Re: Neuro/Barrows

[Guest guest]

The neurologist at Barrows heads the MDA clinic and his name is Dr Kumaraswamy

Sivakumar. His phone is 1-800-227-7691, his fax is 480-314-1003 he is accepting.

He is wonderful with Charcot, you can google him and the research center which

gives all his info, specialities and every insurance he takes as well as HMOs. I

am so sorry this took so long, any other information please email either

directly or through Gretchen.

Joyce

[Guest guest]

Jocelyn McCarthy,

I was diagnosed in my thirties, because my son toe walked, I went from my home

here to Mass General in Boston and it was because of them I was fortunate enough

to find out about CMT, I am now 64 yrs old today and pretty lucky my affliction

is so mild compared to numerous people I talk to.

Gretchen is the moderator for our group and also has CMT. She is well

versed and up on medical information about CMT much quicker than most of us and

has so much info archived.

But I would call Barrows and ask to see Dr. S. and please let me know how your

dad makes out., when you Google him you will note one of his specialties is CMT.

Do you also live in the PHNX area?

Joyce

[Guest guest]

Joycelyn,

Hi there, I went to Boston because in the 70's here in Phoenix it still was a

small town, and I am a bio-chemist and knew doctors at Mass General, the truth

is trust

Anyway the knew very little during the dark ages. Now about insurance maybe MDA

Clinic will pick up some of the charges, screening etc. I will be happy to chat

with your dad also, it sounds like we are of the age bracket......Also you need

to be tested as well with Athena Labs, this disease gets stronger not weaker

with each generation, you would think the opposite.

I went to the clinic at first but have read so much about CMT and talk with the

group that I found it not to my advantage to go and also I saw children and some

adults so afflicted that I realized how lucky I truly was. It is difficult for

your mom to understand our pain when we look so good on the outside, I also take

pain medication daily which I have been on for years and make sure not to

increase it even when I need to.

I think your dad will notice the changes in the weather as I know how badly my

hands hurt when a storm is coming. What type of insurance does your dad have?

Out of work is not good for his outlook on life, I hope someone lifts up his

spirit daily. I live in N. sdale, and go to my son-in laws, (X) meaning

divorced) bakery in Tempe 4 days a week to keep busy and play at work, I am sure

the group will help him as they are full of compassion and so want to help all.

You sound like your plate is full but a wonderful daughter, let me know if I can

share anymore information. Oh we are not retail only wholesale for the hotels. I

was diagnosed in my 30's and I just turned 65 Saturday, both my sons have the

gene but one is much worse than the other. my grandchildren are good so far, my

daughter is truly good so we are lucky....have I missed anything.

Joyce Everett

Robins Bakery

1135 W. Geneva Drive

Tempe, AZ 85282

480-921-4161

----- Original Message -----

From: Jocelyn McCarthy

Joyce,

Thank you so much for your email. I really appreciate it. I'm very glad to hear

that your CMT is fairly mild compared to many others.. That is a relief,

although I am sure it is still very difficult and challenging. Why did you go

all the way to Boston to get diagnosed? I'm just glad they were able to figure

out what it was. My husband is originally from Boston (and our dog's name is

Boston : )!

I gave my dad your information and told him about Gretchen as well. That makes

sense to know that Gretchen is the mediator of the group since I've seen her

name many times! I noticed that she has a ton of knowledge on applying for

disability? I was looking through all of it for my dad - he is currently not

working and I'm not sure if it's an option for him. It seems like a lot of work

and always gets denied, but his CMT seems to be getting worse. He was in

construction for over 30 years and because of the housing market, his company

closed its doors in August. He hasn't been working and is having a difficult

time finding anything - both due the economy and his progressing CMT. So I'm not

sure what will happen.

I signed him up on the site yesterday and told him what a great resource

it is. This is all still fairly new to us, so I am just trying to gain as much

knowledge as I can for him. I think he is going to call to see if he can get an

appointment with Dr. S but my mom does not think that her insurance will approve

another visit with an out of network doctor. So I'm not sure if he'll be able to

see him.

He also mentioned to me that he got a flyer from the MDA about a support group

that is meeting this week? I think he is going to go to it, so hopefully he is

able to meet others and learn more about all of this. Have you ever gone to one

of them?

Yes, I live in Arizona too. I'm in Tempe and my parents are in Surprise! I have

been battling a very rare type of cancer for 5 years (since I was 24yrs old) and

I found a site just like this one for CMT for my cancer, and it has been an

incredible resource for me. I've met some amazing people through the site. I

have had such success with the group that I when I found the group for CMT, I

made a post about my dad and just hoped that I would get even half the response

that I got from my support group. So please know how much I appreciate your

responding and taking the time to email me.

Joyce, thank you again for being so helpful. It means more than you know!

Please keep in touch.

PS. Go Cardinals : )

Jocelyn McCarthy