Why do I Want to Make a Difference?

Life.

    It can be beautiful. It can be ugly. It can be easy. It can be hard. It can make you laugh. I can make you cry. It can make you happy. It can make you sad. It can be inspiring. It can be discouraging.

    At 53 years old, I've seen and felt just about everything that life can be throw at you. I'm living with an advanced stage of Multiple Sclerosis, a degenerative disorder of the central nervous system that cause the nerve pathways to disintegrate and misfire, daily pain, constant muscle aches and twitches, neuropathy in my forearms and lower half of my legs, some memory loss, and an increasingly worsening vision problem.

    Sounds discouraging and a bit frightening, doesn't it?

    So why do I want to start making a difference now?

    I am disabled. I have been this way for the last 12 years.

    (2009-2011) I had been having a few seemingly minor physical problems for a couple of years prior to my diagnosis. Muscle spams, weakness in my right side (specifically my right hand and foot), I had been supporting myself with just a cane up until then. And having multiple doctor visits to get a referral to a neurologist wasn't getting me anywhere until I switched to a clinic in another town.

    My current neurologist was doing a short residency at this other clinic when my newest GP noticed the problems I was having walking. He gave the referral I finally needed. I walked into her exam room, greeted her, she took one look at me and said, "You appear to be having troubles walking." Seriously, I almost cried at that moment because someone finally saw what was happening to me.

    So within the next three months, she'd scheduled an MRI (they had to sedate me because I'm claustrophobic) and a spinal tap (which SUCKED). So after all of that, I'm sitting in that same exam room and she hands me my test results telling me that I have Relapse-Remitting Multiple Sclerosis. I sat quietly for about 30 seconds before asking her what the plan was going forward.

    During all of this drama, I was fighting to get on Disability/Medicare. It was quite the battle. I was denied twice, got a good disability lawyer, denied again the same week my diagnosis was revealed, but finally succeeded after one last hearing. A four year struggle, but I got what I needed ... finally.

    (2012-2016) During these few years, I went through a period of weekly Interferon-B injections to curb any relapses that may happen. I also had two different physical therapy sessions hoping to stave off further physical decline. I was still using a cane, but also had purchased a wheeled walker as things became more difficult. However, none of these changes didn't really help.

    I had several small relapses within this timeframe (not that I recognized what a relapse was, I just knew that I felt different somehow). Gone was the wheeled walker, in came the first power chair. My ability to drive drastically changed to the point where I had sell my truck. Once the truck was sold, I'd begun to rely on my power chair (used and very slow) to get me places: bus stops, restaurants, stores, etc. I'd also begun to rely on medical transportation to get to my doctors appointments.

    It was on one of the last visits to my neurologist in 2016 that she informed me that my original MS diagnosis had changed. Apparently without the proper medicinal treatment program any MS diagnosis can devolve into a more serious level. She told me that I now had Secondary-Progressive Multiple Sclerosis. Sounds like a mouthful, but it is a rather serious disorder. She also changed my MS medication to a twice daily pill Tecfidera and two other medications to stronger doses.

    (2017-Present) So, life went on as it always does. The change in medication slowed the progression of my MS. The pain from the neuropathy was still a constant but not as noticeable as long as I kept to the prescribed timetable. My used power chair started to have more mechanical problems (having already been fixed three times since taking ownership), but 2020 and Covid blew up, so I had to wait until midway through 2021 to have it replaced.

    Of course, I'd only had the new chair less than six months before I'd had a particularly bad fall and had to endure nine months of physical therapy. The upshot was that my therapist had me up on my feet using a walker again. Not a bad thing per se but not exactly an entirely welcome addition to my daily life. More exercise than I really want.

    So that's my disability story in a nutshell.

    But the real reason that I want to make a difference is I want to pay it forward. Many people have helped me throughout my life as it pertains to my disability. I want this website to be a vehicle for myself and others who are disabled. I want every story (in text or video form) too be seen by all who visit my site, to gain an understanding of what we the disabled go through every day, and to maybe see us as people who should be treated with a little more dignity and respect!