26 Responses to Journey Man visits the Today Show

  1. Pat May 21, 2014 at 2:39 pm #

    I can’t say that I fully understand how you feel because I suffer from another illness. I was diagnosed in 1998 with hep c from a transfusion in 1978. One of the first doctors I saw asked me what kind of drugs I used. I couldn’t believe my ears. Because I don’t look Ill and people don’t understand the illness they think it’s all in my head. People understand heart disease and cancer but not other illnesses. I pray that they find a cure for people like us. God Bless you.

    • Richard M. Cohen May 21, 2014 at 8:11 pm #

      Pat-

      That is a new one. We fight together.

      Peace,
      R.

  2. Sheila Schneider May 21, 2014 at 3:55 pm #

    I absolutely LOVED your interview this morning on the Today Show. I don’t have MS but do have RP (a genetic eye disease) and am legally blind. I use a guide dog to get around. I am a recent MFA graduate of The Industrial Design program at the University of Illinois at Urbana-Champaign and am believed to be the first legally blind individual to do so. I have encountered situations similar to the one you described in the interview about how people speak to your wife rather than address you directly. I believe that a lot of this stems from both ignorance and fear. Many people have no clue how to interact with people with disabilities and others are just afraid to do so. I hope that with blogs such as yours, we can promote more accomplishments of people with disabilities, their abilities, strengths, and yes, weaknesses too. Most of all I hope that we can make others understand that underneath it all we are all human beings dealing with our own personal struggles and achievements and we are really no different inside than anyone else. Thank you!

    • Richard M. Cohen May 21, 2014 at 8:16 pm #

      Sheila-

      Ignorance and fear. I think that sums it up. And people do not care to learn. Just never take it personally. Just live and ignore.

      My best,
      R.

  3. Linda Lazarus May 21, 2014 at 4:29 pm #

    Good job today on “Today”. I always thought I was too ..er..broad to be invisible. But people seem to see beyond me easily. I appreciated your taking note of this extra and sad burden.

    • Richard M. Cohen May 21, 2014 at 8:17 pm #

      It is real.

      Best,
      R.

  4. Joan L May 21, 2014 at 6:19 pm #

    Well your interview inspired me. I just saw a post for a local children’s summer school asking for people to speak @45 minutes with the kids about whatever. May be a good place to meet a person in a wheelchair who is “disabled” but warm and funny, and open to answering all their questions. A way to educate a small section of my town, but a start for better understanding! Thanks and WELL wishes.

    • Richard M. Cohen May 21, 2014 at 8:18 pm #

      Joan-

      Thanks. And do it.

      R.

  5. Amy Corcoran-Hunt May 21, 2014 at 6:30 pm #

    Great segment. You represent us well.

    • Richard M. Cohen May 21, 2014 at 8:19 pm #

      Blessings.

      R.

  6. MB May 21, 2014 at 9:49 pm #

    Loved the interview and the haircut. 🙂

    • Richard M. Cohen May 22, 2014 at 7:34 am #

      MB-

      Our youngest emailed from college, writing that Matt has more hair than me. Don’t you love it when kids are supportive?

      Best,
      R.

  7. Yvonne May 21, 2014 at 10:39 pm #

    You don’t even know how much your honesty in documenting your feelings means to so many without the platform to express our frustrations. Today, your words made all the difference in getting me through. Your observations on how others react only missed on point for me. People who have the best intentions but only make me more aware of my new limitations. After 25 of relapsing remitting MS, progressive secondary for the last 5 yrs has made me face walking challenges and memory that I thought I had escaped. MS is a crap shoot. People think if you look good you feel good. They do not understand that driving walking and remembering everyone’s name exhaust me.

    • Richard M. Cohen May 22, 2014 at 7:51 am #

      Yvonne-

      I hear you. Those are shard frustrations. And I do not think others are malicious. They might be indifferent and slightly ignorant. We never are going to beat that combo.

      Best,
      R.

  8. Carol May 21, 2014 at 11:48 pm #

    Excellent job! You were very articulate, and your sharp intellect and sincerity showed. Thanks for doing things like this to increase awareness. Every little bit makes a big difference.

    • Richard M. Cohen May 22, 2014 at 7:52 am #

      Carol-

      Thanks. You are generous.

      Best,
      R.

  9. Geof May 22, 2014 at 8:36 am #

    That was a very nice interview. You still convey thoughts and feelings to which most find it easy to relate. Your book Blindsided was the second book I read about MS, and it is to this day my favorite for describing the mental and emotional side of living with a diagnosis of MS. Reading it made it easy for me to decide to be open with others about my MS in a hope some might gain a better picture of what the disease really can do to us and how much we can still do in spite of it.

    I was thinking about you today when I came across this story of stem cells initiating reyelination in mice. It is certainly a study with possible positive implications for stem cells usage in human patients. http://multiple-sclerosis-research.blogspot.com/2014/05/remyelination-by-stem-cells.html

    • Richard M. Cohen May 23, 2014 at 9:55 am #

      Thanks.

      Best,
      R.

  10. Tom May 22, 2014 at 4:49 pm #

    Richard, a friend sent me a link to the interview. Like you, I am 66, and I have been diagnosed for 31 years. I have used a scooter for the last 16. Can you share with us what kind of trial you are in?

    • Richard M. Cohen May 23, 2014 at 1:25 pm #

      20 participants, stem cells infused directly into spine.

      R..

  11. David May 23, 2014 at 12:27 pm #

    I watched your interview on the Today showed and liked it very much.Its funny but now that I have met you in person and read your books I feel like we are friends. Because I have primary progressive I always have the future results of your trial in mind.
    I so look forward to a new interview you will have with Matt when the positive effects of your trial pays off.
    I am confident you will have success.Why not,your success will be our success.I hope your success might be a tipping point for all who follow you here!

    • Richard M. Cohen May 23, 2014 at 1:28 pm #

      David-

      We can hope together. Trying to keep expectations in check.

      Best,
      R.

  12. JerrryD May 23, 2014 at 1:17 pm #

    Your interview with Matt was excellent. Good job. I wouldn’t have expected any less. I am dx’d primary progressive. I have high hopes for your pioneering stem cell treatment.
    All my best wishes and prayers

    • Richard M. Cohen May 23, 2014 at 1:30 pm #

      J-

      Thanks-

      I try to kep the faith.

      Best,
      R.

  13. Christine May 24, 2014 at 11:14 am #

    Your candid and heartfelt interview with Matt was inspirational …I am a 57 year old woman just diagnosed with MS last July … Of course now that there is a name to all my complaints…it’s easy to see (hindsight is always 20-20) that I have probably had MS for at least 10-15 years…all being masked with valid lumbar issues…I only got the MS diagnosis cause I still couldn’t walk after the spinal fusion surgery….and I wouldn’t take the “there’s nothing wrong with you” answer… Your description of how people look right past yo I…is unfortunately something I now experience all the time…thanks for being such a great advocate… All the best
    Christine

  14. James May 24, 2014 at 11:42 am #

    I enjoyed watching you on the@today show. I was wondering if you have spoken with any of the other 20 patients on the trial & if there’s any positive results?