Several months ago, out of curiosity, I googled "exoskeleton legs." It seemed to me that surely someone out there might be working on a robotic device, like leg braces, that would allow someone like me to be able to walk farther, maybe even climb mountains.
I found a couple of things that were interesting. One is being developed by Honda, and it has a small saddle-type seat (kind of like a bike) and attaches to the feet. It runs on a battery, and apparently works by taking some of the weight off your legs and helping to lift your legs up for walking. Pretty cool. But kind of funny-looking. Still, I'm willing to look a little funny if it will allow me to walk further!
Another device I found is called HAL- Hybrid Assistive Limb. It's made by Cyberdyne, and looks a bit like a Storm Trooper outfit. But apparently they also make a half-body version for the legs only. This one attaches around the waist, and also uses a battery pack to lift the legs. They say it can increase your strength by a factor of 2 to 10, and they said it was specially designed for climbing mountains! Unfortunately it's not available in the US yet. But they say to be patient, it will come!
For now, there is a device that is a little lower tech, but may help me out. It's called Mu Smate, and it was developed by a man in England whose wife has multiple sclerosis. It straps around the back and goes down to the feet, and works by lifting the feet up. Others with MS who tried the device and were able to increase their walking speed and distance significantly. And even though I have Congenital Myasthenic Syndrome and not Multiple Sclerosis, they are both degenerative neuro-muscular disorders. So maybe, just maybe, this little device could help me too. I think it could be worth a try.
Here are links to each of these devices:
Honda device (I don't think they've named it yet!) http://www.hondanews.com/search/release/4872?q=walking&s=honda
H.A.L. by Cyberdine: http://www.hondanews.com/search/release/4872?q=walking&s=honda
Mu Smate: http://www.musmate.co.uk/index2.html
Wednesday, September 30, 2009
Thursday, September 24, 2009
Creatine?
I remember hearing about Creatine several years ago, but I've never had a doctor recommend it for me. Last week I had a follow-up appointment with my neurologist, and I asked if there was anything to do to improve my muscle recovery time. And he suggested taking Creatine.
I'm not sure how long it will take to see if it makes a difference. It's bad enough I get weak so quickly, but then it takes so long to recover! It's really getting in the way of my 5k training! There is such a delicate balance, trying to push myself enough to improve, but not so much that I overexert myself and can't do anything for a week or two!
I've been really weak the last week or so, and there doesn't seem to be any explanation for it. But I am still determined to keep moving forward, to keep trying to figure out how to be STRONG! I already see that being more active leads me to having more energy and endurance, so that I am able to have more "strong" days. But man, on those weak days it is so hard to make myself be active. And I KNOW that even doing a little bit on those weak days is better than doing nothing. It's like I get "over-rested." So the more I rest, the longer it takes for me to recover. But if I walk, even for just a few minutes, when I'm weak, I tend to improve faster. Amazing!
Sometimes I really wish I could look inside my body and see just what is going on in there. What happens when a message is sent from my brain to the muscle? What exactly is the problem? Why is it so complicated? Once a muscle gets over stimulated, what is the best way to help that muscle recover? And there is the problem of the weakness in my mouth & eyes. That seems much more difficult to overcome than even my legs! My eyelids just do not want to open all the way! How can I give my eyes and mouth adequate rest, without sleeping? Should I become a mute and walk around with my eyes closed 80% of the time? Then the other 20% of the time maybe I could smile and my eyes would be wide open! Ugh. Wish I had the answers.
Well, if anyone has suggestions for how I might get stronger, please let me know! I am always open to suggestions! For now, I'll try the Creatine and see how it goes!
I'm not sure how long it will take to see if it makes a difference. It's bad enough I get weak so quickly, but then it takes so long to recover! It's really getting in the way of my 5k training! There is such a delicate balance, trying to push myself enough to improve, but not so much that I overexert myself and can't do anything for a week or two!
I've been really weak the last week or so, and there doesn't seem to be any explanation for it. But I am still determined to keep moving forward, to keep trying to figure out how to be STRONG! I already see that being more active leads me to having more energy and endurance, so that I am able to have more "strong" days. But man, on those weak days it is so hard to make myself be active. And I KNOW that even doing a little bit on those weak days is better than doing nothing. It's like I get "over-rested." So the more I rest, the longer it takes for me to recover. But if I walk, even for just a few minutes, when I'm weak, I tend to improve faster. Amazing!
Sometimes I really wish I could look inside my body and see just what is going on in there. What happens when a message is sent from my brain to the muscle? What exactly is the problem? Why is it so complicated? Once a muscle gets over stimulated, what is the best way to help that muscle recover? And there is the problem of the weakness in my mouth & eyes. That seems much more difficult to overcome than even my legs! My eyelids just do not want to open all the way! How can I give my eyes and mouth adequate rest, without sleeping? Should I become a mute and walk around with my eyes closed 80% of the time? Then the other 20% of the time maybe I could smile and my eyes would be wide open! Ugh. Wish I had the answers.
Well, if anyone has suggestions for how I might get stronger, please let me know! I am always open to suggestions! For now, I'll try the Creatine and see how it goes!
Friday, September 11, 2009
wheelchair tennis? cool!
This morning on the Today show, there was a story about people who are disabled and play tennis in their wheelchairs. I love stories like that! There are so many people with disabilities that just want to live as fully as possible. Many disabled people find ways to participate in sports, music, film, theater.
Often the world looks at those of us with disabilities and thinks that we are incapable of doing practically anything. But most of us do not desire to lie around our houses, alone, watching TV and feeling sorry for ourselves all day. We want to LIVE! We want to experience so many things. Yes, we have to be creative in finding ways to do what we want to do. But it is worth it. There are disabled people who have created a way to ski (chair skis), surf, ride horses, drive cars with hand controls. I even recently read about people who hike-mountains!!!!- in wheelchairs! It is incredible, and so inspiring!
I want to be one of THOSE people. Not for glory or fame, but for my own personal satisfaction. I want my life to be full, and extraordinary. I am so thankful for the strength I have, for how much I am able to walk. So thankful that I can dance sometimes, that I can even now run- even if just a little bit! But I don't want my times of weakness to keep me from experiencing the world. I know it is not always easy to find a way to get around in a world that is built for people who can walk. But, I have been able to manage so far. And I want to do even better. I am going to keep working toward my goal of doing a 5k. I've already hiked down a mountain, and next I want to work on climbing UP!
Check out these links to some truly inspiring people:
Ester Vergeer: wheelchair tennis champ
Wheelchair hiker
Ivan Kozhouharov: paralyzed man attempting to climb Mont Blanc
Disabled Surfers
Often the world looks at those of us with disabilities and thinks that we are incapable of doing practically anything. But most of us do not desire to lie around our houses, alone, watching TV and feeling sorry for ourselves all day. We want to LIVE! We want to experience so many things. Yes, we have to be creative in finding ways to do what we want to do. But it is worth it. There are disabled people who have created a way to ski (chair skis), surf, ride horses, drive cars with hand controls. I even recently read about people who hike-mountains!!!!- in wheelchairs! It is incredible, and so inspiring!
I want to be one of THOSE people. Not for glory or fame, but for my own personal satisfaction. I want my life to be full, and extraordinary. I am so thankful for the strength I have, for how much I am able to walk. So thankful that I can dance sometimes, that I can even now run- even if just a little bit! But I don't want my times of weakness to keep me from experiencing the world. I know it is not always easy to find a way to get around in a world that is built for people who can walk. But, I have been able to manage so far. And I want to do even better. I am going to keep working toward my goal of doing a 5k. I've already hiked down a mountain, and next I want to work on climbing UP!
Check out these links to some truly inspiring people:
Ester Vergeer: wheelchair tennis champ
Wheelchair hiker
Ivan Kozhouharov: paralyzed man attempting to climb Mont Blanc
Disabled Surfers
Thursday, September 10, 2009
Oh yeah, I'm also an artist...
Here is a link to my art website, just in case you want to check it out: www.lizhume.com
Wednesday, September 9, 2009
Struggle
A couple of weeks ago I took a wonderful trip to Asheville, NC- and completely wore myself out! I went to the Biltmore and spent the whole day there- climbing all those steps and exploring the gardens. It was beautiful, but exhausting. Then the following day, we went to several of the waterfalls in the area, which required a bit of hiking. It was definitely a struggle! My boyfriend ended up giving me a piggy-back ride a couple of times! It made me pretty weak, but I still think it was worth it.
It's so hard sometimes dealing with this disease. There are days when I am so strong I almost forget that I have congenital myasthenic syndrome! Then there are days I am so weak, I wonder if I will ever be strong again.
So, here I am trying to follow this "couch-to-5k" plan, and after that weekend I was completely unable to train! I'm thinking it may take me longer than a couple of months to reach my goal, but I still think it's possible. I probably walked about that much at the Biltmore! Plus I was going up & down tons of stairs! But that was a couple of weeks ago, and I am just now starting to feel a little stronger.
Sometimes I wish I could see inside my body, and know what is really going on in there! How exactly are these nerves & muscles supposed to work together? How do muscles recover after exercise, and why does it seem to take me so much longer to recover than people without this disorder? All of the research I have read only mentions the problem of nerve transmission to the muscle. Nothing addresses muscle recovery. If I could just get my muscles to recover faster, I could do so much more!
So, I am struggling. Sometimes I get a bit discouraged, and feel like what I want is just impossible. But I reminded myself this morning that the body is incredibly complex, and no one can really fully explain it. Some people have serious illnesses and go into complete remission, while others with the same condition continue to decline. I have heard that some people with Myasthenia Gravis go into remission, but I have only heard of that in acquired cases, not congenital cases. I'd love to be in remission! I would be unstoppable! Look out, mountains, here I come!
It's so hard sometimes dealing with this disease. There are days when I am so strong I almost forget that I have congenital myasthenic syndrome! Then there are days I am so weak, I wonder if I will ever be strong again.
So, here I am trying to follow this "couch-to-5k" plan, and after that weekend I was completely unable to train! I'm thinking it may take me longer than a couple of months to reach my goal, but I still think it's possible. I probably walked about that much at the Biltmore! Plus I was going up & down tons of stairs! But that was a couple of weeks ago, and I am just now starting to feel a little stronger.
Sometimes I wish I could see inside my body, and know what is really going on in there! How exactly are these nerves & muscles supposed to work together? How do muscles recover after exercise, and why does it seem to take me so much longer to recover than people without this disorder? All of the research I have read only mentions the problem of nerve transmission to the muscle. Nothing addresses muscle recovery. If I could just get my muscles to recover faster, I could do so much more!
So, I am struggling. Sometimes I get a bit discouraged, and feel like what I want is just impossible. But I reminded myself this morning that the body is incredibly complex, and no one can really fully explain it. Some people have serious illnesses and go into complete remission, while others with the same condition continue to decline. I have heard that some people with Myasthenia Gravis go into remission, but I have only heard of that in acquired cases, not congenital cases. I'd love to be in remission! I would be unstoppable! Look out, mountains, here I come!
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