Pathway to Powerchair
Originally published 2015
Progressive Decline
As Lynn’s multiple sclerosis has progressed over the years, we have gone through many different mobility assistive devices. Each has been a tremendous help, but at each stage along the way, Lynn has resisted using them. Looking back, I wonder if he knew then what he knows now, would it have made a difference?
Refuses to Use Anything at First
For example, Lynn had MS long before he was diagnosed with it. By the time he had an official diagnosis, he was having frequent falls, extreme fatigue, and difficulty standing upright. He grilled every night, rain or shine. To make it from the deck to the bedroom where he would watch television, he had to hold onto the hallway walls the entire distance. We have a dark smudge the width of his handprint down the hall. I tried encouraging him to use a cane, but he insisted he didn’t need one. I would regularly hear him fall. Each time, I would yell, “Anything broken or bleeding?” As long as the answer was no, I would leave him alone to get up on his own (until I heard the volume or frequency of swear words indicate it was time to step in). Finally, one day, he proudly told me when I came home that he had seen a cool Irish walking stick on the internet, which he had ordered. I think because it was “cool,” it was okay for him to use it.
Fatigue Made Walking Stick Less Effective
Before too long, the walking stick didn’t seem to be enough. Not only was there a balance issue but his fatigue was so significant that distance walking was difficult. He would be so tired just from walking from where he parked his truck to our house that the fatigue alone would cause his leg to give out, and down he would go. If the leg didn’t give out, then he was battling the spasticity, which kept him from being able to bend the leg at all. In either case, getting him from the vehicle to the house or anywhere else was difficult. I suggested using a wheelchair which was rejected as an option. One day, one of our friends showed up with a rollator (rolling walker). I told her he would likely reject the gift, but he accepted it since he didn’t want to offend her. Initially, he did refuse to use it until one day, he fell and was too tired to get back up. I suggested he allow me to push him in the rollator, and he agreed.
Accepted Rollator
After that night, he allowed the use of the rollator if he needed to go any distance. I used it like a wheelchair. It was still off-limits to mention the “w” word, but he would allow me to push him around in the rollator. I pushed him around more than he walked. He needed a wheelchair but could not bring himself to admit it. Then, we had a couple of incidents where I hit something while pushing him along, and we both went tumbling over. A rollator is just not sturdy enough to roll over cable or another object without causing a complete stop, which, if I was unprepared for the abrupt halt, would result in us both going over. It was only when I almost got hurt from such a fall that he finally agreed to a wheelchair.
Wheelchairs
Our first wheelchair was a hand-me-down that did not have leg supports. I would lift his legs and pull him rather than push him. I insisted he needed a real wheelchair, and he chose one he could propel himself (with the large wheels in the back). He honestly tried to move himself around in it, but it was apparent fairly quickly that he didn’t have the hand, arm, or shoulder strength to do that.
Having a wheelchair was a big improvement in getting him from place to place, but he was dependent on me pushing him, and it was fairly uncomfortable. At the time, he was getting physical therapy to help him regain some strength and function in his limbs when one of the physical therapists suggested he attend a wheelchair clinic to look into a power chair. I’m so glad we took her advice.
The Cadillac Device – A Power Chair
The power chair clinic was an eye opener. I learned that wheelchairs are like clothes; you must get measurements and pick them to fit the person. The sales rep was very familiar with MS and suggested he would need one that would allow his legs to lift, a tilt function, and a headrest. He didn’t see the need, but she convinced him he needed to get it now while the insurance was paying for the initial chair because it would be very difficult to get it later. I’m very glad we listened to her advice because, in just a few months, he needed all those features to manage.
Now, his wheelchair is as much a part of him as his clothing, and when it breaks, it’s a major catastrophe for us. We were recently without the tilt feature for two weeks, which was horrible. The tilt helps me as much as him because it removes gravity’s influence when he tilts back, and it’s so much easier for me to take off his clothes or shift his position. His upper body is weaker now, too, so it’s difficult for him to hold his head up and not slump forward without the use of the tilt. In fact, after just two hours without it, he was hurting and miserable. Fortunately, we had a portable access ramp that I could use to create an incline. It was a complicated process to set him up with this make-shift tilt, but it worked. However, I must say, I felt like throwing a party when the tilt system arrived and was re-installed last week.
4-wheel drive chair
Unfortunately, the last mobility device we bought for his use is one that he has never been able to use. He found a 4-wheel drive wheelchair designed by Radical Mobility in South Africa that could be used to maneuver through sand and other outdoor terrain. This awesome wheelchair was expensive ($12,000 and not covered by insurance), but it would allow him to participate in his favorite pastime-surf fishing again. He ordered it, but it never worked in the sand, nor did it have the power to carry Lynn up a ramp. The company said it needed to be reprogrammed and to send the controller back to them. That was four years ago, and they refused to return the controller despite our many attempts to get it back. We have found out that we are not the only customers who have been unsuccessful in dealing with this company, but since the company is in another country, we are at a loss to resolve this issue. We hope that one day, he will be able to find someone who can help him get his wheelchair fixed, but for now, it’s a large paperweight in our living room sitting there without a control system. Therefore, I cannot say how effective this mobility device might be in meeting his needs, though I still have hope that one day he will be able to use it.
Change Takes Time to Accept
With the progression in his mobility devices, Lynn has continued to have the freedom to move around and be independent. Each progression has been an emotionally difficult transition and a struggle for me, as his caregiver, to get him to accept, but one that was necessary and eventually appreciated. We are fortunate to have had so many effective options throughout this process.
This article originally appeared on Multiplesclerosis.Net by Health-Union, LLC, and has been reposted with permission.”
