Healthy Living

It seems, almost everyday we hear about new health benefit from routine exercise for the general public, but what does this mean for the disabled community? The opportunities for exercise are often overlooked by therapists in discharge planning, by doctors that are overwhelmed with the other medical issues, and from insurance companies that do not view exercise as a medical necessity for people in wheelchairs. The truth is, the general health of the disabled is significantly poorer than the able body population. The disabled have slightly higher rates of smoking and alcohol consumption but the main reason for poor health is because of metabolic syndrome.

Cardiovascular exercise and a good diet will help reduce obesity and health problems for people with disabilities.

Metabolic syndrome is a multitude of medical problems such as high blood pressure, dyslipidemia, coronary heart disease, stroke, type two diabetes, early onset damansia, gallbladder disease, some cancers (endometrial, breast, colon), and sleep apnea. This disease can have a genetic predisposition but is often resulting from obesity. The prevalence of metabolic syndrome is significantly higher in the disabled population because some neurological deficits result in muscle cell loss and fat cells replacement. But the greatest contributing factor is the lack of opportunities for good cardio vascular exercise. Also, many people with disabilities are not identified for this risk, because they look to be thin but are actually, what is termed, normal weight obese. Also, some people that have had a spinal cord injury, especially people with triplegia, often look thin except for extensive belly fat. This is concerning, because of the added risk of pressure sores, from the force on the pelvic, but also from recent studies indicating that an increase in visceral (belly fat) can lead to an increase in death by heart disease. It was found that men that have a waist size over 40″ and women over 35″ have double the risk from premature death due to heart disease and diabetes. But, a recent study indicates that people that are technically obese, such as ex-football players, are healthier, than their size would indicate. The players had less prevalence of diabetes and other metabolic problems, if they stayed fit, than men the same age and size from the general population. Another problem resulting from the vascular risk factors from obesity is early onset of Alzheimer’s disease and dementia. The good news is studies also indicate that the best prevention is a good diet and regular exercise.

Obesity is becoming a large health care problem for the general population, but it has graver implications for the disabled, especially as this population ages. For example; a sixty year old, C6, SCI male that developed metabolic syndrome- what are the implications for pressure sores, if he has diabetes? How will his care be affected if he develops dementia? Or will dementia not be a problem, because heart disease will shorten his life before the onset? What impact will these problems have on his family/caregivers?

Cardio vascular exercise and good diet are the most proven ways to combat obesity and the affects of metabolic syndrome. If someone uses a manual wheelchair many people think that they are getting plenty of exercise pushing, but the reality is, they do not get nearly as much cardio vascular exercise and calorie consumption as an able body person walking. We need to encourage, educate and motivate wheelchair users to take control of their life and exercise. Many gyms now have accessible equipment and many rehab centers have exercise programs tailored for people with disabilities, but few insurance programs help with the expenses, so very few wheelchair users utilize these programs. Also, rehabilitation equipment companies have developed more advanced exercise devices for the disabled to preserve range of motion, strengthen bones and muscles, and to provide good cardio vascular workouts. But again there are limited funding resources to pay for the exercise equipment. We still have a medical model that primarily pays for the treatment of the symptom but does not pay for the prevention of disease. This may have to change as the disabled (as well as the general public) age and the cost to treat all the problems associated with metabolic syndrome increase. This problem can be over come by motivated people, with access to good cardio vascular exercise, facilitated by insightful funding providers.

Are you a wheelchair user who does or does not exercise? How has it affected your health? What is your experience with convincing your insurance company to purchase exercise equipment to prevent the health problems now, rather then treat the problem later?

PDF List of References

Here’s a story about Myron Wright, a former high school athlete who was injured in a 2002 football game when an opposing player slammed him from behind. He vowed to someday walk again. For the past 8 months, he went through SCI therapy at the Project Walk spinal cord rehabilitation program in California.

Before attending Project walk, he had limited range of motion and his doctors told him that the shape of his body was resembling a wheelchair. At first he was hesitant to try many of the machines at Project Walk, including the standing frame. Myron has made a lot of progress, and now stands in his EasyStand at home. His family hopes to raise some money so he can return to Project Walk to continue his therapy.

Read the full article “Paralyzed Thibodaux man one step closer to walking”, published by the Thibodaux Daily Comet.

Ryan has Cerebral Palsy and uses a power wheelchair for mobility, but doesn’t let his disability slow him down. He does fun therapy in his standing frame, walker, and bike to keep his muscles strong for other activities. He goes horseback riding, skis, swims, and does many other things that able-bodied kids do. His mom, Luann, shares how Ryan stays healthy and active through daily standing therapy and a variety of other great activities.

When you see Ryan, you see a glowing kid, full of potential. Ryan started standing in an EasyStand Magician-ei when he was only three years old; he worked his way up to an EasyStand Magician Comfy and is a third grader already! We had the pleasure of meeting Ryan at his home during a photo shoot with the new EasyStand Bantam. In this video, you see Ryan standing in the Magician-ei, Magician Comfy, and Bantam.

What do you think of Ryan’s story? What activities do you do for fun?

Matt building strength in the EasyStand Evolv Glider at Project Walk, in Carlsbad, CA.

It’s not everyday that you meet a person like Matt Courson. Matt is a 23 year old college student from Arkansas, who is a T7 Incomplete paraplegic. He is determined, hard-working, and the type of guy that you just sense the great attitude oozing out of him. I say this without meeting him face-to-face, but feel like I have after seeing him on youtube, Mattcourson.org, Facebook, and even the Washington Post.

Through his rehab programs at Kennedy Krieger Institute in Baltimore, Maryland, & Project Walk in Carlsbad, California, and hours of rehab at home, Matt is working towards becoming the 1%. To understand what it means to be the 1%, know that his doctors told him that there was a 99% chance that he would never walk again.

Earlier this year, the Washington Post wrote an article about Kennedy Krieger Institute and activity-based restorative therapy. It includes interviews with Pat Rummerfield, who after 17 years of therapy has regained his ability to walk, and Matt Courson who seems to be following in his footsteps with his hard work, faith and determination.

Matt Courson uses the EasyStand Glider stander, combined with electrical stimulation, to gain strength, build muscle mass, and ultimately achieve his goal of walking on his own again one day.

Watch the Washington Post Video “Possibilities for the Impossible”

What do you think of the Washington Post’s article and video, Medical Marvel- Possibilities for the Impossible?

I’ve had my standing frame for over a decade. I think I received it in 1994, but it’s been so long now I can barely remember. The exact date I got my standing frame is besides the point though. The worthwhile thing to blog about? The fact that my standing frame, an EasyStand 2400, still works as good as the day I got it. Now that’s something to write home about.

It can be a chore (at least for me) to work standing into my everyday, stressful schedule. As a freelance writer, a C6 quad, and someone who depends on PCA’s everyday (and does her own staffing to boot) my life is chock full of things that need to be taken care of. Taking a break from everything and putting things on hold as I stand for a 1/2 hour can feel counterproductive.

But at the heart of things I know it isn’t. In fact, after I stand I feel happier and ready to take on the day. Knowing my body is still able to stand is a huge ego-boost. Sounds silly, I know, but it’s the truth. So over the years I’ve learned how to multitask while standing. Just look at this pic taken this morning of me working on my laptop and drinking my morning coffee, all while I stand:

Here I am, drinking coffee and working on my laptop while standing in my EasyStand.

So in conclusion, it’s just a matter of life organization, in re: to working your stander into your life. It may feel like your dragging your sorry butt to the gym on a day you’d rather be in bed sleeping, but take it from me, it’ll still feel worth it when you’re done; and you’ll be very glad you did it. It’s a more-than-beneficial work-out.

I’m very lucky to have my standing frame, even if it’s over 10 years old. A standing frame may cost x number of dollars, but being able to stand? Priceless.

Playing while standing stimulates interaction, development, and fun.

Often we talk about what standing does for the body, but what is commonly overlooked, is what standing does for the mind. Standing is especially important for the mental development of the children with disabilities. When I talk to pediatric therapists, they appreciate and understand first-hand how standing can help with range of motion, spasticity, bowel/bladder function and the many of the other physical benefits of standing. But what I hear about most is how standing helps with perceptual development, cognitive awareness and very importantly, how standing can stimulate play. More and more research is finding that play deprivation for able-bodied children can lead to self-esteem, social interaction, and intellectual problems. The value of play for the child with a disability is often overlooked but is necessary for mental development and upper extremity muscle function and coordination. When a child is sitting for long periods of time, head and trunk control often fatigue and awareness diminishes. When a child stands with head control facilitated, play activities can be more stimulating and more interactive with peers, and the child can use their arms and hands more effectively.

As we understand that play is a necessary part of human development, it is obvious that play is also a great joy in life. As adults we should do our best to facilitate and provide play to all children. Here are some ideas of activities that a child can do while standing. What have you experienced regarding kids and play while standing?

Whenever my wife, Desiree, and I go on trips, my stander is among one of the top things that I can’t wait to get home to.

I have had T-5 paraplegia since July 7, 2003. Among the medical equipment that makes my life easier is the Evolv Mobile stander. I originally had the EasyStand 5000 and upgraded to the EasyStand Evolv about 6 months ago. The Evolv Mobile standing frame improves my overall quality of life! It is so nice to have things that make my life ‘normal.’

I experience endless benefits from standing including (but not limited to) decreased spasticity, increased circulation, temporary relief from my nerve pain, and most importantly my independence! I love that I do not always have to rely on other people to get me things. With my old standing frame I was just stuck in one place while I stood, because it did not have the mobility option.

I am a religious stander! Sometimes I stand for hours at a time. With my EasyStand Mobile standing frame I am able to wheel myself around anywhere I want to go. I like to wheel outside on the driveway to enjoy the weather.

Another thing I can do much easier is prepare meals for myself in the kitchen. I can move about the kitchen to the cupboards, refrigerator, and stove. I am able to stand right above the stove as opposed to having the flame on the stove right near my face. I also play games, read, eat and relax in my standing frame. Without it I would be hurting. Whenever my wife and I go on trips, my stander is among one of the top things that I can’t wait to get home to. I am thankful to have this helpful equipment!

My EasyStand Customer Story- PDF
YouTube Video of Me Using the EasyStand

My life changed completely in November 1994 when I became a T8-9 paraplegic as a result of a car accident. I was 3 weeks shy of my 17th birthday. I wouldn’t say the accident was a change for-the-worse, just a change; a re-conceptualization of who I was and who I was to become, living a life from a wheelchair. I have to say that I did everything I could to not let it hold me back. With support from my wonderful family and friends, I continued on with my life. But… in all of these years that have passed (it has been almost 14 years now), I have never stopped thinking, dreaming about the day when a cure for spinal cord injuries would emerge. I want to walk, I want to feel the sand and surf on my feet, I want to be able to play sports again, I want to be able to go to the bathroom normally, I want back everything I lost at the moment of the car accident.

So what have I been doing all of these years to stay positive and prepare myself for the day that a cure may come, you may wonder? Staying active has been the key. Right after my accident I purchased a Power Trainer, which I used in spurts over the years I’ve had it. But I really didn’t seriously start focusing on my health and physical activity until about 4 years ago. I started going to the gym and working with a personal trainer one to two times per week. I started handcycling during the spring, summer, and fall months. And, I was fortunate to find Altimate Medical and their EasyStand 6000 Glider (now the EasyStand Evolv Glider) at the NY Metro Abilities Expo. They allowed me to try it out right there and I was sold!

I received my EasyStand Glider in 2005. One of the biggest changes that I saw from standing, and it was almost immediate, was that the chronic swelling that I had in my ankles went away. I could actually see my ankle bones again! I would stand for about 30 minutes to an hour per time, and I would do this a few times per week. I would love to say that I stand every day, and I wish that I did, but I live a very active lifestyle, work full-time, etc. So when I can stand, I do. I know that it will only help me maintain my range of motion, provide weight bearing through my bones to maintain bone density, and improve my circulation to my legs. And it has proven to eliminate the swelling from my ankles! I feel that standing is one of the best things that I can possibly do to prepare myself for the day a cure may come along!

I have been lucky to keep up on all of this talk about the cure through an organization with which I actively volunteer. I am a member of the Philadelphia Chapter of the Buoniconti Fund. For those of you who are not familiar with the Buoniconti Fund to Cure Paralysis, it is the fund raising arm of the Miami Project to Cure Paralysis and there are local chapters across the US. I learned of my local chapter three years ago (it is now in its 5th year of existence), and knew that I had to get involved so that I was helping raise money to find the cure.

I just recently returned home from an amazing trip to the Miami Project in Florida where I attended The Buoniconti Fund To Cure Paralysis 2008 Chapters Summit. I was able to tour their state-of-the-art research facility, hear research updates from their renowned physicians and scientists, and finally meet Marc Buoniconti, President of the Buoniconti Fund. It was an extremely enlightening experience, and I have more certainty than ever that I, and everyone else affected by Spinal Cord Injuries, will be walking in the near future. The scientists attested that they are closer than ever to finding ways to improve, and possibly even cure, both acute and chronic spinal cord injuries. The possibility of starting human clinical trials is in sight. What a refreshing, uplifting feeling this was for me! So my drive to stay active, to stand more, and to fundraise even harder has been reinforced, and I am not going to give up on these things until the day when the cure becomes a reality!

The Philadelphia Chapter will be hosting it’s Fifth Annual Raise A Glass For A Cure fundraising event on Thursday, Novermber 20, 2008 at the Diamond Club at Citizen’s Bank Park. For information on attending the event or becoming involved with the Philadelphia Chapter, or to learn about sponsorship opportunities or making donations towards our event, please contact Sally Woolf, Volunteer Regional Director of the Philadelphia Chapter, at (610) 356-3252.

One of the things that I enjoy most about my job at Altimate Medical is hearing the success stories of our customers and helping them share those stories with others. Each story is so unique and will inspire others in a different way.

Cesca’s story is one of the two customer stories on our website about living with Multiple Sclerosis (MS), the other is Barbara Pressley. Cesca began having symptoms in her twenties but it took three years of hospital visits and tests before she was diagnosed. According to the National MS Society, in the US today, there are approximately 400,000 people with Multiple Sclerosis, and 200 more people are diagnosed every week. Worldwide, MS is thought to affect more than 2.5 million people.

Cesca’s MS changeder life hvery quickly. In her story she talks about her experience, “My MS progressed to the point where I was either in a wheelchair or a bed 24/7. Now having that third option of standing, even on days when I don¹t feel well, truly makes a world of difference!” Cesca is very positive and does not let MS limit how she lives her life. Instead she does all that she can to enhance it, like standing in the EasyStand StrapStand. Read Cesca’s story to find out more about the life of this upbeat lady!

You can also download Standing Makes a World of Difference-Francesca Carollo’s Story as a PDF.

Do you have a story or comments to share? Let us know how disability or standing has changed your life.