My very dear friend Nick is once again riding in the Bike MS event in Michigan. This weekend marks his 6th year riding in this event. It’s a pretty grueling 150 mile ride over 2 days. This is just one of many such rides and walks sponsored each year across the country by local chapters of the National MS Society. Participants ride/walk for, and in honor of, people with Multiple Sclerosis so that hopefully one day they can find a cure for this debilitating and, sometimes, fatal disease.
One of my those people with MS is my sister Marilyn. She was diagnosed with MS about 8 or 9 years ago after she began experiencing “floaters” and blurriness in her vision. She went to see her eye doctor about this issue. He had, thankfully, recently attended a conference where the link between vision problems and MS were discussed. He referred her to a Neuroimmunologist at the MS Clinic at Vanderbilt Medical Center who ran a battery of tests and ultimately confirmed she had MS. At the time of her diagnosis, she was both a fairly recent newlywed and a new mom to my niece Casey. It was devastating news.
She has done fairly well over the years with treatment and has been able to lead a somewhat “normal” life. It hasn’t been easy though. Several years into her treatment, a routine test panel revealed that the Interferon was adversely affecting her liver (a somewhat common problem). So, she was forced to make a decision to lower her dosage of Interferon which increases the likelihood of experiencing the MS symptoms, or to continue with the normal dosage and run the risk of potentially needing to have a liver transplant down the road.
My sister opted for decreasing her dosage. This has resulted more symptoms, but she’s still doing fairly well otherwise and her liver panels are holding steady. The one symptom that has gotten noticeably worse is her balance. Even without drinking a drop of alcohol, she would be unable to pass a field sobriety test simply because she doesn’t have the balance capacity necessary to pass the tests. If her balance continues to deteriorate, she will eventually lose her driving privileges and, if it gets bad enough, end up having to use either a walker or wheelchair.
About 3 years ago, she was unexpectedly fired from a job at a small to medium-sized wholesale distributing company where she had worked for well over 10 years. Even though nothing was ever able to be proven definitively, the vast assumption by everyone involved was that her employer let her go due to the ever-increasing costs of providing my sister with medical insurance. Since her husband and his father owned a small trucking company together, he also did not have medical insurance, so they were forced to start paying for all of her medications out-of-pocket. There were many times, however, that if it was a bad month for the trucking company, that she went without purchasing her medication because they simply couldn’t afford it.
Fast forward to the end of January of this year. My brother-in-law was killed in a single-car accident on icy roads on January 31st. My sister was now an unemployed widow at the age of 45 with MS and two children under the age of 10. (In addition to my niece, my sister and her husband had taken responsibility a couple of years ago for raising his great-nephew, now 3 years old, because the mother had a drug abuse problem.) Finding a job in our current economy can be difficult enough on its own, but try finding a job when you tell the potential employer that you have MS. Fortunately, her father-in-law basically created a position for her at the trucking company to give her enough income to be able to feed her family, but she still doesn’t have any medical insurance and can’t afford to pay for an individual policy because of her pre-existing MS.
I’m not telling you guys all of this so that you will feel sorry for my sister. I’m sharing this to give you just one of the many faces of people living with MS. She’s just one story. There are so many more out there, some much worse than her own, since there are currently nearly a half million people in the U.S. living with MS with approximately another 200 people each week being diagnosed. This disease affects about 2.5 million people world-wide, most of whom are women since women are 2-3 times more likely to have MS than men.
So, if you are so inclined, I would be ever so grateful if you would make a donation to my friend Nick as he is riding his heart out this weekend, not only for my sister, but for all the others like her who are living with MS. The money does not go to him, but goes directly to the MS Society. Here’s the link one more time:
Nick’s Donation Website
The MS Society is an wonderful organization that not only helps fund amazing research, but also uses the money raised to help support those already living with the disease. They locally fund both educational and recreational programs for MS patients and their families. They also assist patients financially and through advocacy as needed. They truly are an amazing organization and I’m honored to work with them at my local chapter here as well.
If you decide to make a donation, please accept my most sincere and grateful thanks! If you are inclined to help even further and want to participate in future events, check out the Walk MS, Bike MS, and Challenge Walk websites to find an event near you.
If I’m feeling up to it tomorrow, I may try and get out and at least do some walking. Since I’m still having some queasiness issues, I don’t think I’m up to trying anything more than that yet.
So, I’m well on my way of meeting my goal of running the entire 2 mile run portion of my tri.
The world has lost an amazing talent. Here’s a clip of my favorite Carlin bit:
