fight it /let docs take over/self-management

[Guest guest]

Ed,

Diagnosed as a kid, I've managed CMT for a lifetime. My parents fought

for me and also let docs take over. In that " era " that was good.

However, I do NEITHER now; nor have I 'given up' either.

" Fighting " is not productive for me; neither is letting docs take over

(lol, most are half my age)

Self-management is where I'm at and have been for quite some time.

This doesn't mean I negate what Western or Eastern Medicine has to

offer, or rather interject. But this DOES mean I stick to a vital

exercise program, I am careful about diet and nutrition, I make sure I

sleep well and as needed, I keep stress to a minimum, I 'educate' my

Internist when needed (he is also 'open' to my

educational 'opportunities), I also check in with my Internist 2X a

year, my orthotist 1X a year, or as needed.

I have learned there is much I can do to help myself manage CMT in a

positive direction.

~ Gretchen

[Guest guest]

Gretchen,

You're lucky, my father and I didn't know about CMT until 1968. He was in his

40's I was 18. We only found out because he was having foot problems and checked

into a VA hospital. Back then they had to profile the case and there were no

types, only CMT. All the prior treatment that we had recieved was piecemeal and

we are extremely lucky that we didn't end up far more disabled than we did.

You never truly give up that's defeatist and I've found that to remain as able

as one can, you really have to fight it every day. Management by nature is

conflict. On the one hand dumping your case accidentally into the hands of the

wrong doctor can really mess you up, on the other if you're in excruciating pain

what are you gonna do. A lot of it depends on the severity of the case. Doctors

told my parents that I would never walk. A chiropodist told them otherwise,

obviously listening to the medical community at the time would have left me

pretty screwed up, taking it to what at the time was a non medical practitioner

saved the day. About twenty years ago a med student friend told me the best

course for my CMT was to stay away from foot surgery until there was no other

alternative, stay away from drugs unless the any pain became unbearable, keep as

active as possible, do what I could to keep generally healthy the CMT is going

to progress as it will, and that doctors offering a cure were simply looking for

Beemer payments. We tend to place doctors on a pedestal, but in the end it is a

business, more so now since the MBAs have taken over the medical industry.

Another part of it is guys are wired differently than gals. Mothers tend to

mother, if probably hurts them more than the child to see a child suffering.

Toughing their way through things is something guys do, to prevent that could

effect one's self image. Eventually the realization arrives that " yeah I'm being

dumb, but I had to know. " This attitude at times may cause physical

deterioration and parenting skills may be called for. Unfortunately this

conundrum is still at the stage where all we can do is act and to a large hope

we've acted wisely.

When someone offers up a reproducible double study showing overwhelming concrete

recovery of function in peripheral neuropathy patients my attitude will change.

I'm so happy that I've found you Gretchen.

Ed