replies to bad news that scares me

[Guest guest]

Thanks , for the crabtree link, I will be looking at it

right after this post. I too have spoke with several amputees who

have said it is the best thing they've done for themselves and only

wish they'd made the decision sooner. I am fortunate that in my job I work with

people everyday who have disabilities, most of them leading successful, happy

lives regardless of what there bodies are able to do or not do. Regardless, it

is a daunting decision and one that I won't make without considerable research

and consideration.

Gretchen - Maybe I'm being overly sensitive here, but I seem to

detect a note of disdain or disbelief regarding my 'bad news'. I

find it discouraging that as the moderator of this group you have

made me feel belittled and somewhat offended. I by no means would

ever think that having an amputation would take away my CMT. I have

had this disease long enough and have done enough research to

certainly understand that I am affected in more areas than just one

bad ankle. Obviously, you don't remember that I have been a member

of this group for several years and have been dealing with this ankle for almost

five years due to a really bad fall that tore up all the ligaments and tendons

so severely that they were not able to heal or be surgically repaired. After

four fusions to just try to make my quality of life a little better, I have been

left with an ankle that stays swollen the size of a grapefruit, is always

feverish, and is very painful even though the lack of sensation that I have in

my lower extremities is almost complete. This last surgery discovered a mass in

the ankle that thankfully was not malignant. And yes, I completely understand

that there is no turning back from something as serious as an amputation. But,

there are other things to consider when CMT is involved with an amputation.

Things such as the ability to adapt to a prothesis not only because of mobility

issues, but such things as pressure sores, etc. Since you have been so

fortunate with your progression, you probably haven't thought to consider those

issues as much as members who do use AFOs or have other significant

manifestations of this disease.

Honestly, I would seriously consider leaving this group if it weren't for the

others here who have real life experiences to share that have been helpful to me

and who I hope I have been able to help at times. I also appreciate all the

post regarding research and CMT news that you put up. But, I have to tell you,

sometimes I have found your attitude to be offensive and I have wondered if that

attitude comes from not knowing first hand about some of the issues. I can

understand how that might be. Prior to this accident, my CMT was only a minor

inconvenience that was manageable through my good

habits, such as you seem to be able to do. Unfortunately, not

everyone has the same degree of progression or incident and it would

be encouraging to not feel judged by the founder and moderator of a

site that is otherwise a great help to the CMT community.