Pathway to Power (Chair)

As Lynn’s multiple sclerosis has progressed over the years, we have gone though 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?

For example, Lynn obviously 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 hand print all the way 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 would hear 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.

Before too long, the walking stick didn’t seem to be enough. Not only was there an issue with balance but his fatigue was so significant that any distance walking was very 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, it was difficult to get him from the vehicle to the house or anywhere else. I suggested using a wheelchair which was absolutely 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 since he didn’t want to offend her, he accepted it though initially he did refuse to use it. He refused, that is, 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.

After that night he allowed the use of the rollator if he needed to go a 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 actually pushed him around more than he walked. He really needed a wheelchair but could not bring himself to admit it. Then we had a couple of incidents where I hit something as I was pushing him along and we both went tumbling over. A rollator is just not sturdy enough to roll over cable or other object without it 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.

Our first wheelchair was a hand-me-down that did not have legs. 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 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 for getting him from place to place but he was dependent on my pushing him and it was fairly uncomfortable. At the time, he was getting physical therapy trying to help with regaining some strength and function in his limbs when one of the physical therapist suggested he attend a wheelchair clinic to look into a power chair. I’m so glad we took her advice.

The power chair clinic was an eye opener. I learned that wheelchairs are like clothes; you need to 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 and a tilt function as well as a head rest. He didn’t see the need but she convinced him that 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 and it was horrible. The tilt really helps me as much as him because when he tilts back, it removes gravity’s influence 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 really hurting and miserable. Fortunately, we had a portable access ramp that I was able to 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.

The last mobility device we have bought for his use is, unfortunately, 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 very expensive ($12,000 and not covered by insurance) but it would allow him to again participate in his favorite pastime-surf fishing. He ordered it but it never worked in the sand nor did it have the power necessary 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 have refused to return the controller despite our many attempts to get it back.

continue reading at: http://multiplesclerosis.net/caregiver/pathway-power-chair/

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About mscaregiverdonna

I am a full-time caregiver for my spouse who has Multiple Sclerosis while I try to work full-time, take care of our home, and handle any number of other functions that used to be shared by the two of us. I'm learning that it's amazing what you can do when you have to and when you have God to send you the resources you need to manage moment by moment.
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9 Responses to Pathway to Power (Chair)

  1. wheeler71 says:

    Did you ever receive the controller back from the company?

    • I did but currently it is not working correctly. IT no longer raises or lowers the height of the wheelchair. We have found another vendor in the US who says he should be able to help with that. Just haven’t had time yet to send it.

  2. wheeler71 says:

    So it drives and everything, but it just doesn’t want to elevate? That sounds like something small, I have delt with Radical Mobility before and found them very helpfull, I’ll drop them a mail for advice.
    Regards
    John

  3. thank you for your offer and I’m very glad your experience has not been like ours but I would prefer not to deal with them again. I have had multiple contacts from their customers with the same concerns as mine. Even one of their partner companies apologized to us for what was happening and how frustrated they were as well. Some of the company’s staff have been very helpful and have really tried to help but were unable to move our concern forward. I would just prefer not to try to get assistance from them.

  4. wheeler71 says:

    Hope Lynn goes beach riding soon.

  5. wheeler71 says:

    Strange you continue bad mouthing the company that has done so much good for others but you refuse to ask them for advice? The CEO is always willing to help, I think you should drop them a mail.

    • I am sure that he has done good for many people. That is just not our experience. I would prefer not to share more of our situation in such an open forum but would be glad to give you more detail if you want to contact me on my personal blog site. mscaregiverdonna.wordpress.com It has my email address there for personal connections.

      • whoops, I thought I was on the website I write for. You can contact me for more information at donnasteigleder@gmail.com. You can read more details on our struggle with them on my post: Thinking of Buying 4WD Wheelchair? Don’t Buy from Radical Mobility! and Update on Ongoing 4WD Wheelchair. Unfortunately in our case, the CEO was very unwilling to help and refused to accept most of our emails requesting assistance. Fortunately, after he was contacted by one of his partner companies on our behalf, he finally assisted after an additional 9-10 emails asking for updates (most of those emails not ever receiving a reply). I have heard from many of their customers having the same experience with heart breaking accounts of parents buying chairs for children from him that they have outgrown before they could get satisfaction on repairs or others that he simply refused to continue to communicate with, like us. I expect he can be excellent with those he wants to be but for those who have expressed concerns with his product, he refuses to assist or ignores. He has had many kind employees and associates that we have worked with but we have been told by a reliable person within the company that our emails go directly to him and he was blocking correspondence with us. He has also threatened to take me to court for expressing my concerns with his service. Therefore, I choose not to attempt to communicate with him further.

  6. wheeler71 says:

    But yet you continue to bad mouth the company, yet you choose not to communicate with them, I just got a mail back from them saying they never new you still having problems after receiving the electronics back.

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