Re: Life threatening/affairs/uncertainty

[Guest guest]

In a message dated 2/3/00 12:03:03 PM Pacific Standard Time, liliwigg@...

writes:

<< 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.

>>

OR you could get eaten up by a big dog cause you couldn't get away. My

personal fear is falling near a car while it is moving and getting crushed

under the wheels. I have tried slipping on greese a spoon and an orange peel

in the kitchen. They don't kill you they just beat you up a bit. Sorta

make's you feel like you played bumper cars and you didn't have a car. LOL

[Guest guest]

Gretchen -- Not to be trite or to minimize the seriousness of differing

types of CMT, but I've often put CMT in perspective for myself, saying it is

not life-threatening to me unless I trip and fall in front of a bus. I trip

and fall a fair amount and this could be a very real possibility.

I really appreciate the philosophy you shared about taking care of ourselves

and thinking ahead. I'm a nursing home administrator and I can't begin to

tell you how many residents I've admitted whose family didn't have a clue to

what their spouse, or mom or dad would want as to life sustaining care.

Completing an Advance Directive is a tremendous help in talking with those

of your family, friends and medical team about what you want if you should

no longer be able to talk for yourself. I've completed one, as well as my

parents who are in their 80s.

Thanks for getting the message out.

Life threatening/affairs/uncertainty

>

>

>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

>

>---------------------------

[Guest guest]

Gretchen ,

Could you tell me where you were finding the info on breathing problems and

CMT??

Becca