Questions to ponder

How has the challenge of CMT affected your personality?

Who would you be without CMT?

Has CMT held you back or pushed you forward?

Melinda, I do think of that question as I reflect on what it was like to live without CMT prior to the onset. I wonder who I would be today, would I be happier, more balanced, a better mother or wife...

I think at my core I'm the same, compassionate, hard working, dedicated, aggressive and overall happy. The struggles and heartache do take its toll some days, but each experience does make me work harder towards a goal and that's to help people with CMT and find treatments and a cure to improve those lives. Without CMT I would not have met some of the most incredible people that I love dearly and that have become some of my best friends. I would not have shared a special bond with old friends that join the mission and have put their heart and soul into helping us. It's a bond that is special I believe on both ends me as the receiver and the friend as the giver that has participated in the successes of the Hereditary Neuropathy Foundation. Without all these special people my life would not be as extraordinary as it is and I feel blessed. As I ponder, I wouldn't change the past, but I do prayer and hope for a better future for all of us affected by CMT.

Allison M. www.hnf-cure.org

Hi Melinda,

I don't know if having CMT changed my personality but it made my extremely determined to tackle any problems head on and everything I did I had to do to the absolute best of my ability, in fact, better than anyone else just to compensate for my disabilities.

It did knock my cofidence and made me very conscious around so called "normal people", because I was different.

I think I would still be the same person I am today but I would have taken on a few of the more intricate tasks I shied away from during my working life as a heating engineer.

Yes, it did hold me back a bit, again being conscious of the way I walked and had to do things to compensate for the loss of muscle and dexterity in my hands.

Norman Hume.

Melinda,

Because it has been 22 years since I was diagnosed, I have a long-term view, and while CMT has changed my personality, I would say it's been for the better, because I've learned to face problems head-on, and to push myself to go as far as I can go. Since I was diagnosed with CMT, I've met and married my wife, raised two kids, one with CMT and another without, and lived in and traveled to some very exotic countries. I'm a minister and CMT has opened doors for me where healthier people would have had more difficulty. In some ways I've seen God bless me through CMT!

Without CMT, I would be much more physically active and adventurous, but I am still adventurous; it just limits what I can do. I do miss the things I used to be able to do, like basketball, running, nature walks and the like.

I would say that CMT has held me back some, and pushed me forward some too. I view it as a challenge that can be overcome, and have been able to adapt to its demands. The hardest times I've had are when I've had to give up things due to the progression. I rely on my faith in God's plan for my life and His love for me in those times.

I hope this helps you!

Kirk Kellogg

Hi Norman,Allison and Kirk, I think CMT has changed me tremendously especially after meeting the wonderful people in the group I started. Becoming an advocate and working hard to raise awareness of CMT, along with fundraising in hopes to find a treatment to slow the progression keeps me glued to my computer. When I was diagnosed my doctor said CMT won't shorten your life, CMT will just slow you down a bit. I'm working hard to fight this and keep on doing what I enjoy for as long as I can.

Without CMT,I would be happier, less worried about the future. Without CMT, I would still be working as a pharmacist instead of as a support & sction group facilitator. But without CMT I never would have met my new friends, who understand how somw days can be very difficult.
Norman Hume said:

Hi Melinda,

I don't know if having CMT changed my personality but it made my extremely determined to tackle any problems head on and everything I did I had to do to the absolute best of my ability, in fact, better than anyone else just to compensate for my disabilities.

It did knock my cofidence and made me very conscious around so called "normal people", because I was different.

I think I would still be the same person I am today but I would have taken on a few of the more intricate tasks I shied away from during my working life as a heating engineer.

Yes, it did hold me back a bit, again being conscious of the way I walked and had to do things to compensate for the loss of muscle and dexterity in my hands.

Norman Hume.

Thank you to everyone who responded. My apologies for not replying sooner. After months of working nonstop on an Art de Cure fundraiser for CMT, we have recently lost a wonderful friend, fellow CMTer, Christine Hook, who worked with me as gallery coordinator and sold a lot of her art work raising funds for CMT.

From Kirk : "I view it as a challenge that can be overcome, and have been able to adapt to its demands. The hardest times I've had are when I've had to give up things due to the progression. I rely on my faith in God's plan for my life and His love for me in those times." You have such a wonderful positive attitude and faith. Something I need to work on. To all who answered thanks so much for sharing.