Paving the way for MS research

It all started 30 years ago when I noticed that my vision deteriorated suddenly. I had always had 20/20 vision, so I became acutely aware that something was wrong when my TV started looking blurry, I mixed up my colors and my depth perception was off. Unnerved, I sought out a doctor’s opinion. I was relieved when he ruled out a brain tumor, but I was left with no definitive answers.

As time passed, my vision gradually improved, but I started noticing other seemingly unrelated issues. Occasional muscle spasms would come and go when I wrote. I was getting much more tired during my weekly golf outings. Again, I set off to see my doctor but he dismissed both of these symptoms as dehydration. 

As more time passed, my family and friends began to notice a more visible change: I had begun walking with a slight limp. Still thinking little of it, I brought it up at my annual exam with my doctor and was surprised that he suggested I go to a neurologist for follow up. After a battery of tests, the doctor came in to review the results. He brought out my MRI and carefully pointed to the lesions that had developed on my brain. He then told me I had multiple sclerosis. I didn’t even really know what MS was, but I knew it wasn’t good.

In the days and weeks after my diagnosis, I began to drown myself in medical information about the disease. However, within this sea of information, there were basic pieces that were missing. Exactly how many people in the U.S. have MS? Was the fact that I served in Vietnam or had shingles a contributing factor for my disease? I was shocked to find out the government wasn’t gathering this basic information which could help unveil potential triggers for or patterns of the disease. Without this information, aren’t MS researchers operating at a distinct disadvantage? We’ve been fortunate to have progress in understanding MS and developing new treatments, but there are still some big unanswered questions and barriers that we need to address…. and Congress can help!

This past October, I was excited to learn that U.S. Representative Tim Murphy was holding a roundtable discussion about the 21st Century Cures Act in my community. I joined over a dozen patient advocates to speak on behalf of our communities – and was honored to represent people living with MS.  

Representative Murphy and his staff took note of the issues of importance to us and just this past month we learned that the Advancing Research for Neurological Disease Act (H.R. 292) was included in the 21st Century Cures Act. Its inclusion accomplishes one of our many goals: creating a nationwide system to track the incidence and prevalence of neurological diseases.

Personally, I feel empowered when testifying before my U.S. Representative, because I know that I’m driving change in my community and across the country. As my disease continues to progress, the urgency for more answers grows. While there are more than 10 treatments for relapsing MS on the market now, none of them work for me, because my disease has transformed into a progressive form of MS. Without a better understanding of MS, my dream of long walks with my wife and running with my grandchildren slip farther away as my functioning continues to deteriorate.  My hope is that my work as an MS activist will pave the way for more research to ensure that my dream — and the dreams of many others living with MS — come true, and we end MS forever. 

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Frank

Frank Austin

Frank Austin is a retired 63 year old field engineering manager in Pittsburgh, PA. Frank has been involved in MS advocacy efforts at the national, state and local levels in both California and Pennsylvania. 27 years after his diagnosis, Frank has been an active member of the National MS Society as self help group leader and Government Relations Committee member.

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    12 Comments

  • Jay Qureshi   Feb 20, 2015 1:37 PM
    One neighbor of mine back in Milwaukee had her vision come back when she tried a product called OPC-3 (from market America). When I was taken OUT of the workforce because my eye/hand co-ordination was suffering, they tried to put me on the interferon...my body HATED that and started up with a dose or two of the powreful anti-oxidant...since then have not gone one day without this supplement....combined with high-grade marijuana, feel pretty good, for now...so yes, FRANK try the OPC-3....it's quite magical really~ you can buy it from Cheryl Kugler in Arkansas~ email me if you need more info~
  • Avatar
    marshina  Feb 20, 2015 1:38 PM
    Having M.S. going on 48 years, it took 20 years before MRI's were available for a diagnosis. I find it interesting that every woman I ask that has M.S. has had mononucleosis. That appears to be one of the triggers. Ireland and Scotland have a majority of ms sufferers. Once it wasn't heredity. Now it is. Folks with relapsing remitting can control or slow progression with an array of interferon drugs. What would happen to all those pharmacutcal companies if a cure to repair myelin is found?? One does not have to wonder why research is delayed. Good luck to you.
  • Linda   Feb 20, 2015 3:27 PM
    A friend of mine was diagnosed with MS after having shingles. Both being nerve related may have a connection. Thanks for sharing.
  • Linda   Feb 20, 2015 3:27 PM
    A friend of mine was diagnosed with MS after having shingles. Both being nerve related may have a connection. Thanks for sharing.
  • Tom B.   Feb 20, 2015 3:39 PM
    Frank: I was diagnosed 10 years ago with SPMS. Thank you for your work as an MS activist. My aunt and one of my cousins also had MS. I think we need more genetic testing as well as research in diet and environmental triggers.
    Cheers,
    Tom
  • Avatar
    SmartyPants  Feb 20, 2015 4:09 PM
    Frank, great blog post, showing how to get more involved, and getting the information you need to help you with your distinct , personal MS challenge. I too have progressive MS and things are starting to change. More research is being devoted to the progressive form of MS, and one promising on is stem cell research. I imagine you are already linked up to MS Society sites who send information each week about advances. MS World is another site where you can offer up info and seek answers.
    Keep on posting and educating new members of our MS family.
  • MS Spouse   Feb 21, 2015 8:20 AM
    My spouse has had MS for 25 years now. It's been a slow decline, which I'm grateful for. What frustrates me is the report I hear of the number of people living with MS. Surely we cannot all know each other so is there a major under reporting of the disease?
  • Sylvia   Feb 21, 2015 10:22 PM
    I have MS too but I never wanted to take any medicine, so I searched for natural answers and found Dr Wahls protocol a great help. Pls do look into her site.
  • carol weir   Feb 23, 2015 12:24 PM
    you are a kind man . . . . keep fighting! we need more people to fight for this, all neurological diseases. wish I could do as much. C.
  • Suzanne Branch   Feb 25, 2015 8:25 PM
    Of course I want a cure now. But I also want legislation that would give those of us who have progressive m s to have access to bathrooms in airports and doors with electronic eyes to let me in my published library. LAX only has two terminals which have accessible toilets for wheelchairs. My library has two heavy doors which I can open in my electronic wheelchair. In both cases, everyone says they don't have to provide these "amenities " because they were built before the ADA laws were enacted.. This is affecting my life and millions of others with m s, als, strokes, vets, etc. I want to be cured, but until then, I want to live!
  • Percenia A. Beasley   Mar 5, 2015 9:55 PM
    I feel much like Frank. I want to interact with my grand-kids. I don't want it to be just my husband. My disease is no longer relapsing remitting and it frightens me.
  • suzanne branch   Mar 16, 2015 5:37 PM
    i also have progressive m s. I also want a cure. I am also concerned about physical therapy. I have this disease all year long, but medicare pays for only about five months. I have to either skip it or pay about $600 a month when I use up my benefits.