTED WALKING LIKE I WAS

DRUNK I STARTED LOOKING FOR A WALKING AID TO HELP ME KEEP MY BALANCE AND WALK

STRAIGHT. I ATTEMPTED USING A CANE BUT QUICKLY WENT TO A FOREARM CRUTCH. (MY

HANDS WERE TOO WEAK TO GRIP THE CANE).

Thanks,

Kathy () >>

KATHY, IN THE STATE OF OREGON WE HAVE A CRIPPLED CHILDREN'S CLINIC. GROWING

UP I HAD SEVERAL SURGERY'S AND THRU CRIPPLED CHILDRENS THEY PAID FOR

EVERYTHING. MY DAD WAS A MINISTER AND NEVER WAS PAID SO WE DIDN'T HAVE

INSURANCE OR MONEY TO PAY FOR MEDICAL COSTS. JASON SHOULD STILL BE ILLEGIBLE

UNTIL HE IS 18 YEARS OLD. CALL YOUR STATE HEALTH OFFICES AND SEE IF THEY

STEER YOU IN THE CORRECT WAY.

JEANIE

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Kathy/, please scroll down. My answers are in capital letters. Jeanie

****************

In a message dated 5/11/00 7:55:24 AM Pacific Daylight Time,

wolfhybrid2000@... writes:

<< Dear Member,

As some of you know, my son has CMT. We do not have Insurance, so

all of our Dr. visits need for us to have some suggestions for the Dr. Most

of the Ortho's we've seen either say " you have what? " or they have just

heard of it. Anyhow, on our next expensive visit, I need to have some

suggestions on what type of brace we need for his condition. I would feel

more comfortable with me having the suggestion based on CMT experience rather

than trial and error on doc's part- I can't afford that. So here are a list

of some things I've heard of using, but I'm not sure how they work-

Please help if you can.

What is a heel orthosis?

How do the A.F.O's work? I HAVE A PLASTIC AFO THAT FITS INSIDE MY

SHOE AND GOES UP THE BACK OF MY LEG TO JUST BELOW THE KNEE AREA. IT HAS A

WIDE STRAP THAT GOES AROUND THE FRONT OF MY LEG TO KEEP IT ON. THE AFO KEEPS

MY FEET FROM DROPPING (I HAVE DROP FOOT), SO I DON'T HAVE TO PICK MY LEGS UP

AS HIGH IN ORDER TO NOT TRIP OVER MY FEET. MY AFO HAS ALLOWED ME TO GET

AROUND MORE SAFELY.

How does heel fusion help?

How does a Toe-Off brace work?

Also, I've heard that the Toe-Off brace can be purchased over

the counter, is this true? Where would I find that kind of store?

has trouble with balance, Legs going numb, Feet hooking and

curling inward-he walks on the outside of his feet. Weak ankles too. Since

everyones condition is different, I just wanted to give you guys an idea of

what we needed help with.

WHEN I WAS YOUNGER I WAS ALWAYS TURNING MY ANKLES. MY DOCTOR SUGGESTED

SURGERY. TRIPLE ARTHODESIS IS WHAT HE WANTED TO DO. AFTER THE SURGERY I

DIDN'T TRIP OR TURN MY ANKLES NEARLY AS MUCH. THE SURGERY KEPT MY ANKLES FROM

MOVING OR TURNING IN OR OUT.

I HAVE ALSO HAD PROBLEMS WITH BALANCE. WHEN I STARTED WALKING LIKE I WAS

DRUNK I STARTED LOOKING FOR A WALKING AID TO HELP ME KEEP MY BALANCE AND WALK

STRAIGHT. I ATTEMPTED USING A CANE BUT QUICKLY WENT TO A FOREARM CRUTCH. (MY

HANDS WERE TOO WEAK TO GRIP THE CANE).

Thanks,

Kathy () >>

KATHY, IN THE STATE OF OREGON WE HAVE A CRIPPLED CHILDREN'S CLINIC. GROWING

UP I HAD SEVERAL SURGERY'S AND THRU CRIPPLED CHILDRENS THEY PAID FOR

EVERYTHING. MY DAD WAS A MINISTER AND NEVER WAS PAID SO WE DIDN'T HAVE

INSURANCE OR MONEY TO PAY FOR MEDICAL COSTS. JASON SHOULD STILL BE ILLEGIBLE

UNTIL HE IS 18 YEARS OLD. CALL YOUR STATE HEALTH OFFICES AND SEE IF THEY

STEER YOU IN THE CORRECT WAY.

JEANIE

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Kathy/, please scroll down. My answers are in capital letters. Jeanie

****************

In a message dated 5/11/00 7:55:24 AM Pacific Daylight Time,

wolfhybrid2000@... writes:

<< Dear Member,

As some of you know, my son has CMT. We do not have Insurance, so

all of our Dr. visits need for us to have some suggestions for the Dr. Most

of the Ortho's we've seen either say " you have what? " or they have just

heard of it. Anyhow, on our next expensive visit, I need to have some

suggestions on what type of brace we need for his condition. I would feel

more comfortable with me having the suggestion based on CMT experience rather

than trial and error on doc's part- I can't afford that. So here are a list

of some things I've heard of using, but I'm not sure how they work-

Please help if you can.

What is a heel orthosis?

How do the A.F.O's work? I HAVE A PLASTIC AFO THAT FITS INSIDE MY

SHOE AND GOES UP THE BACK OF MY LEG TO JUST BELOW THE KNEE AREA. IT HAS A

WIDE STRAP THAT GOES AROUND THE FRONT OF MY LEG TO KEEP IT ON. THE AFO KEEPS

MY FEET FROM DROPPING (I HAVE DROP FOOT), SO I DON'T HAVE TO PICK MY LEGS UP

AS HIGH IN ORDER TO NOT TRIP OVER MY FEET. MY AFO HAS ALLOWED ME TO GET

AROUND MORE SAFELY.

How does heel fusion help?

How does a Toe-Off brace work?

Also, I've heard that the Toe-Off brace can be purchased over

the counter, is this true? Where would I find that kind of store?

has trouble with balance, Legs going numb, Feet hooking and

curling inward-he walks on the outside of his feet. Weak ankles too. Since

everyones condition is different, I just wanted to give you guys an idea of

what we needed help with.

WHEN I WAS YOUNGER I WAS ALWAYS TURNING MY ANKLES. MY DOCTOR SUGGESTED

SURGERY. TRIPLE ARTHODESIS IS WHAT HE WANTED TO DO. AFTER THE SURGERY I

DIDN'T TRIP OR TURN MY ANKLES NEARLY AS MUCH. THE SURGERY KEPT MY ANKLES FROM

MOVING OR TURNING IN OR OUT.

I HAVE ALSO HAD PROBLEMS WITH BALANCE. WHEN I STARTED WALKING LIKE I WAS

DRUNK I STARTED LOOKING FOR A WALKING AID TO HELP ME KEEP MY BALANCE AND WALK

STRAIGHT. I ATTEMPTED USING A CANE BUT QUICKLY WENT TO A FOREARM CRUTCH. (MY

HANDS WERE TOO WEAK TO GRIP THE CANE).

Thanks,

Kathy () >>

KATHY, IN THE STATE OF OREGON WE HAVE A CRIPPLED CHILDREN'S CLINIC. GROWING

UP I HAD SEVERAL SURGERY'S AND THRU CRIPPLED CHILDRENS THEY PAID FOR

EVERYTHING. MY DAD WAS A MINISTER AND NEVER WAS PAID SO WE DIDN'T HAVE

INSURANCE OR MONEY TO PAY FOR MEDICAL COSTS. JASON SHOULD STILL BE ILLEGIBLE

UNTIL HE IS 18 YEARS OLD. CALL YOUR STATE HEALTH OFFICES AND SEE IF THEY

STEER YOU IN THE CORRECT WAY.

JEANIE

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Nina, do you use a cane or forearm crutch to help you get around?

Jeanie

************************************

In a message dated 5/11/00 6:26:09 PM Pacific Daylight Time,

itch1@... writes:

<< The truble for me is that the weakness in the body is progressing, so it

is again getting harder to walk, but for a different reason. >>

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Nina, do you use a cane or forearm crutch to help you get around?

Jeanie

************************************

In a message dated 5/11/00 6:26:09 PM Pacific Daylight Time,

itch1@... writes:

<< The truble for me is that the weakness in the body is progressing, so it

is again getting harder to walk, but for a different reason. >>

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Nina, do you use a cane or forearm crutch to help you get around?

Jeanie

************************************

In a message dated 5/11/00 6:26:09 PM Pacific Daylight Time,

itch1@... writes:

<< The truble for me is that the weakness in the body is progressing, so it

is again getting harder to walk, but for a different reason. >>

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In a message dated 5/16/00 11:17:20 PM Central Daylight Time,

Moonglow21@... writes:

<< We do not have Insurance, so

all of our Dr. visits need for us to have >>

Hi Jeanie:

Years ago, when I was a teen, I had surgery similar to what you had. Mine was

done in a Research & Education Hospital in Chicago, IL, a branch of the

University of Illinois. It cost nothing. Perhaps there is a similar one in

your state. Another place to get help is the MDA, of Jerry . The

location near you should be in the phone book.

Regards & the best to you & ,

CMTer Bud in TX

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In a message dated 5/16/00 11:17:20 PM Central Daylight Time,

Moonglow21@... writes:

<< We do not have Insurance, so

all of our Dr. visits need for us to have >>

Hi Jeanie:

Years ago, when I was a teen, I had surgery similar to what you had. Mine was

done in a Research & Education Hospital in Chicago, IL, a branch of the

University of Illinois. It cost nothing. Perhaps there is a similar one in

your state. Another place to get help is the MDA, of Jerry . The

location near you should be in the phone book.

Regards & the best to you & ,

CMTer Bud in TX

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In a message dated 5/16/00 11:17:20 PM Central Daylight Time,

Moonglow21@... writes:

<< We do not have Insurance, so

all of our Dr. visits need for us to have >>

Hi Jeanie:

Years ago, when I was a teen, I had surgery similar to what you had. Mine was

done in a Research & Education Hospital in Chicago, IL, a branch of the

University of Illinois. It cost nothing. Perhaps there is a similar one in

your state. Another place to get help is the MDA, of Jerry . The

location near you should be in the phone book.

Regards & the best to you & ,

CMTer Bud in TX

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  • 2 years later...

In a message dated 2/22/2003 5:19:38 PM Central Standard Time,

rehab@... writes:

> I find I am constipated regularly and am wondering if it has anything to do

> with my

> protein intake.

----------------------------------

I find that ground flax seed meal is great for maintaining regularity. You

can put it in your protein shakes, or sprinkle it on cereal or salad or just

about anything, actually. I do a tablespoon 4 times a day. Available at

health food stores. Make sure it says cold-pressed or cold-milled. You have

to keep it in the frig.

Carol A

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