Life threatening/affairs/uncertainty

[Guest guest]

Hello , yes, I can see where a person with CMT and breathing

problems could be seen as " life threatening " . I surfed through some CMT

info. last night and saw where " breathing CAN be affected " . Even my

wallet card says something about this and to test the lungs before

surgery.

I was thinking about my own situation. While I am mobile and on my feet,

I am still subject to balance problems and an occasional fall. Now,

suppose (this is only hypothetical) that I trip over my garden hose

while gardening, fall and hit my head on my stone patio. 1) I could

bleed severely, 2) I could get a concussion and go into a coma. So, I

think that a situation like this could be life threatening.

Just because we have CMT does not make us immune to everything else. I

firmly believe in getting all my yearly/routine physical testing

(general internal medicine stuff), also keeping my vaccinations up to

date, eating right, some light exercise, etc. While the periphial

nervous system does not itself pick up viruses, the immune system does.

That is why I feel it is important to sleep well, eat right, and try to

get some exercise. Anti-bacterial soap is at every sink in my house. And

for me personally, since I absolutely loathe being sick, I stay out of

crowds. And I am not a " hermit " or " recluse " by any means!

As for getting " affairs in order " , this is certainly prudent, no matter

who we are. I have done this and while I like to think I will have

another 47 years on this planet, I don't know that for sure! I have

designated a Durable Power of Attorney for Health Care, a financial

Power of Attorney, written a will, made provisions and found people to

care for my pets, among other things. My sibling and friends know where

I keep my files and emergency medical information and I have had long

talks with all about my concerns and wishes. I had an attorney handle

the paperwork, but I think for the Durable Power of Attorney for Health

Care, one can find forms either on-line maybe or at the library. My

doctors also have copies of all the papers in my medical files.

With " hurry " and " worry " as my two biggest fears and stressors, I do

believe in frank talks with loved ones about CMT and healthcare issues

and what I want/or don't should I be unable to speak for myself. I

review the documents mentioned above once a year to see if I need to

make changes, update, etc.

Living with such uncertainty (of CMT) from an early age gradually taught

me to live one day at a time, to plan - but be prudent, and most of all

to enjoy the beauty in front of me. I also believe that a positive

attitude can go a long way.

Gretchen