Filed under: Ability, Adapting Equipment, Attitude, Behavior, Disability, Reality, User Friendly | Tags: control, dietary considerations, inexpensive solution, lifestyle, nutrition category, quadriplegia
Lose It is an app that is available free on iTunes and can be used with iPhone, iPod Touch or an iPad. It is located in the Health and Nutrition category and is designed to help people lose weight. While it is set up for the general population, it lends itself to easy adaptation for any individual with a disability. Prior to my accident I was 6’4″ tall and weighed 215 pounds. Now, 13 years later, even with major dietary adjustments, I weigh close to 260 pounds. Being a quadriplegic, weighing oneself is difficult, and using a scale designed to weigh individuals in a sling, can be costly. I have found an inexpensive solution to this problem. I use a Big Buck scale that can be purchased at Cabela’s for $45. It is intended for weighing deer but still is surprisingly accurate.
The following description of Lose It is taken from iTunes:
“Succeed at weight loss with Lose It! Set goals and establish a daily calorie budget that enables you to meet them. Stay on track each day by recording your food and exercise and staying within your budget. The average active Lose It user has lost more than 12 pounds and more than 85% of our active users have lost weight. Lose It is completely free — get started losing weight with Lose It today.”
Lose It is simple and easy to use. It has a large database of food and exercise which can be easily added to. After entering a food or exercise once, it becomes part of your personal database and can be selected the next time with a simple click. What lends itself so nicely to adaptation is the fact that you can add both foods and exercises to the program. In the exercise category I was able to add Hand cycling and several other modified activities with the amount of time I do them and the number of calories I burn. Existing categories within the exercise section can be manipulated to reflect your level of participation.
For those of us who have specialized dietary considerations in addition to keeping track of calories, Lose It can be set up to monitor Fat, Cholesterol, Sodium, Carbohydrates, Sugar, Fiber and Protein in our daily diets. It also has a bar code scanner for packaged products to make entering specific nutritional information easier. Lose It has an extensive menu of foods from both the supermarket and many well-known food chains. Simple, user-friendly, adaptable and free: what more could you ask for? Give it a try; you have nothing to lose but weight!!
Summer Before the Accident
Thirteen Years Later
Filed under: Ability, Adapting Equipment, Attitude, Disability, Education, Simple Solution | Tags: adapting, control, creative idea, life lesson, physically challenged, using your mind
As we all know a large number of products made for individuals with disabilities are greatly overpriced. Among the many unfortunate results of this is the fact that many people from the disabled community are prevented from returning to the activities that provide them with quality-of-life such as hunting, kayaking, and biking to mention just a few. This is one reason why Andy Dahmen and I designed what we call the Universal Chair Mount. Our idea was to place the prints on the Handihelp website where people could download them and then have a local craftsman make the mount, greatly reducing the cost. We drew up a rough set of blueprints and decided to have our mounts made locally. Mine was made in upstate New York, while Andy’s was made in Utah. Imagine our surprise when we exchanged photos of each other’s finished products.
When I stopped to think about this, I realized there is a good lesson here. As you can see from the pictures, we ended up with two very different looking chair mounts, and that’s the point. The plans, pictures and ideas shown on the pages of the Handihelp website should serve as a guide or starting point, rather than a blueprint which must be followed exactly. When you look at a “tool” or piece of equipment you should ask yourself, what do I want this to do for me? What parts are essential to its function? On the mount, for instance, there are 3 features that all chair mounts must have in common: a hole for the post to go into, a mechanism to lock the post in place, and a means to attach the mount to a wheelchair. How these necessities are produced is up to the builder. Look how different our two mounts are; yet, they both attain the desired outcome, a functional universal chair mount.
Handihelp provides possible solutions for accomplishing certain outcomes, but they should be looked at as starting points instead of “set-in-stone” solutions. What is offered here is the start of developing an attitude toward dealing with the challenges imposed upon us by our disabilities, as well as a source of solutions.
Filed under: Adapting Equipment, Attitude, Behavior, Disability, Education, Reality, Sensitivity | Tags: adapting, creative idea, life lesson, physically challenged, using your mind
D. H. Lawrence, the early 20th century English novelist, storywriter, critic, poet and painter wrote, “I have never seen a wild thing feel sorry for itself. A little bird will fall dead, frozen from a bough, without ever having felt sorry for itself.” How the hell did he know?
In December 2005, a 3 month old female dolphin was found wrapped in the rope line of a crab trap near Cape Canaveral Florida. She was taken to the Clearwater Marine Aquarium in Clearwater, which is a marine rescue center. The dolphin, named Winter, struggled to survive. The rope had cut off blood circulation to her tail which resulted in, not only the loss of her tail, but several spinal vertebrae too. Few experts believed the dolphin could survive major trauma like this. Winter not only survived, she developed a new method of propulsion. The new movement she used to move herself through the water while amazing, however, was detrimental to her spinal cord.
Winter
A well-known prosthetic specialist heard about Winter and offered his services. The challenges looked to be overwhelming: artificially reproduce one of the most powerful propulsion systems in the world, finding a way to attach it to a dolphin, and then train a wild animal to use it. Mike Walsh, Winter’s lead veterinarian, said:
“We put together a team who doesn’t know what ‘no’ means.
As long as you’re willing to try, you can make a big difference.”
After a lot of trial and error, a successful apparatus was finally developed. This story is responsible for the movie, “Dolphin’s Tale”, which is a touching movie for the entire family. In the movie, Winter plays herself. If you see it, be sure to watch after the end of the movie for some very special scenes.
There are lessons here for all of us in the disabled community, not only from the behavior of the humans but also in Winter’s behavior: their collective refusal to give up or accept failure as an answer, their ability to find alternative ways of attacking a challenge, their love and enjoyment of life itself, and Winter’ attitude of accepting what happened and to move on. The team’s persistence led not only to the dolphin’s prosthesis, but help for human amputees as well. Winter’s early rejection of the prosthesis was not due to the device itself, as originally thought, but rather to the material that was being used to attach it to her body. After realizing this, the team developed a new gel sleeve which adhered to her body with suction. This gel material is now being used with veterans returning from Iraq and Afghanistan. Additional new materials are also being developed to stand up better to salt water.
Once again, we see that positive attitude, thinking out of the box and relentless perseverance reap rewards and success.
Winter's Prosthesis and Gel Sleeve
Filed under: Ability, Disability, Education, Observation, Reality, Simple Solution | Tags: control, lifestyle, physically challenged, using your mind
The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog.
Here’s an excerpt:
A San Francisco cable car holds 60 people. This blog was viewed about 2,800 times in 2011. If it were a cable car, it would take about 47 trips to carry that many people.
Click here to see the complete report.
Filed under: Ability, Attitude, Behavior, Disability, Education, Reality | Tags: adapting, control, life lesson, quadriplegia, using your mind
I am always stressing about attitude in dealing with the challenges of having a disability. I have even gone so far as to say that attitude is more important in dealing with a disability than ability, and I really believe it is. But what happens when your attitude deteriorates? It doesn’t happen to me often, but it does happen and it most likely happens to you also! I like to compare my situation to that of a juggler who can keep just so many objects in the air at any one time. It doesn’t matter whether the objects are the same or different, just add one more and everything comes tumbling down.
Well, I have too many objects in the air right now, and as a result my attitude has crashed. The last week of November into early December I started getting severe headaches followed by mental confusion. Saturday and Sunday December 3rd and 4th I went to the local hospital but on Monday I was transported to Upstate University Medical Center in Syracuse, New York. I had suffered a “chronic” subdural hematoma (bleeding on the brain). I was scared, confused and very aware how helpless I was. I thought about all the limitations that my situation places on me. When I’m in this frame of mind, it’s hard to simply consider them as challenges. I begin to wonder if I really have quality-of-life, and when I’m like this seriously question if my life is worth it. I’m going to die someday anyway, so why postpone the inevitable. Giving up would be easy. It’s going on day after day that’s tough. If I stop and think about this for a while, I remember how hard I fought the first six months after my accident doing whatever I had to in order to survive; however, that was at age 55, and now I’m 68. When I get in this mindset it’s hard to put the limitations aside.
The last ten years of my teaching career was spent with a class of high school students who had emotional or behavioral problems. I often found my- self doing more counseling than teaching. Most of them thought life had given them a lousy deal, and they were right. At times, I feel the same way, so I remind myself of what I told them. The Gambler, sung by Kenny Rodgers was current at that time, so we would talk about its meaning; life deals you a hand of cards and you must play them. You can wish all you want but the cards aren’t going to change much. The gambler knows this so he advises:
“If you’re gonna play the game, boy, ya gotta learn to play it right.
You’ve got to know when to hold ‘em know when to fold ‘em,
Know when to walk away and know when to run….
Now, every gambler knows the secret to survivin’
is knowin’ what to throw away and knowing what to keep.”
So according to this old sage, it’s not the hand you’ve been dealt that’s important but rather how you play it that determines the outcome
“Cause every hand’s a winner and every hand’s a loser,
and the best you can hope for is to die in your sleep.”
What is the gambler trying to tell the listener? I believe it’s that life is like playing a card game and how we handle life is all up to us. Our success is more influenced by our attitude then the cards we’ve been dealt.
“Happy” New Year? The choice is ours!
Filed under: Adapting Equipment, Disability, Education, Simple Solution, User Friendly | Tags: control, hunting, using your mind
A major disability takes so much away from the individual. I’ve lost not only the things people normally associate with quadriplegia, but so much more; such as control of body temperature, intimacy, ability to act spontaneously to mention just a few. Why should we be deprived of any more of the other things we love to do? I often reflect on the words of Christopher Reeve:
“I refuse to allow a disability to determine how I will live my life. I don’t mean to be reckless, but setting a goal that seems a bit daunting actually is very helpful toward recovery.”
With these words in my mind, I faced my new life with quadriplegia. That was over 12 years ago, and a lot of things have changed since then. After my injury, I was shocked and outraged at the exorbitant pricing of articles sold specifically for individuals with disabilities. What really upset and perplexed me is that many of the online “stores”, promoting these products, were run by people with disabilities. Many individuals, especially those newly disabled, are often prevented from participating in activities because of this overpricing. My early “tool” development was an outgrowth of efforts not to let my situation prevent me from partaking in things I used to enjoy and not to pay the ridiculous prices. I created Handihelp.net with the idea of providing simple alternatives that are either inexpensive or costs little to be made.
Much of the interest on Handihelp centers on continuing activities that individuals enjoyed prior to their disability and principle among those activities is hunting. Many of the e-mails I get are similar to the following letter from Dan:
“I am a C-5 6 quadriplegic complete… . I broke my neck over 40 years ago, and have been trying to find a good wheelchair mounted gun holder and trigger mechanism. Before I got injured I was an avid hunter, fisherman, and son of a farmer. I have tried different mounts but they tend to get very pricey. I would love to be able to hunt Whitetail deer with my brothers and one great friend who has been through this with me from the beginning. I’m not well-off but I’m very happy. I have a Ruger .223 semi-automatic rifle that I would love to use as a groundhog gun. I have a bold action 30-06 that I bought the year before I got hurt never getting to use it. I don’t think I can use the bold action, so I would use it one shot at a time. I truly appreciate any help and guidance you can give me in obtaining this dream. This has been a dream of mine for the last 40 years. To be able to use my rifle and shotgun would be the coolest.”
Over the years my own efforts to “create” additional equipment became more ambitious. Letters like Dan’s helped me decide to try and find some relatively inexpensive equipment which could be easily modified for use by a person in a wheelchair. This, by far, would be my most challenging effort to date. My research led to Bog Gear in Fredricksburg Texas, who after hearing my story, donated several pieces of equipment for me to experiment with. After some minor modifications it became the Inexpensive Gun Mount (IGM) which cost about a $110 and can be purchased from Cabela’s.
I developed my Poor Man’s Trigger Adapter (PMTA) for my personal use and later I put it on my website. It can be made and placed on a weapon for less than $2. The final piece of apparatus was a chair mount to attach the gun mount to a wheelchair. With input from Andy Dahmen, a fellow quadriplegic hunter, Doug, of Colonial Welding and Don from Don’s Pro Shop we came up with a device we believe will be relatively inexpensive to make and can be placed on almost any wheelchair. Plans for the Universal Chair Mount (UCM) can now be downloaded from Handihelp and constructed by a craftsman in your area hopefully, further reducing the cost. You should be able to get the mount made for around $80. All of the equipment necessary to hunt should cost around $200.
The (UCM) is not to be limited to just gun use, any piece of equipment such as a camera, table, binoculars, fishing pole adapter, telescope etc. which is supported by a 5/8” post can be held by the UCM. Handihelp plans to work on additional pieces of equipment to be used with the UCM. As projects are created information will be placed on the website.
The fulfillment of this project far exceeds any ideas I had when I first started the website in January 2008. To help other quadriplegics, like Dan, return to the activities they love and to demonstrate to others what is possible when you free yourself of perceived limitations is very satisfying.
Universal Chair Mount
All these plans can be found on my website.
Filed under: Attitude, Behavior, Disability, Education, Love, Observation | Tags: adapting, control, life lesson, quadriplegia, using your mind
The CD player clicked off, and my struggle began. For months went from mild anxiety to full blown night terrors. I would thrash back and forth in the bed, shaking, crying uncontrollably and paranoid. They started bringing me out to the nurses’ station every night. The rehabilitation hospital even brought in a psychiatrist from outside hospital staff to evaluate me. As things got worse they had an attendant stay with me through the night. Nothing worked. I was so scared I would do anything, use anybody in my effort not to be alone. The silence scared me, the dark scared me and being alone was more than I could handle. When the psychologist asked me how I could combat this, I said to use meditation and imaging. I had used both very successfully in my life prior to the accident, so I believed these strategies would work. I was ready. Then the CD player ran out of music, clicked off, and I went berserk again. It not only continued when I got home, it got worse. I threw myself violently back and forth in the bed screaming, crying and threatening to throw myself out of the bed. My wife was not a rehabilitation specialist; she was a fifth grade teacher. She had no support group to fall back on, just her and her out of control husband. Night after sleepless night this went on and on. We entered into a frightening nether-land, both of us close to exhaustion from the crazed, sleepless encounters. Eventually I ended up at the local hospital for a mental evaluation. I began seeing a psychiatrist for chemical intervention. It did little good. Finally, to his credit, he admitted to us he’d run out of drugs and could do little more. He recommended a Sleep Study be done in the local hospital. After my night in the hospital, they immediately put me on a Continuous Positive Air Pressure (CPAP) machine and everything instantly changed the first night.
Recovering from a major disabling experience is a process, and it is critical for people to understand that. One of the doctors at Craig Hospital explained to my wife, that at first you will have more bad days than good. Then after a while the good days and the bad days will be about even. Finally, after another period of time you will realize you’re having more good days then bad, and this trend will continue as time goes on. After more than twelve years I can attest to the truth of this concept. I think it is hard for people in the early phase of recovery to believe that things will ever change, but they will. The other night I woke up at 3:30 am and could not go back to sleep. I sat up in bed, took off my CPAP mask and grabbed my iPad. I put on my headphones, hit the Favorites playlist and began playing solitaire. After several hours I started to get tired and, leaving my headphones on, laid back down and closed the iPad returning to the darkness. I was unable to sleep so I lay in the dark and was taken to a place of peace and tranquility by Whitney Houston, Celine Dion, Lionel Richie and others. It was hard to believe I was ever so terrorized by the nighttime.
Filed under: Ability, Attitude, Behavior, Disability, Education, Reality, Sensitivity | Tags: control, life lesson, using your mind
Monday night is “fight night” in our house. I want to watch Monday Night Football and my wife wants to watch Dancing with the Stars. I sometimes end up giving in, even on nights when the Giants are playing. Last Monday night October 3, I was deeply touched by several of the dancers but no more so than JR Martinez. If you watch the show you know that the contestants are selected to gain the interest of many different segments of our population. Week three’s theme was to illustrate “The Most Memorable Year of My Life,” with each couple performing a dance to their song of choice. Most of the dances were well performed and highlighted a high point or low point in the participant’s life. But nothing, in my opinion, came close to the performance of JR Martinez.
Karina Smirnoff & J.R. Martinez photo by Adam Taylo ABC News
JR is not the first person from the disabled community to compete on Dancing with the Stars. In 2008 Marlee Maitland, actress and activist, appeared and danced for three weeks until she was voted off. Ms. Maitland has been deaf since the age of 18 months. Imagine getting out on the dance floor and trying to perform in front of a large audience when you are unable to hear the music. In 2007 Heather Mills appeared even though her left leg below her knee had been amputated in 1993 as a result of a motorcycle accident. She danced with a prosthesis and did quite well. There may have been others but these are the only ones I recall. Perhaps I was watching football. I was amazed and dumbfounded by these contestants on a variety of levels.
For some reason JR Martinez’s performance seems to stand above the others. Disabilities present themselves in thousands of different ways. In a society that worships physical appearance, women, men, and even children are in increasing numbers going to plastic surgeons for operations to improve their physical appearance Mr. Martinez should be an inspiration to all of us. His acceptance of his situation is a lesson we all can learn. His resilience, fortitude and perseverance have enabled him to rise above a situation which could just as easily lead to despair and hopelessness. Those of us in the disabled community would do well to emulate these characteristics. After all there aren’t any attributes in JR Martinez that aren’t in all of us. JR Martinez’s performance made me proud to be a member of the disabled community and I never thought I’d ever say that. So, my friend, if you feel like you need some inspiration look to those members of the disabled community who, like Christopher Reeve, are refusing to allow a disability to determine how they will led their lives.
Filed under: Ability, Attitude, Behavior, Disability, Education, Independent Living | Tags: adapting, control, quadriplegia, using your mind
The hospital table was tilted on a severe angle. Obviously, it was broken. My nurse took it apart and found the base had broken. Off it went to a local welder who was more than willing to fix it. The focus on my table stirred up some less than happy memories. Early on with quadriplegia, you seem to be at the mercy of everything and everyone. Little or nothing seems within your control. It became vital for me to regain control of some things regardless of the price that had to be paid. Most of my issues and frustrations still involve the same factor and that is control. When I feel as though I have control in a situation I feel comfortable regardless. When I don’t have control the exact opposite is true; I get nervous, frustrated and angry at the lack of ability that I have. When I first came home from the rehabilitation center, I had absolutely no control of anything. As my physical health improved I became desperate to regain some control over my life. In addition to the physical results of my accident, I was dealing with tremendous mental anxiety which left me frightened to be alone, afraid of the dark, fearful of the unknown and scared to be in certain places or positions. I had started having night terrors and was getting very anxious over my inability to exercise any control over my environment. The demons were worst at night, so that’s where I began. After a while I realized that it was possible to begin to exert control over basic issues that were bothering me.
I already had the hospital table and I knew that I had to place things on the table that would give me control of the environment, at least in my immediate area. I can’t remember exactly the way things transpired, but today on my hospital table I have several items that give me control. The most important items is a remote switching device which allows me to turn the lights on and off, not only in the bedroom, but in other areas of my home. It also allows me to use my CPAP machine. I have a large remote for the television which has a strap handle that I can grab and easily manipulate it when needed. I also have a pill container which has the two pills that I need from time to time, one for pain and the other for anxiety. I can reach them and take them any time of the day or night. There is also a small drink coozie that contains mints. Often when I wake up at night my mouth is extremely dry and having a mint relieves some of the foul taste. There is a water bottle on which I have placed handles so that I can grab and easily grip it if I need it. My LifeNet is attached to a hook on the leg of my hospital table at night, unless my wife is gone and I’m home alone. In that event, I wear the LifeNet in bed. If Marge is not at home, I also add a portable telephone to the table that is quite easy for me to use. In addition, my iPad also sits on the hospital table along with a set of headphones. If I wake up and my wife is asleep, and I want to listen to music or watch a movie, all I have to do is plug the headphones into the iPad and I’m in business. At times in the dark it’s difficult for me to find the port for the headset, so I put a small piece of grip tape along the edge of the iPad leading to the port for the headphone. I can feel its rough surface and follow it to the port. We have also strategically placed some Velcro on the hospital table; one piece is to secure the remote switching control, and the other is used to attach the mask that I wear for my CPAP machine. I use these when my wife is away or I want to stay up longer than she does. I can just grab the mask and put it on. A bed control clipped on my shirt which allows me to raise myself in bed was another addition. With the help of the CPAP mask I began to sleep comfortably through the night, only rarely experiencing my past fears and anxieties. Furthermore, as I was able to regain my control in a few areas, I began to realize I could do it in other situations as well.
Right to left: Switch Remote, Coozie, Water Bottle, Pill Container,TV Remote, CPAP Mask, iPad and Headphones,LifeNet Hanging on Leg
Filed under: Ability, Attitude, Behavior, Disability, Education, Observation, Reality, Sensitivity | Tags: adapting, life lesson, physically challenged, quadriplegia, using your mind
How does one begin to deal with the devastating changes in lifestyle brought on by a catastrophic event? One of the techniques which can help is to look back over your life and find skills you already have that can be helpful. This is why, I believe, adapting is so very difficult for young people who have fewer life experiences to draw from. At 68 years old my life certainly seems to have gone quickly. I wonder how much longer I’ll live. Not only have I looked forward, but lately I’ve spent more time looking back. The pivotal point looking back was my accident in 1999 which left me a quadriplegic at the age of 55. In the past 12 and half years I have forgotten what it was like to walk, run, and bike or make love. Hard for me to believe, but true. What I do see when looking back are experiences which at the time seemed isolated and unrelated but today look like part of a much larger plan that was preparing me to deal with my quadriplegia and its impact on my life.
I grew up in a family where hard work and inner strength were admirable qualities. Before my accident, I believe the major influence on my life was my marriage to my wife Marge. Up until that point, my life lacked stability and purpose. As a teenager I was unruly, probably drank too much and had little or no sense of direction in my life. My love for my wife and growing family gave me a sense of pride and was the cornerstone of my new life. After a college basketball injury I had become sedentary, and with the addition of my wife’s good cooking and baking, I became overweight in a few short years. As a result of a scolding from my family doctor, I began working out again. By the mid-70’s I was running up to 30 miles a week, and shortly before my 40th birthday I ran a marathon. In addition to jogging I also, kayaked, biked, skied, camped and mountain climbed. As a result I became quite disciplined and health conscious.
During this same period I was teaching Social Studies and Health in a high school in central New York. I became interested in the teachings of Buddha and especially the Four Noble Truths. Basically Buddhism taught me you can live a much happier life by being satisfied with what you have, and that being materialistic can easily lead to much unhappiness. Also a friend’s wife, who happened to be an instructor in Transcendental Meditation, taught me how to meditate. It has been a tool which I have used ever since to help me deal with stress and anxiety.
A Project Adventure group challenge
teamwork. Participants are given the time necessary to collectively figure out a solution to a particularly challenging obstacle. PA taught me that failure should not be looked at as an end in itself but rather as an experience to be learned from and to grow. Also it made me aware that there are many different ways to solve a particular problem and it’s almost always possible to come up with solution if you are willing to commit time, energy and persistence.
2nd from the left
For ten years I worked on the summer staff of a local college teaching outdoor skills and then taking small groups of students on six day wilderness trips. One year one of the members of my trip group was a young coed who was legally blind. It was a wonderful and unique experience and gave me insight into a wealth of information which has proved very useful in my own situation.
As I look back over these life experiences from the vantage point of today, it is difficult for me not to believe that these happenings were part of a process that was helping prepare me for the new life I have experienced since my accident. It took me a while to put the lessons learned prior to my accident into my “toolbox”, but once I did, they became useful skills that have made dealing with the challenges presented by my quadriplegia a lot easier. So what life skills are hiding in your background that may be helpful for you to use in dealing with your own adversities?
