One day after just finishing up working with client at nearby recreation center, I happened upon a stunning site.
Picture this: A man, mid to late 40's, and in a wheelchair. It appeared as though the curvature of his spine and lack of muscle strength in his back prevented him from sitting straight in his chair.
He was very hunched over and leaning to one side. While in this position, he was actively using a hanging punching bag. He was hitting it hard enough that the bag was moving quite a bit. He was only able to use one arm.
This experience made my mind travel in many directions. I pondered a great deal about him and the fitness effort that he was making.
I also had the sense that though his body wasn't ideal for the boxing effort, he didn't seem to be a stranger to the punching bag in anyway.
My client also watched this man for a moment as we were wrapping up and rescheduling. I could see that my client was also moved by the experience.
After my client left, I walked over to the treadmill to get some running in while I had the chance. I ran on the treadmill for 30-minutes, in between clients. The wheelchair boxer was there punching the entire time! That is an extremely long time at a punching bag. He was slow, but very strong, and very consistent.
He stopped once someone who looked like a health aid arrived, this was near the end of my run. The aid and the boxer conversed in a way that appeared as though the boxer was teaching the aid something. They then cleared and left the area.
It is when I see things like this that I am just blown away by how much effort it takes for some people to be involved in life and various events that the general population take for granted.
These people are often times more involved and more engaged than fully able bodied people. These efforts often go unnoticed, unrecognized for what it is, or we actually avoid looking.
I challenge you to not only look at these people, but give eye contact and smile. Look at them, talk to them, learn from them, and train with them.
Showing posts with label Disability. Show all posts
Showing posts with label Disability. Show all posts
Monday, July 27, 2015
Saturday, February 15, 2014
A Crushed Heart Can Lead to Triumph
This is the moment. Just as imagined and hoped for. So much preparation has gone into getting to this exact point. Can a heart really pound this intensely without bursting? It's time to shine and overcome what you once thought was impossible.
This is the description of a moment we have all experienced at some point. The nervousness, excitement, hope, and simultaneous dread; hoping all things go as dreamed, as imagined.
This is Sweet-pea's story. Sweet-pea is the fictitious name of a real person - my friend.
Using my skills as a personal trainer, I volunteer at a center for developmentally delayed adults. This is where Sweet-pea and I met.
The need for personal training with this special needs population is so high and often over-looked because it's not glamorous personal training. However, from my perspective, this is one of the populations that need it most.
How would you feel bound to mobility aides, immobilizing braces, and straps? For a brief time at this center, about 20 of the patrons receive continued and personalized training throughout the week. A grant and volunteers makes this possible. Sweet-pea is one of the 20 who receive these benefits.
Sweet-pea is in her late 40's to early 50's and uses a wheelchair. She can't talk, but she gestures and nods "yes" and "no". Sweet-pea is strong-willed and as independent as she can be. She loves to tease and has a natural "Oh ya? Just watch me attitude."
Sweet-pea's neck leans excessively forward (practically touching her clavicle) due to postural and upper body weakness. As directed by a physical therapist, we've been working with her to walk with the aid of a walker as we follow behind her with a wheel-chair to catch her (just in case). This week the goal was big and Sweet-pea was eager for it.
Sweet-pea was going to walk about 80-feet with only three rest stops. She was ready. She could see it and taste the victory. She was particular about a friend watching. She was also specific that no one should get in her way as she walked the hall from point A to point B and back. She was nervous, but oh so ready for the challenge. So she began her walk.
For some reason there was an suddenly an unusual amount of hallway traffic and after 15 or so feet she gave up in anger and her heart was obviously crushed. Everyone was in the way. This was her time and the obstacles were too great. Crying and bitter she stopped.
Angry and yelling she wheeled herself away, crying and hurting she tried to hide. Sweet-pea's dreams, hope, and hard work seem to be for nothing from her perspective. My heart broke watching this breakdown. She was expressing herself the only way she could as language wasn't even hers to own.
I don't know how, but by some miracle me and her friend were able to talk her into coming back in to the gym room to finish a light workout. We were also able to reschedule "the great walk" for the next day during what we hoped would be a less busy hallway traffic time.
Unfortunately I wouldn't be able to be there for her the next day. I prayed for her and she was heavy on my mind all night. I know the need to accomplish a goal like that. This was big and she was ready, but the circumstance was against her.
I was pleased to hear the next day that not only were the conditions just right for her, but she did "the great walk" and with only one rest stop! Though I wasn't there for it, I could see it in my mind's eye.
Instead of her arm flailing in anger to motion people away and screaming in anger, I could see her arm triumphantly motioning the joy of success. I could hear her scream have the energy of an Olympic gold winning, "Yes! Yes! Yes!" I could even feel the joy and relief from the other trainers and aids as her goal was met this time.
And with the previous nervousness, excitement, hope, and simultaneous dread; hoping all things go as dreamed, as imagined. There is now an equal sense of relief, accomplishment, satisfaction, and humility. This is just my feeling about Sweet-pea s adventure. I can't even imagine what she must be feeling. Go girl!
This is the description of a moment we have all experienced at some point. The nervousness, excitement, hope, and simultaneous dread; hoping all things go as dreamed, as imagined.
This is Sweet-pea's story. Sweet-pea is the fictitious name of a real person - my friend.
Using my skills as a personal trainer, I volunteer at a center for developmentally delayed adults. This is where Sweet-pea and I met.
The need for personal training with this special needs population is so high and often over-looked because it's not glamorous personal training. However, from my perspective, this is one of the populations that need it most.
How would you feel bound to mobility aides, immobilizing braces, and straps? For a brief time at this center, about 20 of the patrons receive continued and personalized training throughout the week. A grant and volunteers makes this possible. Sweet-pea is one of the 20 who receive these benefits.
Sweet-pea is in her late 40's to early 50's and uses a wheelchair. She can't talk, but she gestures and nods "yes" and "no". Sweet-pea is strong-willed and as independent as she can be. She loves to tease and has a natural "Oh ya? Just watch me attitude."
Sweet-pea's neck leans excessively forward (practically touching her clavicle) due to postural and upper body weakness. As directed by a physical therapist, we've been working with her to walk with the aid of a walker as we follow behind her with a wheel-chair to catch her (just in case). This week the goal was big and Sweet-pea was eager for it.
Sweet-pea was going to walk about 80-feet with only three rest stops. She was ready. She could see it and taste the victory. She was particular about a friend watching. She was also specific that no one should get in her way as she walked the hall from point A to point B and back. She was nervous, but oh so ready for the challenge. So she began her walk.
For some reason there was an suddenly an unusual amount of hallway traffic and after 15 or so feet she gave up in anger and her heart was obviously crushed. Everyone was in the way. This was her time and the obstacles were too great. Crying and bitter she stopped.
Angry and yelling she wheeled herself away, crying and hurting she tried to hide. Sweet-pea's dreams, hope, and hard work seem to be for nothing from her perspective. My heart broke watching this breakdown. She was expressing herself the only way she could as language wasn't even hers to own.
I don't know how, but by some miracle me and her friend were able to talk her into coming back in to the gym room to finish a light workout. We were also able to reschedule "the great walk" for the next day during what we hoped would be a less busy hallway traffic time.
Unfortunately I wouldn't be able to be there for her the next day. I prayed for her and she was heavy on my mind all night. I know the need to accomplish a goal like that. This was big and she was ready, but the circumstance was against her.
I was pleased to hear the next day that not only were the conditions just right for her, but she did "the great walk" and with only one rest stop! Though I wasn't there for it, I could see it in my mind's eye.
Instead of her arm flailing in anger to motion people away and screaming in anger, I could see her arm triumphantly motioning the joy of success. I could hear her scream have the energy of an Olympic gold winning, "Yes! Yes! Yes!" I could even feel the joy and relief from the other trainers and aids as her goal was met this time.
And with the previous nervousness, excitement, hope, and simultaneous dread; hoping all things go as dreamed, as imagined. There is now an equal sense of relief, accomplishment, satisfaction, and humility. This is just my feeling about Sweet-pea s adventure. I can't even imagine what she must be feeling. Go girl!
Sunday, April 29, 2012
Failure
I recently posted on Facebook.com/KickingTrash about a fitness program called Tony & The Folks.
I stated that it is a program that's excellent for people that are: over sixty years old, sedentary, and obese. I have had many questions about this that make me feel the urge to explain why I say that, as well as to explain in detail why you might actually be ready for more.
Disclaimer: I'm not a doctor; the following assessment is my own personal opinion and critique, colored by my life experience with Multiple Sclerosis.
Before I get into everything, I wanted to explain why "failure", specifically with regards to exercise, is an extremely good thing. Reaching muscle failure while working out is where the real muscle is built.
Literally going until you can't do anymore and then squeezing out just one to three more - now that's where the money is.
As we age muscle naturally declines, which is why, to stay fit - you must continue to do strength training exercises. Muscle is what burns the fat from your body. So, we need to keep adding the muscle back on.
Now on to explain Tony & The Folks...I will use me as an example to explain each of these programs, so you have something to refer to for the sake of comparison.
When I first started working out in 2007, I had extremely poor balance, chronic migraines, random symptoms of vertigo, lifting a water bottle or soup can (like one to three pound weights) was all I could handle for repetitive lifting, a five pound weight was my limit.
It was hard to get off the couch or out of a car that had its carriage lower to the ground. It wasn't too difficult to get out of a chair; though I preferred staying in one. It was hard to on be on my feet for long periods of time.
I was out of breath walking down the hall. I had barely enough energy to do laundry. Above all, my motivation was in the tank. This lack of motivation and mental distress is very likely what made all of the aforementioned more difficult than it really was. On that note....
I stated that it is a program that's excellent for people that are: over sixty years old, sedentary, and obese. I have had many questions about this that make me feel the urge to explain why I say that, as well as to explain in detail why you might actually be ready for more.
Disclaimer: I'm not a doctor; the following assessment is my own personal opinion and critique, colored by my life experience with Multiple Sclerosis.
Before I get into everything, I wanted to explain why "failure", specifically with regards to exercise, is an extremely good thing. Reaching muscle failure while working out is where the real muscle is built.
Literally going until you can't do anymore and then squeezing out just one to three more - now that's where the money is.
As we age muscle naturally declines, which is why, to stay fit - you must continue to do strength training exercises. Muscle is what burns the fat from your body. So, we need to keep adding the muscle back on.
When you feel heavy,
it's often due to a lack of strong muscle mass.
When you feel light in the body,
it's generally because you feel strong.
I now know that no matter my health condition, I will and must continue to do whatever strength training I can, on any level that I can.Now on to explain Tony & The Folks...I will use me as an example to explain each of these programs, so you have something to refer to for the sake of comparison.
When I first started working out in 2007, I had extremely poor balance, chronic migraines, random symptoms of vertigo, lifting a water bottle or soup can (like one to three pound weights) was all I could handle for repetitive lifting, a five pound weight was my limit.
It was hard to get off the couch or out of a car that had its carriage lower to the ground. It wasn't too difficult to get out of a chair; though I preferred staying in one. It was hard to on be on my feet for long periods of time.
I was out of breath walking down the hall. I had barely enough energy to do laundry. Above all, my motivation was in the tank. This lack of motivation and mental distress is very likely what made all of the aforementioned more difficult than it really was. On that note....
Tony & The Folks
This is probably very close to the level of activity that I was actually at when my husband showed me P90X. There was NO WAY I could do that program.
However, I modified it to the hilt and did as much as I could, for as long as I could, the best I could. Those modifications were very similar to the movements and style of the Tony & The Folks program and it may have still been too easy for me in several respects.
However, I was indeed working out on this level in the Summer of 2007. Long before the Fall of 2007 I had significantly improved. So by the time Fall came, I was simply way too advanced for this program. I hope this gives you an idea of who this program would be good for.
RECOMMENDATION: I would advise and encourage this as a good starter for anyone who is obese, sedentary, chronically ill, not working out much or at all. You may even be even in a convalescent center and over sixty. It's definitely a good cheap (ten-dollar) disc to find out where you stand, without the need of a trainer. But it's only one disc that's thirty minutes long.
You can kick it up a notch with the intensity you put behind it and in the weights you can lift while still maintaining correct posture. If you still struggle with maintenance and care of your home or yourself, you may still need to slow it down or modify, but this would definitely be good for you! It's about getting you moving and getting blood pumping.
10 Minute Trainer (TMT)
If you are doing Zumba on a beginner level, playing Wii Sports and being challenged to your limits by it, then this may be a good program for you.
If you get into it and find it's not challenging enough, then stack the workouts back to back and get twenty minutes out of them, rather than ten.
NOTE: In all honesty and reality, this is probably the level I was at after about a week to ten days of modifying P90X to the Tony & The Folks level that I had been at. It was my balance that had to catch up and improve... to be challenged.
Power 90 In Home Boot Camp
I continued the modifications as noted above and I improved a great deal very rapidly, though still modifying a quite a bit of the P90X program.
However, by the time my muscles failed I was following the workout while on the elliptical to do what I could there. By the Fall of 2008 I was working out on a level similar to Power 90 with little modifications. I was still following the program with a stationary bike or elliptical cardio.
RECOMMENDATION: I would advise and encourage that regardless of your age, if you are fully capable of taking care of your own house, personal and family needs and you have some physical energy reserve left when you enjoy weekend golf, an occasional bike ride, or neighborhood stroll, then Power 90 would probably be a very good thing for you. The modifications to cater to your abilities are in the weights you use and the intensity you bring to the program.
This is probably very close to the level of activity that I was actually at when my husband showed me P90X. There was NO WAY I could do that program.
However, I modified it to the hilt and did as much as I could, for as long as I could, the best I could. Those modifications were very similar to the movements and style of the Tony & The Folks program and it may have still been too easy for me in several respects.
However, I was indeed working out on this level in the Summer of 2007. Long before the Fall of 2007 I had significantly improved. So by the time Fall came, I was simply way too advanced for this program. I hope this gives you an idea of who this program would be good for.
RECOMMENDATION: I would advise and encourage this as a good starter for anyone who is obese, sedentary, chronically ill, not working out much or at all. You may even be even in a convalescent center and over sixty. It's definitely a good cheap (ten-dollar) disc to find out where you stand, without the need of a trainer. But it's only one disc that's thirty minutes long.
You can kick it up a notch with the intensity you put behind it and in the weights you can lift while still maintaining correct posture. If you still struggle with maintenance and care of your home or yourself, you may still need to slow it down or modify, but this would definitely be good for you! It's about getting you moving and getting blood pumping.
10 Minute Trainer (TMT)
If you are doing Zumba on a beginner level, playing Wii Sports and being challenged to your limits by it, then this may be a good program for you.
If you get into it and find it's not challenging enough, then stack the workouts back to back and get twenty minutes out of them, rather than ten.
NOTE: In all honesty and reality, this is probably the level I was at after about a week to ten days of modifying P90X to the Tony & The Folks level that I had been at. It was my balance that had to catch up and improve... to be challenged.
Power 90 In Home Boot Camp
I continued the modifications as noted above and I improved a great deal very rapidly, though still modifying a quite a bit of the P90X program.
However, by the time my muscles failed I was following the workout while on the elliptical to do what I could there. By the Fall of 2008 I was working out on a level similar to Power 90 with little modifications. I was still following the program with a stationary bike or elliptical cardio.
RECOMMENDATION: I would advise and encourage that regardless of your age, if you are fully capable of taking care of your own house, personal and family needs and you have some physical energy reserve left when you enjoy weekend golf, an occasional bike ride, or neighborhood stroll, then Power 90 would probably be a very good thing for you. The modifications to cater to your abilities are in the weights you use and the intensity you bring to the program.
ChaLEAN Extreme and P90X
By mid-2008 I was working out on a level between ChaLEAN Extreme (shorter, still intense workouts) and P90X (longer more intense workouts).
By 2009 I was at a P90X level for sure! Now there are still some modifications I have to make, depending on my balance and crazy health circumstances of the day, but I can do it!
The biggest P90X challenge that I still face is Yoga X - thank you balance issues. RECOMMENDATION: I would advise and encourage that regardless of your age, if you are fully capable of taking care of your own house, personal, as well as family needs and you have a some physical energy reserve left for tennis, running, or Power 90 doesn't challenge you as much anymore then ChaLEAN Extreme would absolutely be a very good thing for you and maintaining your lifestyle.
P90X would be an excellent semi-annual or annual challenge to help keep you humble and or push the limits. Again, the modifications to cater to your abilities are in the weights you use and the intensity you bring to the program.
TurboFire, P90X2, and Insanity are for crazy people or people who need to break through a plateau or enjoy a big challenge. Everyone should be humbled like this from time to time.
These programs are not for people with bad hips or bad knees. However, through modifications you can still get some of these programs to cater to your abilities. It's all about creativity and the intensity you bring to the programs.
There are many more programs I could talk about, but I hope this has been a good glimpse of assessing your own ability level. The biggest blessing getting fit brings is truly to show the mind that you can do this.
It builds confidence. If it's not building confidence to see yourself do this stuff, VISUALIZE yourself doing these things frequently. You likely have a negative mindset that needs changing.
It's also not about "finding time" it's about "making time" to do the things your body needs to be healthy. I know this too, as I have been there and I continue to fight it as well.
By mid-2008 I was working out on a level between ChaLEAN Extreme (shorter, still intense workouts) and P90X (longer more intense workouts).
By 2009 I was at a P90X level for sure! Now there are still some modifications I have to make, depending on my balance and crazy health circumstances of the day, but I can do it!
The biggest P90X challenge that I still face is Yoga X - thank you balance issues. RECOMMENDATION: I would advise and encourage that regardless of your age, if you are fully capable of taking care of your own house, personal, as well as family needs and you have a some physical energy reserve left for tennis, running, or Power 90 doesn't challenge you as much anymore then ChaLEAN Extreme would absolutely be a very good thing for you and maintaining your lifestyle.
P90X would be an excellent semi-annual or annual challenge to help keep you humble and or push the limits. Again, the modifications to cater to your abilities are in the weights you use and the intensity you bring to the program.
TurboFire, P90X2, and Insanity are for crazy people or people who need to break through a plateau or enjoy a big challenge. Everyone should be humbled like this from time to time.
These programs are not for people with bad hips or bad knees. However, through modifications you can still get some of these programs to cater to your abilities. It's all about creativity and the intensity you bring to the programs.
There are many more programs I could talk about, but I hope this has been a good glimpse of assessing your own ability level. The biggest blessing getting fit brings is truly to show the mind that you can do this.
It builds confidence. If it's not building confidence to see yourself do this stuff, VISUALIZE yourself doing these things frequently. You likely have a negative mindset that needs changing.
It's also not about "finding time" it's about "making time" to do the things your body needs to be healthy. I know this too, as I have been there and I continue to fight it as well.
Friday, April 20, 2012
Melene's Story
My sister rocks! Melene is my older blister, er, I mean sister and she is genuinely cool without even trying. Melene, like me, has Multiple Sclerosis (diagnosed in 1998).
Melene used to be an avid volleyball player, leisure Moab Slick Rock biker, and hiker. When MS hit, it was hard, fast - anything but kind.
Melene was then left to pick up the pieces, somehow cope, be a new mom in her early years of marriage, and redefine her new norm. Her road has been tough and scary. But her humor, kindheartedness, subtle determination, and ingenuity has made this road easier to travel for sure.
I know of no one else that can make yelling at a fire hydrant to cross the road or receiving a warning for peeing behind a police station sound absolutely hilarious without making you feel sorry for them.
Melene takes it as it comes and does the best she can with a wonderful, even cheerful attitude. I admire this lady and am pleased to call her my sister.
Last year Melene discovered a love for recumbent biking and since then she's discovered several other things that she can do, despite predominantly using a cane and a wheelchair in settings where there are large gatherings.
Thanks to Melene's fighter attitude and the amazing help of National Ability Center, she has returned to biking, skiing, swimming, and will soon try out horseback riding. I lied, skiing wasn't really in the picture pre-diagnosis, so that one is all new!
When diagnosis and disability came for Melene, she felt unable to continue "active living". Melene honestly thought she'd not be able to do these kind of activities again... she's since found that with a little creativity and patience, that these things can indeed be done.
Enjoying these activities are not lost after all; just a little altered - and there's absolutely nothing wrong with that.
I would like to take a moment here and thank those at the National Ability Center for putting up with Melene during this time. It must be very difficult to laugh and enjoy yourselves so much while helping her redefine her abilities. Thank you for all your hard work!
I simply can't think of a better place for philanthropic efforts to be spent than in support of clinical research to improve medical options or for places like the National Ability Center to improve hope and quality of life.
If for no other reason than this (benefiting Melene) the funds have been entirely worth it. I'm sure they would appreciate any donation you could give.
In addition to the National Ability Center, please note that on April 28 I will be walking with a few friends, like we have walked for the MS Walk before.
If you feel like you would like to make a donation toward MS research, programs, and support please consider donating to team Diana's Dream, by visiting this site. Melene, this is a lifelong walk for sure, isn't it?
Saturday, March 24, 2012
Canyonlands Half Marathon
 |
| Just showing up to run a Half Marathon! Left to Right: Laura, Melanie, Diana, Tiffany, Janice. |
Even if I couldn't have run that, I would have done something ... anything to defy the odds of my current circumstance. Even though I had my fight on, I was nervous. And for some darn reason, I was even doubtful. This doubt downright ticked me off.
It was interesting to show up for something like that and just go with the flow. I trained, I registered, so I was going to do it and do it to the best of my ability. Then came the wind... good night!
Average winds during the race were twenty-two to thirty-five miles per hour - the entire way. The winds didn't have the courtesy of blowing at my back either. I wanted so badly to stay with the 2two hour, twenty-minute race pacer, who just happened to be my cousin.
However, this day wasn't the day for that kind of running. I was able to stay with that pacing group for about five or six miles, though. It was unsafe for me to keep that pace.
The wind and I were fighting and in order for me to feel good about the run and keep all my faculties together; I had to slow it down and run my own race.
I even speed walked collectively about three miles. Oh! I can't forget to praise the makers of Imodium and Pepto-Bismol chewable tablets! Thanks to them, I was able to keep my inner workings from further complicating things like they did for the Salt Lake City Half Marathon.
When I got to the last quarter mile I did what I always do in finishing races, I gave it all I had to cross the finish. Every muscle protested with each step, but I crossed with all my energy reserve.
At the finish was my totally awesome husband waiting for me and all I could do was hug him and cry a bit. His arms have felt like a refuge many times over our married life, but at that moment I felt saved. I love you Josh!
So with this being a tribute to pretty much say "F-You Multiple Sclerosis", I would like to raise awareness and point you to a full description about MS, which can be found at this website.
However, please note that MS affects each person differently. Just because you knew someone with a horrible MS experience DOES NOT mean your experience (or mine) will be the same. So please, stop telling horror stories to people who are newly diagnosed.
Also, comparison, bitterness and fear are only a fast track to absolutely nowhere. Not everyone with MS can walk, but by no means does this mean you are doomed either.
What I am saying is more universal: that we must accept the ailment, so that we can move beyond it. Treat the disease with the options you have available and then live to the best of your current ability - which may vary over time. It's just like I mentioned above, "...I had to run my own race."
Do yourself and everyone around you a huge favor and refuse to live life based on the unpredictability of disease. I'm not saying that everything will be happy, I'm simply saying find ways to accommodate your needs and l-i-v-e.
It is what it is and you can always live your life to the best of your current ability. This ability is determined by your attitude.
I feel a burden to be constantly on the lookout for ways to accommodate my current abilities, so that I feel able-minded. Yes, be aware of MS (or whatever disease affects someone close to you), and be aware of the various states of the disease: extreme, abnormal, and mild forms.
Not only that, but become aware of what people are doing even though they have a disease. You may not be able to do exactly the same things as others, but you should be able to see that pretty much the only thing stopping you is yourself.
The National Ability Center is a prime example of what can be done, when you believe or have someone believe in you.
Average winds during the race were twenty-two to thirty-five miles per hour - the entire way. The winds didn't have the courtesy of blowing at my back either. I wanted so badly to stay with the 2two hour, twenty-minute race pacer, who just happened to be my cousin.
However, this day wasn't the day for that kind of running. I was able to stay with that pacing group for about five or six miles, though. It was unsafe for me to keep that pace.
The wind and I were fighting and in order for me to feel good about the run and keep all my faculties together; I had to slow it down and run my own race.
I even speed walked collectively about three miles. Oh! I can't forget to praise the makers of Imodium and Pepto-Bismol chewable tablets! Thanks to them, I was able to keep my inner workings from further complicating things like they did for the Salt Lake City Half Marathon.
When I got to the last quarter mile I did what I always do in finishing races, I gave it all I had to cross the finish. Every muscle protested with each step, but I crossed with all my energy reserve.
At the finish was my totally awesome husband waiting for me and all I could do was hug him and cry a bit. His arms have felt like a refuge many times over our married life, but at that moment I felt saved. I love you Josh!
So with this being a tribute to pretty much say "F-You Multiple Sclerosis", I would like to raise awareness and point you to a full description about MS, which can be found at this website.
However, please note that MS affects each person differently. Just because you knew someone with a horrible MS experience DOES NOT mean your experience (or mine) will be the same. So please, stop telling horror stories to people who are newly diagnosed.
Also, comparison, bitterness and fear are only a fast track to absolutely nowhere. Not everyone with MS can walk, but by no means does this mean you are doomed either.
What I am saying is more universal: that we must accept the ailment, so that we can move beyond it. Treat the disease with the options you have available and then live to the best of your current ability - which may vary over time. It's just like I mentioned above, "...I had to run my own race."
Do yourself and everyone around you a huge favor and refuse to live life based on the unpredictability of disease. I'm not saying that everything will be happy, I'm simply saying find ways to accommodate your needs and l-i-v-e.
It is what it is and you can always live your life to the best of your current ability. This ability is determined by your attitude.
I feel a burden to be constantly on the lookout for ways to accommodate my current abilities, so that I feel able-minded. Yes, be aware of MS (or whatever disease affects someone close to you), and be aware of the various states of the disease: extreme, abnormal, and mild forms.
Not only that, but become aware of what people are doing even though they have a disease. You may not be able to do exactly the same things as others, but you should be able to see that pretty much the only thing stopping you is yourself.
The National Ability Center is a prime example of what can be done, when you believe or have someone believe in you.
Friday, February 10, 2012
Doing Most Everything!
Question: What do you think of when you see the acronym DME?
The term seems relatively harmless. Individually the words are actually very strong, frequently used words. But for some reason when combined, Durable Medical Equipment tends to carry a hefty punch in the gut, especially when the term is used in relation your own personal abilities. I know because I've experienced it.
I've had home health nurses hook me up to IV's and I've walked with a cane out of need. I already know what the transition of able bodied to "needing assistance" feels like.
But it's the public stare you get with "disability" that can test your hope, motivation, and positive outlook; it can even alter your perception of self.
I have a dear friend, who is about my age, and she also has multiple sclerosis. She is absolutely beautiful, inside and out. She has a genuine sincerity and glow about her.
My friend used to be a dancer; however, her legs no longer perform like a dancer's. But my dear friend is still living life fully. She has kids, a husband, she's a normal mom.
She has things to do, activities with kids and family. She's also a patient advocate speaker. This last December we travelled back from our patient advocate conference together.
I was assisting her through the airport by pushing her two-wheeled walker and transporting her carry-on bag, while someone from airport security wheeled her to our gate in a wheelchair.
While walking through the airport she told me to look at people as we walk through the airport. She wanted me to notice how often people stared at me specifically while pushing her walker.
I pushed her walker as though I needed it to walk. It was simply easier to move it and her bag that way. In all reality, it appeared as though I was using the walker out of need.
Oh dear, people really do stare... sometimes people are so transparent that there's no guessing as to what they are thinking.
I got stares when I used a cane - but not like this. I now know the look and feel of pitiable concern - I do not like it at all. After a while I found that it had negatively affected my spirit.
I really wondered about my ability to cope with that situation, if my level of ability were to ever require "assistance".
I got stares when I used a cane - but not like this. I now know the look and feel of pitiable concern - I do not like it at all. After a while I found that it had negatively affected my spirit.
I really wondered about my ability to cope with that situation, if my level of ability were to ever require "assistance".
I have another friend that was in an accident in his early twenties and it left him a quadriplegic. I was talking with him not too long ago. He's been in a wheelchair now for more of his life than he's been without one.
He's now at the point where he doesn't personally view himself as "disabled". He's married, lives a very full life. Travels for work, for pleasure and yes there are always considerations that have to be made in order to do that, but it's second nature now for him - it's normal. He said he doesn't even notice all the stares very much anymore.
He's now at the point where he doesn't personally view himself as "disabled". He's married, lives a very full life. Travels for work, for pleasure and yes there are always considerations that have to be made in order to do that, but it's second nature now for him - it's normal. He said he doesn't even notice all the stares very much anymore.
It may be a hard pride hit to go from your own ability to using a DME (cane, walker, wheelchair), but recently I've really liked my new take home message of what a DME is.
To me they're not only canes, walkers, wheelchairs, catheters, and such. They are also shoes, railings, ramps, a steady hand, and trekking poles to name a few. Even more recently, they are running shoes, cooling vests, iPod, knee brace, ice and pillow.
All of these things are designed to get you from one location to another or to assist you achieve a desired action. To help you keep living life, in whatever capacity you can currently participate.
To me they're not only canes, walkers, wheelchairs, catheters, and such. They are also shoes, railings, ramps, a steady hand, and trekking poles to name a few. Even more recently, they are running shoes, cooling vests, iPod, knee brace, ice and pillow.
All of these things are designed to get you from one location to another or to assist you achieve a desired action. To help you keep living life, in whatever capacity you can currently participate.
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| My DME's (left to right): cane, running shoes, running water belt, trekking poles, sharps container, needles, porcupine massage ball, knee brace. |
After evaluating both of my friends and their circumstances as noted above, I have decided that because of my accumulated DME, I am and already have been, Doing Most Everything.
I know that when people had a fixed gaze on me while using my cane a few years ago, and while pushing my friend's walker through the airport, that judgments were being made.
But even if I weren't using those things, judgments were still being made. We can't escape that in life, so why let those judgments define our own beliefs and abilities?
This is where the Imaginary Villain (the ego) seeps into our life. It is also precisely when we must commit to live life without limits.
If my time comes to live life fully in a more modified fashion, I pray that you will help me remember that I am still Doing Most Everything, just in a different way. We all need this kind encouragement.
Sunday, July 31, 2011
Consider the Daisies
I absolutely love the card cover above. Some friends from work gave me this card on Administrative Professionals Day. I love the card for a few reasons:
- It's completely something that I would want to do; but would be too insecure to actually do.
- I admire the free-spiritedness of the act.
- It's a reminder that life is what we make of it. The events that occur are simply a jumping off point, it's how we respond to the situation that defines who we are.
Making the best of every situation is one of the biggest daily challenges that we face. Our attitude is everything.
Why default to a negative perspective? Why be sad about being alive? Why lament what you can't do when there are many things that you CAN do?
Why default to a negative perspective? Why be sad about being alive? Why lament what you can't do when there are many things that you CAN do?
I have a friend who is a quadriplegic and he's one of the friendliest, most thoughtful, kind and loving people I know. He's happily married, able to drive, works Monday through Friday, is currently working on his PhD, can transfer himself from vehicle to wheelchair and vice-versa, travels, has a very full life and is a happy man.
I've never seen him frown or be negative; why is that? I'm sure he has his moments, he's human, he has to - but I have never seen it. He is able to do so much and have a very fulfilling life.
I've never seen him frown or be negative; why is that? I'm sure he has his moments, he's human, he has to - but I have never seen it. He is able to do so much and have a very fulfilling life.
I was intending to go for a short run this morning, but that isn't going to work out today. I'm telling myself, "Gosh girl! That's okay. Last Monday you ran a 10k in an hour and three minutes. Hello! A ten-minute mile mile for over six miles!" A few years ago I couldn't even walk 0.4 miles without getting winded, losing control of my legs, and being down for the rest of the day.
So, I still have an elliptical. I'm stiff but I know that a few minutes on the elliptical will limber me up so I can try to stretch out the stiffness in my lower half.
There's nothing wrong with accommodation or a change of plans. I'm a little disappointed, but not enough to sit down and do nothing. I CAN, therefore I will do something.
So, I still have an elliptical. I'm stiff but I know that a few minutes on the elliptical will limber me up so I can try to stretch out the stiffness in my lower half.
There's nothing wrong with accommodation or a change of plans. I'm a little disappointed, but not enough to sit down and do nothing. I CAN, therefore I will do something.
Here I go...
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