As per previous posts, I've been working on walking using a specialized treadmill called the Alter G. The treadmill was designed by NASA and supports 25 percent of my body weight when I walk. I started very slowly and have worked up both my speed and time, so now I can walk 1.1 miles per hour (no laughing!) for 16 or 17 minutes.
I actually started at .6 miles per hour, because every step really has to be perfect. Both feet have to land on the treadmill (swinging of legs outside the treadmill won't work). Every step has to have a heel strike, because that triggers my Bioness devices to help my legs kick. To effectively do this takes a lot of different things. People where I go know that I need 100 percent concentration. No one talks to me. I count steps because it helps me focus. There's also a camera that allows me to see the front of my feet, so I can see if my steps are too short, if I'm not lifting my foot enough, etc.
For people who walk and have no problems, just take my word that a lot is involved.
At every speed, as I have increased my speed, I seem to reach a point where the speed feels too slow, walking is too easy, or walking is actually more difficult because I am going more slowly. When I increase the speed, and then have to push myself very hard to finish, at the end my legs totally buckle beneath me.
I reached 1.0 miles per hour not long ago. The last time I walked at that 1.0, late last week, I felt better than ever. I felt like my walking had a flow - it really felt like walking as opposed to feeling like kicking these things (legs) in front of my body and somehow moving forward. Walking felt natural... I had somewhat of a "runner's high" and there were no times when I missed a heel strike in the whole 17 minutes. It felt "the best." And so?
And so I knew I had increase the speed. That happened this morning. I increased the speed from 1.0 to 1.1 miles per hour (yes, this is a big deal if you are me). That would be pushing things too much. At first I honestly thought maybe I should just skip to 1.2 miles per hour. 7 minutes into this walk, I felt hot. Usually that takes until 9 or 10 minutes and I have to fight the heat that my body hates. 7 minutes was early to feel hot. My walking felt a bit shaky, not totally there, with some near misses that can result in having to stop. I kept counting and focusing I desparately wanted to it at this new speed - to push as hard as I could.
I made it, flailing in the final seconds before 16 minutes. In fact, my legs collapsed at the end, so we inflated the machine to hold me for a minute while my legs decided to hold me again. Even then, my legs were very weak but somehow I walked off the treadmill and collapsed in a chair - the chair they brought close to me because my legs were so tired.
What a mess. But then again, was it a mess? Or was it "the best?" I'm thinking it was "the best," because it meant I pushed to the very limit, until there was absolutely nothing left, my mind overcoming rubber band legs that had absolutely nothing left in them.
I have to think that all the times when I ran my fastest times years ago and amazed myself; all the times when I did well in music or well in school - those were great. They were "the best." But when it really comes down to it, the very best happens on a day like today, when no one is really there, except the people at physical therapy who help me, and they are probably the best cheerleaders of all time. Today was the best, and hopefully there are more best days to come.
On a sidenote, after I was done there was a realization that the air conditioning wasn't on. I don't know how hot it was in there, but I bet it was over my limit of 74 degrees, and it was humid too, so fighting those obstacles was an additional challenge.
Peace.
Tuesday, July 8, 2014
Tuesday, June 10, 2014
4 miraculous, wonderful years
"Can you increase it to 1.0?" I asked my PT this morning. It was only my second time at that speed, and though 1.0 mph may seem slow, I started at .4 mph. And then, time to focus, one foot in front of the other. Each step on the treadmill has to be perfect or my legs will go flailing and the whole process needs to restart. 15 minutes of this.
14:07, 14:08, ugh, leg hiccup! (Insert profanity here!) Dang. With one minute left, I couldn't save the misstep. Only 1 minute. Restart. "Do you want to go 1 more minute?" asked my PT. I nodded. My legs were not happy. But I have come so far and they could go 1 more minute. At 16 minutes, I was done.
4 years ago today I went on steroids for an acute MS exaccerbation. I was really tired, and the tiny bit of walking I could do had been replaced by falling. These attacks came at least twice a year. They were, to put it mildly, no fun. The times were scary. I felt I was losing everything. Walking 50 feet was so hard. It was exhausting.
I have come so far.
I started taking Ampyra. Ampyra is not supposed to alter the course of MS. But as soon as I started taking Ampyra, my MS halted completely. 2 days after I started taking it, I knew something was different. I could stand longer. A few months later, I started physical therapy (PT). Ampyra and PT have taken me to where I am today. I moved from using "AFO" braces to investing in Bioness. AFOs allow muscles to atrify. Bioness builds muscle. I wish more people realized this, especially physicians.
I have come so far. Legs with big AFO braces would swing out and around for the 50 feet I could walk. Gradually with the Bioness my legs can go straight, one in front of the other.
It's not easy... It takes concentration. It takes time. But life isn't easy, and MS isn't easy. Learning to stand again isn't easy. Over 300 muscles are required to stand. And from standing, there is walking. I have come so far.
I can write again... I had been only able to write by using a fat pen. Every muscle has been helped by Ampyra.
Imagine the cord that connects a computer to an outlet. Say the cord gets chewed a bit by, say, a cat. The wire may be exposed. That's what has happened to a part of my spinal cord except it's not a cat that has done the chewing. We don't know what has been nchewing that cord for almost 25 years, from when I woke up in high school to strange feelings in my legs... and no one knew then.
There is an exposed wire. Without covering, that exposed wired doesn't connect signals reliably. This is MS. Ampyra works by connecting signals of the wire, while leaving the broken cord alone. But it works.
And I have come so far.
Where do we go from here? I don't know. I still don't know if I will be able to stand up tomorrow morning. But I am incredibly thankful for the last 4 miraculous years, of being able to stand each morning. I'm thankful that I never gave up on walking, because now walking is getting better. I am thankful to my family and friends who have always supported me.
This blog is about MS and faith. How does faith fit into this? I have not gone on other therapies for MS since I gave birth to our daughter who is now 11. I have relied on instinct to tell me what is right, and when. And I have relied on God to take me through all of this, which seems like a small part to the whole thing, but it's huge. God has been with me through everything.
I woke up this morning and stood. Then I walked somewhere between 15 and 16 minutes on a treadmill. Life is good.
Peace.
14:07, 14:08, ugh, leg hiccup! (Insert profanity here!) Dang. With one minute left, I couldn't save the misstep. Only 1 minute. Restart. "Do you want to go 1 more minute?" asked my PT. I nodded. My legs were not happy. But I have come so far and they could go 1 more minute. At 16 minutes, I was done.
4 years ago today I went on steroids for an acute MS exaccerbation. I was really tired, and the tiny bit of walking I could do had been replaced by falling. These attacks came at least twice a year. They were, to put it mildly, no fun. The times were scary. I felt I was losing everything. Walking 50 feet was so hard. It was exhausting.
I have come so far.
I started taking Ampyra. Ampyra is not supposed to alter the course of MS. But as soon as I started taking Ampyra, my MS halted completely. 2 days after I started taking it, I knew something was different. I could stand longer. A few months later, I started physical therapy (PT). Ampyra and PT have taken me to where I am today. I moved from using "AFO" braces to investing in Bioness. AFOs allow muscles to atrify. Bioness builds muscle. I wish more people realized this, especially physicians.
I have come so far. Legs with big AFO braces would swing out and around for the 50 feet I could walk. Gradually with the Bioness my legs can go straight, one in front of the other.
It's not easy... It takes concentration. It takes time. But life isn't easy, and MS isn't easy. Learning to stand again isn't easy. Over 300 muscles are required to stand. And from standing, there is walking. I have come so far.
I can write again... I had been only able to write by using a fat pen. Every muscle has been helped by Ampyra.
Imagine the cord that connects a computer to an outlet. Say the cord gets chewed a bit by, say, a cat. The wire may be exposed. That's what has happened to a part of my spinal cord except it's not a cat that has done the chewing. We don't know what has been nchewing that cord for almost 25 years, from when I woke up in high school to strange feelings in my legs... and no one knew then.
There is an exposed wire. Without covering, that exposed wired doesn't connect signals reliably. This is MS. Ampyra works by connecting signals of the wire, while leaving the broken cord alone. But it works.
And I have come so far.
Where do we go from here? I don't know. I still don't know if I will be able to stand up tomorrow morning. But I am incredibly thankful for the last 4 miraculous years, of being able to stand each morning. I'm thankful that I never gave up on walking, because now walking is getting better. I am thankful to my family and friends who have always supported me.
This blog is about MS and faith. How does faith fit into this? I have not gone on other therapies for MS since I gave birth to our daughter who is now 11. I have relied on instinct to tell me what is right, and when. And I have relied on God to take me through all of this, which seems like a small part to the whole thing, but it's huge. God has been with me through everything.
I woke up this morning and stood. Then I walked somewhere between 15 and 16 minutes on a treadmill. Life is good.
Peace.
Sunday, May 25, 2014
Remembering the Bolder Boulder
On Memorial Day each year there is a 10k race in Boulder, Colorado called the Bolder Boulder. Once I started really running in high school, I started doing the Bolder Boulder. It's a huge race that winds through the streets of Boulder and ends in the football stadium.
I love the Bolder Boulder. Runners and walkers are everywhere the morning of the race. Once in the neighborhood streets of Boulder the atmosphere is fun and relaxed. People sit outside their houses, put out lawn chairs, hook up hoses to spray runners who want to be sprayed, and so on. At other places along the course, there are various groups who perform, including belly dancers. It brings a calm to the race, something a bit uncommon for road races.
The first time I ran the Bolder Boulder was after my sophomore year of high school, and most of what I remember is being dropped off at the starting line and then meeting my parents in the stands of the football stadium where the race ends. After my junior year, I was placed in the top women's heat and ran well. My senior year was the best ever. The race also comes right after track season, so high school runners are still in shape. With all the stresses of my senior year done, I flew through the course, got a really high overall placement, and my best time (which I don't remember).
Time changes things and by the time I was ready to do the Bolder Boulder again, I had been diagnosed with MS (there was once I did it after high school and before I was diagnosed with MS, but I don't want to remember that). The goal then was to finish. I remember one year doing the Bolder Boulder with my mom and brother, running various parts.
I will never forget my last Bolder Boulder. I had my walking stick (a hiking stick) for when I would get tired, and I had my mom and my brother there with me. We started the race early despite being told to go back, but I knew we needed the extra time. By mile 5.5 or so of 6.2 miles, I knew I had very little left to give. Where is the stadium? How much further? My mom would go ahead, look, and come back to tell me. You see, I knew this was my last Bolder Boulder. I had said I wanted to do it just one more time, and I knew it carried a risk of falling, of not finishing - many risks. I made it to the final hill up before entering the stadium and I knew I had it.
As I entered the stadium, I was overwhelmed by the number of people and a few tears of joy marvel and joy surfaced. Years previously, almost no one would be in the stadium when I finished because I was one of the first to finish. This last year there was no sprint to the finish. I made my way gradually around the semi-track in the stadium, to the finish, where I finished. I made it - I finished my final Bolder Boulder. I didn't fall. No one can take all my Bolder Boulder memories from me - each one being important in its own way.
I think taking risks is important. The times I ran the Bolder Boulder in high school were so easy and are different types of memories, of times when I always ran faster outside the big track races. I always ran faster when all the pressure was removed. And during those times, I was really fast. There was little risk.
The times of risk involved doing the race with MS, when there were obstacles and uncertainty. And there are many obstacles and uncertainty in everything when MS is in the mix. Recently I've been doing physical therapy to help me stand straighter and to help me walk better and faster (see "The Bubble Machine" entry earlier). On the treadmill that I use in physical therapy, I have to decide whether to risk things like increasing speed, and the unknown associated with it. Will I fail? This past week I learned that rather than fail, I needed a higher speed. Walking faster was a bit easier and I was less tired at the end. There can be so many rewards to taking risks, and we don't know how far we can go until we try. Another risk in increasing the speed was there was a part of my Bioness needing a new battery. I determined when to take a step by watching a camera that is on my feet, so when I saw my left foot reach a certain spot, I knew to take a step. This added to the risk of increasing the speed on the treadmill.
This year for the MS Walk I also took a risk. I was asked if I would be willing to be interviewed as part of a television story. This was a risk because I am not comfortable with others seeing me walk. Me walking, on the news, was an emotional risk I didn't know if I wanted to take. I certainly didn't go waving my hand and asking to be interviewed and to be filmed walking. I did it - I'm glad they showcased me and that I took the risk, mainly so others may see the Bioness and consider trying it. The camera footage was excellent. The story was great; Bioness got its coverage. Here is the link:
http://denver.cbslocal.com/2014/05/03/about-1m-raised-at-this-years-walk-ms/
... Each Memorial Day I remember the Bolder Boulder. After the race is done, there is an honor to the military. And this is another great part of the race.
Thanks be to God for granting me the courage to take risks, to sometimes find failure, but most often to experience unexpected success.
Peace.
I love the Bolder Boulder. Runners and walkers are everywhere the morning of the race. Once in the neighborhood streets of Boulder the atmosphere is fun and relaxed. People sit outside their houses, put out lawn chairs, hook up hoses to spray runners who want to be sprayed, and so on. At other places along the course, there are various groups who perform, including belly dancers. It brings a calm to the race, something a bit uncommon for road races.
The first time I ran the Bolder Boulder was after my sophomore year of high school, and most of what I remember is being dropped off at the starting line and then meeting my parents in the stands of the football stadium where the race ends. After my junior year, I was placed in the top women's heat and ran well. My senior year was the best ever. The race also comes right after track season, so high school runners are still in shape. With all the stresses of my senior year done, I flew through the course, got a really high overall placement, and my best time (which I don't remember).
Time changes things and by the time I was ready to do the Bolder Boulder again, I had been diagnosed with MS (there was once I did it after high school and before I was diagnosed with MS, but I don't want to remember that). The goal then was to finish. I remember one year doing the Bolder Boulder with my mom and brother, running various parts.
I will never forget my last Bolder Boulder. I had my walking stick (a hiking stick) for when I would get tired, and I had my mom and my brother there with me. We started the race early despite being told to go back, but I knew we needed the extra time. By mile 5.5 or so of 6.2 miles, I knew I had very little left to give. Where is the stadium? How much further? My mom would go ahead, look, and come back to tell me. You see, I knew this was my last Bolder Boulder. I had said I wanted to do it just one more time, and I knew it carried a risk of falling, of not finishing - many risks. I made it to the final hill up before entering the stadium and I knew I had it.
As I entered the stadium, I was overwhelmed by the number of people and a few tears of joy marvel and joy surfaced. Years previously, almost no one would be in the stadium when I finished because I was one of the first to finish. This last year there was no sprint to the finish. I made my way gradually around the semi-track in the stadium, to the finish, where I finished. I made it - I finished my final Bolder Boulder. I didn't fall. No one can take all my Bolder Boulder memories from me - each one being important in its own way.
I think taking risks is important. The times I ran the Bolder Boulder in high school were so easy and are different types of memories, of times when I always ran faster outside the big track races. I always ran faster when all the pressure was removed. And during those times, I was really fast. There was little risk.
The times of risk involved doing the race with MS, when there were obstacles and uncertainty. And there are many obstacles and uncertainty in everything when MS is in the mix. Recently I've been doing physical therapy to help me stand straighter and to help me walk better and faster (see "The Bubble Machine" entry earlier). On the treadmill that I use in physical therapy, I have to decide whether to risk things like increasing speed, and the unknown associated with it. Will I fail? This past week I learned that rather than fail, I needed a higher speed. Walking faster was a bit easier and I was less tired at the end. There can be so many rewards to taking risks, and we don't know how far we can go until we try. Another risk in increasing the speed was there was a part of my Bioness needing a new battery. I determined when to take a step by watching a camera that is on my feet, so when I saw my left foot reach a certain spot, I knew to take a step. This added to the risk of increasing the speed on the treadmill.
This year for the MS Walk I also took a risk. I was asked if I would be willing to be interviewed as part of a television story. This was a risk because I am not comfortable with others seeing me walk. Me walking, on the news, was an emotional risk I didn't know if I wanted to take. I certainly didn't go waving my hand and asking to be interviewed and to be filmed walking. I did it - I'm glad they showcased me and that I took the risk, mainly so others may see the Bioness and consider trying it. The camera footage was excellent. The story was great; Bioness got its coverage. Here is the link:
http://denver.cbslocal.com/2014/05/03/about-1m-raised-at-this-years-walk-ms/
... Each Memorial Day I remember the Bolder Boulder. After the race is done, there is an honor to the military. And this is another great part of the race.
Thanks be to God for granting me the courage to take risks, to sometimes find failure, but most often to experience unexpected success.
Peace.
Thursday, May 1, 2014
It's a bit, ridiculous
I've been going through a new round of physical therapy (PT). Each round of PT is different and helps me with something to do with standing or walking. Each physical therapist has their own ideas, and they are all innovative and creative. Generally, they find ways for me to work on standing and walking better.
The sermon at church last week (yup, I do listen to them) was, in part, about our pastor and his job as a teenager which involved mowing huge fields. The field would be beautiful and the thought of mowing it seemed like it would make the field less beautiful. But when it was done, the field was beautiful, just in a different way. And then there were other steps where the field was beautiful, but at the end of each step, the field was still beautiful, but in a different way.
I later was thinking about how I am learning to walk again. One of the hardest parts is when people who don't know me, or who knew me long ago before MS, see me. My walk, I told my physical therapist, isn't a real walk. It's improved so much from 4 years ago, but it still is a bit, well, ridiculous to some people who see me.
This Saturday, at the MS Walk, I might be interviewed and might be on TV... related to the Bioness bionic devices on my legs. Again, I told my physical therapist, I think people think that people strap on the Bioness... and boom! They walk just like everyone else. So, I said, my walk looks ridiculous... not impressive.
I've been thinking about how the field got mowed and became more beautiful. In a strange way, learning to walk gets more "beautiful." I started mostly in my wheelchair, and I mostly leave it behind now to walk. To me and some others who know me, that itself is beautiful, even though it was replaced by an ugly walk. Each round of physical therapy seems like taking a bit of a risk to see what can happen. So far, each step has resulted in a less-ridiculous looking walk, or, alternatively, a more beautiful walk depending on perspective. There's a choice to leave the old behind and try something new. And it makes me think a bit about the field being mowed. How far will I go? I don't know. I actually think God doesn't know, but God takes me through the different "steps."
Back to the interview... it's to me, a risk. I told my physical therapist that it's not like I will just stand up and poof! Walk!! She nodded. There is so much to walking. My legs are now much better. The ridiculous part of me walking is me being bent. After that, it's an enormous sway going back and forth. It's ridiculous. And ridiciculous can be televised!
My physical therapist had a different perspective after I informed her 2 teammates had invisible MS. She remembered 2 people from when she was in college, people with MS, who couldn't walk at all. One was in her forties and the other in her fifties. And maybe my ridiculous walking is meant to reach a different group of people - maybe some people will see ridiculous. But, she said, maybe lots of people will see possibility, going from 10 steps to something more. And to that group, maybe the ridiculous walk will actually be beautiful. Maybe it will give them hope.
As a sidenote, you jst never know whar people are thinking about a sermon in church!
Peace.
The sermon at church last week (yup, I do listen to them) was, in part, about our pastor and his job as a teenager which involved mowing huge fields. The field would be beautiful and the thought of mowing it seemed like it would make the field less beautiful. But when it was done, the field was beautiful, just in a different way. And then there were other steps where the field was beautiful, but at the end of each step, the field was still beautiful, but in a different way.
I later was thinking about how I am learning to walk again. One of the hardest parts is when people who don't know me, or who knew me long ago before MS, see me. My walk, I told my physical therapist, isn't a real walk. It's improved so much from 4 years ago, but it still is a bit, well, ridiculous to some people who see me.
This Saturday, at the MS Walk, I might be interviewed and might be on TV... related to the Bioness bionic devices on my legs. Again, I told my physical therapist, I think people think that people strap on the Bioness... and boom! They walk just like everyone else. So, I said, my walk looks ridiculous... not impressive.
I've been thinking about how the field got mowed and became more beautiful. In a strange way, learning to walk gets more "beautiful." I started mostly in my wheelchair, and I mostly leave it behind now to walk. To me and some others who know me, that itself is beautiful, even though it was replaced by an ugly walk. Each round of physical therapy seems like taking a bit of a risk to see what can happen. So far, each step has resulted in a less-ridiculous looking walk, or, alternatively, a more beautiful walk depending on perspective. There's a choice to leave the old behind and try something new. And it makes me think a bit about the field being mowed. How far will I go? I don't know. I actually think God doesn't know, but God takes me through the different "steps."
Back to the interview... it's to me, a risk. I told my physical therapist that it's not like I will just stand up and poof! Walk!! She nodded. There is so much to walking. My legs are now much better. The ridiculous part of me walking is me being bent. After that, it's an enormous sway going back and forth. It's ridiculous. And ridiciculous can be televised!
My physical therapist had a different perspective after I informed her 2 teammates had invisible MS. She remembered 2 people from when she was in college, people with MS, who couldn't walk at all. One was in her forties and the other in her fifties. And maybe my ridiculous walking is meant to reach a different group of people - maybe some people will see ridiculous. But, she said, maybe lots of people will see possibility, going from 10 steps to something more. And to that group, maybe the ridiculous walk will actually be beautiful. Maybe it will give them hope.
As a sidenote, you jst never know whar people are thinking about a sermon in church!
Peace.
Thursday, April 3, 2014
The Bubble Machine
Although this blog is about "the bubble machine," which helps me to relearn to walk, it's that time of year when I am raising money for the MS Society by participating in the MS Walk. Here is the link to donate: http://main.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=23574
Why should you donate (besides what it says when you click on the link?)?? Well, here is one of my stories. Without the MS Society, there might not be Ampyra, the medicine that has saved me in many ways.
To review (skip this paragraph if you know me!): I was diagnosed with MS over 20 years ago and I have had MS for almost 25 years. I had the kind where I got attacks (times where I was tired and couldn't walk) - they were every year, then every 6 months, then more often... with each attack I didn't fully recover physically. But I did continue with life and never stopped trying to push myself physically, which is why, I am told, I am walking as much as I am walking today. (Never give up.) Over 3.5 years ago I started on a medicine called Ampyra which is only supposed to help a person with MS walk better by 25%, and it only works for 40% of the people who try it. I started and knew within 2 days something was happening. I have continued to improve over the past 3.5 years in many more ways than walking - anything that involves muscles, and by much more than some silly 25%. 3 years ago I started using a gait-assisted treadmill which is a harness that holds the upper body while a person dangles over a treadmill and then the body is lowered to the point where feet touch the treadmill, and the person can walk without having to support their upper body (because of the harness). That was awesome. I kept improving and then got things called Bioness. They go around my calf muscles and shoot signals to the muscles that help me lift my toes. Rather than ugly leg braces I now have cool robotic devices. But they didn't work with the gait-assist treadmill for various reasons, so goodbye gait-assist treadmill. And then there was nothing really new to help, for awhile.
But there is now a bubble machine developed by NASA! It's called the Alter G and you can see a picture of it (though it's not a good picture!) here:
http://www.alterg.com/products/anti-gravity-treadmills/m320-f320/health-wellness
It's a treadmill, but rather than a harness, there is a bubble, and the whole thing works with the Bioness - explanation coming. First, there are shorts that go over pants and once pulled up, the bottom half of a bubble shape forms around the hips. After bubble shorts are on, I walk over "bubble wrapping," and onto a treadmill to get ready. While for anyone else, walking over what is like a small heap of rubber clothing would be easy, the heap looks big to me. Once on the treadmill, someone pulls the bubble wrapping I just stepped over, over the bubble shorts (they really need a better picture of this!) Then, like getting blood pressure taken, air is turned on and the bubble inflates. I seriously think it's like the process in Charlie and the Chocolate factory - where a kid inflates into a giant bubble gum thing or something - it feels like that. Once fully-inflated, a person's weight is determined. Then a certain amount of air is let out so the bubble machine only supports a certain percent of the person's weight. In a very small way it reminds me of how water in a swimming pool can hold a person up. And then, walk! Afterward, I feel a bit like I am floating all day. I couldn't do this previously because my legs didn't want to go straight, so I couldn't stay on a treadmill without someone guiding my legs. The Bioness requires me to put a certain amount of weight on the treadmill; I couldn't do that with the gait-assist treadmill.
The bubble machine is a next step for me. I didn't used to be able to use it because I needed basically 100% support of the gait-assist treadmill. And the next step comes at a time when I think why should people donate to the MS Society this year?
It's not just about me and getting better. It's about funding for research toward finding the cure for MS. It's about finding perhaps a vaccine so no one ever has to get MS. It's about continuing progress year after year, progress that cannot stop if we are ever going to kick this thing called MS.
So many people with disabilities never asked to have a disability - I have been reminded of that this week. With disability there is uncertainty: for me, will I be able to get up tomorrow morning?; for someone else, different uncertainties.
There are several certainties as well. God helps us through all this stuff. Family and friends help Persistence is important. And donating, no matter how much, is critical. Here's the link again:
http://main.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=23574
Every little bit helps.
Peace.
Why should you donate (besides what it says when you click on the link?)?? Well, here is one of my stories. Without the MS Society, there might not be Ampyra, the medicine that has saved me in many ways.
To review (skip this paragraph if you know me!): I was diagnosed with MS over 20 years ago and I have had MS for almost 25 years. I had the kind where I got attacks (times where I was tired and couldn't walk) - they were every year, then every 6 months, then more often... with each attack I didn't fully recover physically. But I did continue with life and never stopped trying to push myself physically, which is why, I am told, I am walking as much as I am walking today. (Never give up.) Over 3.5 years ago I started on a medicine called Ampyra which is only supposed to help a person with MS walk better by 25%, and it only works for 40% of the people who try it. I started and knew within 2 days something was happening. I have continued to improve over the past 3.5 years in many more ways than walking - anything that involves muscles, and by much more than some silly 25%. 3 years ago I started using a gait-assisted treadmill which is a harness that holds the upper body while a person dangles over a treadmill and then the body is lowered to the point where feet touch the treadmill, and the person can walk without having to support their upper body (because of the harness). That was awesome. I kept improving and then got things called Bioness. They go around my calf muscles and shoot signals to the muscles that help me lift my toes. Rather than ugly leg braces I now have cool robotic devices. But they didn't work with the gait-assist treadmill for various reasons, so goodbye gait-assist treadmill. And then there was nothing really new to help, for awhile.
But there is now a bubble machine developed by NASA! It's called the Alter G and you can see a picture of it (though it's not a good picture!) here:
http://www.alterg.com/products/anti-gravity-treadmills/m320-f320/health-wellness
It's a treadmill, but rather than a harness, there is a bubble, and the whole thing works with the Bioness - explanation coming. First, there are shorts that go over pants and once pulled up, the bottom half of a bubble shape forms around the hips. After bubble shorts are on, I walk over "bubble wrapping," and onto a treadmill to get ready. While for anyone else, walking over what is like a small heap of rubber clothing would be easy, the heap looks big to me. Once on the treadmill, someone pulls the bubble wrapping I just stepped over, over the bubble shorts (they really need a better picture of this!) Then, like getting blood pressure taken, air is turned on and the bubble inflates. I seriously think it's like the process in Charlie and the Chocolate factory - where a kid inflates into a giant bubble gum thing or something - it feels like that. Once fully-inflated, a person's weight is determined. Then a certain amount of air is let out so the bubble machine only supports a certain percent of the person's weight. In a very small way it reminds me of how water in a swimming pool can hold a person up. And then, walk! Afterward, I feel a bit like I am floating all day. I couldn't do this previously because my legs didn't want to go straight, so I couldn't stay on a treadmill without someone guiding my legs. The Bioness requires me to put a certain amount of weight on the treadmill; I couldn't do that with the gait-assist treadmill.
The bubble machine is a next step for me. I didn't used to be able to use it because I needed basically 100% support of the gait-assist treadmill. And the next step comes at a time when I think why should people donate to the MS Society this year?
It's not just about me and getting better. It's about funding for research toward finding the cure for MS. It's about finding perhaps a vaccine so no one ever has to get MS. It's about continuing progress year after year, progress that cannot stop if we are ever going to kick this thing called MS.
So many people with disabilities never asked to have a disability - I have been reminded of that this week. With disability there is uncertainty: for me, will I be able to get up tomorrow morning?; for someone else, different uncertainties.
There are several certainties as well. God helps us through all this stuff. Family and friends help Persistence is important. And donating, no matter how much, is critical. Here's the link again:
http://main.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=23574
Every little bit helps.
Peace.
Sunday, March 9, 2014
Focus
An 18 year old girl who was diagnosed with MS about 3 years ago is currently running remarkable times in cross-country. She talks about blocking out symptoms of MS such as numbness while running, until she reaches the finish line, at which time her legs collapse on her. Here's a link to the story:
http://deadspin.com/high-school-runner-with-multiple-sclerosis-races-until-1536597747
In reading her story and watching her race, it's obvious she has extreme focus. I think that is key to as much success as possible - extreme focus - all out as long as possible.
Recently my college choir was on their annual spring tour and they came through Colorado. They were amazing - I really loved to hear them and to see my college choir director again... old meaning that was long ago - I swear he looks like he never ages.
At the end of the concert, as per tradition, alumni get to go up and sing the school's "Kokosing Farewell" song with the choir. The Kokosing is a river which runs right next to the Kenyon College campus, just for context. It's a song sung at the end of many concerts, by many groups at Kenyon, so it has a lengthy tradition.
I wondered how it was going to work with me going up to sing with the choir, assuming they still had their tradition, which they did. I figured things would all work out. And they did - it was a matter of focus.
I walked up with Bart the walker and figured out a place to stand. Stop. Stand? I don't know when I last performed standing! But it's how things happen... there I was, standing, and we were all ready to sing... except I had to lock the wheels on the walker (good thing I just got them fixed!) so Bart didn't escape as he has been known to do very recently.
It definitely wasn't the best standing position, but there I was, suddenly realizing, dang! The Bioness beepers are still on and at any moment could send a signal to my leg to move. Not good. Focus.
I blocked it out. It's not a long song, but it was a long time for me to focus. I blocked out the Bioness. My body wanted to bend but I fought it with the focus of singing, even though I really wanted to lean. My mom took a video and you can't tell, but by the end of the "focused" singing, my arms were shaking. Once done, I had to walk back to my seat. Not a pretty walk. The focus was done and I was tired of standing.
I don't know that I planned on standing - I figured things would work out somehow. But I'm glad I did - it's easier to move with the music that way, and sitting always makes me feel like I'm separated from the group a bit.
The Kokosing Farewell - beautiful.
Much of what seems impossible is indeed possible.
Focus.
Peace.
http://deadspin.com/high-school-runner-with-multiple-sclerosis-races-until-1536597747
In reading her story and watching her race, it's obvious she has extreme focus. I think that is key to as much success as possible - extreme focus - all out as long as possible.
Recently my college choir was on their annual spring tour and they came through Colorado. They were amazing - I really loved to hear them and to see my college choir director again... old meaning that was long ago - I swear he looks like he never ages.
At the end of the concert, as per tradition, alumni get to go up and sing the school's "Kokosing Farewell" song with the choir. The Kokosing is a river which runs right next to the Kenyon College campus, just for context. It's a song sung at the end of many concerts, by many groups at Kenyon, so it has a lengthy tradition.
I wondered how it was going to work with me going up to sing with the choir, assuming they still had their tradition, which they did. I figured things would all work out. And they did - it was a matter of focus.
I walked up with Bart the walker and figured out a place to stand. Stop. Stand? I don't know when I last performed standing! But it's how things happen... there I was, standing, and we were all ready to sing... except I had to lock the wheels on the walker (good thing I just got them fixed!) so Bart didn't escape as he has been known to do very recently.
It definitely wasn't the best standing position, but there I was, suddenly realizing, dang! The Bioness beepers are still on and at any moment could send a signal to my leg to move. Not good. Focus.
I blocked it out. It's not a long song, but it was a long time for me to focus. I blocked out the Bioness. My body wanted to bend but I fought it with the focus of singing, even though I really wanted to lean. My mom took a video and you can't tell, but by the end of the "focused" singing, my arms were shaking. Once done, I had to walk back to my seat. Not a pretty walk. The focus was done and I was tired of standing.
I don't know that I planned on standing - I figured things would work out somehow. But I'm glad I did - it's easier to move with the music that way, and sitting always makes me feel like I'm separated from the group a bit.
The Kokosing Farewell - beautiful.
Much of what seems impossible is indeed possible.
Focus.
Peace.
Tuesday, February 25, 2014
Corn Chowder
Today someone told me, in the course of conversation, that I should make homemade corn chowder. I responded that I didn't have the time. The person responded that we all have the same amount of time, and then the person wondered why I didn't have time to make corn chowder. I told the person they should follow me around for a day. And I'll stop there. Really? Do people really think this way??
We do all have the same amount of time each day and we each somewhat decide how we want to spend it. If I could spend time any way I wanted and didn't have MS, I have to say corn chowder would be nowhere near the top of the list. I think I'd probably still run or do some kind of athletic activity; I'd probably still play the piano; I'd run around on errands; I'd have a different blog; I'd spend time looking for various articles on healthcare policy; and I'd probably still be a Facebook addict. Before that, I'd be a wife and mom... that doesn't change. I don't really enjoy cooking although I enjoy hearing how other people cook.
Suppose I did want to make corn chowder. I would now be at the store getting ingredients instead of writing this blog. It's cold out there! I would assemble my wheelchair, go get the ingredients, etc. Then I'd get home and have to figure a way to get them inside. Because fatigue is a major problem for me, this series of things would totally wipe me out. It's better to be home writing the blog, and then take a break to walk. If I went to the store, there would be no walking and I would have huge leg spasms all night.
I forgot - I'd need to know how to make corn chowder! Someone in Minnesota gave me an awesome recipe when I lived there, so I could get that book out, find paper and pen, and write the ingredients. That would be tiring too. It's between 4 and 7. That's the most tiring time for me. At 8pm my body wants to take a nap. So I have from 7-8pm and then at about 10pm Ampyra kicks in and my legs want to walk, so I walk and do a bunch of leg exercises.
Another day I'd make the corn chowder. Because my shoulder is never going to be ok again, it would be hard to put everything together. The action of pouring things hurts my shoulder a lot. And I would be tired. I would have to cancel a walking session and I value those. And really, cooking is not my thing. It's not worth the effort for me.
In writing this, I seem to be justifying not making corn chowder, or perhaps I seem to be complaining, or people have told people with disabilities that they are so sensitive! What I would like is for someone out there who doesn't "get it," to read this and understand why things are different for people like me. I don't want a sympathy party. I do wish people would understand just a bit, that everything is different for me than for someone without MS.
Briefly, if the person who said I should make corn chowder, if the person could follow me through the day, the person would see the following... Every morning I sit on the edge of my bed wondering if I will be able to stand. Assuming I can stand, I then do a short series of physical therapy exercises. I have coffee, take a shower, etc. It takes me longer to do all of this. I write a good morning note to my daughter, drive 50 minutes to work, work all day, drive an hour home, and figure out what is easiest for dinner. Making dinner takes longer for me and it's between the evil hours of 4 and 7pm. I make sure my daughter has homework done, do more physical therapy exercises, fall asleep in whatever I am doing at 8pm, wake up at about 8:30, and on and on. And it hard to explain this without someone watching, but things take me longer than someone without MS. At 10pm I do more physical therapy exercises and then go to bed. At least once during the night I get up to walk because I get severe leg spasms. My body only lets me sleep about 6 hours before the severe leg spasms have me sitting on the edge of our bed wondering if I will be able to get up... if my legs work. And this is an average day. During the day while at work I get up every hour to walk. Many people think I do this to stretch. I walk during the day to work on walking. Today I walked a lot more because my legs wanted to have spasms. Walking is the only thing that really helps spasms. I can be very tired, but my legs may spasm, and I have to walk. MS can be like that. MS can simultaneously tell a person they are tired, and that they need to get up and walk.
I write all of this so someone out there who doesn't understand, may understand. Even if I look great, I may be really tired.
And I write these entries in a way to "educate" people. You don't see everything. You may see a person using a wheelchair and assume they don't get fatigued because they have a wheelchair. And for many people who use wheelchairs, they may not have fatigue. But everyone who uses a wheelchair is different, so some people may be more tired than others. I may look better in my wheelchair, but I have more energy when using my walker, even though it doesn't look that way.
And no matter what, maybe someone else can make me some homemade corn chowder. I don't think I ever will, at least not for a long time. Right now I'm tired and my body is telling me to walk and then take the 8pm nap, because I won't have a choice.
Peace.
We do all have the same amount of time each day and we each somewhat decide how we want to spend it. If I could spend time any way I wanted and didn't have MS, I have to say corn chowder would be nowhere near the top of the list. I think I'd probably still run or do some kind of athletic activity; I'd probably still play the piano; I'd run around on errands; I'd have a different blog; I'd spend time looking for various articles on healthcare policy; and I'd probably still be a Facebook addict. Before that, I'd be a wife and mom... that doesn't change. I don't really enjoy cooking although I enjoy hearing how other people cook.
Suppose I did want to make corn chowder. I would now be at the store getting ingredients instead of writing this blog. It's cold out there! I would assemble my wheelchair, go get the ingredients, etc. Then I'd get home and have to figure a way to get them inside. Because fatigue is a major problem for me, this series of things would totally wipe me out. It's better to be home writing the blog, and then take a break to walk. If I went to the store, there would be no walking and I would have huge leg spasms all night.
I forgot - I'd need to know how to make corn chowder! Someone in Minnesota gave me an awesome recipe when I lived there, so I could get that book out, find paper and pen, and write the ingredients. That would be tiring too. It's between 4 and 7. That's the most tiring time for me. At 8pm my body wants to take a nap. So I have from 7-8pm and then at about 10pm Ampyra kicks in and my legs want to walk, so I walk and do a bunch of leg exercises.
Another day I'd make the corn chowder. Because my shoulder is never going to be ok again, it would be hard to put everything together. The action of pouring things hurts my shoulder a lot. And I would be tired. I would have to cancel a walking session and I value those. And really, cooking is not my thing. It's not worth the effort for me.
In writing this, I seem to be justifying not making corn chowder, or perhaps I seem to be complaining, or people have told people with disabilities that they are so sensitive! What I would like is for someone out there who doesn't "get it," to read this and understand why things are different for people like me. I don't want a sympathy party. I do wish people would understand just a bit, that everything is different for me than for someone without MS.
Briefly, if the person who said I should make corn chowder, if the person could follow me through the day, the person would see the following... Every morning I sit on the edge of my bed wondering if I will be able to stand. Assuming I can stand, I then do a short series of physical therapy exercises. I have coffee, take a shower, etc. It takes me longer to do all of this. I write a good morning note to my daughter, drive 50 minutes to work, work all day, drive an hour home, and figure out what is easiest for dinner. Making dinner takes longer for me and it's between the evil hours of 4 and 7pm. I make sure my daughter has homework done, do more physical therapy exercises, fall asleep in whatever I am doing at 8pm, wake up at about 8:30, and on and on. And it hard to explain this without someone watching, but things take me longer than someone without MS. At 10pm I do more physical therapy exercises and then go to bed. At least once during the night I get up to walk because I get severe leg spasms. My body only lets me sleep about 6 hours before the severe leg spasms have me sitting on the edge of our bed wondering if I will be able to get up... if my legs work. And this is an average day. During the day while at work I get up every hour to walk. Many people think I do this to stretch. I walk during the day to work on walking. Today I walked a lot more because my legs wanted to have spasms. Walking is the only thing that really helps spasms. I can be very tired, but my legs may spasm, and I have to walk. MS can be like that. MS can simultaneously tell a person they are tired, and that they need to get up and walk.
I write all of this so someone out there who doesn't understand, may understand. Even if I look great, I may be really tired.
And I write these entries in a way to "educate" people. You don't see everything. You may see a person using a wheelchair and assume they don't get fatigued because they have a wheelchair. And for many people who use wheelchairs, they may not have fatigue. But everyone who uses a wheelchair is different, so some people may be more tired than others. I may look better in my wheelchair, but I have more energy when using my walker, even though it doesn't look that way.
And no matter what, maybe someone else can make me some homemade corn chowder. I don't think I ever will, at least not for a long time. Right now I'm tired and my body is telling me to walk and then take the 8pm nap, because I won't have a choice.
Peace.
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