Living with Progressive Relapsing Multiple Sclerosis

This blog begins my journey of self discovery and sharing with those who have MS and their caregivers and loved ones. It seems like every person I meet knows, has known, or has lost someone to MS.

On May 11, 1995 my life was changed forever. Three months to the day of my 30th birthday I collapsed; the right side of my body was paralyzed. When the doctors were finished, I was diagnosed with Primary Progressive Multiple Sclerosis. My grandfather had been diagnosed with MS at the age of 27 and passed away at 40. I had two little children at the time; my son who was eleven, and my daughter who was three. I had no health insurance and my wife and I were living paycheck to paycheck as it was.

I decided that the best way to fight the MS (and because I did not have health insurance) was to become a human subject in MS research. I started my first of several drug studies at UCLA in December of 1995 which would send me on an odyssey that would last close to a decade.

UCLA neurologists updated my MS diagnosis to Secondary Chronic Progressive in 1997. My first “major exacerbation” of MS receded over three years and I was able to regain about 80% of my right side function; however, I was left diminished with limited capabilities which I fought to overcome.

In January of 2010 I had a major relapse of my MS. In March of 2010 my neurologist of 16 years and my General Practitioner Doctor who had also been my doctor for 16 years told me that my MS had become Progressive Relapsing; there were no more treatment options for me. I was told that I should prepare for the reality that (I refused to accept for 16 years) I am disabled and that my disease course was only going to progress from there.   So at 45 I had to stare into the ugly face of disability. I was the VP/GM of a successful commercial collection agency. I was depended upon to handle all of the day-to-day operations of the company. But the reality was that I was falling behind and I could not do the job at the level that I had done it for 5 years. Things were getting missed; I was missing deadlines and I was not able to keep up with the amount of work I had or the stress of the position.

I went to my neurologist and GP to see if there was anything that I could do to help with the problems. I was told that I had to stop working because my MS was now progressive and the stress of my work would only make the progression go faster as well my ability to do my job was severely diminished. I called our President/CEO and we met to discuss what would happen from there. Fortunately our company had a good long term disability policy in place.

I was destroyed physically and mentally; I could not imagine life without working. At the same time I knew that I was doing my employer a disservice as I could no longer do my job.  In January of 2011 I filed for long term disability with our carrier and the claim was approved. On March 1, 2011, I filed for social security disability and resigned my position with my company. I felt lost, while I was blessed to have a great disability carrier, I was stunned at the reality that I, at now 46, could no longer work in a vocation that I loved and was very good at. I had been told the horror stories of going through the process of filing for social security disability and that I should expect a long and arduous process.  My disability carrier even had an advocate group that was prepared to assist in the claims process. I filed my claim online with social security on March 1, 2011 and on April 24, 2011 I received approval from social security disability of my entitlement as disabled. I have to admit that my wife and I sat down and cried. The reality that I am now totally disabled, and the concurrence of this by both my private disability carrier and the federal government was overwhelming; I now live each day as if it were my last and work hard to stay healthy and active. I can still walk and I walk every day. I plan to blog about my 17 year struggle with MS. About my experiences as a clinical research subject at UCLA MS Research and about life after the door to a work life closes and how to keep your body and mind alert and active. I will write more soon.

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