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.
Tuesday, July 3, 2012
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.
Saturday, May 26, 2012
Journeys and speeches
Last week, I spoke to the "big WIGS" at our organization. Just 3 minutes about our People with Disabilities Business Resource Group. Other groups gave 3 minute talks as well - African American, Latino, Pride (LGBT...), Veterans... While I thought my 3 minutes (in which we were told we could only be positive) was succesful, I thought the bigger part of the evening, might have been the journey to get there.
I met with 2 people to figure out how I would get there because getting anywhere new is always a new adventure. "It's easy - you just cross the street from the parking garage and it's right there. Then the elevator is right at the entrance, you go up, and the reception is right there." Uh huh. Right. Show me. This is the Denver Art Museum and it's downtown, and downtown is never easy for me. In reality, it was just a block and a half, then cross the street........ and for someone like me, the difference between crossing the street and adding a block and a half is a big deal if I'm going to use my walker, which I was.
"Well, there's a drop off spot right by the entrance. Stop there, call me, and I'll come park your car." Right. So I drove there. The museum is actually in a large area. There's not really a drop off spot. Well, there is, but the curb cut isn't there. The curb cut is down the street a bit. I parked there and should have brought my camera to take pictures of the looks I got. Someone came out - not the right person - the person who was pregnant with a bad back. Right. On the 2nd try, 2 people who were not pregnant and did not have a bad back helped. Excellent. Someone parked my car and I walked in.
Even from there it was a pretty far way to get inside. But I made it, just in time for the speeches to begin.
I heard... we are awesome. 43% of our workforce is of color and 75% of our workforce is women. Our founder said it was ok for a person of color to share a hospital room with a white person, and this was way before that was considered ok. (Our founder's son had MS - that was not said). On and on and on and on ... everything but disability, pride, and veterans. Then we each got to talk. Here's my abbreviated talk, which I modified a bit after hearing percentages of other races.
"The rate of disability in the US is about 20%. Unfortunately that will probably go up because baby boomers are aging and we have the obesity epidemic, and obesity lends itself to disability.
Our resource group has 3 Co-Chairs (introduced them). Our group is small, but our members have a lot of passion behind them. I would like to highlight 3 things we do.
First, we have our "Spice of Life" dinner which we have had each October for 3 years. It started as a pilot but grew quickly. Last year we had to limit the number of people from each organization who come. We have people from organizations who work with people with disabilities, people with disabilities, employees who work with people with disabilities, and members of our resource group. We are told no one else does this. It's a place for people to form linkages, the only place people really see each other face to face. Since we're told no one else does this, we're pretty sure our competition doesn't do this. And the businesses who are there - many are our employer groups, so this is good visibility.
The second thing we have is our "Thrive" accessible activity which we have had for 4 years. We know we emphasize health and wellness. We know we emphasize walking. So we make sure we have an accessible activity that shows we model health and wellness for people with disabilities as well. We've done an accessible ropes course in the mountains, an accessible hike in the mountains, and this past year we met at Garden of the Gods. This showcasea our inclusion to the community.
Lastly, we are a voice at the table for our membership ADA outreach committee. We identify gaps in the system. We know we have wheelchair scales - do we use them? We know we have lower exam tables. Are people with disabilities put in rooms with these? We get calls from members and can have those concerns addressed.
Thank you for your time and we hope our events will continue. We hope you will be especially aware of our dinner."
Whew. Done. Soon it was time to go. Getting out was much easier since we knew where my car was parked. The journey was almost complete.
I pulled away from the museum and noticed the homeless parked on the lawn by the capital for the night. They each have their own journey.
The next day I heard of the great, beautiful location with the great view and we should not forget about this for other times.
I won't forget. It was quite a journey. Most things I do are, and people see pieces of those journeys but not the whole thing.
I hope people with disabilities don't continue to be invisible in the world of diversity. There is so much work to do. Our group is so small because people don't disclose disability for fear of losing their job. Even if they have a known disability, they hold back discussing it for the same fear. A fear is being one of the ones camped out in the park, as so many people who have disabilities are homeless. But that is another topic, for another post.
Peace.
I met with 2 people to figure out how I would get there because getting anywhere new is always a new adventure. "It's easy - you just cross the street from the parking garage and it's right there. Then the elevator is right at the entrance, you go up, and the reception is right there." Uh huh. Right. Show me. This is the Denver Art Museum and it's downtown, and downtown is never easy for me. In reality, it was just a block and a half, then cross the street........ and for someone like me, the difference between crossing the street and adding a block and a half is a big deal if I'm going to use my walker, which I was.
"Well, there's a drop off spot right by the entrance. Stop there, call me, and I'll come park your car." Right. So I drove there. The museum is actually in a large area. There's not really a drop off spot. Well, there is, but the curb cut isn't there. The curb cut is down the street a bit. I parked there and should have brought my camera to take pictures of the looks I got. Someone came out - not the right person - the person who was pregnant with a bad back. Right. On the 2nd try, 2 people who were not pregnant and did not have a bad back helped. Excellent. Someone parked my car and I walked in.
Even from there it was a pretty far way to get inside. But I made it, just in time for the speeches to begin.
I heard... we are awesome. 43% of our workforce is of color and 75% of our workforce is women. Our founder said it was ok for a person of color to share a hospital room with a white person, and this was way before that was considered ok. (Our founder's son had MS - that was not said). On and on and on and on ... everything but disability, pride, and veterans. Then we each got to talk. Here's my abbreviated talk, which I modified a bit after hearing percentages of other races.
"The rate of disability in the US is about 20%. Unfortunately that will probably go up because baby boomers are aging and we have the obesity epidemic, and obesity lends itself to disability.
Our resource group has 3 Co-Chairs (introduced them). Our group is small, but our members have a lot of passion behind them. I would like to highlight 3 things we do.
First, we have our "Spice of Life" dinner which we have had each October for 3 years. It started as a pilot but grew quickly. Last year we had to limit the number of people from each organization who come. We have people from organizations who work with people with disabilities, people with disabilities, employees who work with people with disabilities, and members of our resource group. We are told no one else does this. It's a place for people to form linkages, the only place people really see each other face to face. Since we're told no one else does this, we're pretty sure our competition doesn't do this. And the businesses who are there - many are our employer groups, so this is good visibility.
The second thing we have is our "Thrive" accessible activity which we have had for 4 years. We know we emphasize health and wellness. We know we emphasize walking. So we make sure we have an accessible activity that shows we model health and wellness for people with disabilities as well. We've done an accessible ropes course in the mountains, an accessible hike in the mountains, and this past year we met at Garden of the Gods. This showcasea our inclusion to the community.
Lastly, we are a voice at the table for our membership ADA outreach committee. We identify gaps in the system. We know we have wheelchair scales - do we use them? We know we have lower exam tables. Are people with disabilities put in rooms with these? We get calls from members and can have those concerns addressed.
Thank you for your time and we hope our events will continue. We hope you will be especially aware of our dinner."
Whew. Done. Soon it was time to go. Getting out was much easier since we knew where my car was parked. The journey was almost complete.
I pulled away from the museum and noticed the homeless parked on the lawn by the capital for the night. They each have their own journey.
The next day I heard of the great, beautiful location with the great view and we should not forget about this for other times.
I won't forget. It was quite a journey. Most things I do are, and people see pieces of those journeys but not the whole thing.
I hope people with disabilities don't continue to be invisible in the world of diversity. There is so much work to do. Our group is so small because people don't disclose disability for fear of losing their job. Even if they have a known disability, they hold back discussing it for the same fear. A fear is being one of the ones camped out in the park, as so many people who have disabilities are homeless. But that is another topic, for another post.
Peace.
Saturday, May 19, 2012
Thanks
Thank you - 2 simple words. But each donation to the MS Society for the MS Walk means so much. It all added into over $4,000, which is my highest total ever. "Thank you" doesn't seem enough.
For all the donations raised by myself and others over the years, so much has occurred. There were the "ABC" drugs as the first drugs to slow the progression of MS. After those came new drugs, targeting different things, carrying bigger risks, but being more effective at slowing MS than the "ABC" drugs. Recently Ampyra entered the scene as the "walking drug," and the only drug that has really worked for me.
Alongside these drugs have been advancements in technology. Leg braces, called AFOs, have changed over the years. And most recently, there is the Bioness, a robotic type of device triggering nerves and muscles in the legs.
The MS Society also provides programs, services, and grants for people with MS. They helped me get grants for a Bioness. They address employment.
There is much to do. There won't be real satisfaction until there is a cure and/or a vaccine. At the walk, I saw a friend, diagnosed way after me, who is a quadriplegic. We drastically need medicines to cure MS at its onset. One never knows what direction MS will take. We need a vaccine so no one has to hear the words "you have MS."
And there needs to be education to aid those living with MS now. People need to know the effects of heat. They need to do more than just stating they understand. Read. Listen. People need to know that for some, 1 minute of heat, sun, and humidity may make a person with MS temporarily into spaghetti. And people need to know that the symptoms that come and go are not fake and are not used to make excuses. They are real. 1 minute with MS a person is fine; the next minute the person is wondering what train hit them and what to do about it. 1 minute I am fine and sit down; when I stand to get up, things may change - adaptation at every moment of every day. That is not understood by everyone - some people "get it," some people don't and never will, and some people say they "get it," but don't and never will.
But thanks to so many, we are getting there. New research, help for those living with MS, and education. "Step" by "step."
And for me, God there along every "step" of this "adventure," where I am fortunate and cannot fully express my gratitude to friends and family who support me, who "get it," on a minute by minute, day by day, year by year, lifetime basis. Thank you.
(And the thank you photo cards are printed and on the way :) )
Peace.
For all the donations raised by myself and others over the years, so much has occurred. There were the "ABC" drugs as the first drugs to slow the progression of MS. After those came new drugs, targeting different things, carrying bigger risks, but being more effective at slowing MS than the "ABC" drugs. Recently Ampyra entered the scene as the "walking drug," and the only drug that has really worked for me.
Alongside these drugs have been advancements in technology. Leg braces, called AFOs, have changed over the years. And most recently, there is the Bioness, a robotic type of device triggering nerves and muscles in the legs.
The MS Society also provides programs, services, and grants for people with MS. They helped me get grants for a Bioness. They address employment.
There is much to do. There won't be real satisfaction until there is a cure and/or a vaccine. At the walk, I saw a friend, diagnosed way after me, who is a quadriplegic. We drastically need medicines to cure MS at its onset. One never knows what direction MS will take. We need a vaccine so no one has to hear the words "you have MS."
And there needs to be education to aid those living with MS now. People need to know the effects of heat. They need to do more than just stating they understand. Read. Listen. People need to know that for some, 1 minute of heat, sun, and humidity may make a person with MS temporarily into spaghetti. And people need to know that the symptoms that come and go are not fake and are not used to make excuses. They are real. 1 minute with MS a person is fine; the next minute the person is wondering what train hit them and what to do about it. 1 minute I am fine and sit down; when I stand to get up, things may change - adaptation at every moment of every day. That is not understood by everyone - some people "get it," some people don't and never will, and some people say they "get it," but don't and never will.
But thanks to so many, we are getting there. New research, help for those living with MS, and education. "Step" by "step."
And for me, God there along every "step" of this "adventure," where I am fortunate and cannot fully express my gratitude to friends and family who support me, who "get it," on a minute by minute, day by day, year by year, lifetime basis. Thank you.
(And the thank you photo cards are printed and on the way :) )
Peace.
Subscribe to:
Posts (Atom)