This year I am doing the MS Walk again, and I am asking for the support of friends and family, again. I’ll be doing the walk virtually, because I also have 2 choir concerts that weekend and need to be rested for those.
Why is donating via the MS Walk important this year?
Donating this year is important for several reasons. In March of 2025, Congress cut the only federally-funded stream for MS research, called the Multiple Sclerosis Research Program (MSRP), for this fiscal year. The MSRP was established by Congress in 2009 specifically to address the higher incidence of MS in military service. The MSRP had recently been funded at $20 million per year, and it actively supports 70,000 American veterans living with MS. For the military, MS is a presumptive condition, which means that it is presumed to be connected to military service if someone is diagnosed within seven years of an honorable discharge.
Given this cut, it seems likely that an additional $20 million raised would help close this gap and any near-future possible gaps. I’ve known several people in the military who have been diagnosed with MS and it is heartbreaking to know that they have served this country and then been diagnosed with MS.
Donating this year is also important because donations will continue to fund research as well as programs that serve people with MS. There are still people who wake up unable to move because of this disease, and although treatments have slowed the progression of MS, MS remains a chronic condition for almost a million people in the US.
To brighten things up a bit, an update on me….. I’m doing very well and am still improving.
Racing: I’m training again for the Bolder Boulder (10k race on Memorial Day). I have some cheerleaders where I do my long training walk almost weekly. One guy stopped me a few weekends ago to say “I remember seeing you here a year ago, and your walking is much, much smoother now…. Keep going.” And so I keep going with the hope that 6 miles won’t feel so hard by Memorial Day.
Mobility: We have traveled a few times to Boston lately since Lori is a senior in college. On our recent trips I haven’t brought any mobility devices with me. And on our last trip to Boston, for the first time, no one asked me if I needed help or wanted a ride through the airport. I even got to put my suitcase in the overhead compartment by myself.
Biking: this year I figured out how to get both feet on both bike pedals of my college bike, and I am riding that bike again!! I have always loved that bike and to be able to ride it again - well, it sat unused for a long time and I’m sure people wondered when I would give it away. Never say never.
Secrets: It often feels like I have secrets as I move through the world. These secrets are ordinary things people do that I couldn’t do for years, like standing in line, walking through the airport, carrying something while walking, writing using a pencil, etc. No one, generally, knows that as I’m waiting in line, I couldn’t stand for many years. No one, generally, knows that as I’m walking, I couldn’t walk without assistance for many years. People don’t know that I had great difficulty writing using a pen or pencil for many years. While I feel like I am holding these secrets, I also get great joy in doing very ordinary things. When I write anything, there is joy in seeing how my fingers can hold a pencil. There is joy in the small act of tying my shoes without looking at the laces because I have better dexterity now. And with this joy, I smile often. I imagine I have the biggest grin when riding my bike - it is as if I just won the lottery.
That’s a summary of my current life. There are still frustrations - I don't look like everyone else which is frustrating mainly because it generates occasional unwanted negative commentary from anyone when I walk ("looks like you hurt yourself"). I continue to work with a physical therapist to have a better gait. Sometimes when walking and landing on my left leg, my knee locks which throws everything off and then I have to focus on landing a certain way on my left leg so my knee doesn't lock. At these times I feel like I am negotiating with a thing that has the upper hand and would rather not negotiate.
Don’t delay!! Here is the link where you can donate to support me in the MS Walk this year: https://events.
Thanks for all the support from friends and family over so many years. Every donation, large or small, has been and is very important. I am grateful to have such strong support every year. And I'm really grateful to all the people, like the guy at the park, who continue to cheer me on through the ordinary things I have gained back and continue to fight to improve.
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