When Your Bed Is your desk

On July 2, 2019 as I sat on the side of my hospital bed, my doctor delivered my diagnosis of Transverse Myelitis. It’s a rare disease. Most people have never heard of it. I was clueless. 

It’s an inflammation of the myelin sheath surrounding the spine. It totally screws up the communications among your brain, your nerves and your lower muscles. Practically overnight I became numb from the waist down, outside and inside. I couldn’t walk and I was completely incontinent.

When I left the hospital a month later, I used a walker when outside and a cane around the house. Unfortunately, my weakness got worse. By late September I could barely manage a walker. My Outpatient Physical Therapist finally convinced me that my mobility was more important than my ego . . . it was time for my first wheelchair. However, no one handed me a booklet on how to go about this task. Yep, I made a couple of mistakes.

1. Assuming all manual wheelchairs are basically the same:

Two wheels attached to a chair, basically, right? You get around by powering the wheels forward with your two hands. Pretty simple, and it really is, until other considerations come into play. For example, how much do you weigh? What kind of ground will you be going over much of the time?  Carpet? Tile? Gravel? Cement? Will you need to put your wheelchair in and out of a vehicle? Who’s going to do that for you? In my case, my only real initial focus was my mobility, and how it could be improved over my walker . . . I was quickly becoming incapable of moving beyond 30 steps before resting.

2. Deciding what to pay for it:

I had no clue how much to pay. I also was hanging on to the idea that I would be walking again, potentially soon, or so I thought, so I did not want to invest that much. What did I do? I went to Amazon and looked at offerings. They ranged from about $125 to $650. So, simple division gave an answer . . . I would pay around $350 to $400. That wasn’t really a bad decision, it just didn’t address my needs for very long. The lightweight and fold-able chair I bought began breaking down within three months – the wheels were the first to go.

3. Waiting too long to buy it:

When my Transverse Myelitis first started, I was able to use a walker, but the weakness in my legs kept growing. I also was told that a 1/3rd of us would likely walk again, a 1/3rd would get around with a walker, and a 1/3rd would likely stay tied to a wheelchair. To me, it seemed that buying a wheelchair would be an act of “surrender.” Lack of knowledge and my ego held me back. It was my Physical Therapist, Kelly Snow, bless her heart, that convinced me that mobility was far more important to my lifestyle than struggling with a walker or holding too long to a potential for walking again, especially since no one could tell me how long it would take to get there. There was no clear-cut recipe.

4. Not researching cushions:

I never gave any consideration to cushions. Oh, I did ask a few people and the general answer was to get a Roho or roho-styled air cushion. What I saw was the price kept going up and up. Here’s the thing, no one mentioned anything – or I didn’t hear them if they did mention it – about pressure ulcers that wheelchair users can develop from sitting too much and inhibiting good blood circulation. Let me tell you . . . this is an incredibility important issue to consider. I have been battling now for 6 months with a pressure ulcer on my left buttocks. It’s truly a pain in the ass. It turns out that Roho cushions are the standard in the battle against pressure ulcers.

5. Completely forgetting the issue of transfers:

Wheelchairs lead to all types of transfers . . . from wheelchair to car seat, from wheelchair to bed then back again, from wheelchair to toilet seat. Sometimes the transfer takes you higher up than the height of your wheelchair seat – these are tougher than transferring to a lower position. This comes up all the time with getting in and out of cars. So, here’s the problem, if your wheelchair has fixed arms rather than retractable ones, you’re in for a lot of bruising. Fixed position arms are almost always in the way of easy transfers. Retractable arms pretty much eliminate this challenge.

6. Not considering the unintended consequences of a lightweight chair:

One consideration I did have when buying my 1st wheelchair was the weight factor. I wanted something lightweight for car travel. Once I transferred into the car, whoever I was traveling with would have to fold up the wheelchair and put it in the back of my Honda CRV. To my knowledge, lightweight is achieved in one of two ways – using an aluminum or a titanium frame. The later is far more expensive, and I made the obvious mistake of going with the aluminum. The problem is that aluminum does not hold up like titanium. From example, I have had to replace my tires twice in less than two years. Then there was the taxi driver that tried to jam my wheelchair into his truck for my ride to the airport . . . that snapped one of the hinges holding the back rest upright.

Conclusion:

So, what advice do I have to offer? Please take into consideration the fact that I’m still a novice in all of this process, but consider the following:

· While you may walk again, don’t suffer between now and then, and a cheap wheelchair to supposedly carry you through is a likely recipe for suffering.

· Ask advice of other users. There are lots of great health-oriented Facebook groups that include wheelchair users who welcome the opportunity to be of service to others . . . just remember that everyone’s experience is largely unique to them.

· Most healthcare plans – including Medicare – will pay for a custom chair for you. However, always remember that even the best wheelchair sales person or specialist will have biases that can impact you, particularly those that do not or have not lived life in a wheelchair. 

· There are lots of resources on the internet that can help you in your decision-making. Check out http://dmelibrary.com/?s=buying+a+wheelchair . 

· Finally, take more time than you think you need to make your decision, and spend a bit more to get what works the best for you. 

And, if you make your own mistakes that differ from mine . . . please pass them along to the rest of us.

By: Dr. Joan Vernikos (Former director of NASA’s Life Sciences Division)

Sitting is an independent risk factor to health¹. As the dangerous consequences of too much sitting have been recognized numerous studies in the last seven or eight years have produced the evidence that many of today’s poor health conditions, from diabetes, obesity cardiovascular disease, all forms of cancer, osteoporosis, muscle weakness, poor balance and coordination problems as well as cognitive consequences are directly linked to too much sitting². 

What’s more, exercise once a day does not counteract the damage from sitting whereas frequent low intensity movement such as standing-up – changing posture – throughout the day with or without walking are most effective. Even as little as 30 minutes of sitting increases the blood level of triglycerides, an early indicator of a pre-diabetic state³.

It is clear that it is not so much a matter of how many hours you sit that is so bad for you, but how many times and how often you interrupt your sitting that is good for you. 

It is now recognized that the workplace is changing to accommodate stand-up desks that allow alternating standing and sitting in the office. In the pursuit of better health, the office of tomorrow will probably discourage sitting in cubicles all day altogether.

What about people who cannot stand-up? In addition to losing their independence are persons with spinal cord injury (SCI) doomed to continuing poor health from the same consequences of a sedentary life that able people suffer? Their plight is worse since the interruption of their sitting is absolute, total all-day. 

Conditions have improved over time. At least they sit up now from spending a lifetime in bed. It was believed that SCIs would spend their lifetime in bed because they could not sit up. This was because they would faint. However, it was eventually discovered in the mid 20th century that this did not have to be so. They could overcome this fainting tendency, not unlike able-bodied, bed-ridden patients post-surgery for instance, with repeated changes in posture from lying down to sitting up, speed up their post-operative recovery, better health, resulting also in reduced medical costs. 

SCI patients now can experience the same therapeutic benefits of frequent standing, as well as some mobility using the Standing Chair specially designed for them. Designs that make standing-up easy, encourage users to stand-up as many as 45-60 times per day (minimum required is 36/day). This inevitably frees them from being pinned to the wheelchair all day, bringing the same sense of independence and healing benefits that standing-up does in able-bodied persons.

¹ Vernikos, Joan. Sitting Kills, Moving Heals; Quill Driver Books, Fresno, CA (2011); Levine AJ. Get Up! Why Your Chair is Killing You and What You Can do About It. Palgrave Macmillan, New York 2014.

² Katzmaryk PT, Church TS, Craig CL, Bouchard C. Sitting time and mortality from all causes, cardiovascular disease and cancer. Med Sci Sports Ex, 41:998-1005, (2009).

³ Dunstan DW, Kingwell BA, Larsen R, Healy GN, Cerrin E, Hamilton MT, Shaw JE, Bertovic DA, Zimmet PZ, Salmon J, Owen N. Breaking Up prolonged sitting reduces postprandial glucose and insulin responses. Diabetes Care 35(5):976-983, 2012.