HNF: Tell us about yourself?
Jim: My name is Jim Matthews and I’m a Licensed Clinical Social Worker in Indiana. I’m 59 years old and will be celebrating my 30th anniversary with my wife Cathy this year. We have two adult children. One lives with us and the other lives in a town about an hour away.
HNF: Why are you participating in the Patient-Centered Charcot-Marie-Tooth Summit?
Jim: The first answer is about coincidence. My daughter and I will be visiting New York the week of the Summit, and neither of us have been to NYC. When I learned the Summit is being held the day after we arrive in New York, I knew I wanted to go.
I participate in a number of CMT-related sites, where I’ve meet many wonderful people. Some of them will be attending the Summit and I’m looking forward to meeting them.
I also hope to learn more about CMT, and what researchers say about future treatments and the genetic transmission of CMT.
HNF: What do you hope to take-away from the Summit?
Jim: I hope to make new friends, strengthen existing friendships in the CMT community, and gain more knowledge about CMT causes and possible treatments.
HNF: Are you active in the CMT Community?
Jim: I participate frequently on CMT Facebook forums. One, “Don’t Throw in the Trowel,” is a page for disabled gardeners. I also participate in a CMT support group in Indianapolis. Recently, I lead a discussion on chronic illness and grief, depression, and anxiety.
HNF: Are you planning to share news of the Summit with others and your health care professionals?
Jim: Yes, I will share the information with the CMT support groups I’m a part of and with my healthcare team.
HNF: Why do you think others with CMT, or their caregivers, should participate in this Summit?
Jim: I think any time people with shared circumstances can get together to commiserate, laugh, and cry about their situation, it’s good for all involved. Plus, there promises to be a lot of great information presented at the Summit.
HNF: You and your daughter have never been to NYC. What are your plans during your first visit to the Big Apple?
Jim: We plan to visit the Tenement Museum, Ellis Island, tour a part of New York with Big Apple Greeters, visit Central Park, see a Broadway/off-Broadway show, and eat at a real New York City deli! I’m open to any other ideas to add to our list.
Thank you for sharing your story with us, Jim! All of us at HNF are looking forward to meeting you at the Summit and helping you make your trip to NYC a most memorable one.
For information or to register for the Patient-Centered Charcot-Marie-Tooth Summit
I am a 67 year old male with CMT. My main challenge is standing still in one place for over a minute and loss of my calf muscles, which effects my balance.
This has been going on for the past 8-10 years and I find it is getting worse. How can I slow it down? I wear AFO’s and I am an active biker.
How do I manager this better?