My MSA journey

Well its been 15 months since my MSA diagnosis.  How am I doing?  Unfortunately, the disease has progressed manifested by the most pronounced symptoms of an inability to walk plus my speech is now being affected.  However, I must say despite the constant challenges of this disease, I am coping pretty well. I am support by a loving family and supportive network of friends. I try to maintain a positive attitude because the alternative is unacceptable to me. I can’t control MSA, but I can control my response to it.

I also want to resume fund raising efforts. I want to remain active in the cause and continue to raise money for MSA research  I want to make sure that smart neuroscientists remain motivated to find solutions to neurodegenerative conditions like MSA.  Throughout my journey, it was common for me to hear doctors say “There is no cure for MSA.”

That is an unacceptable answer to me because it limits discovery, quiets curiosity, and highlights hopelessness.  The answer should be “There is no cure for MSA – Yet.  But one day there will be.”

That answer keeps curiosity and hope alive. I don’t know when that day will arrive, but I have confidence one day MSA will be an incurable disease of the past like certain cancers, smallpox, and bacterial infections. Discovery of new breakthrough knowledge should be the obstacle to a cure, not money. Thus far, approximately $35,000.00 has been raised.  I know money raised today will probably not help me, but perhaps it will help people with MSA in the future. This disease needs to be eradicated from human beings.

I encourage you to donate and contact your network of friends, family, acquaintances, and co-workers.   We can’t wait for someone famous to contract MSA and give it a name and public face.  Write your congressional representative or senator to support funding of medical research at NIH. Given today’s fiscal budget stress, NIH funding is always at risk of being cut at the very time when it needs to be increased.  Imagine one day, someone will present to their doctor with MSA symptoms, and their doctor will respond, “This disease used to be incurable and a death sentence, but today we have a solution.”  I dream about that day. The time is now.

2 Comments on “My MSA journey”

  1. j says:

    Mark, how beautiful and inspiring. Both Dan and I can relate to all you say, and I’ll add, from the perspective of the spouse of a terminal man, supporting and loving men like you and Dan is our joy. Like you say, you can’t control the disease, but so much around it can be controlled and relished like crazy. My love to you, and Julia, and all the kids. Much love.

  2. Nancy Heimler says:

    Hi Mark, Your letter was very inspiring to me and George. We received it from Natalie Newman who received it from her daughter. I am going to forward your letter to all my friends who I think might contribute to eliminating this horrible disease as well as sending it to those who might surprise me and help in anyway they can. I think what you are doing is remarkable and brave, but as I get older, I realize that we can wallow in self-pity or keep ourselves busy trying to accomplish something important in however long our lives might be. And you certainly are doing then latter! George joins me in sending our love to you, Julia and your children; we will be in touch. Love, Nancy and George

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