walking

[Guest guest]

I am amazed. I have had knee problems, both sides, since I was about 12.

My mother had them, my sister had them too. I think my mother had CMT (she

has sadly passed away so I can't ask her). As I mentioned, I started going

to see doctors as I had a sore tendon on my left foot, but wanted to do a

walking marathon. Since joining this group it seems like there are so many

people I have read about that have some of the same things I do. This is

really a great resource, just to hear what people have to say.

I still have not decided if I am doing the DNA testing thing. But

apparently my EMGs show demylination that is typical of type 1 CMT. I am

not sure what this means, but I do know that as I can walk marathons that I

probably do not show symptoms that much.

Speaking of knowledge sharing, what US organisation is doing the most

research into CMT? I fundraise in my marathons, last one I raise about

$4500, and I would like to split the money, perhaps to a neurology

foundation? Any recommendations most welcome.

I strongly recommend people to get custom built orthotic inserts for the

shoes. That is what keeps me walking PAIN FREE. I don't wear them with all

shoes, but they are great.

Also, I LOVE yoga. It is hard, especially the balance things (I usually

just stabilise myself on the walls for the balances). But the stretching

has made my feet stronger, and is straightening out my toes (I was

developing curling " hammer " toes). That is something my physio did not know

would help - but it really really does.

Thanks so much and have a wonderful Sunday,

Donna in London

[Guest guest]

I am on LDN and my walking just took a turn for the worst any vitamins

for stiffness? they just feel heavy.

Thanks

Lkilcollin@...Check out AOL Money Finance's list of the hottest products and top money wasters of 2007.

[Guest guest]

Hi ,If you have MS, taking LDN may initially worsen symptoms, especially spasticity. That normally passes within a few weeks, however. I have some suggestions for spasticity athttp://tinyurl.com/grpm9Happy Thanksgiving!Sincerely,Dudley Delany

dudley_delanyFrom: lkilcollin@...

Sent: Thursday, November 22, 2007 8:31 PM

low dose naltrexone

Subject: [low dose naltrexone] Re: WALKING

I am on LDN and my walking just took a turn for the worst any vitamins

for stiffness? they just feel heavy.

Thanks

Lkilcollin@...Check out AOL Money Finance's list of the hottest products and top money wasters of 2007.

[Guest guest]

Try B1-100 MG, that's what I think helped me.

[low dose naltrexone] Re: WALKING

I am on LDN and my walking just took a turn for the worst any vitamins

for stiffness? they just feel heavy.

Thanks

Lkilcollin@...

[Guest guest]

Jackie,

Actually, I used to think that was paranoia too. But in fact your stronger leg

muscles are pulling your foot in as a normal reaction to stress; yet, your

nerves that don't work are not firing to the outside muscles to pull your foot

out. So, in fact, that will cause you to trip more unless you have some kind of

support. It is so good to actually know that yet it is so difficult to know that

because if I get the feeling I'm being watched walking, I have to calm myself

into a boredom almost. I enjoy walking with either just one person or with my

dog and that's why. Well, just wanted to let you know; you're not paranoid.

Dawn

[Guest guest]

Do you know where in his book? I just read through the digestive

section, nothing about tip toe walking.

>

> Fourfold Path

>

[Guest guest]

No, let me dig through my favorites and see where I've hidden it. I'll

email you.

> >

> > Fourfold Path

> >

>

[Guest guest]

Thanks Jon,

My family keeps saying walk, walk, walk! Or you dad wasn't in a chair and he had

the same disease as you! Gees, it all gets old!

Geri

[Guest guest]

Geri,

I believe you family has your best interest at heart though. My docs

have always been of the " use it or lose it " school. Some exercise is

good for almost everyone. The scooter manufacturers have pushed people

to get scooters or electric w/c's to make it easier to get around.

When you stop using your muscles they start to atrophy. There are some

people in these groups who think just cause they may have aches or

their children have them that they need an electric w/c to lessen the

pains. I just wonder if this just makes the situation worse. I just

believe it's better to be up and walking whether it's with orthotics or AFOs.

Todays orthotics and AFOs are better than they have ever been.

Bob

[Guest guest]

Thank you, Bob

Yes I think you are right...gives me fits though...so do my shoes and braces...I

have to start wearing them more...gees they weigh a ton.

Geri

[Guest guest]

Walking can be good exercise, but everyone is different and there are many

factors to consider.

 

For me, I have to be very careful not to walk too much.  It's not an issue of

some little aches.  Walking too much can cause me severe pain in my feet, my

joints, and my back.  It also fatigues me and significantly limits my ability to

do other things.  As a result, I have to limit my walking.  I use a scooter when

walking outside the home for more than just a couple of minutes.  If I don't, I

could be in bed, unable to walk, for a period of time anywhere from a couple of

days to several weeks.  It's much better to walk a little bit each day within

the house, rather than pushing myself to walk further and then ending up being

in bed for weeks, since bedrest creates opportunity for additional atrophy from

which the muscle may never recover.

 

CMT affects us all differently.  There are some who may not understand the need

for a scooter or a wheelchair, but those who suffer from severe symptoms of

pain, fatigue, and weakness, we do understand.  These devices can reduce

fatigue, prevent injury, reduce the risk of falling, provide greater

independence, and enable us to do more than we could have ever done

otherwise.  I'm so grateful for my scooter!

 

Please note Dr. Vinci's comments below on this topic is the article " Management

& Rehabilitation in CMT " .

 

 

http://www.geocities.com/dgosling_rn/rehab1.html

3.Promotion of mobility:

 Walking is the best physiotherapy for contractures; so, even in late stages of

severe cases who use a wheelchair , daily exercises with a walker are

recommended.

 

An Electric wheelchair or scooter will protect your upper limbs from overwork,

saving you energy which may allow you to continue to walk inside at home or at

work, and give you more independence.

[Guest guest]

Thanks for your very informative post. You are so right about how CMT effects

each and every one of us differently. I am learning quickly that many of the

things I can do now, are impossible for others many years younger than me. At

the same time, I know that my disease is still progressing and that next month,

or next year I could wind up back in the wheelchair that has become a permanent

piece of furniture in my great room. To each his own. What ever works for you,

is basically what it all comes down to.

Mark

[Guest guest]

Thank ,

I think it is important for everyone to know that CMT affects people so

differently. I could never do the things that many on this site can do. I am

just physically unable to, although I never say no to trying something, I just

find a smarter way to do it. I use a scooter when I need to get a lot done

quickly and when I am doing a lot of standing for long periods of time, I need

to use the scooter or my legs will wear out and I am exhausted and have a lot of

achiness in my legs.

One thing I did discover just last night! My legs were so achy and I asked my

husband to rub them for me. It worked a little, but when he rubbed the bottoms

of my feet, it relaxed my entire leg. I now want to try to learn as much as I

can about foot reflexology, because there is definately something there that

works!

jackie

[Guest guest]

Thank you for your post . You hit the nail right on the head!

[Guest guest]

Hi all,

Let me see if I can ask this question the right way. I used to walk all over

the place left drop foot and all not even knowing what an AFO was. Now wearing

one on the left foot for two years, wow help, but also hinders. Even with it on

I am not a secure walker. I have to use a cane to help also. Atrophy wearing

one for sure, BUT I am bound and determined not to let it get the best of me. I

go to a gym three times a week to do excersises I feel comfortable doing. But

back to walking, I miss walking my own neighborhood like I used to no AFO at

all, but now it has really changed my gait. Anyone know what I mean. Balance

for sure not there. Thanks for reading.

Elaine

[Guest guest]

Hi Elaine,

First of all, consider the source, I don't wear AFOs. Having said that,

after reading your email about walks and gym exercises, and the one AFO

changing your gait, I am wondering if maybe your gait should be re-

assessed, because you may be under balanced. Well fitting AFOs should

cause a person to walk better, have a better gait. Just my thought.

Gretchen

[Guest guest]

Elaine-

That's how it was for me too.  When I got my plastic braces year ago I could

walk fine on my own with no support for about two years.  Then when the bad

balance kicked in, the braces couldn't do their job.  I then went to carbon

composite braces which were better than the plastic, but not for long,  I was

then on to a cane, then a walker, then 2 crutches. If you can believe it I have

fallen more than once while holding 2 crutches. And last week I sat on a bench

while my husband went to get the car, and I fell off the bench.  I don't know I

did that. Now I use a scooter and a manual wheelchair when I have to take more

than a few steps.  Everything works -for a while.

Lyn

[Guest guest]

Hi Elaine,

Three and a half years ago, when first diagnosed, I had physical

therapy and as a result of it, walked pretty well. My left foot drop

continued to get worse, and I obtained my first AFO, a carbon off

the rack job. It made an enormous difference in my walking and I

wore it all the time (not to bed, though). As time went on I started

to feel very unbalanced - my right foot had progressed to a point

where I needed an AFO, also. I ended up with custom made AFOs and

initially felt great walking with both of them. As my muscles

continued to deteriorate I got a second pair of custom made AFOs.

I walk 100 times better with them than without, but I don't feel the

ease of movement that I initially did. I have never needed any other

type of support with them, but have to be extra careful walking on

uneven terrain. Walking slowly and straight, like down the aisle

of a church, is also difficult.

It seems like I'm at the point where there's only so much AFOs can

do for me. I wish you the best of luck with yours.

[Guest guest]

Dear Lynda,

 

I am sorry to hear about your leg brace problems.  I went through the same

situation a few years ago, but when I found the Helios braces, it solved many

problems for me.

I know several people who also tried the Carbon Composites brace (I think that

is the correct name), and had the same problems with it not holding up or

working properly.

The Helios was the best investment I ever made for my legs and my whole body

(and mind).  My doctors are continually amazed at how well I do.  I hope you are

doing much better soon!

 

Wayne

[Guest guest]

Hi ,

I really appreciate your response. I just get so perplexed sometimes with the

AFOs that I have. I really feel it wekens the foot muscles not so much the

leg, meaning that when I am walking around the house without it my foot just

kinda flaps around and doesn't land like it usd to. (If that makes sense) LOL

Anyway I realize balance is definetly affected and that is how it is Thank

You again for responding and please email me again.

Elaine

[Guest guest]

I never wanted to walk the Appalachian trail until I saw a documentary on it a

few months ago. Made ridicules sport of hiking look endearing. Maybe I can find

someone to walk it for me?