Re: better as adult than child

[Guest guest]

Lorna,

I am interested in how you are better as an adult. I am the same. Did

symptoms go away like mine did? Did you receive potassium therapy? What

were some medications taken as a child that you stopped as an adult? How

often did you fall as a child? How often do you fall now? Did you wear

AFOs or orthotics as a child and not wearing them now? Did you wear

corrective shoes as a child? Did you have muscle rigidity and spascity

as a child or teen that went away as an adult? What kind of vitamins did

you take as a child and what, if any, do you take now? As a child, how

did you walk and what distances? What about now?

You are the first person I know that has said she is better as an adult

than she was as a child and this is my story also.

~ Gretchen

[Guest guest]

I didn't do anything. As a child I was in incredible pain. I missed 1/3

of every school year. I twisted my ankles almost weekly. My balance was

poor. I couldn't walk up inclines. I couldn't turn a key in a lock. I

also had an undiagnosed hip dysplasia. At 25 the bad hip was diagnosed

and replaced. All of a sudden, half of my pain was gone! I started

taking potassium and magnesium for the leg cramps and they went away.

For some reason, moderate inclines aren't a problem for me. I remember

not being able to participate in a picnic because I couldn't even crawl

up to the top of a hill where the other kids were. Now I can climb

those hills if I have as little as a hand to hold onto (I think it's all

mental).

Chiropractic treatments help with the back pain.

It's different in other ways, too. My hands are weaker in a different

way. I can turn keys, but my grip will slip when using a knife or a

pen. I used to take 1600-2400 mg ibuprofen at the drop of a hat but now

400 mg will do and only occasionally. I prefer heat therapy and rest

because I'm afraid of damaging myself with meds.

So I do have greater quality of life now and, except for fatigue, CMT

isn't a major player in my world. Or maybe my world has conformed to it

and it's not much of a struggle. I don't know.

You are the first person whom I have 'met' with a similar outlook!

Re: better as adult than child

Lorna,

I am interested in how you are better as an adult. I am the same. Did

symptoms go away like mine did? Did you receive potassium therapy? What

were some medications taken as a child that you stopped as an adult? How

often did you fall as a child? How often do you fall now? Did you wear

AFOs or orthotics as a child and not wearing them now? Did you wear

corrective shoes as a child? Did you have muscle rigidity and spascity

as a child or teen that went away as an adult? What kind of vitamins did

you take as a child and what, if any, do you take now? As a child, how

did you walk and what distances? What about now?

You are the first person I know that has said she is better as an adult

than she was as a child and this is my story also.

~ Gretchen

http://www.cmtworld.org

http://www.neurologychannel.com/charcot/

[Guest guest]

Lorna,

Thank you so much for sharing with me. I can relate to quite alot. My

pain has always been in my feet - now it comes and goes, and after all

these years, I know what to do. I feel the same - I too have a greater

quality of life and CMT isn't a major player in my world. Yes, perhaps I

too have made my world conform to it, who knows? Your potassium intake

was also interesting. It was along time ago I had it as

megadose/therapy, but I often wonder if its effects had a much more

lasting effect on me. As for the fatigue, I don't have nearly the

fatigue overload I had as a kid or teen. I had to always sleep 10 hours

or so. As you known, I am very active, I just wake up early (animals

start playing and want out) and I have busy days. When I feel fatigue,

I just grab an hour nap after lunch.

I guess I should clarify CMT as a major player, well, I mean not

physically for me, I just work on behalf of awareness and fundraising

and manage our group here. Also in writing about current research I hope

that more people can be informed about our disease.

~ Gretchen