Wednesday, August 21, 2019

Disappointed

"I'm disappointed."

"So you're disappointed in me then."

"No. I'm just.......... disappointed."

"Then you have to be disappointed in me because you can't just be disappointed."

But you see, I am disappointed. I'm disappointed that church isn't to you what it is to me, and thus you refuse to go.

I understand that you say you will go when someone comes back. I don't know if that is really true, but I do believe that when the someone comes back, you feel that the someone understands how you feel about religion, including your doubts. That is the only part of all of this that does not disappoint me.

I'm disappointed because at some point, or maybe things built up over time, but at some point, it seems that you think that church=religion.

I'm disappointed that you won't go to church because you have large doubts about religion right now, which is totally normal, but it seems you have equated these doubts with attending church. So many have huge doubts. Basically everyone has doubts at some level.

Church does include religion, but you can listen to the sermon and always interpret it in your own way, and that interpretation actually doesn't have to be religious. You can apply sermons to your life, not at all in a religious way.

I'm disappointed that you don't realize that church is also community. Perhaps you do see it as community, but if you truly felt included in the community, you would want to come to church.

I'm disappointed that you don't see church as a way to serve the community, in a non-religious way. Perhaps you do see church as a way to serve the community, but it is not enough to get you to come to church anymore.

I'm disappointed that church doesn't feel like a really supportive place for you, because it is that way for me and I wish everyone would have that sense of church. Did you feel ignored? Did I ignore you? I do feel like there were times when everyone was talking to each other, and you were there, and you felt ignored. I am disappointed that you were ignored, because if you weren't ignored, church is still a place where you would want to be.

I'm disappointed that church isn't close to family for you, that you don't realize that our church family would do pretty much anything for you, that our church family loves you very much. Perhaps you do realize this, but it still isn't enough to get you to come to church. Perhaps we are that family but some people are so annoying to you that you can't stand to be around them. If this is true, then I am sad about it.

I hope you are able to find other ways that create the atmosphere that church creates for me. Perhaps even a different church could create the atmosphere that I have described here, but for you.

Community. Service. Support. Family. Love.

I am disappointed that you do not feel these things at church, or at least not strong enough to come to church anymore.

I am disappointed that all of these things are not as existent in society today as I feel they once were.

I am disappointed that as a member of the church, I feel like I, and the church, somehow failed.

And I hope that somehow there is learning in here, but I'm not seeing it now.

Peace

Saturday, June 29, 2019

Journeys without wheelchairs

Writer's block... I've attempted to write this a bunch and here it is - maybe someday I'll put all of this together in a book and rewrite much of it.

During late spring this year, I faced my fear of flying and we traveled (two separate trips) to New York state to see my cousin get married, and then to my awesome alma mater, Kenyon College, which is somehow always a magical place for me.

Before we left, I had several conversations.  I told my husband that I really couldn't imagine wheeling through the airport when I could walk pretty far, and I hate sitting for any period of time. I told my physical therapist that I wondered if I could do trips without my wheelchair, "Nemo." I told a few other people similar things. No one said that I needed to take my wheelchair and it was suggested that I really wouldn't know if I needed it until I tried. And so for the first time since I have had Nemo, I left him at home and made my way through airports, retreat places, a mall, more airports, the Kenyon campus, hotels, dorms and dorm rooms, restaurants, bathrooms, and more airports - without Nemo. I survived. There were some interesting times. And I am glad Nemo stayed home. Here are some highlights of the trips.

The journeys began at the Denver airport. Our family of three first took an overnight flight to Newark. I hate to fly - it's my biggest fear. Flying overnight worked because I took medicine which calmed me but also made me very tired - so this method works best if I am flying when I should also be sleeping. Walking through airports - it's a lot of walking - the Denver airport is under construction, so there was a lot of walking there. Security - that should be a different blog. But know that no one who has a walker will successfully blow up a plane because people with walkers undergo more security than anyone else.

We made it to Newark without me pushing the flight attendant button to ask if the slight turbulence was normal (what I like to do on airplanes) and without me giving anyone next to me the death grip as we took off. I walked onto the plane, and I walked off the plane, without any assistance, which I could do because I didn't have to use Nemo. And then we had to go to another gate...... a gate that was a long distance from where we were, and my sleep medicine was still working well. I remember walking, and walking, and walking, and being in a complete fog. And then I was told we were where we needed to be, and I fell asleep with my head on my walker, zonk. I didn't wake up until it was time to get on the next plane. Got on that plane, fell asleep, woke up when we landed (lucky flight attendants didn't have to deal with me pushing the button since I was asleep).  More walking! But my medicine had worn off so I was awake.

And to that point, I had walked a lot, much of which I was in a zombie-type state. But Albany - more steps - to the car rental! Then breakfast, and then we were off to the beautiful Catskills! That weekend was great. Really Nemo would have been in the way. Where there were steep hills I took a car.

And then... "Hey, Beth? It seems your walking stick broke." What?! Somehow it broke. I took this as a sign I shouldn't be using them anyway because my knee had been injured and I had been told to cut back on using them. Bart (walker) went everywhere from then on, that weekend. We had a lot of fun. My cousin got married. My daughter sang a song at the wedding. We ate great food. We danced to great music. We attended a book club. We stayed in an awesome cabin. I had no trouble navigating without Nemo. We made it home. Lots of walking. I think we got into the furthest gate from the parking lot in Denver.

Next trip. Kenyon! Another overnight flight. Continued construction at the Denver airport. More observations that people who use walkers will not be able to blow up planes due to high security. Bioness devices do not make it through metal detectors and are tested to make sure they don't have bomb-making stuff on them. Also, with Bart I haven't taken the moving walkways. But I get more exercise by not taking them - I keep telling myself that to make myself feel better... as people on the moving walkways move past me while just standing still.

We took another overnight flight and this time went first to Washington DC, where I took my nap, and then after 3 hours flew to Columbus. I remember the Columbus airport being much smaller! But again, Nemo would have been in the way. We rented a car and drove to Kenyon, registered for the weekend, and figured out where the electric scooter they had for me was. But I never went to pick it up. Since it was alumni weekend I could drive certain places and then walk.

And I did walk. It had been 4 years since I had been to Kenyon, and I parked in the wrong place, so we had to walk further when we first went to rehearsal. Lots of construction was there - I figure I got to see the construction up closer than most people saw it that weekend since I parked right next to it.

We also sang, and sang, and sang more. We stayed in the dorms and I used the dorm showers - that was an adventure. And I visited people - I loved that - my college roommate, my first college advisor, my running coach, my Economics professor, my choir director (good thing I had missed getting a picture with him, so I got to meet with him again and visit for a bit and get a picture), a good friend who also went to Kenyon. I missed my doctor who was in Colorado while I was in Ohio, and then there was a tornado so I didn't get to see my Statistics professor because he had to help his son whose house got hit. We drove on all of the old running routes I used to take. It was beautiful. We got out of the car. We took pictures. I have great memories of those routes.

While visiting with my Economics professor, I talked about the time I had spent, while in college, going to medical appointments. And I realized that I had never been back to the place of all those appointments. So we had a bit of extra time and we drove to the Ohio State University medical area. And then I had to find the Wendy's where I used to park when going to appointments because I refused to pay to park at the medical center. It took a while to find it, but the Wendy's is still there. I have memories of walking to and from that Wendy's, the last time being when I was diagnosed, and the walk back to Wendy's feeling like a dreaded finalization of what had been happening for years. Driving through this area was emotional - feelings surfaced that hadn't for years - of how many times I had to go and have tests which brought no answers - feeling at some points that many did not believe me while knowing that my best friends, my family, my Kenyon doctor, and my running coaches knew something was wrong. I am very glad I went back. I won't go back again. I learned that the neurologist who diagnosed me, and who I liked, has retired. It has been a very long time.

And then, one more plane trip. One more dose of medicine to calm me and make me tired. Since the last flight was a direct flight, my mom picked us up and drove us home. In the air, I looked at my daughter next to me. She fell asleep and looked so peaceful while I took sleep medicine and was fairly wide awake due to turbulence. I wish I could fly like she does!

Arrival: Denver! And........... farthest gate! I turned on my Bioness. Beep beep beep! Red light. The Bioness on the right side wasn't working. My right side is weaker by a lot and it didn't get any help. My daughter had a rehearsal and she wanted to get there so she wanted me to hurry, and all I could do was drag my right leg along, getting slower, and slower, and slower... "M'aam, would you like a ride?" A nice person asked me that. I tried to politely say no thank you. See, this is my battle and I'm not taking help. We made it to my mom's car and I was exhausted because of dragging my right leg.

Finished! No Nemo! I made it! I learned that airports involve a lot of walking and I will walk more than others since I can't do the moving walkways. I learned that I will have challenges everywhere along the way, and that most of these challenges are not visible to others. I also learned that these challenges used to be impossibilities. In the past I haven't been able to get on and off a plane by myself. I haven't been able to stand for extended periods of time. I haven't been able to use a regular toilet without needing bars to grab. I haven't been able to curl my hair while standing. I haven't been able to do as much as I do now. These trips showed me how far I have come and they showed me that I didn't need to bring Nemo. So I'll keep pushing forward and exploring new possibilities that I never really thought would be possible. Never say never.... "suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us." Something like that.

Peace.

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):
https://secure.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=30400

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.

Friday, March 22, 2019

It's just one toe!

Note to readers: This is mostly supposed to be a funny entry with sarcasm everywhere.  And, this is not a good post to read while eating.  You have now been warned.

Over a month ago, I noticed my little toes on both feet hurt a bit, like they had rug burn.  I attributed this to my daily activity of getting up from sitting on the rug in our bedroom, in bare feet, as a daily confirmation that I still can get up.

But then the left foot felt fine and the right foot hurt more. We went to a store and I was wearing my Ness devices on each leg - they shoot signals for me to lift my toes. All of a sudden I realized pain was shooting from the right Ness between my little toe and the toe next to it. "Let's go home! What is happening?!"

Upon our arrival home, I tore off my right shoe and sock, grabbed my foot, and looked. Wow! Yikes! What in the world was going on with my little toe?  It had a thing between it and the next toe - a big, white thing. Internet research confirmed it was a blister although none of the photos looked quite like it.

Two days later I called the doctor I see every six months to check out how well, or not well, I am doing, and to show him that I am still altering the course of whatever disease I have despite the fact that Ampyra, the main medicine I take, is not supposed to do much. Apparently, I'm a science experiment.

A week after I phoned my doctor, I saw my doctor. This thing looked pretty much the same as when I called, even though I had soaked my foot in Epson salts again and again and again... He looked at the thing and declared it to be a blister, and asked me to come back two weeks later, after wearing different shoes so my toes didn't rub together, so I could see him and another guy who works with him.

By this point I had stopped using my Ness devices because pain constantly shooting between my toes is not my idea of a fun time. On the treadmill at physical therapy, without my cool Ness devices, I slowed to 2.2 mph for 10 minutes. At about 9 minutes it felt like I was dragging my right leg along for the ride - and it looked that way, too. By 10 minutes it was more of a slow, lopsided, semi-left-footed turtle hop. I should have video taped it.

Two weeks after the first appointment, I returned to my doctor so he and another doctor could look at the thing.  He took one look and said, "that doesn't look like the same thing!"  The other guy there nodded in agreement and told me I needed to pad my toes to prevent them from rubbing. Then we all looked at Internet pictures to see if one looked like my toe, and my doctor thought the thing now was a wart covered by a blister... and you should know that the Internet pictures of these things are not pretty.  Avoid eating when looking at things like this.

And also, I asked my doctor about my knee which hurts. He had a theory about that, and that a knee brace would help. But I thought about that and determined that assuming the thing goes away, I can't wear a knee brace and then cover it with a Ness device. It wouldn't just be a bad fashion statement.  The Ness signal just wouldn't get through a knee brace. That's a definite problem. So I left with pain jabbing into my right toe and knee pain on my left side. I was not happy!

At home, I wrapped my toe in gauze and then looked at the toe plus gauze sticking out sideways from my foot like it was an extra toe.  And then I tried to put on a shoe.  Ouch!!!!!!!!!!!!!!!  I removed the shoe, the gauze, and decided to wait to see what the next doctor said.

A week and a half later I saw a dermatologist. He was awesome. He took my toe and looked (why would anyone want to be a dermatologist and look at things like this all day?) and quickly knew what it was.  Millions of these are diagnosed each year.  Lucky me!  He sees them daily.  Think of a sugar ice cream cone.  What I have, still covered by a blister, is a corn, but it is shaped like an ice cream cone where the pointy part is on the inside of my toe and it feels like someone is repeatedly jamming a needle into my toe.  And along with the corn, I was told I have a slight bone abnormality on that toe. Thanks for those genes, Dad!

So the cure?  He told me it will go away on its own in "a while."  And so of course I asked, "What is a while?"  "A month or so, if you get your foot measured, and get new shoes so your toes are not rubbing against each other, and toe separators to help with that."

The next day I went to the specialty shoe store where they measured my foot and showed me seven different types of shoes.  Two were ok, although I have an average width foot that is now in a really wide shoe so my toes can move.  The other 5 I cannot believe anyone would buy - ugly!

So here I am.  I feel like I should somehow be thankful since a few other things have happened this week to other people, and these other things are much worse than my toe problem.

And yet here I am, with two new pairs of extra wide shoes, toe separators, toe pain, knee pain, and my husband asking why I don't write a blog about my March Madness picks. I told him my blog is about MS and faith.  He said I could write about my faith in my March Madness picks. That is not going to happen here (I don't have a lot of faith in them - it's not been a good start!).

I guess I do have faith that somehow God is with me now, but really God?  Ha ha. I could use some divine intervention.  So could my three friends who are going through different things this week.  God is with them also.

Really, at the end of the day, what I have realized is that one little toe can certainly cause a lot of trouble and change everything going as planned, to everything being in complete disarray and causing pain to a person who has a low tolerance for pain.

Peace.  It's here - somewhere. Hold onto it for me.

Tuesday, February 12, 2019

What would you do if you weren't afraid?

This question was posted in our kitchen at work. I initially thought if I weren’t afraid then I would enjoy flying instead of white-knuckling it through flights and asking flight attendants if the turbulence is "ok." But I was about to go skiing when I saw that question, so my thoughts transitioned to, if I weren’t afraid, then how would skiing change?  If I weren't afraid of falling while skiing, or afraid that I wouldn't be able to stop myself from charging into a tree or worse... If I weren't afraid, how would I ski differently?  And I knew that if I weren't afraid, I would find myself skiing with confidence and without hesitation... I wouldn't slide out, gasp, slip, and flop to the ground when I started skiing faster. I would simply continue to ski with the same way I ski when I am not going fast. With that in mind, I hit the slopes.


I still sit-ski for half of the day when I go skiing - in the morning, when there is the most potential for fresh powder. And that is when I am the most afraid - sit-skiing on my own. This year I thought a lot about not being afraid. On my first time down the slope, right before I started, I thought "What would you do if you weren't afraid?"  And I made the turns. With each turn, I thought of pushing past a force that was there, but that I could push past. I could correct myself when I started to slide as if I were pushing fear to the side.  Skiing got easier. There was a rhythm to it.

I have noticed that my balance is better this year. I have a new way of skiing which is somewhat like driving, somewhat...  When I make a right turn I push with my right foot and leg into the ski bucket, where my feet rest, and it's like a pedal - somewhat like driving (sort of like if I were flooring it as hard as I can with the gas pedal).  And when I make a left turn I push with my left foot and leg in the same way. To do this, I had to get past being afraid - to try something new, I couldn't stick with the old.


In the afternoons I stand up to ski.  Last year we spent the afternoons figuring out the best way to get me to be able to ski while standing up.  This year we have a system. Last year we tried to figure out a way to get me to move through the ski line while standing up, and it was impossible. We kept trying different ways to do this.  None worked well until the last day of skiing, when my instructor that day asked why I didn't just go up the lift in the sit-ski, have someone bring the ski legs (equipment) to the top, and then have me get out of the sit-ski, stand up to the ski legs, put my skies on, and then ski down?  Brilliant! And that is what we have done this season.


This season, stand-up skiing is about skiing to the point that I am sore the next day. At the beginning of a running season, there were always times, like after the first meet, when I and most runners would get very sore legs and it was awesome because then we knew we had pushed ourselves. But since I did those races, my legs have never been sore.  It has probably been close to 25 years since I experienced sore leg muscles.  But this year, on my first time down the hill when standing, I could feel my leg muscles working.  And the next day those leg muscles were sore.  I wanted to tell everyone I knew how excited I was, that I had finally been able to push myself to that point.  The second day this season that I skied, I tried to use my legs more and not lean on my shoulders.  I pushed more.  By the time I came in from skiing, my legs were done, in a good way - I wore them out.  For the next few days after that, my legs were sore like I remember them being after those first races of running seasons. But the next day I skied I didn't get sore.  Bummer.


This past weekend I skied again and we removed a strap that went around my back to hold me up, just in hopes I would be sore again.  I asked if I was the only one with such an interest in getting sore and my instructor laughed and said, "I'm pretty sure you are the only one with that goal."  Excellent.  But, I didn't get sore. And so I know that at least I am getting stronger which is a good thing.

On each ski lesson I have, there is the main instructor plus one or two volunteers. This year a few of the volunteers have skied with me previously.  One remembered me well.  Near the end of the day, he said "Beth, you just seem stronger than what I remember." And he is right. Much of what has been happening to me involves increases in strength that are hard to describe. There are times when I catch myself when walking and keep going, where in the past I would have fallen. I used to walk through our house sideways, gripping walls. Now I walk forward, with a hand near the wall in case I need it for balance. But each change I consciously try also involves confronting fear - confronting being afraid - and trying to move past it.

Yesterday was the day, 26 years ago, when a doctor told me that I probably had MS because of two small lesions found on my spine.  I asked him if I should just lie down and die. He told me why I shouldn't. And I was afraid, but less afraid then before I knew this, because there were no answers prior to knowing. And though these 26 years have not been easy, my doctor was right. Laying down and dying wasn't a good option. Whatever I have is unpredictable. Uncertainty can cause anyone to be afraid. I never know what will help me, or where my path will go. But I feel so fortunate, on this day, to be able to push forward, pushing against being afraid, and in pushing, finding confidence and strength I didn't know I had.

Peace.

Friday, December 28, 2018

Ending 2018

This past year has flown, but so have many years before it. And because it has flown in so many ways, this blog has not been as active as I would like. This blog is meant to tell my journey as I navigate disability, change, and faith.  Several times I would start to write something and those writings are sitting as drafts because for me, they didn't go anywhere and I found them boring.  But here we are at the end of 2018 and even if boring, I can attempt to summarize the year.  Quite a few people have said I should write a book, and I have thought that if I knew how to download the contents of this blog all at once, that would be a start to a book - about my life, and mostly the life-changing things that have happened to me in the past almost 8 years...  8 years that I never saw coming, but I did cling to hope, and these last 8 years have been about answers to that hope.

This fall I had more breakthroughs, which is intriguing because I really thought that the fall of 2017 was my breakthrough time that couldn't be matched, and then it was, this fall of 2018. Things that change for the better in my life may or may not be able to be seen by others.  People who haven't seen me in a while usually react to seeing me by noticing how straight I can stand. Standing that straight feels natural now.  It didn't used to feel natural - it started to feel natural this fall.

The big thing, and maybe the hardest thing I have done in my life, happened this fall.  I bought walking sticks and have been learning to walk with them. One Friday, I just decided I needed something different, and on Saturday morning I started calling places to see if they had walking sticks.  I have tried versions of crutches in the past.  Actually crutches that work for me are the ones that you stick under your arms.  For a long time I tried using them but would always hang onto something in addition to walking with them, until one day my daughter decided I was going to cross a small distance on the floor that didn't have anything on which I could hang.  I remember the 6 steps that I took.  Imagine when you learn to swim and the swimming teacher makes you cross a distance of water without clinging to her.  It's like that. After the first step, I panicked and exclaimed, "I can't do this!" And my daughter declared "yes Mom, you can, it's just a few steps, you are fine." "No, I'm not (panic in voice), I'm going to fall." "No, Mom, I'm right here, you are not going to fall."  And then I made it!  And without this happening, there would be no walking sticks months down the road.

So, back to the walking sticks... a guy who worked at a store that sells outdoor stuff convinced me that their walking sticks might work for me. I went into the store and discovered a whole section of walking sticks! Never mind that they are for hikers. The very, very nice guy who had talked to me on the phone asked if I needed help. He knew all about walking sticks and I had no idea there are so many kinds! Even the part where I grip can be made of various different materials. I chose my walking sticks, bought them, and proudly left the store.  I came home and showed them to my husband and daughter, who both seemed happy that I had done this. I practiced with them around the house that day.

The next day I decided to take them to church.  Why not?! Church is generally a safe place for me where I try various things and people probably do not realize I am trying things. Learning to use walking sticks is the hardest thing I remember doing.  That day at church, it took all of my concentration to walk with sticks instead of my walker. Walking sticks require more balance than my walker.  Strangely, it is not about legs at all. It is all about core muscles. With walking sticks I can't bend over as much when I walk and I can't sway back and forth.  There is also a sense of rhythm - when I first start I am not as steady, but then I find a rhythm and can go.  

I reach a point where I have gone a distance and my core muscles (stomach, back) have had enough. After I used the sticks at church. I took them other places.  I take them to work, walk in with both my walker and sticks, and do several walks each day with the sticks. I have taken them out on the bike path. One day I went a bit too far on the bike path.  I decided to do an out an back and I made it out fine, but coming back was questionable, and there were no stopping points and nothing to grab. It felt like being dropped in the middle of a body of water with limited swimming abilities and no one near, and having to figure out how to make it to land.  Step by step I gradually made it, but I reached a point when I was at the end of the path and had to get to my car, across a parking lot that was a bit uneven, and my core muscles were done. I made it about halfway and found a curb with a fence right behind it and I sat and rested.  Whew!  The gift of a curb! In days where I couldn't do as much, this curb wouldn't have helped, because I couldn't have got up from it. But these days I can get up so after resting, I got up and made it the rest of the way to my car, deciding that the next time I decide to do that walk, I'll take a friend.

One last thing about walking sticks... they are not ski poles and I am not using them to train for this year's ski season.  It is kind of funny how many people comment on my "ski" poles and wonder if I am using them to train for skiing. I try not to roll my eyes when someone says something about my "ski" poles since it did used to think that was funny.

Walking sticks are only one part of 2018, but they are the most difficult part.  I am getting better with them, but I have a long way to go to feel really comfortable with them.  Because I use them, my skiing is actually better, so it's a side effect, not a reason.  This year in December I skied once. I ski standing using something that looks something like a walker and is called "ski legs." Last year I leaned on the ski legs with my arms holding my body. This December, I tried not to put weight on my arms and instead use my legs more. It has worked!  By the end of the day I could feel my hamstrings working. The next day my hamstrings were sore which was very exciting because my legs have not had that post-workout soreness for at least 20 years. That feeling of soreness means they were really working - who knew it is so exciting to have pain? (recognizing it is a certain type of pain that also goes away)

Then there is the track.  I do keep getting faster although I know I am very close to a speed limit unless I can figure out how to walk without locking my knees with each step. In late November I broke 8 minutes going once around the track - that's a 400 that in high school I did in under 65 seconds so I sent an email to my high school coach to tell him I only had a few minutes to go to get back to my high school time.  On the treadmill I am now walking 3.2mph for 16 minutes - the treadmill supports 25% of my body weight so I can walk faster than over ground. Again I am very close to a barrier of speed that I can't break unless I figure out how to walk without locking my knees.  But you never know.  At physical therapy we joke that one day I will break out like Forest Gump did and someone will yell "Run Beth, run!" as the Bioness devices I wear on my legs pop off and I begin to run.

Bioness!  New this year - there are no longer heel sensors or remote controls because they have a new model where a signal is sent to my lower legs when I lift my leg (instead of when I land on my heel). This is very exciting.  Also, there is an app for Bioness that counts the steps I take. Unfortunately I used this a bit too much and got too excited, so my shoulders (that I use when walking) got injured and I had to take about a month off and still am being careful.  Part of this is that I am not 25 anymore. Because the app then started not working due to an iPhone upgrade, I realized I don't need my Bioness leg devices everywhere I go. I need them to walk long distances and I also need them if I want to make sure my right leg isn't swinging out and around, because the Bioness helps my legs to go straight.

There is a summary of 2018, but it is a pretty limited summary.  It has been a fun year. A lot happened.  I have come much further that I expected.  I have much further to go.  I hope to write more in this blog in 2019, and I hope what I write means that I am continuing to improve. Hope can disappoint, but hope can also bring things like what has been happening to me.  I feel lucky.  

And I have to figure out how to download the contents of this whole blog.

And always along the way, through the good times and the bad, God is there, surrounding us as we hope and as things happen in our lives.

Peace.

Saturday, April 14, 2018

Walk for MS - 2018


It has been a year of breakthroughs for me, individually, as I enter the short time in which I ask friends and family to donate to the MS Walk so that research can continue toward ending this disease. Before I tell about the exciting breakthroughs, here is the link to donate any amount to sponsor me in this year’s MS Walk in May: http://main.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=29425
Every little bit helps!!!

This past year has been very exciting. I have been on Ampyra for 8 years.  It is a medicine which is only supposed to improve walking speed by 25%. But in 8 years on Ampyra, I haven’t had an MS attack (when things get worse all of a sudden). And in those 8 years I have improved so much in so many things - not just walking.

This past fall was a surprise.  Pretty suddenly, I began to be able to stand up straight without a huge arch in my back - standing and feeling relaxed. I began to be able to stand for more than 30 seconds without getting tired. Now I can stand without getting tired for I don’t know how long - at least a half hour. And then I let go of my walker's support when standing. I can hold that for quite a while. Near Christmas, I got another gift. From sitting on the floor, I stood up without holding onto anything. It has been probably 16 years since I have been able to do that. In recent months I timed myself walking around the high school's track and walked a lap in 9 minutes and 30 seconds. For perspective, I didn’t used to be able to walk 30 feet. 

And so I have been leaving my wheelchair in my car and walking most of the time. I leave my wheelchair in the car when I go to work. I still go to physical therapy twice a week and am walking 2.9mph for 16 minutes on the treadmill there - I never thought I would go faster than 2.0mph. When we went to the beach in March, I navigated through the sand with my walker (not easy!) and got to experience the waves hitting my legs while I stood on the beach, digging in my toes.

A few weeks ago I went to see my rehab doc for my usual checkup. He checks a bunch of things, including my leg and arm strength, which he ranks from 0 to 5 where 5 is “normal” strength. My arms always get 5s. My legs used to get 1s and 2s. Six months ago my leg strength got 2s and one 3. This time I got all 4s for leg strength. That is due to the breakthrough this past fall.

And, for the first time ever, this past ski season I stood up to ski instead of sitting. It is amazing how much more I can see around me when standing to ski than when sitting, because I am so much taller. I can see more mountains in the distance and I can see the expanse of the town below me. I was so happy when this happened and kept exclaiming to my instructor how much I could see and how amazing it was.

One last thing. My daughter is 15. She got her learner’s permit. Driving with her tests me as I can’t control the brake. But because I can now move my feet and toes, my imaginary “Mom brake” on the passenger side works well. Unfortunately it is still imaginary so it can’t stop the actual car. 😀

It has been an amazing year. What would be more amazing is if there were a cure for MS. 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 someone to improve - 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.
Peace.