A while back, I had thought of writing a blog entry on the city of Aurora, Colorado, and why I love it. When I moved back to Colorado from Minnesota, I moved to Aurora and have worked there ever since. I lived in an apartment in Aurora, and bought my first house there. We moved out because my husband had been there so long and wanted something different.
I suppose what I like about Aurora is the diversity it brings. Of course, this isn't everywhere and there are pockets, but it is there. We have a prayer group in the building where I work, in Aurora, and it brings people of diverse backgrounds and even religions together in prayer. For some reason, in Aurora people seem more willing to naturally offer help than in some other places.
The shooting rampage during Batman - in this city that I love even though I no longer live there, my work is not near the location and neither is my church (which is also in Aurora). I don't know any of the victims. I've been to the theater a handful of times... when we lived there. A medical office building where I go is very close, but there's no relation, really, to the theater, the victims, etc.
So, I wonder, why did I feel impacted by the shooting more than with other such "things?" I don't know. I found myself checking the news or staring into space most of the day. It will never make sense.
I think, once I broke through the staring phase today and looked again at the news, what I realized is this. Aurora is a strong community, and Colorado as a state is a strong community. We have firefighters, police officers, paramedics, physicians, nurses, counselors, and many other people who seem to pull together during times like this. We have an amazing governor who is everywhere, doing all he can. We have so many people who want to help.
It's Colorado. It's Aurora. It's many places.
Thoughts and prayers to everyone affected by the tragedy. Thanks to all those who have helped, in any way they can.
In times like this, people will say faith can help people immensely. I think that's true. It's time to be in relationship with God, to allow oneself to pause, to be still, to take a step back.
"Be still and know I am God.
Be still and know I am.
Be still and know.
Be still.
Just Be.
Be...
Be...
Be..."
Peace.
Saturday, July 21, 2012
Wednesday, July 18, 2012
Vertical
One of the first symptoms I had with MS was bending over when I ran. I would start to bend, then more and more, and I could fall. This was videotaped for doctors who all (except one, and he wasn't a neurologist) said this couldn't indicate MS. But it did.
Now, over 20 years later, so many things have improved with Ampyra and the Bioness. But a struggle is the ability to stand straight, which translates into the ability to walk without bending, and walking without bending is made more difficult when pushing a walker forward, since that somewhat naturally makes a person bend.
I told my physical therapist about this bothering me (so if anyone with MS reads this, physical therapists can really help you!) and we spent a session analyzing what was occurring. There are so many muscles involved in standing - it's not just your leg muscles that keep you vertical. A big driver are the muscles in the lower stomach and gluteal.
Who knew? If you are "normal" and just standing, you don't think to tighten these muscles so you don't bend. When I stand, to get more vertical, I squeeze those muscles. It's also quad muscles - my right side is weaker than my left, so to get to standing and to strengthen the right quad muscles, I start with my right leg behind my left, and then push up. Then, to further strengthen quads, I shift from right to left a few times before walking.
It's incredible, I think - all this work to try to get more vertical. It's work I can do in the summer when it's too hot to walk outside and there's not a lot of room to walk inside. All this work when others just do this simple action without thinking.
I spend some time watching how other people walk - how they get up - which muscles they use. It just doesn't seem to take that much to stand and walk. But then, when something happens, there's the realization that it takes an incredible amount to stand and walk. And I am lucky to have the opportunity to see how much it takes.
In a sense, having this opportunity is great. In another sense, it's difficult, watching people and thinking how easy this stuff looks, when it really is not easy at all. I will sit and think about how people don't realize how much is involved - they get up and go. When I walk people may make comments like "are you ok?" So I realize there is a long road to go.
So if you don't have MS and read this, perhaps you know someone with MS (besides me) and you can think, when they stand, how much may be involved.
It's a matter of gaining strength. It's a matter of getting connections to possibly work again. And to that end, I read a study this week of some protein (I think - I'm not a scientist) that is thought to trigger something going wrong at points where potassium helps transmit signals. And that is where Ampyra helps - to connect those signals.
For those of us who are on Ampyra and it's working, we're finding all these broken things and trying to reconnect and fix them. It's really amazing - from the standpoint of being exciting, but also during those times when we realize how much is involved, how much needs to be fixed, and how much work it has, and continues, to take. But for some of us, we are willing to attempt those fixes. It's not easy and often, not fun. The results may be fantastic.
And since this blog does involve the element of faith, it's taken faith as well. There are times of happiness, times of frustration, times of being tired, and so on. There are songs my daughter learned at camp and now I know them. They are calming. In the midst of what feels in a sense like chaos trying to be fixed, there is still chaos. But I can find that time, find quiet moments, to sing those songs. One is simple, starting with "Be still and know I am God," and then cutting out a piece each time it is sung, so in the end, the word "Be" is sung three times, leaving a person in silence and peace.
Amidst all that chaos, work to get better, feelings of success, feelings of how much is left, uncertainty as to what is to come, and the emotions that go with this, there is
Peace.
Now, over 20 years later, so many things have improved with Ampyra and the Bioness. But a struggle is the ability to stand straight, which translates into the ability to walk without bending, and walking without bending is made more difficult when pushing a walker forward, since that somewhat naturally makes a person bend.
I told my physical therapist about this bothering me (so if anyone with MS reads this, physical therapists can really help you!) and we spent a session analyzing what was occurring. There are so many muscles involved in standing - it's not just your leg muscles that keep you vertical. A big driver are the muscles in the lower stomach and gluteal.
Who knew? If you are "normal" and just standing, you don't think to tighten these muscles so you don't bend. When I stand, to get more vertical, I squeeze those muscles. It's also quad muscles - my right side is weaker than my left, so to get to standing and to strengthen the right quad muscles, I start with my right leg behind my left, and then push up. Then, to further strengthen quads, I shift from right to left a few times before walking.
It's incredible, I think - all this work to try to get more vertical. It's work I can do in the summer when it's too hot to walk outside and there's not a lot of room to walk inside. All this work when others just do this simple action without thinking.
I spend some time watching how other people walk - how they get up - which muscles they use. It just doesn't seem to take that much to stand and walk. But then, when something happens, there's the realization that it takes an incredible amount to stand and walk. And I am lucky to have the opportunity to see how much it takes.
In a sense, having this opportunity is great. In another sense, it's difficult, watching people and thinking how easy this stuff looks, when it really is not easy at all. I will sit and think about how people don't realize how much is involved - they get up and go. When I walk people may make comments like "are you ok?" So I realize there is a long road to go.
So if you don't have MS and read this, perhaps you know someone with MS (besides me) and you can think, when they stand, how much may be involved.
It's a matter of gaining strength. It's a matter of getting connections to possibly work again. And to that end, I read a study this week of some protein (I think - I'm not a scientist) that is thought to trigger something going wrong at points where potassium helps transmit signals. And that is where Ampyra helps - to connect those signals.
For those of us who are on Ampyra and it's working, we're finding all these broken things and trying to reconnect and fix them. It's really amazing - from the standpoint of being exciting, but also during those times when we realize how much is involved, how much needs to be fixed, and how much work it has, and continues, to take. But for some of us, we are willing to attempt those fixes. It's not easy and often, not fun. The results may be fantastic.
And since this blog does involve the element of faith, it's taken faith as well. There are times of happiness, times of frustration, times of being tired, and so on. There are songs my daughter learned at camp and now I know them. They are calming. In the midst of what feels in a sense like chaos trying to be fixed, there is still chaos. But I can find that time, find quiet moments, to sing those songs. One is simple, starting with "Be still and know I am God," and then cutting out a piece each time it is sung, so in the end, the word "Be" is sung three times, leaving a person in silence and peace.
Amidst all that chaos, work to get better, feelings of success, feelings of how much is left, uncertainty as to what is to come, and the emotions that go with this, there is
Peace.
Tuesday, July 3, 2012
On Fire
June was quite the month! It was the hottest ever in Colorado. "We" tied the hottest temp ever here, and "we" did it twice. "We also tied the highest consecutive number of days at or above 100. There seem too many fires to count in this state right now. One hit Colorado Springs, a city, and destroyed over 300 homes. East of here, outside of Colorado, there were storms that knocked out electricity, and that is not a good thing for the middle of the summer. Right before the heat, we had storms with hail, so in the current 100 degree heat, people are having roofs repaired.
Recently I heard a story on people with asthma and allergies and how much it affects them. Selfishly I thought, but, but, but, MS............., what to do because it takes less than 2 minutes for heat to bring a person with MS to the ground. Not everyone - I suppose I'm affected to the extreme. My body seems to have no internal temperature control mechanism - if only they could invent a thermostat to be inserted into the bodies of people with MS.
I'm grateful. I have my home. A friend of mine who has MS was evacuated because of one of the fires. Her home was fine in the end and she is back, but suddenly being displaced when you have MS can be very difficult. She drove and stayed with a friend, then in 1 hotel, then another, and couldn't wait to get home. I imagine everyone feels that need for home, but with mobility and MS, navigating everything is a challenge, and have to continually evaluate everything while moving from place to place, waiting to hear if your home is ok..... I can't imagine. MS causes havoc.
I'm grateful for my home although it now needs a new roof and all our flowers were hit by hail. Miraculously, they are coming back.
So although I am grateful for what I have, it has been a miserable month. I get people to help me load equipment into my vehicle (ok, I admit it, I have a "mom van."). I stay inside as much as I can. But it's miserable. Since for the most part I can't go outside, my walking is more limited. And as people who know me know, I don't really like to be asking for all this help.
Many people ask what happens during heat? I have now determined that for me, it depends. A study recently showed that when people with MS are compared to people without MS and exposed to heat for a very short time, the results are clear. The core body temperature for people with MS goes up much more than for people without. This may be because many with MS don't sweat. I never sweat - this is actually a problem. Because of this, in the study, the people with MS couldn't walk and they had a hard time standing. The results were dramatic. For me, it's much the same. By the time I get to my car if it's hot, I'm wondering how I'm going to get into the car.
The other thing that can happen is hands and feet get tingly, or go numb. I was in a meeting and suddenly realized I couldn't feel my pinky fingers and this was quickly moving to my ring finger area. When I got up - well read the previous paragraph. It was hard to get up. It was hard to walk. And from not walking as much, the "reward" is legs that ache, that ask to walk, even when they can't.
The only good part is it doesn't last long. In an hour, function somewhat returns. In 24 hours, generally people are fine. I'm going to bed feeling like spaghetti legs, and waking up fine. I like waking up fine. But the every day cycle is old.
We have 2 more months in summer. I'm hoping for an early fall. So are all the people impacted by fires, the people with asthma, the people with allergies, .............., and the smaller group of people with MS.
We (people with MS) will emerge from hiding, being able to feel fingers and toes, not having to worry about heat causing legs to fail, and ready to get on with life. It's always one day, one hour, one minute at a time with MS. But when the heat breaks, it's all more tolerable.
And since we are inside following the news, we (I assume) realize how much the firefighters, police, etc are doing, and we are thankful to them.
Peace.
Recently I heard a story on people with asthma and allergies and how much it affects them. Selfishly I thought, but, but, but, MS............., what to do because it takes less than 2 minutes for heat to bring a person with MS to the ground. Not everyone - I suppose I'm affected to the extreme. My body seems to have no internal temperature control mechanism - if only they could invent a thermostat to be inserted into the bodies of people with MS.
I'm grateful. I have my home. A friend of mine who has MS was evacuated because of one of the fires. Her home was fine in the end and she is back, but suddenly being displaced when you have MS can be very difficult. She drove and stayed with a friend, then in 1 hotel, then another, and couldn't wait to get home. I imagine everyone feels that need for home, but with mobility and MS, navigating everything is a challenge, and have to continually evaluate everything while moving from place to place, waiting to hear if your home is ok..... I can't imagine. MS causes havoc.
I'm grateful for my home although it now needs a new roof and all our flowers were hit by hail. Miraculously, they are coming back.
So although I am grateful for what I have, it has been a miserable month. I get people to help me load equipment into my vehicle (ok, I admit it, I have a "mom van."). I stay inside as much as I can. But it's miserable. Since for the most part I can't go outside, my walking is more limited. And as people who know me know, I don't really like to be asking for all this help.
Many people ask what happens during heat? I have now determined that for me, it depends. A study recently showed that when people with MS are compared to people without MS and exposed to heat for a very short time, the results are clear. The core body temperature for people with MS goes up much more than for people without. This may be because many with MS don't sweat. I never sweat - this is actually a problem. Because of this, in the study, the people with MS couldn't walk and they had a hard time standing. The results were dramatic. For me, it's much the same. By the time I get to my car if it's hot, I'm wondering how I'm going to get into the car.
The other thing that can happen is hands and feet get tingly, or go numb. I was in a meeting and suddenly realized I couldn't feel my pinky fingers and this was quickly moving to my ring finger area. When I got up - well read the previous paragraph. It was hard to get up. It was hard to walk. And from not walking as much, the "reward" is legs that ache, that ask to walk, even when they can't.
The only good part is it doesn't last long. In an hour, function somewhat returns. In 24 hours, generally people are fine. I'm going to bed feeling like spaghetti legs, and waking up fine. I like waking up fine. But the every day cycle is old.
We have 2 more months in summer. I'm hoping for an early fall. So are all the people impacted by fires, the people with asthma, the people with allergies, .............., and the smaller group of people with MS.
We (people with MS) will emerge from hiding, being able to feel fingers and toes, not having to worry about heat causing legs to fail, and ready to get on with life. It's always one day, one hour, one minute at a time with MS. But when the heat breaks, it's all more tolerable.
And since we are inside following the news, we (I assume) realize how much the firefighters, police, etc are doing, and we are thankful to them.
Peace.
Friday, June 22, 2012
A good ending
This past week I got my first pair of "real" running shoes in years. It's not that I'm ready to run in them, but, well it's complicated...
Instead of braces on my legs (called AFOs - sounds like an alien invention!), I now have what's called a Bioness on each. The Bioness has 2 parts. There's an upper "cuff" that goes right below the knee, and there's a heel sensor that goes between the insole and shoe (where the heel strikes when walking). When I push on my heel, that activates the heel sensor. Somehow that then talks to the cuff, which has 2 electrodes (don't quote me on terminology here!). The cuff is placed in just the right place so the electrodes "zap," or send a signal, to some part of the outer calf. That part is actually the part that sends a message to the foot, or actually toes, to lift up and then kick forward. It's really cool because I can plant my heel and then really kick my whole foot and leg out. Anyway, back to shoes.
Because I have heel sensors rather than huge braces for shoes, I can wear more than just the big clunky shoes. I'm still limited, but I don't have to worry about shoving a brace into my shoe. I have to make sure there is heel stability. I broke out a pair of sturdy sandals and have been wearing them, but they are not good for when I really want to walk further. And I am sick of the big, clunky black shoes I wear everywhere.
So I went to the running store. The guy there was really nice and didn't ask why in the world the lady with the walker wanted running shoes with solid ankle support. He showed me a pair and remarked they are good for pronation (that's when the foot turns in naturally). I have the opposite problem - my feet tend to turn out so my ankle bends out. I think I've always tended this way. In high school some people came to analyze our running technique and said I had a very strange knee alignment and something strange with my foot. My physical therapist says my foot tends to stick out to the side instead of straight. I have flat feet too! Maybe these things made me fast, yes?
I found a pair of shoes. My mom and I went home and that night I set them up with the heel sensors, ready to go for an early morning walk. The heat has been getting to me lately, so I didn't know how the walk would go.
The next morning everything was set. I got out of the van, got the walker, and started. And then I stopped. What?!! Don't heel sensors work with running shoes? I could feel a zing being sent to my right leg, but it wasn't responding at all. Nor was the left. So, discouraged, I went home in a pout. I put the heel sensors back in my other shoes. The same thing happened. I "made up" that it was the heat, that nothing was going to work that day.
That night we went to Starbucks with the old shoes. Same thing. Impulses clearly being sent but nothing was happening. Pout.
When we got home I did a bunch of exercises to see how bad this MS and heat was getting to me. But the exercises went fine. Terrific. I "made up" the Bioness was broken and I would have to wear clunky shoes and AFOs made by aliens (see paragraph near beginning) for life. Pout.
This morning I got up and figured I would call the physical therapist. We have a prayer group in the building where I work. So I went to that and yes, we did actually pray that these things start working again!
Back at my desk, I made an appointment and talked with someone who told me to check the heel sensors. And so I took the right heel sensor out. I squeezed on it. And it activated the left cuff. So, if you haven't figured it out, the right heel sensor was trying to get the left leg to move while the left heel sensor was trying to get the right leg to move! Thus, there were a bunch of signals all mixed up.
That just goes to show that when doing something as easy as moving heel sensors between shoes, it's important that they go in the correct side.
I guess those prayers worked. No, there was a scream to switch the sensors that wasn't being heard - to think more than one way. Perhaps there was a scream to stop doubting ability and instead figure out why. A plea to move forward and believe in myself without doing a bunch of exercises to convince myself I'm ok.
And in the end, though frustrating, I have to laugh. Zing, zing, zing. Now to switch the sensors to the running shoes... the correct way.
Peace.
Instead of braces on my legs (called AFOs - sounds like an alien invention!), I now have what's called a Bioness on each. The Bioness has 2 parts. There's an upper "cuff" that goes right below the knee, and there's a heel sensor that goes between the insole and shoe (where the heel strikes when walking). When I push on my heel, that activates the heel sensor. Somehow that then talks to the cuff, which has 2 electrodes (don't quote me on terminology here!). The cuff is placed in just the right place so the electrodes "zap," or send a signal, to some part of the outer calf. That part is actually the part that sends a message to the foot, or actually toes, to lift up and then kick forward. It's really cool because I can plant my heel and then really kick my whole foot and leg out. Anyway, back to shoes.
Because I have heel sensors rather than huge braces for shoes, I can wear more than just the big clunky shoes. I'm still limited, but I don't have to worry about shoving a brace into my shoe. I have to make sure there is heel stability. I broke out a pair of sturdy sandals and have been wearing them, but they are not good for when I really want to walk further. And I am sick of the big, clunky black shoes I wear everywhere.
So I went to the running store. The guy there was really nice and didn't ask why in the world the lady with the walker wanted running shoes with solid ankle support. He showed me a pair and remarked they are good for pronation (that's when the foot turns in naturally). I have the opposite problem - my feet tend to turn out so my ankle bends out. I think I've always tended this way. In high school some people came to analyze our running technique and said I had a very strange knee alignment and something strange with my foot. My physical therapist says my foot tends to stick out to the side instead of straight. I have flat feet too! Maybe these things made me fast, yes?
I found a pair of shoes. My mom and I went home and that night I set them up with the heel sensors, ready to go for an early morning walk. The heat has been getting to me lately, so I didn't know how the walk would go.
The next morning everything was set. I got out of the van, got the walker, and started. And then I stopped. What?!! Don't heel sensors work with running shoes? I could feel a zing being sent to my right leg, but it wasn't responding at all. Nor was the left. So, discouraged, I went home in a pout. I put the heel sensors back in my other shoes. The same thing happened. I "made up" that it was the heat, that nothing was going to work that day.
That night we went to Starbucks with the old shoes. Same thing. Impulses clearly being sent but nothing was happening. Pout.
When we got home I did a bunch of exercises to see how bad this MS and heat was getting to me. But the exercises went fine. Terrific. I "made up" the Bioness was broken and I would have to wear clunky shoes and AFOs made by aliens (see paragraph near beginning) for life. Pout.
This morning I got up and figured I would call the physical therapist. We have a prayer group in the building where I work. So I went to that and yes, we did actually pray that these things start working again!
Back at my desk, I made an appointment and talked with someone who told me to check the heel sensors. And so I took the right heel sensor out. I squeezed on it. And it activated the left cuff. So, if you haven't figured it out, the right heel sensor was trying to get the left leg to move while the left heel sensor was trying to get the right leg to move! Thus, there were a bunch of signals all mixed up.
That just goes to show that when doing something as easy as moving heel sensors between shoes, it's important that they go in the correct side.
I guess those prayers worked. No, there was a scream to switch the sensors that wasn't being heard - to think more than one way. Perhaps there was a scream to stop doubting ability and instead figure out why. A plea to move forward and believe in myself without doing a bunch of exercises to convince myself I'm ok.
And in the end, though frustrating, I have to laugh. Zing, zing, zing. Now to switch the sensors to the running shoes... the correct way.
Peace.
Friday, June 15, 2012
And now I know...
We live on a cul de sac, about halfway around it. Get to the end of the cul de sac, look left, and there's a bridge over a stream.
I love streams like this - the water flowing, just as life flows...
I used to wonder, what is it like for people to walk to the stream, see the water, and feel a breeze...
Today I went on my walk and found myself so close to that bridge and river. And then I was there. Blocking back tears which wanted to come, I looked at this stream. It continues; there are rocks, branches, various things blocking the path of the water. But the water finds a way, just as in life, we may search and find our way.
My husband returned home allowing me to continue to the top of the hill after the bridge.
A breeze on my face, tears blocked, looking up.
It's the little things that count.
Peace.
I love streams like this - the water flowing, just as life flows...
I used to wonder, what is it like for people to walk to the stream, see the water, and feel a breeze...
Today I went on my walk and found myself so close to that bridge and river. And then I was there. Blocking back tears which wanted to come, I looked at this stream. It continues; there are rocks, branches, various things blocking the path of the water. But the water finds a way, just as in life, we may search and find our way.
My husband returned home allowing me to continue to the top of the hill after the bridge.
A breeze on my face, tears blocked, looking up.
It's the little things that count.
Peace.
Sunday, June 10, 2012
Two
Two.
My lucky number (from a piano competition as a kid).
Two.
Today, two years since I had an MS attack.
Two years since I woke up, could hardly walk, was beyond tired, and called my doc to request steroids.
Almost two years on Ampyra, the drug supposed to help with walking, not with MS attacks.
Two years of improvement with walking, sitting, standing, and much more.
Two years I thought would never happen.
Two years when other things were too much.
Two years when those other things, that were too much, did not lead to an MS attack.
Two years of exploring what is next.
Two years of change.
Two years of being glad I hadn't given up.
Two years with God beside me as I traveled down a different road.
Two.
Peace.
My lucky number (from a piano competition as a kid).
Two.
Today, two years since I had an MS attack.
Two years since I woke up, could hardly walk, was beyond tired, and called my doc to request steroids.
Almost two years on Ampyra, the drug supposed to help with walking, not with MS attacks.
Two years of improvement with walking, sitting, standing, and much more.
Two years I thought would never happen.
Two years when other things were too much.
Two years when those other things, that were too much, did not lead to an MS attack.
Two years of exploring what is next.
Two years of change.
Two years of being glad I hadn't given up.
Two years with God beside me as I traveled down a different road.
Two.
Peace.
Tuesday, June 5, 2012
The Hunger Games
I just finished reading The Hunger Games. I know there are politics behind it - I almost made it through the book without doing an Internet search to see what others thought. There are some interesting opinions out there and they do make sense. The book is excellent, and I have to wonder if different people find different meanings within it, for themselves.
I've had a bit of writer's block lately - one moment I think I want to write on one aspect of life; another moment something in life changes and I want to write about that. Then later, neither idea makes sense, or perhaps it would tell too much about things, or perhaps it's just a writer's block and I'm stumped.
But getting back to The Hunger Games where there are kids killing kids... I'm not concentrating on that but on another aspect - perhaps it's in the style of writing... Katniss, the main character, has a great ability to be constantly thinking - if she didn't, she'd be killed. And she has to constantly be shifting her thinking as things change.
This reminds me of my life in a strange way, and is probably true for many with disabilities. While I'm not avoiding someone killing me, I'm constantly reasoning through things, and shifting things, to make things "work" for me. Sometimes, I'm trying to avoid falling. Sometimes I'm trying to find the best way. Sometimes I'm experimenting.
So, a few examples...
Every morning I get up and have a routine to get to the shower, out of the shower, etc. But I don't think most people have a big thought process to go with their morning routine. As I sit on my bed, I'm hoping that when I launch myself, my leg muscles engage so they push me up. If they don't, quickly I have to shift to using my arms. And if I am using my arms, I sit back down and try again. Another thought process occurs right after the shower. I make my way across the floor, and I'm being careful. But if there's water on the floor, I have to re-adjust, knowing that if I slip, I won't recover from it like everyone else. So I plan for that slip, knowing there are several routes to get where I need to go. If I do slip, then rather than a big fall, I should be able to let myself down slowly, and not get hurt.
In the summer it gets hot. When I leave work and it's hot, I have a plan. I pretend I have 2 minutes to get out, get my wheelchair or walker in the car, and get in the car. If I stop to talk, in the sun, I'm going to struggle more. If I take my time disassembling my wheelchair, then to get to the front, I'm out of energy. So I'm thinking at each step of disassembling my chair. Sometimes things still don't go as planned, and I wonder how I will make it to my car.
When I go on some of my walks when I am working at walking, I think several things, and I shift depending on what is happening with my walk. If I am dragging my left leg more than I want, then I use visualization... so I have the Bioness getting the right foot to do what it is supposed to do and I think through mimicking that with my left leg. If my right leg is acting a bit "off," I have to shift thinking. Then I'm making sure my heel is hitting the ground first. That activates the Bioness (there's a heel sensor). So I have to think "heel" with each step. When both legs are "behaving," then I'm working on a longer kick. Or the new thing is I crank my neck back and strain it, and so I try to have it look straight ahead. I may be working on speed, so with each step, I am doing a count to have consistency with each step. I may work on standing straihter. And then sometimes, I throw out the thought process and go as fast as I can and time myself - that is fun.
So while reading The Hunger Games, first I was just drawn into the whole plot. Then there are politics behind things. And then there was me, thinking of the thought processes Katniss had, of her ability to adapt to so many situations, and of the many thought processes that are a part of each day for me, especially if I want to walk.
And I do, I want to walk. A neurologist who is well-known meets with various groups and tells them that the people with MS who walk into his office - the most important thing for them is that they want to walk.
And who knows where I go from here... but I have so many thoughts...
Peace.
I've had a bit of writer's block lately - one moment I think I want to write on one aspect of life; another moment something in life changes and I want to write about that. Then later, neither idea makes sense, or perhaps it would tell too much about things, or perhaps it's just a writer's block and I'm stumped.
But getting back to The Hunger Games where there are kids killing kids... I'm not concentrating on that but on another aspect - perhaps it's in the style of writing... Katniss, the main character, has a great ability to be constantly thinking - if she didn't, she'd be killed. And she has to constantly be shifting her thinking as things change.
This reminds me of my life in a strange way, and is probably true for many with disabilities. While I'm not avoiding someone killing me, I'm constantly reasoning through things, and shifting things, to make things "work" for me. Sometimes, I'm trying to avoid falling. Sometimes I'm trying to find the best way. Sometimes I'm experimenting.
So, a few examples...
Every morning I get up and have a routine to get to the shower, out of the shower, etc. But I don't think most people have a big thought process to go with their morning routine. As I sit on my bed, I'm hoping that when I launch myself, my leg muscles engage so they push me up. If they don't, quickly I have to shift to using my arms. And if I am using my arms, I sit back down and try again. Another thought process occurs right after the shower. I make my way across the floor, and I'm being careful. But if there's water on the floor, I have to re-adjust, knowing that if I slip, I won't recover from it like everyone else. So I plan for that slip, knowing there are several routes to get where I need to go. If I do slip, then rather than a big fall, I should be able to let myself down slowly, and not get hurt.
In the summer it gets hot. When I leave work and it's hot, I have a plan. I pretend I have 2 minutes to get out, get my wheelchair or walker in the car, and get in the car. If I stop to talk, in the sun, I'm going to struggle more. If I take my time disassembling my wheelchair, then to get to the front, I'm out of energy. So I'm thinking at each step of disassembling my chair. Sometimes things still don't go as planned, and I wonder how I will make it to my car.
When I go on some of my walks when I am working at walking, I think several things, and I shift depending on what is happening with my walk. If I am dragging my left leg more than I want, then I use visualization... so I have the Bioness getting the right foot to do what it is supposed to do and I think through mimicking that with my left leg. If my right leg is acting a bit "off," I have to shift thinking. Then I'm making sure my heel is hitting the ground first. That activates the Bioness (there's a heel sensor). So I have to think "heel" with each step. When both legs are "behaving," then I'm working on a longer kick. Or the new thing is I crank my neck back and strain it, and so I try to have it look straight ahead. I may be working on speed, so with each step, I am doing a count to have consistency with each step. I may work on standing straihter. And then sometimes, I throw out the thought process and go as fast as I can and time myself - that is fun.
So while reading The Hunger Games, first I was just drawn into the whole plot. Then there are politics behind things. And then there was me, thinking of the thought processes Katniss had, of her ability to adapt to so many situations, and of the many thought processes that are a part of each day for me, especially if I want to walk.
And I do, I want to walk. A neurologist who is well-known meets with various groups and tells them that the people with MS who walk into his office - the most important thing for them is that they want to walk.
And who knows where I go from here... but I have so many thoughts...
Peace.
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