31 Years

31 years ago today I was diagnosed with probable MS. That is the context for the following... it has been a roller coaster ride, but the past year has been one I never expected but continued to dream would happen. 

A big part of my improving in mobility and stamina has been in my skiing. Last February (2023) I started skiing standing up without having a tether attached to my skis (it’s like taking the training wheels off a bike). This past week, for the first time I felt a calm come over me as I skied, so I felt comfortable going faster and faster (I didn’t feel like each bump on the snow was going to cause me to lose my balance and hit the ground), turning with ease, and stopping quickly if needed. I smoothly navigated around other people on the slope, passing quite a few of them. And I wondered, this new feeling, which lacked the jerking of my legs I felt in the past - is that how other people feel when they are comfortable skiing? Is that what "natural" feels like? It's wonderful.

Extending that to walking, I know that people walk without concentrating on how their legs might move without jerking or dragging, where they place their feet with each step, what distance they can walk before starting to trip over nothing and stiffen like a short-circuited robot, and so on. I wonder, in my journey, how close I can get to "natural" walking, that I assume would come with a sense of calm. I do remember the years when I walked without having to concentrate on each step. I’d like that back.

While skiing this past week, I looked up as I made my way down the slope. The mountains were so beautiful - the snow covered them like a blanket. The sun hit the blanketed snow and brightened the scenery. I smiled through a few very emotionally-generated tears, thinking how grateful I was to be surrounded by such beauty, to feel at one with my own body after so many years, and to feel my body's connection to the ground. This amazing experience is the "PS" or “Coda” to the skiing story I told last summer.

Here's the story. It's what I told an incredible group of people who listened, thought, and laughed with me as I talked about my skiing journey, at a dinner this past summer.. and I finally wrote it out here:

I entered the Breckenridge Outdoor Education Center (BOEC) for the first time when I was 26 years old, and that was after about 9 years of having symptoms like loss of feeling, weakness, numbness in my legs, numbness in my hands, and when I was 20 years old, I was diagnosed with possible multiple sclerosis (MS). So at age 26, I entered the BOEC and I was still walking and I wasn't using any mobility devices. We thought that stand up skiing would really work for me. I had never skied before, and so we got all that we needed and we went up to the magic carpet (learn to ski area), and I stood there...... and it just did not feel right..... and then I started to move..... and it still just didn't feel right. And so after I would guess an hour trying this, my ski instructor, who was an intern, said to me, "Well Beth, you can continue to learn to stand ski, and we might get you up to Silverthorne (ski slope) by the end of your time here. Or, you can choose to go back to the ski office, and we can have you try the bi-ski and you can sit ski, and then we can have you go up to the top of Silverthorne right away." 

And so in that moment, I could either choose frustration, which was actually 9 years of frustration, not just that one hour, or I could choose to go up and try to be an athlete again. And so I chose the bi-ski. We went right to the top of Silverthorne, and for the rest of my time that trip, I continued to go down Silverthorne.

Four takeaways from me for this were: first I had the glimpse of the athlete who I defined myself as before MS; second I got to be outside, I love to be outside; third, I got to be with people (glad you are all here tonight); and fourth, when I was a competitive runner, I really enjoyed passing people, so I got to pass people again, and that was the greatest part. (Insert laughter)

How is the BOEC changing my life? It changed it in that one day and I continued to come back. The great thing that the instructors do is they pivot quickly: pivot from frustration to possibility, and they do it in a positive way. There was none of: "well, you can't do this and so we suppose you're going to have to do that." There was: "instead of doing this why don't you do this other thing because it makes a whole lot more sense to you wanting to be an athlete."

For many years I continued to come back to the BOEC and during that time, my health declined for about 12 years. And then a strange thing happened: I started on a medication that isn't supposed to help much, and it doesn't help many people, but it has changed my life, because back then I was using a wheelchair which was totally fine; I could hardly write (my hands didn't work). There were a lot of things I couldn't do. I was frequently exhausted and life was not easy. But this medication has changed my life and I think it is only fair because all the other medications that  work for other people did not work for me. So I started standing again, walking again, and about halfway through this time of learning to walk again... Jeff might not remember this, but I said to Jeff, "Hey Jeff, I want to try stand skiing again." And Jeff said "OK Beth, you can try that." (laughter)

This became an unplanned, unpredictable, 3-phases approach. It started with ski legs (phase 1), which are a frame that can be adjusted so you don't have to move at all so I felt like I was inside a bubble going down the ski slope. That was successful. And I should say that what I had been wondering in the process of doing this was, the feeling that I had when I first started to stand ski, what was that? Can I get past that? I didn't have that feeling when I used the ski legs, and so I still wanted to challenge myself and experiment a little more... and so I said to Jeff, "Hey Jeff, Do you think I could try stand skiing, but with the outriggers, like I used to, try to do?" And Jeff said, "Sure Beth, you can try that." (laughter)

And so the next year (phase 2) I went up with outriggers, being tethered, and I stood at the top of Silverthorne. And I felt that old feeling, but I could finally understand what that feeling was. It was the feeling of not understanding where I was in space, where my legs were relation to the ground. So my skiing instructor would have to call out the turns for me, and then they'd say "That was a great turn, Beth!!" And I would think, well that's great, but I can't feel that, I have no idea what I just did, but ok, I am stand skiing.

Fast forward to January of 2023. Phase 3. We went up to the top of Silverthorne with the outriggers, and I stood there, and this amazing thing happened. I felt where I was in space. And I felt where my legs were in relation to the ground. And when my instructor called out the turns, I could feel turning, and I could feel how that felt in relation to the ground. And that was the most amazing feeling to me.

And so my instructor, JR, at the end of that skiing lesson, where I had skied a lot better because I could feel what I was doing, he said to me, "You know Beth, I think your next step here is to try to ski without being tethered.” And this is a little bit of a joke.... you see, people know that I love to be tethered - it's my emergency brake...... (laughter) But I said "OK, fine, we'll try that."

My next ski lesson was with Nick, and so I told Nick that this was what we were going to do, we were going to try to have me do the stand ski thing without the tether. And as we were riding up on the lift,  he said to me "You know Beth, we wouldn't be having this conversation a year ago." And I said "I know, you're right, it's really strange isn't it, but cool? But, how are we going to get me down this slope without the tether?" (laughter) And he said "well, here's what we're going to do..." and it's this pivoting continually that the BOEC instructors do...  he said "I'm going to go out in front of you, and I'm going to ski backwards." And so I said "so you want me to tell you when there are people in your way?" (joke - laughter) Nick: "I'm going to ski backward and you're going to follow the way that I go."

So at the top of Silverthorne, I felt where my legs were in relation to the ground and all that. And then Nick went out in front of me and I followed him, down the top part of Silverthorne. And that's somewhat where I ended the year. I did more things too. The BOEC has meant so much to me because throughout this whole time, I don't have a condition that stays the same. It's getting worse, it's getting better, it's this up and down, and the BOEC has been an organization that has pivoted all the time, with whatever I needed. I do joke with some people in the BOEC office that if there's a competition on who's used the most equipment there, I win. (laughter)

To just wrap this up, the BOEC has been such a positive organization that never dwells on oh, you're doing worse. Instead, they say ok, we're going to make an accommodation here, and then you're going to continue being an athlete, and let's just go out and ski.

Thank you so much for having me here. I hope that you all get from this how much the BOEC means to me, and I'm not, of course, the only one, but it's been such an important part of my life over the past 20 plus years. Thank you very much.

(Go to the top of the post to re-read the Coda. Note that Nick’s comment in 2024 is that things are different, in a good way, this year. He never thought I would ski faster.)

Peace.

2023 MS Walk

Denver's MS Walk is May 6, and I plan to walk the walk this year by myself - meaning without my wheelchair, my walker, my Bioness devices, my walking braces, or either of my walking sticks. It'll be just me out there this year. I'm really excited about this. I am also truly grateful for all the people who have supported me in the MS Walk, over so many years, in whatever way possible. And I'm asking again, will you support this cause once again, knowing that money raised through the MS Walk funds things like research into the medication that has helped me walk again? You now know, by seeing and reading my story, that lives are indeed changed through the funds raised by this walk. Here is the link to sponsor me in the walk this year: https://mssociety.donordrive.com/index.cfm?fuseaction=donate.participant&participantID=225426

(Note: site is a bit tricky this year: Directions!! Click on the big orange “Donate” button, then choose an amount, or choose “OTHER” for a custom amount, then scroll past the “Payment” section and the credit card/PayPal boxes and fill everything that has a red asterisk (like name), then keep scrolling to the very bottom, and click on the box “Donate with credit card” – Please let me know if you have any questions!!)

If I were ranking my favorite years of my life, this past year would be one of my top years. After being told that I probably have MS when I was 20, after losing the ability to walk over the course of 18 years, who would have thought I would walk again? Who would have thought that in the 12 years in which my mobility has improved, that gradually I would stop using my wheelchair, my walker, etc.? All of those things were part of me continuing to live a happy and full life, and this is a new phase of life for me. It has been a year of firsts.

What exactly happened over the past few years to get me to this point? During Covid, physical therapy closed. Searching for some kind of replacement, I turned to swimming. I could sign up to swim at our local rec center, for 45 minutes, at 5am, when only 1 person was allowed per lane at a time. I noticed I could swim without needing a pull buoy to hold up my hips. I re-learned the flip turns I loved to do as a kid. I kept swimming. My core muscle strength improved exponentially.

Fast forward to this past October. I was doing a wellness challenge for work, where we logged exercise every day, for the whole month. I was walking using a hiking stick, but I tried to hold it in the air and started calling it my emergency brake instead of a hiking stick. My physical therapist (PT) remarked "I wonder if someday, (insert long pause), I just wonder.... if someday you will walk in here without any hiking sticks.... like in 6 months from now." Challenge accepted!! But why aim for 6 months when my next appointment was in just 2 months? He was a bit surprised when, 2 months later, I walked into my appointment with no sticks.

As I have learned to walk again, I have been amazed by my random discoveries, realizations, feelings, learnings, perceptions, etc. 

• I've discovered that when I stand and balance on both feet with my eyes closed (one of my exercises), that focusing on the feeling on the bottoms of my feet allows me to stand without swaying too much. 
• In general, I now feel where I am in space - I cannot adequately describe this except to say I didn't feel where I was in space until this past October. 
• I've learned, when going up or down stairs, that my tendency to want or need to grab a railing is because I lean too far to the side with my body, instead of keeping my body straight and using my legs. 
• The same thing can be said for walking - if my body goes too far to one side, I'm swaying to that side; if I work with this extra leaning when it happens, instead of fighting it, I'm generally able to correct the sway.
• A big perception I have had when walking is that successful walking means keeping my eyes focused ahead and not looking to the sides. If there are unexpected sounds when I am walking, my legs tend to tense up and my knees often lock. My knees also want to lock the further I walk. Walking, for me, means thinking of moving each leg forward in the same way, left and right, landing each foot on the ground in a way that allows continued forward movement while not allowing my body to lean too far forward. All of this takes a lot of brain power!!

It's not only walking that has changed for me this year. My mom and I went to our local mall where I successfully navigated an escalator. This was exciting - when Dave and I visited Lori in Boston, I had a lot of fun trying to find escalators.

I'm going to list other things from this past year that are new to me at the end of this - things I did for the first time in probably 30 years. Otherwise this entry might turn into a book. But it has been a great year. And I am truly grateful.

Again, here's the link to donate: https://mssociety.donordrive.com/index.cfm?fuseaction=donate.participant&participantID=225426  (see above for directions)

Thanks for your support over many years!!

Peace and Love, Beth

Beth's Momentous Firsts:

• Escalators! First time up and down an escalator (first in Denver, then in Boston)
• Hawaii! First time walking on a beach, into and out of the water, without Bart
• Bye Bye Bart! First trip without Bart the walker (Boston)
• Bart! Currently has gone into retirement in our basement
• Track! 400, 800, mile on the outdoor track, no sticks
• Steps! Up/down 1, 2, 3, and 4 steps without touching a railing
• Home! Walking with and without holding cats, without leaning on walls, counters, no sticks
• Standing! With eyes closed, no sticks: 1 min; eyes open left foot only 30+ sec, right foot only 30 sec
• Choir! Standing for a choir concert
• Church! Processing into church with our church choir, walking up to read the lesson, no sticks
• Skiing! Off tether when stand up skiing, got on the lift myself, got off the lift with some help
• Hiking! Rocky Mountain National Park, Golden Gate State Park, Castle Rock, Bluffs 
• Neighborhood! 1 mile, left sticks at home

Full Circle

My hands 

Have served me well

My hands

Found their way over piano and flute keys to make beautiful music

Brought music into my soul

Left those keys when there was an unexplained loss of feeling in my fingers  

My hands 

Carried coffee cups through parking lots, into work

Reached out and steadied me by touching walls when I lost my balance or tripped

Held a walking stick to steady me instead of holding a coffee cup... the day I realized I needed a new way to walk into work, without a coffee cup

My hands

Pushed a baby stroller when my daughter was young, as a way to transport her safely while I walked

Gripped a walker and pushed on the walker’s brakes when I needed more balance than one walking stick could give me, and to transport my very young daughter who liked to get a ride

Learned how to transport me via wheelchair when a wheelchair became the beautiful way I could live my life, including with my daughter sitting on my lap

Continued to grip walker handles, sometimes only for a few steps and many times when it was more about holding my body up than about giving me balance

My hands

Maneuvered crutches when my teenage daughter coaxed me to take a few steps away from the wall, into the large sea of the floor, to convince me that I no longer needed to hang onto every wall

Gripped walking sticks when I transitioned away from my walker because I had found my balance again

Alternated holding one walking stick when I transitioned from two walking sticks to one

My hands

Have reached for water, reached toward walls

Have pulled me through water, pulled me toward walls

of the swimming pool as I strengthened my core over the last few years

My hands 

Now hold walking sticks in the air as I challenge myself to keep walking without letting the walking sticks touch the ground

Now want to reach out as a matter of habit when I walk around my house

Now no longer need to reach out around the house because I have found my balance

My hands

Are unsure what to do as I stand without assistance

Are unclear what to do as I start to navigate the world without assistance

Find themselves awkwardly dangling themselves in the air 

My hands

Wonder if they someday will carry coffee cups across a parking lot

My hands

Have returned to those piano and flute keys because I can feel my fingers again  

Now find their way over the keys to make beautiful music 

Bring music into my soul 

My hands

Bring

Peace

Nature in Boston

Until this past October, I hadn't spent much time in Boston and it was somewhat of a mystery city. Then my daughter got admitted, with a scholarship, to Boston Conservatory. At that moment, when she was admitted, it became clear that no other school was in the running - this was the dream school. She and my husband went to visit to confirm she would like Boston, and done!! In September, off she went.

In October and again in May, I was able to visit her in Boston: in October with my mom, and in May with my husband. While we were visiting her, we also got to see parts of Boston, either with her when she had time, or on our own. I have learned that Boston is full of young people (college central), must be the doodle dog capital of the world, is abounding with different coffee cafes (not just Starbucks), and much more. Its subway system, which people call the T, makes Boston a walkable city - no need for a car. So while Boston is expensive, at least we didn't have to drive.

We walked so many places - from near where Boston Conservatory is, to the North End (Italian), the South End, Cambridge (right next to Boston), and more. Here are some of my favorite places where we walked through nature right in the middle of the wonderful city.

Parks are always my favorite - anywhere. Next to each other right in the middle of Boston are the Boston Public Gardens and the Boston Commons. One of my favorite days was spent walking through the Boston Commons, then up a huge hill to the capital, then down the hill and through the winding paths of the Public Gardens. In October, the leaves were changing colors. In May, green was everywhere. The Public Gardens have little boats called "swan boats" that take people around a somewhat small body of water in the middle of the park - there are pretty views of the garden and the outline of the city from the boats. The gardens are prettier in the spring - there were tulips everywhere in May. Even though it was cold due to the obnoxious wind which seemed to follow us from Colorado to Boston, the tulips didn't seem to mind. They were arranged in big blocks of colors - one area of red, another of white, another of yellow, and so on - perfectly set in rows which almost lined the park paths. In addition to all the green and the tulips, many of the trees have flowers in May - it is a big contrast to Colorado where things are still pretty brown in early May. A place where everyone with kids seems to go in the Public Gardens is a spot with a bunch of duck statues lined up from tallest duck to shortest duck. Kids play on and around the ducks, which are famous in Boston, and seemingly every kid's parents take many photos of their kid(s) with the ducks. Not to be left out of the fun, adults also want their picture taken with the ducks. As I was trying to set up a selfie with the ducks, someone volunteered to take my picture with them. I guess I can check that box - picture with duck statues!

While the Public Gardens has a path that winds through various views of water, over bridges, by the ducks, and so on, the Boston Commons has what seems to be more of a main path through the park, with a few offshoots for things like a softball field, tennis courts, statues, and gazebos - it feels more local. In May, probably because we were at the gardens on the weekend, there were food carts, some entertainment (a guy singing while playing a number of instruments), and a lot more people. People seemed very happy to be enjoying all that the parks had to offer.

Another area we visited briefly in May was the arboretum, near Harvard. It's an area of many different types of trees, flowers, things that are green. It's peaceful - next to a road, but down so the noise of the road falls away. We spent the morning in the arboretum on our last day in Boston, taking the T to a location nearby. There are so many paths to walk, and we do want to return to explore more. It's a place where one could spend a whole day and there are maps showing where things are located throughout the park. It was a bit rainy when we were there, but our time there had the least amount of rain of the day, so we could casually stroll through a paved path one way, and a mulch path on the way back. When a person needs calm, the arboretum is a great place to go. In Boston, I tended to say that "name that calm place" would be an excellent place to read a book, and we joked that I could come up with a book-reading site ranking system. We also joked that I needed to return to these places with my books instead of just talking about it.

A garden area very near to the Boston Conservatory campus is named The Back Bay Fens - it's basically on the way to Fenway Park (historic baseball stadium) from campus, and we found ourselves there a few times. It's a community garden where different people seem to have small plots where they can work and spend time, again right next to a busy road, but somehow the noise of the city fades. Some plots are beautiful. Other plots, nearer to the back, look like they have potential. I wonder what these small plots are like in the summer and imagine they are beautiful.

Lastly, there's the beach. While October and May are not the best times to swim in the ocean, the beaches are still there. We visited a beach in May. It was a cool day and almost no one was there. The tide didn't change much, so there were no huge waves to see, but instead it was a calm scene. As a kid, I remember collecting shells the few times we visited a beach and collecting random shells remains something I love to do. Since there were so few people, it meant that all the shells were there for me to explore. I did come home with a number of them. One of the great things about using walking sticks is that you can poke at things like shells, or move shells on top of the sand, to determine whether they are worth picking up.

The ability to get where I needed to go in Boston was critical to how much I enjoyed exploring the city; being able to spend my energy walking around the parks instead of walking to the parks was important. The subway system (the T) there is impressive. Not many subway stops were missing an elevator which was great.  In addition, like what I experienced in NYC, people in Boston did not feel the need to comment on Bart (my walker), my walking sticks, my ability to climb stairs when an elevator was absent. There were no offers of prayers for me by random people, and when help was needed, it just happened, without a production, without a grand ceremony. Bonus: people actually let me push buttons that open automatic doors instead of leaping in front of me to hit buttons. There was a natural feeling to it all - when at a restaurant, there was a natural flow to where my walker would go - it was not a big deal. I didn't catch people looking at my walker - people looked at me. It was very different than other places, and I loved it. I got to be fully independent. 

I'm thankful to my daughter for showing us how to navigate Boston - things were easier when she was with us. We did get to go on the swan boats with her, see the tulips with her, and she introduced us to the Back Bay Fens. Watching my daughter comfortably navigate the city made me feel she really does belong there. I'm excited to go back to visit, to see some of these places again, and to find new places to explore. Boston seems to have endless exploring possibilities. And in May, there are flowers on trees everywhere - it's fantastic. 

Peace.

Easter joy

There are some things you never forget - random things that stick in your mind forever. 

One Easter morning when I was in college, I went on a run. I was so excited to go on this specific run because I _could_run at the time, and I wasn’t always able to run in college. 

It was a cool, clear morning, and I was headed around a very gradual turn on a country road. 

A car drove by me and and as it passed me, the woman who was driving yelled out in the most cheerful voice “Happy Easter!!”

It made me smile. And whenever I get to Easter, that memory always comes back and makes me smile. 

Happy Easter - may you smile and feel joy!!

Peace. 

Finding Unexpected Joy

I'm resurrecting my blog!! I haven't written regularly in some time, but lately I have a lot of thoughts going through my mind, and then a few people said they missed my blog.... so here is the first entry of my resurrected blog.

I hesitate in writing this specific post because it is very personal, but I might as well go all out in my blog's resurrection. I suppose in writing this, I hope there is some off chance that someone may see this content and realize there is hope for them, or for someone they know, because I have been told that my problem is a relatively common problem, but that most people quit before they realize they can be helped. It has been tough for me mentally, realizing that if this had been addressed years ago, I could have had much different and better experiences in life. But at least I know now.

The truth, or the problem, is that I have always had extreme anxiety when performing, whether it be piano, flute, singing, public speaking, work presentations, church singing solos, and any other situation when I am doing this stuff alone and not with a group. When I am part of a band, a choir, a group at work…. then I don't have very much anxiety. But alone, I can freeze completely right before I am to begin, or I can freeze in the middle of something, or I can shake, and even if I am not frozen or shaking, I still feel like a deer in headlights. 

It is also true, and a definite problem, that throughout my life, I have been told that by doing more presentations, performing more, and being prepared to present something or perform something, that naturally the freezes I have will eventually go away. But over the course of my life, these freezes haven't gone away and, in fact, they have only been getting worse - the more I present, the more I perform, the more I do these things, the worse they get. Add heart palpitations and why do I continue to torture myself in this way? 

Presentations and performances have always been things I challenge myself to do, and they have never been fun. I've been following the thought process that if I volunteer enough, I will get better. And I don't like to quit either, so I shake, my voice shakes, my mind goes blank, my heart races. And then  I engage in a negative post-presentation self-destruction "technique" called performance bashing that only serves to fuel the same anxiety the next time I have to perform or present something. 

But there is a good ending to this - or I anticipate there will be a good ending because someone finally told me these experiences aren't normal and that there is help!! I think the kind of help I am getting is relatively new - I don't recall ever hearing of this type of thing growing up, and I think if it had existed, someone would easily have pulled me aside and talked to me about it. 

So how did I discover help? I have been taking voice lessons for a few years,  and once mentioned my freezing and nervousness to my voice coach. Without pausing, she said, “Oh, you just need to talk to Jon - he can fix that.” And that began a new journey, one of acknowledging who I am, identifying triggers, looking into the whys of these triggers. But it isn't quite as simple as "Jon can fix that," because I've been doing the same thing for my whole life. Instead of a quick fix, I've been on a deep search for answers, for reasons. It hasn't been easy; at times it is emotionally intense and draining, and yet going through this has also been accompanied by happiness.

How do we break cycles? In my case, I'm working through stages of dealing with anxiety. I'm recognizing that when my mind goes blank, my brain thinks I am in danger and gets stuck there. As a start, I have to break that danger feeling; if I can do that, I have to breathe. If I can breathe, then I can think.... and so on. 

And while I work on strategies outside of presentations, when I am not frozen, the hope is to apply those strategies when I get to the frozen state, or to stop myself before I get to being frozen.

Why has this been emotionally intense and draining? First, I'm almost 50 - I've lived my whole life using strategies that didn't work, now realizing this could have been stopped at a much younger age. It's been many years of self-torture that I haven't enjoyed, and along with that, the joy that comes with performing has largely been absent. It's also been emotionally intense and draining because I want to know why - why am I like this, but not in all situations? Why do I have these problems? Did something cause this? Yes and no - it's been an intense search. And I am grateful that I have been able to do this searching.

I have also found joy in performing with a group. While I did have a bit of joy in the past, it hasn't been like what I experienced recently, when all of a sudden I was performing with a group and realized I haven't had this much fun performing - that was its own intense moment.

In writing all of this, acknowledging the somewhat painful process of finding a way to joy, I wonder how many other people like me are out there? I've had this since I was a kid - I assume kids out there today have this same problem, and they are being told to just keep presenting, just be prepared, and eventually everything will be ok. What if someone realized it isn't going to be ok to keep doing the same thing again and again; what if someone realized this in kids struggling; what if those struggling kids got help and found joy? What if someone realized the teenager in speech class needed more than repeated speeches to get better? What if someone realized the college student who struggled with presentations had given plenty or presentations, so their nervousness was due to something else that could be fixed? 

I don't work with kids much at all. Maybe someone will read this, see a kid, a teenager, a college student, or someone else who is struggling, and can reach out to help them. Maybe this can lead to other people being helped through anxiety. In this journey, my greatest hope is that others get help with anxiety as kids, teenagers, college students... at younger ages, so they can experience the joy I have found at almost 50 years old.

Peace.

MS Walk 2022

It is already the time of year when I am getting ready for the MS Walk!! The yearly MS Walk is May 7 in Denver's City Park – it’s in-person again (or virtual if one wants to do that).

Here is the link where you can donate to support me in the MS Walk:

https://mssociety.donordrive.com/participant/147676

Money raised goes to research toward a cure for MS as well as for programs for people with MS, their families, and friends.  Every donation, large or small, helps!!

My life with MS since the virtual 2021 MS Walk:

I have kept swimming – in fact, in 2021 I made a goal to swim 100 miles and I reached that goal in December. I’ve been told I stand and walk straighter now, and that is from swimming. I also got back to skiing after a year off, and this year was able to ski, standing up, for half-days which was exciting. My ski instructor, who has tethers attached my skis to help me ski, told me that I was making my own turns, even though I couldn’t feel myself making my own turns. I do remember another time, when I started to be able to lift my foot again, randomly, and I remember not being able to feel that at first (but now I can), so this seems like a similar thing. Maybe next year I will feel that I am making the turns myself. There is always hope.

 And this year, additional humor is helpful:

• I’m not getting younger, part 1: While simply taking off my ski boot one afternoon, my right upper arm made a loud “Pop!!” Sudden, excruciating pain followed the “Pop!!” and did not go away, but I made it home even though reaching for the steering wheel seemed to correlate with pain and tears the whole way home. Yes, it is true – I skied all day with no problems, but it was the taking off of the ski boot… “Pop!!” I am slowly improving and have been told I have an “unstable bicep.” This has nothing to do with MS except that I do use my arms more than the average person to compensate for my not-as-strong-as-I-would-like legs.
• I’m not getting younger, part 2: After 2 years of right knee pain, I went to see a doctor about that pain, had an MRI, and was told my right knee is not in good shape (that’s the short version). The good news was that physical therapy could help!! Recently my physical therapist said “Your right quad is not strong enough for you to be able to bend your knee when you walk.” Most people know that using the word “not” with me is probably just going to result in me trying to prove them wrong. So, in true Beth style, I have figured out how to walk with a bent right knee, and my knee is feeling much better. This does have to do with MS – I continue to get stronger.
• I’m not getting younger, part 3: it’s a story of a cat who wanted food and was incessantly meowing, so I tried to hurry to get the food. Result: the iPad escaped the counter and landed on my right foot. Ouch!! Did the cat care? Of course not. He is not a small cat and was still hungry. The iPad was fine, the cat was fed, and I survived. This has to do with MS in the sense an iPad landing directly on my foot caused my foot to have spasms  – a symptom of MS – for a long time.

 Yes, I am still taking the miracle walking medicine that only seems to work really well for a few people with MS – and I am one of those people. My Bioness devices which have helped me walk a lot, over many years, aren’t used much – I only need one for my right leg now, and only when I have to walk a long way. I’m mostly walking with nothing (around the house), 1 or 2 hiking sticks, or my walker. I suppose my wheelchair is a bit lonely.

More walking in Boston!! Lori got a scholarship to the Boston Conservatory to study musical theatre and started this fall. Dave helped her move, my mom and I visited her in October, and Dave and I are going visit her in late April/early May. Boston is a great city to walk!! In October, I spent a whole day walking through the parks there – it was beautiful. I have wanted to spend a whole day just walking through parks for a long time. From our Boston trip, I know that I can walk far, day or night, wind or no wind, up and down hills. I enjoyed it so much.

Treatments for MS have continued to improve over the years, and I still hope for a day when there is no MS. In the meantime, I am incredibly grateful for the last 10+ years where I have gone from wheelchair, to walker, to hiking sticks, to no assistance; from leaning to standing straight; from having trouble writing to being able to write again; and much more.  

Love and peace to all.

Beth