Balance and Can't Get Support (Literally)

[Guest guest]

Thanks much Gretchen I appreciate the links.  I will try MDA, my only concern is

they are affiliated with the hospitals who would not work with me. 

I have a few straight canes I use for balance which I paid out of pocket but I

still fall with them and wonder if I am using the right device.  The Liberty

Cane looks very interesting I am looking into that...

Thanks again

Andy

[Guest guest]

Andy

Your situation sounds very unusual and quite frustrating. Have you tried

calling up the local MDA for help, guidance, etc? I am sure they could point

you in the right direction. I don't understand why each of your doctors keeps

passing you along. Something is just not right there. Why is there a liability

factor involved here? Is there something else you have not mentioned?

Mark

[Guest guest]

Andy

Good God, you have been through the mill. I can relate, because it took over

2-1/2 years before I was even diagnosed with CMT, and then a very long time

before I was sent to a podiatrist for treatment. It was my first podiatrist who

prescribed a cane and an AFO for

me. The AFO was completely wrong for me, caused blisters, etc., and did nothing

to help with leg drop or support.

Long story short, after complaining loudly to my Primary Care

Physician about inadequate treatment from my Podiatrist, he referred me to

another one who has changed my life dramatically. Even though I had to undergo

two triple arthrodesis procedures this year, I am able to walk almost normally

with the use of special orthotics and have no need for a cane or other assistive

device.

So maybe you should ask your Primary Care Physician to schedule an appointment

for you with a knowledgeable Podiatrist. It might make a huge difference in

your life.

Also, if you are on the West Coast, attending the Conference on the 11/8/08

would offer numerous opportunities to talk with cutting edge CMT doctors,

specialists, etc.

I feel your pain. Good luck, and keep me posted

Mark

[Guest guest]

Andy,

Doctors don't know what to do with us because we need

multi-disciplinary help.

It doesn't help that there are no " treatments, " for CMT, only

amelioration of symptoms, which many doctors are not interested in doing.

A CMT'r needs to realize he/she is the person in contol of their

healthcare.

Wew very often know what is wrong and what we need. We have to find

profesionals who will at least walk hand-in-hand with is.

We have to never take 'no' for an answer, as we get the healthcare we

demand.

I have had more doctors who were helpful than hurtful.

[Guest guest]

Thank you all for your suggestions and generally understanding my struggles.  I

called the MDA today and she spoke to me for a half an hour and she was great to

talk too.  She right away wants to set me up with one of their doctors who has

experience with CMT and she wants me to see one of their PT and OPT's which are

all in the same network and actually communicate with each other.  She would

over see the process and case manage me, thats what I have needed all along. 

I also think getting the Liberty cane seems more fitted and I will work on

getting one.

Thanks again everyone

Andy

[Guest guest]

Andy

I'm thrilled for you. Good luck

Mark

[Guest guest]

Andy,

That is great; glad to hear you will finally have an oversight of care.

As far as liberty cane, I think you will be pleased. Owner/creator is

Coakley. He designed it out of necessity and has a disease covered under the

umbrella of Muscular Dystrophy, so he really put himself into the cane. Let him

know you spoke with me about cane.

Jackie Sachs