Re: What do you consider good healthcare?

[Guest guest]

I think having a Dr. that knows what CMT really is, by learning from those who

have it and deal with it daily not the clincal research that does not include

everyday living with the disease. It would also be nice if they understood that

due to the problems with CMT we also have joint issues from the falls we take or

the psychological problems like not " fitting " into alot of situations. The

tenecals that reach out from the CMT reach into alot of directions.

I have also experience that alot of HMO Dr.s just don't have (or take) the time

to know what it is or try to understand. When I tried to explain some things to

a Dr. once he interruped me and said " I need you to know I have 4 other

patients waiting for me. "

Like I could explain CMT and my issues to someone that has no clue about it in

the 2 1/2 minutes he was willling to give me. They are basically interested in

treating an individual symptom rather than the whole person. It seems they want

to know what are you there for today and treat it and get you out of the office

rather than see the whole thing and make a healthcare plan to treat the whole

person.

When I try to convey the fact that I deal with alot of pain they seem to think I

am just looking for pain pills. Again, no time taken to understand.

I don't understand why, since CMT is such a common neuropathy that there are not

more support groups in and outside of the healthcare organizations. I feel that

there is more caring, answers and help in this group than I have ever

experienced in a medical/healthcare situation. Since there is not " cure " I

think support is very important in dealing with the everyday frustrations.

Sorry this is so long but you asked!!!!

Cyndi

[Guest guest]

Dr. Herrmann at the Univeisty of Rochester Neuromusular Disease Center in

Rochester NY he and his team are GREAT!!

Mark

[Guest guest]

A very good and current topic. Healthcare is such an important

issue, not just for those of us with CMT, but for everyone.

I consider good healthcare to be:

Competent, knowledgeable, caring doctors/nurses, etc., who listen,

take notes, observe, ask me questions, and make follow-up calls to

see how I am doing. This shows they respect me. Yes, my doctors are

more than willing to read anything about CMT I give them and say how

appreciative they are. My doctors now (and for the last 15 years or

so) are in private practice, as opposed to academic/university

centers. My experience with docs in private practice has been and

continues to be wonderful. I can't say the same for academic

medicine.

My last appointment in Oct. 07, I called one week and got an

appointment for 9 days later. I waited 5 minutes in the waiting room

before, that's all. Not enough time to catch up on the magazines! lol

Of course low cost insurance is ideal, my current insurance with

Blue Cross/Shield has an 80/20 plan. It works for me. Yes, I would

hope that healthcare could be no cost for those who cannot afford

it, however, I question what the quality would be like.

My Internal Med. doc understands good nutritional needs and made

some recommendations for me - low fat, calorie cutting stuff. I

agreed to make some changes. Long story short, I lost weight, got

into exercise regularly and feel better.

My docs are ALL big on Physical Therapy when it's needed. But they

aren't too keen on anything that isn't " evidence based " medicine, so

that's out, except they do encourage massage.

Yes, I feel CMT organizations should definitely provide healthcare

plans for people with CMT. It seems fundraising is a priority, and

should be, research is always needed, but I feel those organizations

need to put individual " healthcare " into their package for members.

Bev

[Guest guest]

Mark, Sure, now you tell me! I just moved from Buffalo, NY. Lived there all my

life pretty much. Now I live in NC. Wonder if I could make an appt w/ him for

when I come up to visit in July? Do you have his TN? Thanks,

Dawn