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/
When Lynn first lost his ability to walk, what he missed the most was fishing. He loved to surf fish. At least four times a year, we would take a long weekend and go to Cape Hatteras for him to fish. It didn’t matter if it was raining, cold, or hot, he would pack up his fishing gear and take to the sand. Me–I would pack a good book and relax! At night we ate what he caught or we went out for seafood.
Our last trip was the weekend we found out he “officially” had MS. During that trip, he had extreme difficulty walking to the beach. I helped him take his gear and get settled and spent a lot of time on the beach “just in case.” Once the sun went down, I went in but he continued to fish. About an hour later, he came in soaking wet. The tide had come in and he had lost his balance and been pulled under, filling his high water boots to the top and soaking through all layers of clothing. By that point he could not stand upright. He walked bent at the waist holding on to whatever was close by. I helped him get in the rest of his gear and he took a shower. Although we didn’t talk much about it, we had already been prepared by the doctor that he expected the results to be MS. So in our hearts, we knew that life as we knew it then was about to change.
After his diagnosis, he was determined to keep doing the things he loved as long as possible. He soon was using a rollator which had a seat and I was pushing him in it more than he was walking with it. After a few “spills” where I would hit a bump I could not see and he would go flying, he got a wheelchair and then a power chair. He really liked the freedom the powerchair provided and began to do research on the possibility of a wheelchair that could go in the sand. He decided that the one that seemed to have most of the features he needed was made by a company called, Radical Mobility (http://radicalmobility.com/) located in South Africa. They advertised a really cool product. The chair itself was sturdy, not particularly pretty, but it would rise straight up to see over objects and tilt back. It had various speeds, and could go in sand, over inclines, up steps, and over rough terrain and still remain upright. It had headlights, a horn, and adjustable headrest, arm rests, and legs. It seemed to be just what he needed to be able to continue to surf fish.
At that same time he was approved for A disability is a physical, mental, cognitive, or developmental condition that impairs, interferes with or limits a person's ability to engage in certain tasks or actions or participate in typical daily activities and interactions More by social security and received his back pay check. It was just enough to cover the cost of the chair (almost $13,000 including shipping). We hated to spend that much but prayed about it and felt that buying the chair was putting our faith in the possibilities of future pleasures and realized dreams. He ordered the chair giving the specifications he needed. It took about four months to build and it was shipped in early May of 2010. We were due to go on vacation the last week of July. Unfortunately, it didn’t arrive till September due to sitting in customs waiting to be ruled as “safe” and not a terrorist device. At that same time, Lynn had developed a misdiagnosed urinary track infection. He was feeling worse and worse, losing his energy level steadily.
When we got word that the wheelchair was being delivered, he was too sick to check it out. The truck driver could not get up our driveway with his tractor-trailer. He unloaded it at the end of our drive way. The shabby crate it was in had holes punched in the sides and by the time it was unloaded from the truck, it was an easy push on the poorly constructed crate to take it apart and get the wheelchair out. The instructions were very basic and poorly written. I had a very difficult time figuring out how to operate it so I could load it onto a trailer behind my car to take it to the house. (It was not completely assembled so I could not drive it to the house.)
I got the parts assembled, put it in neutral and “walked” it into the house. Since each tire moved independently, it was very difficult to drive within the close quarters of the house and to make the turns, I had to lift it around corners. I parked it in the living room hoping Lynn would be able to try it out in a few days…
Fast forward to July. From September to July, Lynn was in and out of the hospital and recuperating from his lengthy admissions. Hoping that being able to us the wheelchair would give Lynn something special to look forward to, we decided to take it with us to the beach even though Lynn had not had a chance to drive it. He really wanted to use it to at least “walk” along the beach or fish from the pier.
Two nights after our arrival we decided to try it out. We backed it out of the van and I put Lynn in it. He drove around the parking lot a little to get a feel for it and then tried to drive it up the ramp so we could take it to the beach access area. He couldn’t get it to drive up the ramp! He weighted too much (keep in mind he had lost a lot of weight in the hospital so he maybe weighed 165 lbs). My lightweight daughter could drive it up the ramp but not him (we knew she could because she had loaded it into the van initially.) We finally pushed it manually up the ramp and into the van because we were determined to try it on the sand. We got to the access area and he drove it out of the van into the sand. It went across the parking lot to the sandy area and stalled. It would not go forward or backwards. Stuck! No movement at all! I had to drive back to the condo, get his transfer wheelchair, transfer him from the dead chair to the manual chair, and then we pushed the dead chair into the van. How disappointed we all were! I felt like crying. He was heart-broken.
So we came home and tried to contact Radical Mobility to get it fixed. We sent emails and got a response that someone would return our inquiry shortly. We waited…and waited… and waited. Nothing. We sent another email. Again we waited. We figured out the salesman we bought the chair from had left the company when I went to their Facebook page, so we tried the “contact us” email. Same thing. Someone named Martin was supposed to contact us. Nothing came. We repeated the process several times. Finally Martin responded and said send them the joystick, cables and motor. We had a question about what exactly was needed, again several weeks of sending emails with no response and finally we got the instructions.
We sent the parts to their location in South Africa. No word for months. Then finally in April of last year (2012), he said it was fixed and was being sent back to us. He cautioned it might take a while before we got it due to a postal strike in South Africa. That was eleven months ago and we still do not have the motor back. We have a gutted wheelchair sitting in our living room with no way to power it up. We have emailed Radical Mobility regularly since last April to ask for tracking information and help with locating our motor and no response. Occasionally we have gotten an email back saying they are checking on it and will get back but they don’t.
This machine was built in South Africa. They do not have an American facility. We have no way that we know of to get the motor back. We are now searching for another manufacturer who might be able to build a comparable motor that could be installed so we can use the wheelchair. I’m sure it will cost us several thousand to get the necessary parts programmed, built, shipped and installed.
I feel betrayed. This company is owned and the machines designed by someone who is paralyzed. He knows the struggles of the immobility challenged. How can he treat fellow disabled individuals so shabbily? It’s unethical and wrong on so many fronts. He took our $13,000 and gave us a large statue for our living room. It’s worthless. But the worth part is he shattered Lynn’s dream. We cannot afford another chair. That was his only hope for getting a chair to use in the sand. This company does not even respect us enough to communicate with us; they just ignore us completely.
So if you or anyone you know is considering buying an all terrain wheelchair, please warn them not to buy one from Radical Mobility. They will take your money and not give you what you paid for. Their customer service is not even marginally present and their product just plainly does not work. Do not be fooled by the claims on their website, their Facebook page, their Tweets or their blog. Do Not Buy From Them.
I have never written a negative review like this before but my conscience just keeps telling me to warn others. I hope I have helped someone else from making the same costly mistake we made.
The life of a caregiver and their “caree” is always in such a delicate balance that I think of that old saying, “don’t tip over the apple cart.” When I hear that analogy, I have a vision of a small cart piled high with apples, holding its own until someone puts one too many apples on the pile, and then the whole stack comes tumbling down…or maybe it’s similar to a house of cards? Not sure which but I do know that it doesn’t take much to upset the balance.
In our world, balance is the secret to having a good day. There needs to be a balance of sleep versus awake time; my work and his routine; his needs and my available time. There also has to be an emotional balance. We can cope with the routine aches, pains, fatigue, and malaise but throw in more pain, fatigue, frustration, or sleep deprivation than usual then the balance is gone and we have to work toward establishing equilibrium again….whatever that is on that particular day.
What threw us off this week was Lynn’s powerchair. We’ve known for some time now that the motor was sounding as if it was going to go out at any time. When we checked with our “chair repair man” however, we found out that insurance would not pay to have it replaced until it actually went bad. I know that motors are expensive (over $1400) so I understand that the insurance company doesn’t want to replace one unless they know it’s
• Of, relating to, or constituting the essence
• inherent, of the utmost importance
• basic, indispensable, necessary,
• being a substance not made by the body in an amount great enough for normal health and growth and requires us to eat it instead.
More, but obviously, they have never had to survive a broken wheelchair!
Lynn’s powerchair is the Cadillac version. It has three speeds, the legs elevate, and the chair tilts, among other things. He uses the leg lift and the tilt function off and on all day to achieve comfort. When his legs get stiff, he elevates them to different positions. When he scoots forward after a while and ends up sitting too far forward, he tilts back and gravity helps him slide back so I don’t have to lift him. These are just two of the maneuvers he does with it all day but there are many more. Suddenly on Wednesday, he goes to tilt back to adjust his position and there is no response! Fortunately, he was not tilted back like he was being launched into space; he was on the ground; but the impact of losing “tilt” was enormous for his quality of life.
Since he could no longer tilt, he could no longer help me in shifting his position himself so I had to lift him more; therefore, my back is more sore. He could not position his chair in the slight tilt needed to keep his knees from hitting the keyboard on his computer when he worked. It interfered with his comfort in sleeping (he sleeps in the chair), his exercising, his moving from place to place with his legs dangling, and so much more…but the worst was that it keep him from being able to shift his weight as he sat for hours. By not being able to shift slightly ever so many hours, he experienced “butt fatigue” so he could not get comfortable. His buttock skin stayed compressed longer so it is redder and he now has a couple of top layer skin tears. There was even more impact than this but that’s enough for now. Let me just say that it was traumatic….for us both.
In our house, “if Lynn ain’t happy, nobody’s happy.” When he’s uncomfortable, he looks to me to find a way to make him comfortable which means constant interruptions. At times he gets angry and frustrated but that blows over. What is worse is the sadness and worry in his eyes. He wonders how long he will have to suffer and what the impact will be…because when the balance is off in an MS patient, bad things often happen.
Fortunately for us, it didn’t this time. I cheered with joy today when the doorbell rang and it was the repair man with a new motor. We were both very grateful for his ability and house call. The chair is now fixed; Lynn is comfortable again; and I should be able to get his poor butt back to health without too much trouble.
So once again, balance is restored. We both prayed for God to help us during those hours of waiting for the repair man…and he did. We worked together to make Lynn more comfortable and to reduce the discomfort as much as possible. … and where we could, we joked, or made light of the problem. Using humor, seems to lighten the load so we try that out when we can. Sometimes it works and sometimes it falls short, but most of the time we have at least a few minutes of respite to forget the seriousness.
So anyway, watch the apples you put on the chart. Try to keep a balance. When the focus shifts to the front, then try to lighten the back and get back the balance. It helps to make the waiting time go much faster.