Monday, April 15, 2019

MS Walk - 2019

This is what I wrote in an email to the list of friends and family of mine who support me in the MS Walk every year.

It's that time of year again - May 4 is Denver's MS Walk in City Park. Last year I wanted to just walk the whole thing, and I did, without stopping. This year my goal is to walk the mile in under 30 minutes. You should know that this is a pretty big goal. I'm also stubborn and if I don't make it, I will find other places to walk a mile in under 30 minutes.

Before I tell about my year and why you should continue to support me, here is the link where you can donate to support me in the MS Walk.  Money raised goes to research toward a cure for MS as well as for programs for people with MS, their families, and friends.  Here's the link (and every donation is helpful - big, small, somewhere in between):

There's a thank you video on that page - check out the end of it!

This year has been another breakthrough year for me which is strange because I thought last year was the last of those. But I'm not complaining. People now ask me what I did to my knees. It's nice to have people think that bad knees are my only problem.

This year I went from using my walker to using hiking sticks to walk. Making this transition is the hardest thing I have ever done. It is all about my core muscles (stomach and back) working, and trusting that I have the balance needed to use something a lot less stable than my walker. At first, it took all of my concentration, and I still don't look around much when I use them, but I have just started to be able to go up and down curbs using just the sticks.  I can walk about 30 minutes with them, at a much slower pace than I walk with my walker. It is difficult because it is less stable, especially initially. And at a certain point my core muscles are done and I may not be back to my car - it's a bit problematic.  It feels like being placed in the middle of a swimming pool, far from the edge, and then not knowing if I can swim at all, but I'm stuck in the middle of the water, in a pool where there are no lifeguards or anyone who knows how perilous it is that I am in the middle with no options other than to somehow keep going, so people just wave and say hello as I have a bit of an internal panic attack.  But I have made it back to the edge of the pool, in this analogy, many times. It hasn't been pretty but I am continuing to improve. Step. by. step.

This is possible, still, because of the combination of Ampyra, which I have been on for 9 years now, physical therapy, being stubborn, and the support of all of my fantastic family and friends. This year a generic version of it became available which makes it a lot less expensive for whoever is paying for it (I pay a copay every month). I can now stand for any length of time without getting tired.  Last year before the MS walk I walked a lap around the track in 9 minutes and 30 seconds.  This year I walked that same lap in just under 8 minutes, gasping for air when I was done.  It felt much like how I used to feel at the end of an all-out 400 or 800 meter run. I absolutely love that feeling - there is nothing like it.

I still use a treadmill that holds 25% of my weight, twice a week and have walked 16 minutes at 3.3mph on it. I don't know that I can go much faster unless I can figure out how to bend my knees when I walk - and I don't know how I can learn that, but I didn't think I would ever use hiking sticks so you just never know what is going to happen.

The Bioness devices I use to help me walk came out with a new model! The new model is exciting because it doesn't require a heel sensor but works by determining when I am starting to lift my knee when starting a step.  And it is controlled right on the device so I no longer have 2 remotes that hang around my neck.

I stood up to ski again this year and one by one they removed a bunch of things that helped me remain standing while skiing with what they call ski legs. By the end of the season it was just the ski legs, my instructor, and me standing to ski.

There are also many little things. I can walk around my house without using anything to walk - around 50 steps. We do joke about me looking like a walking zombie - imagine a person walking with knees that do not bend.

It's an every day thing. I'm not going to give up and I'm hopeful that small improvements will continue. I hope others know the same thing - that no matter what is happening in their life, they should not give up, and no one should assume that they can't improve, because you just never know.  Pep talk complete?

What would be amazing is if you, the people who are reading this, could find a way to donate, as so many of you have done for years - to sponsor me in the MS Walk, no matter if it is $1 or some huge amount of money - so that someday we can say there is no more MS - so we don’t have to look for  improvements - but so that we can say people do not have to even be diagnosed with this disease. That is my great hope.

Thank you for all you have done in the past in terms of sponsoring me. Words cannot express how grateful I am.

Much love and peace to all.

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