Re: Does everyone get drop foot and walk funny

[Guest guest]

Hi ,

Not everyone develops foot drop or a " funny walk " .

I have CMT Type 1A with a genetically confirmed diagnosis. Yet I am

physically active including learning to run again. Although I have impaired

muscle strength in many ways including measures used by para-sport

classification I am not " impaired " to a disabled level.

We are all impacted differently. And the disease progresses differently in all

of us as well.

With best wishes,

Donna from London

www.myfitnessyear.com

[Guest guest]

Hello Donna and All,

Yes we are quite variable, but I believe we all deteriorate with age

simply because the body is not perfect at replacing its cellular

structure as the cells wear out in time and replacement genetics does not always

make a perfect replica. However we should do as much as we can that does not

hasten that natural deterioration. This is my philosophy and it has served me

well in 75 years. The " curve " is definitely not linear so one has to be careful

lest the end of the curve drops off of the chart. In other words - save some for

your old age!

EdM from NH

P.S. - I'm a believer in " educating " anybody who cares to listen.

____________________________________________________________

[Guest guest]

Hi Donna,

I wouldn't call it walk funny. It is a different gait, I think the correct term

is " high steppage gait " . I sure don't feel it is funny to walk like this. It

works for me, I get from A to B (most of the time) but I would prefer a normal

gait. And the people who see me walk like this seldom laugh, so no, it is not

funny at all.

I guess you meant if everybody with CMT get the high steppage gait. You do if

your nerves in your feet are affected because in that case you can't lift your

feet properly, and the only way to walk without tripping over your feet is to

lift them higher. Braces are great becuase they lift the feet and it is possible

to walk without lifting the feet that much. But often there is a balance problem

too, so braces can't correct to 100% either.

It is great that you don't have the high steppage gait. If you don't have

problems with nerves in your feet (the first sign is that they get less

sensitive, you don't feel when they are touched), you might not need to worry

about developing high steppage gait.

Beata

[Guest guest]

My walk is hysterical. (; Actually, I limp. But with the proper orthotics (not

AFOs just inserts), I walk much better. Everyone is different with how CMT

affects their gait.

>

[Guest guest]

Hi Beata,

 

Hope you're doing well.  Just wanted to chime in here and comment on the high

steppage gait.

 

CMT affects us each differently.  Lack of high steppage gait doesn't mean that

the nerves in the feet aren't affected.  I don't have the high steppage gait

(yet), but my feet are very affected by the disease.  I have had weak ankles,

very high arches (pes cavus), twisted heels, and hammer toes since I was in

elementary school.  I now also have pain, numbness, lack of

sensation, circulation problems (purple feet/difficulty healing), and other

issues in my feet.  I also have no detectible nerve signals in my arms, hands,

legs, and feet at all.

 

So, the nerves in my feet are severely affected, but I still don't have drop

foot and therefore, a high steppage gait.  The drop foot comes from a specific

nerve in the calf being affected in a certain way.  Not everyone with CMT has

this nerve affected the same way at the same point in the progression of the

disease.

 

It is odd, I know.  But I can attest to the fact that lack of drop foot and

high steppage gait is not a reflection on the severity of the disease state

within a person. 

 

From: Beata Boo <beataboo@...>

Subject: Re: Does everyone get drop foot and walk funny

Date: Tuesday, January 19, 2010, 1:26 AM

 

Hi Donna,

I wouldn't call it walk funny. It is a different gait, I think the correct term

is " high steppage gait " . I sure don't feel it is funny to walk like this. It

works for me, I get from A to B (most of the time) but I would prefer a normal

gait. And the people who see me walk like this seldom laugh, so no, it is not

funny at all.

I guess you meant if everybody with CMT get the high steppage gait. You do if

your nerves in your feet are affected because in that case you can't lift your

feet properly, and the only way to walk without tripping over your feet is to

lift them higher. Braces are great becuase they lift the feet and it is possible

to walk without lifting the feet that much. But often there is a balance

problem too, so braces can't correct to 100% either.

It is great that you don't have the high steppage gait. If you don't have

problems with nerves in your feet (the first sign is that they get less

sensitive, you don't feel when they are touched), you might not need to worry

about developing high steppage gait.

Beata

[Guest guest]

Hi ,

Thanks I am fine, except from the high steppage gait )

Good to know that you don't have it! You are  probably right, that nerves in

the ankles need to be affected too for this to arise. Also, I think that the

position sensing needs to be affected. I lift my feet higher because I dont know

where they are. my foot drop is not that bad(I have seen it on video, hardly

visible) but since I don't know where my feet are exactly, I lift them higher.

Beata

________________________________

From: <agraham2k@...>

Sent: Tue, January 19, 2010 8:08:23 PM

Subject: Re: Does everyone get drop foot and walk funny

 

Hi Beata,

 

Hope you're doing well.  Just wanted to chime in here and comment on the high

steppage gait.

 

CMT affects us each differently.  Lack of high steppage gait doesn't mean that

the nerves in the feet aren't affected.  I don't have the high steppage gait

(yet), but my feet are very affected by the disease.  I have had weak ankles,

very high arches (pes cavus), twisted heels, and hammer toes since I was in

elementary school.  I now also have pain, numbness, lack of

sensation, circulati on problems (purple feet/difficulty healing), and other

issues in my feet.  I also have no detectible nerve signals in my arms, hands,

legs, and feet at all.

 

So, the nerves in my feet are severely affected, but I still don't have drop

foot and therefore, a high steppage gait.  The drop foot comes from a specific

nerve in the calf being affected in a certain way.  Not everyone with CMT has

this nerve affected the same way at the same point in the progression of the

disease.

 

It is odd, I know.  But I can attest to the fact that lack of drop foot and

high steppage gait is not a reflection on the severity of the disease state

within a person. 

 

From: Beata Boo <beataboo (DOT) com>

Subject: Re: Does everyone get drop foot and walk funny

groups (DOT) com

Date: Tuesday, January 19, 2010, 1:26 AM

 

Hi Donna,

I wouldn't call it walk funny. It is a different gait, I think the correct term

is " high steppage gait " . I sure don't feel it is funny to walk like this. It

works for me, I get from A to B (most of the time) but I would prefer a normal

gait. And the people who see me walk like this seldom laugh, so no, it is not

funny at all.

I guess you meant if everybody with CMT get the high steppage gait. You do if

your nerves in your feet are affected because in that case you can't lift your

feet properly, and the only way to walk without tripping over your feet is to

lift them higher. Braces are great becuase they lift the feet and it is possible

to walk without lifting the feet that much. But often there is a balance

problem too, so braces can't correct to 100% either.

It is great that you don't have the high steppage gait. If you don't have

problems with nerves in your feet (the first sign is that they get less

sensitive, you don't feel when they are touched), you might not need to worry

about developing high steppage gait.

Beata