The Charcot-Marie-Tooth (CMT) Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group

All new and active discussions & journals

those with Charcot Marie Tooth disease

educ8
  • By educ8 · New reply yesterday at 10:10 am
  • Discussion in Assistive devices and technologies · 3 replies
  • I've had the orthotic/prosthetic work done at the Prosthetic Laboratory of Rochester, MN. great friendly service ...

CMT and opening stubborn packages

educ8
  • By educ8 · New reply yesterday at 7:56 am
  • Discussion in Assistive devices and technologies · 7 replies
  • I'd like to know if I'm the only one who has issues opening sealed jars, zip lock bags, and cardboard cereal boxes We've no children to need child proof bottles yet this adult cannot open them-talk about ...

Child with CMT

MasonsMomma
  • By MasonsMomma · Posted August 30, 2010
  • Discussion in Kid's corner · 0 replies
  • My son is 2 1/2 we are still in the early stages of getting a diagnoses we have hit alot of road blocks along the way but are slowly making progress. he has to wear afos and braces on his hands when he ...

Foot surgery

Hillaryfla

those with Charcot Marie Tooth disease

educ8
  • By educ8 · New reply August 29, 2010
  • Discussion in How CMT changed my life · 6 replies
  • Blessing to you: I've had CMT disease all of my life and it's getting worse. I'm looking for those who have it too. I'm a newly retired teacher and now on disability. I taught for 28 years and am pleased ...

happiness is my goal

educ8
  • By educ8 · Posted August 28, 2010
  • Journal · 0 replies
  • I want happiness every day: 1. stay positive & laugh frequently 2. say "I love you." more 3. read a lot of books 4. enjoy a long,healthy retirement ...

CMT & scoliosis

Salubre
  • By Salubre · New reply August 27, 2010
  • Discussion in Symptoms · 4 replies
  • Hi, I'm 38 years old and was diagnosed with CMT about 20 years ago. (I had had symptoms from childhood) I also have scoliosis, which I've had surgery for (Harrington Rod) When I had the surgery (at the ...

A few more words about privacy

Brian
  • By Brian · New reply August 27, 2010
  • Journal · 76 replies
  • All of us at Inspire care a great deal about your privacy and work hard to ensure the information you trust us with is kept safe. We designed Inspire so that you have complete control over how your personal ...

Worried Moma

momax4
  • By momax4 · New reply August 26, 2010
  • Discussion in Newly diagnosed · 2 replies
  • My son has yet to be diagnoised, but doc's have leaned toward CMT. He has an awsome ortho at Scottish Rite in Atlanta. His feet are pretty bad deformed (cavous) although he is still able to walk, stress ...

CMT support groups

fishermaninafrica
  • By fishermaninafrica · New reply August 26, 2010
  • Discussion in Family and friends · 1 reply
  • I have attended a CMT support group in Northern California. Does anyone know of a support group in Orange County area in Southern California ...

Custom Shoes

dynamonk
  • By dynamonk · New reply August 26, 2010
  • Discussion in Assistive devices and technologies · 4 replies
  • My Podiatrist has recommended having custom shoes made. My feet are so wide, toes bent and arches are flat; Charcot Foot. Shoes have been very difficult for me to find I have a 6XX wide foot, even men's ...

'Shocking' CMT Symptom

cmsmyer
  • By cmsmyer · New reply August 26, 2010
  • Discussion in Symptoms · 24 replies
  • I'm a 42 year old woman, diagnosed with CMT almost 15 years ago. While I do have problems with motor skills, balance, foot deformities, stress fractures, etc., my most debilitating symptom is the shocks ...

Mobility Van

dynamonk
  • By dynamonk · New reply August 25, 2010
  • Discussion in Assistive devices and technologies · 4 replies
  • I must purchase a mobility van to transport my Jazzy 600, does anyone have experiences pro & con to share ...

Nedications

marym11
  • By marym11 · New reply August 17, 2010
  • Discussion in Medications · 8 replies
  • I walk about 10 minutes a day with the said of a walker afterbwhich my legs are tired and ache .Two extra strength Tylanol help some what.Are there any known perscription dugs that would be more effictive.Mary11 ...

Are you effected by hot and cold?

Suzsam
  • By Suzsam · New reply August 9, 2010
  • Discussion in Symptoms · 8 replies
  • Just wondering if anyone else has more problems when it is really hot or cold outside? When my hands get cold, I can no longer grasp things, or open jars. I tend to drop a lot of stuff, also. With the ...

Exercise and Physical Therapy with CMT

Abby205
  • By Abby205 · New reply August 6, 2010
  • Discussion in Exercise and therapies · 11 replies
  • How do others with CMT feel about physical therapy. I have been several times. My main problem is that the therapist know next to nothing about this disease, therefore tries exercises that are too much ...

CMT and HNF Spin-a-thon!

HNF_Intern
  • By HNF_Intern · New reply August 5, 2010
  • Discussion in How CMT changed my life · 1 reply
  • Hi Everybody, My name is Hila and I am about to finish up my 10-week internship here with the Hereditary Neuropathy Foundation. Since I started with HNF, I have met and spoken with so many amazing people ...

"BERNADETTE". a documentary about CMT

runamuckproddotcom
  • By runamuckproddotcom · New reply July 24, 2010
  • Discussion in Symptoms · 3 replies
  • Hey All - Please visit www.bernslife.com for our trailer on upcoming documentary "BERNADETTE". She "...was born with the biggest disease no one has ever heard of." Right now we are raising funds to finish ...

from a cracked pot

MsBear
  • By MsBear · New reply July 19, 2010
  • Journal · 14 replies
  • What a great insight about our diseases. I just had to share this with all you cracked pots. An elderly Chinese woman had two large pots, each hung on the ends of a pole which she carried across her neck ...

Beware before you pop a pill

Allison
  • By Allison · New reply July 17, 2010
  • Discussion in Medications · 3 replies
  • Back in 1995 I was adminstered 1 cycle of Vincristine & Adriamycin and immediately following the treatment, I had severe onset of my CMT. I was asymptomatic prior to the drug. I hope you all will share ...

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CMTNeuropathy: On Sat., 7/31 HNF will be hosting its 2nd Annual Spin for the Cure Spin-a-thon in the Hamptons. Join us! www.hnfspinathon.dojiggy.com

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About this group

The Charcot-Marie-Tooth (CMT) Support Community connects patients, families, friends and caregivers for support and inspiration. The Charcot-Marie-Tooth (CMT) Support Community is sponsored by the Hereditary Neuropathy Foundation in partnership with Inspire.