Living with Charcot-Marie-Tooth Disease. How to live with Charcot-Marie-Tooth Disease?

Living with Charcot-Marie-Tooth Disease: how patients cope day to day and stay positive - real experiences and practical tips.

The best way I can say to live with this disease is ask for help, take your time, and be very patient with your loved ones. Many times due to the fact that this disease is technically invisible most people do not understand that you have limitations.

Posted May 21, 2018 by Joe 4050

Very god! With treatament.

Posted May 22, 2018 by Gabriel 1700

Taken it day by day. You will have good days and bad days. On your bad days don't give up and remember tomorrow will be different. Live everyday to your fullest. Always Smile Big!

Posted May 22, 2018 by Dawn 4050

Stay positive. Don’t dwell on what you can’t do, but what you can. For most people, CMT is something that can be managed and coped with successfully. Get a network of support to help - family, friends, knowledgeable medical professionals, and don’t forget to contact the national support charity for your country. They will be invaluable

Posted May 23, 2018 by Karencmt 2620

This is a very hard question because everybody was CMT is different. To be happy when you’re by yourself and cannot have any help, I would say have a lot of alternatives so you don’t have to do everything yourself. This might include buying vegetables and fruit already cut, a shoe horn to get your shoes on shoelaces that stay tied for you, and maybe a basket to help carry items around and not have to make many trips back and forth. If you have to live by yourself just make sure that someone can check in sometimes to make sure you’re OK and you haven’t fallen. Along with falling I think someone with CMT should not have a house where there is a lot of stairs and steps. And if there is they need to be carpeted and definitely have a railing on both sides of the wall.

Posted May 23, 2018 by SavShelton 2550

Look on the Internet for the experiences of others.
Be sensible and practical, and consider the condition will progress (deteriorate).
Be patient and don't get frustrated.

Posted May 29, 2018 by Daniel 4200

My motto is Stay positive. Do what you can do and don’t complain. There’s a lot worse diseases

Posted Dec 8, 2019 by Bob 1400

Find balance in your life between what you "have" to do and what you "want" to do. Sometimes it becomes necessary to let go of the expectation of "normal" and accept the fact that you have or will have limits. Learn to ask for help when needed, let go of the guilt because you "can't do it all". Find hobbies that make you happy and make them a priority. Find a support group - it helps to share experiences with people struggling with similar things. And most of all listen to your body - it knows best.

Posted Feb 7, 2020 by Roberta 1900

Follow pain management regiment, daily exercise, nutritious meals, getting sleep, and follow the body’s signal-if a break is needed or not up to the regular routine, take a day off.

Posted Feb 8, 2020 by Rhonda 1300

COLLABORATIVE RELATIONSHIP WITH MEDICAL PROVIDERS, SUPPORT FROM FAMILY AND FRIENDS, ESPECIALLY THOSE WITH CMT. DUE TO RARITY OF THE DISORDER (1 IN 2500) IN PERSON SUPPORT GROUPS ARE NOT AS COMMON, EXCEPT IN LARGER CITIES. ONLINE SUPPORT GROUPS ARE PLENTIFUL. ENGAGE IN PHYSICAL, EMOTIONAL, INTELLECTUAL AND SPIRITUAL COPING MECHANISMS. FOCUS ON ACCEPTANCE- NOT THE SAME AS RESIGNATION.

Posted Feb 9, 2020 by Jim 3000

I hate to be negative but it is a difficult and challenging disease. It is said that a person with CMT uses 3 times the energy of a normal person to do any task. I believe that. There are many days where I don’t do much, take naps and don’t socialize as I just don’t have the energy to do anything.
Do what you can when you can would be my best advice as well as some days are ok.

Posted Feb 13, 2020 by Linda 1550

Translated from spanish Improve translation

It is possible to lead a normal life if we adapt to certain conditions of the disease, and if we understand that it is possible to achieve limits with a little more effort

Posted Sep 4, 2017 by Lorena 2000