Re: Sv: Another new Member

[Guest guest]

Hi,

My name is Joe and I am also a new member. I have apparently had CMT for

at least twenty years but was never diagnosed until recently. I am really

disappointed in the level of awareness of the medical community. I have been

seen by numerous neurologists at very prominent medical institutions but they

never identified CMT as a possibility. Instead, they suggested major spinal

surgery to remove an intra spinal lipoma that they told me was causing my

problems. For lack of knowing any better, I agreed and had that done in 95. I

probably still wouldn't be aware of my CMT if a technician in the orthotics

department had not noted the telltale physical features of my legs and asked

me how long I had had CMT. Of course, my response was CM what? It was only

after I began studying CMT on my own that I was able to go to my neurologist

with my own diagnosis, tell him which tests to perform and then pay him for

telling me what I already knew. Is this what they mean by twenty-first

century medicine?

At any rate, I now need to think about the future. I have always been

employed in a very active job (service rig operator on an oil well servicing

rig) but realize that I need to transition into something else. Over the last

ten years, work has become nearly impossible and now is impossible due to a

chronic ulcer on my foot. I would appreciate any advice that anyone may have

on employment problems that I should be aware of. I don't want to spend time

and money to retrain and then find that I can't do that job either. I am

realizing that I cannot depend on professionals for advice, I need people who

know what they are talking about! Thanks.

Joe

JLang9539@...

[Guest guest]

Hi Joe and the Group,

You bring up a worthwhile consideration as to employment, career, etc. I

have HNPP with all of the deformities and symptoms associated with CMT-1A.

It was 59 years before a Dx was achieved. The first symptoms arose in my

fourth year so it has been a very long period of adjustment and pure luck to

have fitted in a career, family, and satisfactory non-working life.

So, what do I think are important considerations ? First of all, don't

depend on your physical performance for a living. It's going to deteriorate

to some greator or lesser degree AND YOU CAN NOT PREDICT HOW, WHEN, OR TO

WHAT DEGREE ! You also will find out that one can not do one thing for most

of the work day. As an aerospace development engineer, I did a great deal of

shop contact and lab test program support. Typically, I alternated from

sitting at a desk and walking to some other place all day long - just right

for CMT. Longterm standing is difficult (more than 10-15 minutes at a clip).

Avoid repetative exposure to neuro-toxic materials and gasses. I include

second hand smoke and alcohol in these items. Practice social skills to

relate to other people and their " normal " activity standards. It makes life

easier to adjust to your pace and capability as it occurs. I think the jury

is still out on employer/insurance considerations. My pre-employment

physical netted an agreement not to climb ladders over three feet high in

one job at the risk of losing the health insurance coverage. Most areas are

now sensitive to liability torts for us if they know about it. It almost

goes without saying that one should avoid responsibilities for operating

equipment requiring physical skill, coordination, or timing as you will have

problems. I include typing in this category of endeavour. The main reason is

that from a liability standpoint , you'd never be able to fend off a

aggressive lawyer with your CMT background and would be found at fault

knowing of it.

So, what's to do ? Well, make a checklist of the things mentioned here and

look at prospective employments rated against the list. That leaves out many

items like short order cook or basketball star, but you'll find niches in

most organizations that fit the criteria. In the end it boils down to what

you're good at and what you like to do. It's a funny thing that this is the

same as for a non-CMT person, except for a few special considerations,

you're all set to go ! - EdM

-----Original Message-----

From: Jlang9539@... <Jlang9539@...>

egroups <egroups>

Date: Tuesday, January 02, 2001 7:27 AM

Subject: Re: Sv: [] Another new Member

>Hi,

> My name is Joe and I am also a new member. I have apparently had CMT

for

>at least twenty years but was never diagnosed until recently. I am really

>disappointed in the level of awareness of the medical community. I have

been

>seen by numerous neurologists at very prominent medical institutions but

they

>never identified CMT as a possibility. Instead, they suggested major spinal

>surgery to remove an intra spinal lipoma that they told me was causing my

>problems. For lack of knowing any better, I agreed and had that done in 95.

I

>probably still wouldn't be aware of my CMT if a technician in the orthotics

>department had not noted the telltale physical features of my legs and

asked

>me how long I had had CMT. Of course, my response was CM what? It was only

>after I began studying CMT on my own that I was able to go to my

neurologist

>with my own diagnosis, tell him which tests to perform and then pay him for

>telling me what I already knew. Is this what they mean by twenty-first

>century medicine?

> At any rate, I now need to think about the future. I have always been

>employed in a very active job (service rig operator on an oil well

servicing

>rig) but realize that I need to transition into something else. Over the

last

>ten years, work has become nearly impossible and now is impossible due to a

>chronic ulcer on my foot. I would appreciate any advice that anyone may

have

>on employment problems that I should be aware of. I don't want to spend

time

>and money to retrain and then find that I can't do that job either. I am

>realizing that I cannot depend on professionals for advice, I need people

who

>know what they are talking about! Thanks.

>Joe

>JLang9539@...

>

>