Research, Politics, MS and Me

In 1985, I started experiencing numbness and motor deficiencies. Like many people, I was tested,  and then undiagnosed . Maybe it was multiple sclerosis… but I was not heat sensitive – in fact I loved living in Florida and soaking in the  hot tub – and it took 14 years for anything to show up on my MRIs.

I was eventually diagnosed with MS. With ongoing treatment and attention to my overall health, I was able to keep working – as a university professor, teacher and researcher  – through my partial retirement and move to the Washington, D.C., area in 2004. My left leg doesn’t work very well, so for walking any distance or in a crowd I use crutches – or I fall down. That’s one nice thing about D.C.: there’s always a crowd to offer help if I fall. Also, the D.C. region is where decisions are made about state and federal funding. And as an MS activist, I like having a say in these decisions.

My schooling is in medical science, and I’ve done pharmacology, physiology and more. Because I worked at a health center I also lectured in the dental, veterinary and nursing schools. So when I heard about the United States Department of Defense’s Congressionally Directed Medical Research Program (CDMRP) “consumer reviewer” position six years ago, I applied. I had reviewed grants as part of my profession, and this “consumer” review was something I wanted to do as a person with MS – in addition to hopefully providing input from a professional perspective and getting back into discussion circles with my former colleagues.

The CDMRP gets 30-40 MS research proposals/applications each year, but under current budgets they can only fund five or six. The program specifically encourages research that addresses critical needs of the MS community – like prevention, earlier detection, and new treatments for MS – but of course research proposals/applications are written at a scientific level. For each assigned application, I prepare written critiques on how the proposed research addresses the MS community's needs and concerns. We often do a multi-day meeting where, as a PhD in the field, I can say “the elegance of this proposal is seductive” (if it is), and as a person with MS I can say “but the outcome is not going to make a difference for me” (if that’s true). I bring unique experience – perspective both as “consumer” living with MS, and as a seasoned member of the scientific community. The scientific review lets me apply my education and experience, and at the end of the day, I take off my science hat and think about it personally: will this research change my life?

Through my various roles – “consumer” reviewer, scientific reviewer, MS activist, Virginia Government Relations Committee member – I can see that we have come a long way. However, there is still work to be done: we cannot stop until we have a cure for MS. The MS CDMRP and the research it funds could help us reach this goal. CDMRP funding is decided annually, and I’m excited to report that MS activists like me have spurred possible doubling of funding next year!

Join me. Bring your perspective – as a person with MS or someone who cares about MS – to advocacy, research and more. Become an MS activist today.   

 

Tags Activism & Advocacy, Research      4 Appreciate this
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Phil

Phil Posner, PhD

Phil is a retired health center professor. He started his career in Brooklyn and worked his way around academia from there to UCSF, Stanford, U. of Fla, Oxford, Auburn and FSU. He currently does part time consulting with Oak Ridge Associated Universities as well as the FDA, DOD and HHS. Phil and his wife live in Virginia where he volunteers with the local MS Society chapter and the regional transit system for accessibility.

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    14 Comments

  • Shelley   Aug 21, 2014 3:31 PM
    Hi, I'm sorry that it took you so long to be diagnosed with MS, it's a shame there's no clear shot test for MS. It is a disease that gets uglier by the day. We have to wait by the day for them to diagnosed, unfortunetly MS doesn't wait for you. It plows forward while were sleep. Thanks for speaking loudly for all of us. Good luck
  • Tom Biel   Aug 21, 2014 3:40 PM
    Phil: Thank you for your activisim. I'm sure that your work has resulted in a major benefit for the MS community.

    Tom
  • otto strahlem   Aug 21, 2014 5:11 PM
    I was diagnosed 11 years ago I have gone from relapse remitting to secondary progressive it is hell living with this we need an answer to this now the pharmacuticals just keep making money that is why I believe they are in no hurry to find a cure
  • Michael C. Lesher   Aug 21, 2014 5:12 PM
    There will never be a cure for MS or any other disease, because there is no money to be made in a cure. This was learned a long time ago. If a cure is found then a component or two is removed so the disease is slowed, that why the person will have to take the drug for the rest of there lives and keep paying while the manufacture rakes in the money. I know this will not be seen because the truth can not be known.
  • taylorl  Aug 21, 2014 5:32 PM
    That you for working for all MS sufferers. Have you tried Ampyra to help facilitate walking?
  • Wendy   Aug 21, 2014 6:45 PM
    Thank you for being there for us and keeping the ball rolling forward towards hopefully either a cure or better medication for MS! I appreciate your efforts!!!
  • Gerri Ballas   Aug 21, 2014 8:22 PM
    You are an inspiration! I've had undiagnosed MS since I was 24. However, I kept on going. Now at the age of 71 I am still going and even though I have trouble walking I do. You must be positive at all times and not let it take over your life. Perhaps I'm blessed but belief in God has made me strong; given me life; and lets me know I still have lots to live for. God bless you, your family and keep up the fight.
  • Brenda14  Aug 21, 2014 10:15 PM
    Phil, I'm glad you are there, fighting for all of us. Thank you.
  • Betty   Aug 21, 2014 11:29 PM
    Thank you for your fabulous work. I, too, am from Florida. I lived in Miami for almost Florida. I was a public school teacher for all ages as I had received my MeD in Reading and Learning Disabilities at UM, a tracker at several schools for learning disabled students. I also worked at UM Reading Clinic during the summer as a diagnostic clinician. In addition to that, I was an adjunct at UM and FLU and had my own educational consulting business for 35 years. I've had several articles published as well as well as multiple grants including a multiple school Anneburg Grant. After being conferred my specialist degree in gifted education, I taught resource gifted, was lead teacher at a school which had a full time gifted program, and wrote integrated learning curriculum for Miami Dade County Public Schools. I began encountering MS issues in 1989 but not diagnosed until 1992. I inquired about the use of DMT's when they became available. I was told my case was not severe enough. The heat and humidity forced me to retire early at the age of 60. When I moved to Houston, I found a fabulous neurologist who is also now chief medical advisor for the MSAA. She had to do all diagnostic tests as my former neurologist ' s office never returned repeated phone requests. Multiple multiple lesions were found in the spinal cord as well as serious weaknesses issues in left side. With water aerobics, I was able to regain bilateral strength in both sides. Subsequently I had positive results from physical therapy. My life here is very full. I've been able to resume my passion for music. I was Concertmaster of a string orchestra at a local college and currently play with the Houston Sinfonetta, track private violin and viola lessons in a public school, and take violin lessons. I'm participating in a fabulous dinner meeting for Super Women with MS moderated by my neurologist when we have funding. Could you give me ssuggestions on how to get consistent funding? At one point, Teva supported our program which allowed us to have consistent monthly meetings enabling us to focus on MS books such as Living Well With MS. Our current meetings have to include brief ads about our sponsors which does not allow time to really focus on women's issues. The Men's MS meeting has had even less funding. Any suggestions would be welcomed.
  • Betty   Aug 21, 2014 11:29 PM
    Thank you for your fabulous work. I, too, am from Florida. I lived in Miami for almost Florida. I was a public school teacher for all ages as I had received my MeD in Reading and Learning Disabilities at UM, a tracker at several schools for learning disabled students. I also worked at UM Reading Clinic during the summer as a diagnostic clinician. In addition to that, I was an adjunct at UM and FLU and had my own educational consulting business for 35 years. I've had several articles published as well as well as multiple grants including a multiple school Anneburg Grant. After being conferred my specialist degree in gifted education, I taught resource gifted, was lead teacher at a school which had a full time gifted program, and wrote integrated learning curriculum for Miami Dade County Public Schools. I began encountering MS issues in 1989 but not diagnosed until 1992. I inquired about the use of DMT's when they became available. I was told my case was not severe enough. The heat and humidity forced me to retire early at the age of 60. When I moved to Houston, I found a fabulous neurologist who is also now chief medical advisor for the MSAA. She had to do all diagnostic tests as my former neurologist ' s office never returned repeated phone requests. Multiple multiple lesions were found in the spinal cord as well as serious weaknesses issues in left side. With water aerobics, I was able to regain bilateral strength in both sides. Subsequently I had positive results from physical therapy. My life here is very full. I've been able to resume my passion for music. I was Concertmaster of a string orchestra at a local college and currently play with the Houston Sinfonetta, track private violin and viola lessons in a public school, and take violin lessons. I'm participating in a fabulous dinner meeting for Super Women with MS moderated by my neurologist when we have funding. Could you give me ssuggestions on how to get consistent funding? At one point, Teva supported our program which allowed us to have consistent monthly meetings enabling us to focus on MS books such as Living Well With MS. Our current meetings have to include brief ads about our sponsors which does not allow time to really focus on women's issues. The Men's MS meeting has had even less funding. Any suggestions would be welcomed.
  • jeb34139  Aug 22, 2014 4:37 PM
    Thank you for your resume. I too have a comprehensive one however since diagnosis in February I've only been able to work intermittently. I don't know if anyone's has noticed but we don't know anything more than we did previously. Give us the details of where we are in the project with objective of cure. Your income is assured but I've already lost50% of mine and that is the status quo. I don't need a PhD to realize lobbying when it is happening. PS We own the IP to this cure remember?
  • Fran   Aug 26, 2014 6:12 PM
    I've just moved back to Dallas area from Denver Been an MS activist for 7 yrs. started to read some blogs when someone talked about a certain drug. Let me explain quickly what I do know. There are a lot of great meds out there, they are just not covered! That is where the problem IS and was for my Ill Spouse! One drug had worked and allowed good days to be golf days is tysabri. I'm very opinionated so I will stop now but feel free to contact me as I will fight hard! I wish you all the best. Fran
  • Eva Marsh   Sep 1, 2014 6:48 AM
    For 14 years I was told my symptoms were just 'creative imagination.' During that time, I learned that if I ignored the funny symptoms and just kept going, the symptoms would disappear! When diagnosed in 1967!! I was told I would never recover, to get my affairs in order, I didn't have long! I did recover and returned to work at Veterinary college as junior tech in Pharmacology research lab. I began review of research that continues to present, and found proof that myelin repairs itself with movement. This research has been the basis for my recovery strategies. My MRI has too many spots to count and has been interpreted to mean that I require 24 hour care. In the old days before the rush to diagnose for drug therapy, doctors used to wait until a person had experienced 2-3 episodes of disease activity to avoid attaching the label too soon. I am now 70, have recovered from ALL symptoms and I am fully mobile. Last year I went hiking in the Shetland and Orkney Islands and my next trip is to Hawaii. I grieve that the research community does not recognize their own glorious research. Details on my website www.evamarsh.net.
  • Avatar
    SWB  Sep 5, 2014 2:07 PM
    Your name sounds familiar, but perhaps due to my cog fog, I can't be sure. Wondering if there might be an FSU connection? I was there in psych dept from 1977-1981. Charley Madsen was my dissertation advisor. Glad to hear you have found meaningful work beyond your chosen profession!

    Susan Blue