Now I am looking to embark on the next phase of my journey. It is no longer about me... Now I want to help and inspire as many people as I can!
I was diagnosed with MS in 1994 after finishing college. It started with vision issues that eye specialists could not diagnose, and I ended up telling my doctor about my vision issues and that my mother had MS – which I thought to be the cause of eyesight problems. After testing with a neurologist, it was determined that optic neuritis was the cause of my vision issues – so went my MS diagnosis, and thus began my journey.
I immediately began following an AVONEX injection therapy routine. Since there have really been no therapies for primary progressive MS exclusively, I continued AVONEX treatment over the next five years, until discontinuing for sight soreness and debilitating flu-like symptoms following injections.
Discouraged and not feeling any new symptoms, I stopped therapy. After a few years and the constant nudging from my mother, I sought a new neurologist and new treatment. This time it was REBIF. Three subcutaneous injections a week. After three years I once again became frustrated with sight soreness and discontinued therapy.
At this point, I stubbornly decided that my active lifestyle coupled with more exercise, better diet, and a job that kept me on my feet 8 to 10 hours a day (restaurant manager) would keep me mobile. This worked for several years, and then symptoms began to appear ever-so-slowly. At this point, a new neurologist put me on Baclofen to ease the spasticity in my stride and then suggested TYSABRI as a new therapy option. We disagreed as I was very reluctant to deal with more needles.
So the progression continued... Fatigue – everything began to take more time and effort. I struggled to complete a 10 to 12 hour shift and needed more sleep afterward. Balance – I began bumping into corners at work and around the house leading me to "hand walking," where I started finding convenient places to place my hands for stability to hide my shakiness. Weakness – Here began the foot drag and loss of grip strength on my right side. I was dropping dishes on the way to a table and almost falling into guests laps led me to the conclusion that I may have to stop working within a few years.
After a particularly stressful couple of weeks at work, I had another bout of optic neuritis. I visited an optic neurologist, who turned me on to the GILENYA therapy. I opted for disability in May 2012.
Now I am a 48 year old looking to embark on the next phase of my journey. It is no longer about me... Now I want to help and inspire as many people as I can!
Now I am looking to embark on the next phase of my journey. It is no longer about me... Now I want to help and inspire as many people as I can!
I have cut out red meat, fried food and significantly reduced my alcohol consumption. I work out five times a week – including two personal Essentrics training sessions per week. I also see an occupational therapist twice yearly to assess my condition progression.
I have tried to remain active with outdoor activities, but now most require adaptive equipment and support persons.
Everyone! And I mean that.
My family has always been there with love and support. My wife keeps me positive, challenged, and motivated.
I have friends who support me, but unfortunately, my condition has contributed to my introverted nature, and I have avoided social situations since I stopped working.
My two wonderful kids, if that can be called an accomplishment.
Make the best of the journey! See the positive in all things.
I had to stop working, but that has allowed me to see more of my kids' sporting events and now I have time to travel. Mobility challenges make the things you do more difficult but more rewarding. I do assisted skiing yearly, assisted scuba, hiking (wilderness on wheels... check it out!), and now I look forward to trying wheelchair sports.
Life is not over, and only a new chapter has begun!
Make the best of the journey! See the positive in all things.
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