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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Just Because It Can Be Done Doesn't Mean It Should Be

With much excitement but a little trepidation, Lynn and I returned to church last Sunday.  We had not been able to attend there since he started requiring the use of a wheelchair to get around.  When he first came home from the hospital in 2010, he was too weak for almost a year; then as his strength improved he started using Rebif and just felt too bad.  Finally, he switched to Tecfidera and was strong enough and felt well enough to return to church but then we measured the old elevator and realized he couldn’t get his wheelchair in it and then be able to make the 90o turn to get back out again. So we resigned ourselves to listening to the previous week’s sermon each Sunday morning as our worship participation.  Then our prayers were answered and after several years of planning and fundraising, the church has expanded the building and part of that expansion was a wonderful, large, smooth-running elevator!

Last week was the first week the county had given the church an occupancy permit so the elevator could be used.  We got word on Friday that all was good for us to return on Sunday.  I have to admit; we were nervous.  For one thing, we were not sure about where everything was or how to use it but figured we could work it out when we got there. Second, while Lynn has periodically gone to doctor’s appointments for extended periods, he has not been in a setting where he could not move around, adjust his wheelchair tilt to lie back, or be able to have other comfort measures performed for the period of time he would be in church.  We prepared by limiting his liquid intake that morning while increasing his protein and carrying a smoothie for him to drink as soon as service was over. That seemed to work; no unexpected bathroom trips during the sermon.
Another concern was clothing.  At home he wears layers due to his difficulty in regulating body temperature.  Also, his waistline is impacted by the baclofen pump implant so getting suit pants on was going to be a challenge.  Therefore, we had ordered dress pants designed for people who used wheelchairs.  The butt is “out” on the pants so that the back is a panel that wraps around and snaps into place. It worked perfectly. They were also light weight but heavy enough for when he felt cool.  A pull-over collar shirt completed the outfit.  Since our church members usually do not wear suites, he would fit right in.
Continue reading this post at http://multiplesclerosis.net/living-with-ms/just-can-done-doesnt-mean/

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Now This is What I Call Accessible

you asked for it!For the first time in eight years, Lynn has been able to “swim” in the ocean.  He was overjoyed at the experience (that grimace in the picture is only due to the wave splashing in his face; he was having a blast) and so were we.  So in spite of the fact that Radical Mobility apparently lied to us about sending us the parts to make his 4wd wheelchair work for our beach vacation, we found a truly accommodating community that supported our needs.
During the winter, I was told by one of our home health providers about a handicap accessible house on Emerald Isle in North Carolina.  She told us that the fire department there loaned floating wheelchairs that could be used on the beach on a first come first served basis.  We checked it out and found a beach house that had a ramp that lead directly to the beach and was able to get a wheelchair from the fire department.  Those chairs are incredible! They have huge back wheels, slightly smaller front wheels that are very bouncy and are made from materials that can get totally wet.  Therefore, when you get the chair in the water, it floats up.  It took three of us to hold it steady in the water but he was able to ride the waves!
After playing at the beach, he took a day off to re-energize and on Wednesday, he hit the beach again.  Though, my husband thinks he’s brave; I just know he’s crazy; but he wanted us to tie a rope to his life vest and let him float in the water without the chair!  He was convinced that the vest would keep him from drowning.  We tried to argue but he was not budging.  So I tied the rope to the top of the vest and let him see that when the waves came in, the rope swirled around in the water and could create a safety risk itself.  He finally saw that and agreed that was not a good solution. Finally we compromised.  We sat him in the water a few feet from the edge of the surf so it would hit him mid-chest. He wanted to lie on a buggy board to float but we convinced him that face down in the surf without the ability to hold onto the board, might not be very effective.  He tried to clutch the board and realized his spasticity would not allow him to do what he wanted and gave up on that, but he still had a great time.
This has been such a great vacation for him.  He’s finally realized he needs a day of rest between events and that has helped.  He has been able to participate by sitting on the deck that overlooks the sea because it’s plenty big enough for his wheelchair to maneuver around.  He has been a part of the group or alone based on how he feels.
The rest of our group has been very supportive to us both.   Though I cannot get away without putting in an indwelling catheter which limits my outing times, I have been able to get away twice to run errands and his son takes over my role.  Plus his son is much stronger than me so he’s helped with so much of the moving and lifting.  We are so blessed by our supportive and loving family who have often put our needs before their own.
We have also have our grandson with us as well as my parents.  Altogether we have had eight adults and 1 child (age 15 months so he’s into everything).  Both my husband and the baby are special needs so we have all taken turns Eli at the beachrelieving the baby’s parents and they in turn relieve me.  It really helps to make vacation time manageable; otherwise the extra efforts needed to survive in a house that is not set up to meet the “patient’s” special needs would make a vacation miserable.  To be honest that has been the case for many of our former vacation years.  Not so, now.  We have found our vacation spot!
In fact, I’ve put in a “pre-registration” for a house next summer in this same area that has a roll-in shower, handicap ramp, a pool, and an elevator.  I’m really excited because the shower is still a bit of a problem here.  They have an outdoor hot/cold shower but it does not have sitting for the disabled so we have hooked up a hose to the spout and shower him just outside the shower itself.  It’s a bit cool doing it that way though plus he can’t take his shorts off since  it’s outside and could be viewed from the street.  Don’t want an x-rated show for the neighbors.
I wish all communities were so sensitive to those with special needs.  It should be that all people can have the same opportunities to access the beach; not just those with two feet.  Emerald Isle is such a community and I’ve been very impressed with them.  If you’re looking for a great summer spot, I highly recommend them.lynn going to beach

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Radical Mobility Lets Us Down Yet Again

Within a few days, we’ll be getting ready to head out to the beach. Lynn loves the beach.  His favorite past-time has always been to surf fish.  Since he became restricted to a wheelchair, this has not been possible.  So in hopes of being able to participate in that joyful experience he purchased a very expensive 4-wheel drive wheelchair from Radical Mobility in 2009.  Unfortunately, he has never been able to use it (see my post about this from March 2013 for details  http://mscaregiverdonna.wordpress.com/2013/03/01/thinking-of-buying-4wd-wheelchair-dont-buy-from-radical-mobility/).
When it first arrived, he was too sick but by the following summer, he was well enough to take it with us to the beach.  However, once there, it would not carry him up the ramp into the van and it would not drive on sand; both essential functions if you want to go to the water’s edge.
When we returned home, he started attempting to contact Radical Mobility to find out about having it fixed. Per their instructions we sent them the parts that were defective in April 2012.  To date, we have not gotten them back.  When I posted that blog, Radical Mobility commented to it:

Albert says:

Dear Mrs Steigleder,

We are extremely sorry that you did not receive the controls that was sent, we should have checked back with you to make sure everything was in order. We did receive email from our new branch in Durban but assumed you have received the package. I have forwarded your mail to our CEO, (martin@martinbrown.co.za) who is going to be livid and heads are going to fly.
He has had some heath issues this past year but is recovering well. We will send you a new control, cable and power module on Monday 4th when the factory opens at 08h00. It will be sent with TNT, UPS or Fed ex so we can assure its arrival this time, only thing we will need is picture of the two motor plugs. They are the plugs with the red, black and two white wires in the centre, reason being that they can get the polarity correct on the programming.

Once again we apologise and hope to get Lynn fishing soon, please join our blog, Facebook page, Twitter, Flickr as we don’t see you at all on those sites.
You can mail me direct at workshop@radicalmobility.com, lets get these parts to you soonest and Lynn out fishing again.

Kind Regards

Albert Seko
Operations Manager

Radical Holdings (Pty) Ltd
T/A Radical Mobility

I was so excited to think that our waiting was over and they would promptly correct the problem.  I trusted them at their word to send back out parts.  To date, we still don’t have the parts.  We were told weeks ago it had been shipped and we would get the tracking numbers.  Though we have emailed multiple times and requested the tracking numbers, we have not received them.
In my frustration, I threatened to write bad reviews anywhere I saw them advertised.  Their response was to threaten to take me to court.  I don’t know the laws in South Africa but I would assume that a company is held to their verbal commitments to stand by their product so as long as I comment on what we have experienced, I don’t think I have a legal concern.
To be honest though, the legal issue is not my main concern. My concern is that once again we’re heading to the beach and Lynn will be left out of much of the fun because he can’t get out on the beach. It’s so very depressing to be so close yet so far away. It’s bad enough to feel bad every day, to not be able to do anything for yourself, to have to watch others have fun while you sit on the sidelines; but what is worse is that they PROMISED we would have the parts back easily in time for him to have the wheelchair working this year. They lied.  We built hope around that lie and now, though he’s not saying it, I know Lynn is dreading going.  And because he can’t participate, neither will I for most of the activities.  I’ll need to stay close by in case he needs anything.  Our kids will stay with him some but they want to go out too.  They stay usually in one room while he sits in another watching TV or typing on his book.  He gets very lonely because he has limited access to all the fun and to being part of the group.  Some of that is his own fault because he doesn’t want to watch what they do and won’t do so just to be in the group  (but on the other hand, if he’s miserable, watching a program you don’t like doesn’t help either.)
We’re trying to stay positive.  I hear the fire department there might have manual wheelchairs we can use on the beach so hopefully we can rent one for a few days.  But it’s a shame we have to pay money to rent a chair for the beach when we have one we bought for that purpose sitting right here in our living room.
Lynn doesn’t want to take legal action, but I see no other choice to bring this to resolution; so does anyone know what type of lawyer I need to deal with a company in South Africa who breached their contract? If so, please let me know.

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The Best Laid Plans…Oh, Forget It

By far, one of the greatest frustrations I have as a caregiver is that I have no control over what I want to do and when I want to do it. I am sitting here so frustrated at this moment that I can hardly think straight.
Today is July 4, my day off.  However, I actually planned to work today to catch up on some projects at work that I REALLY need to do.  I had my plans all straight but here it is 4 pm and I have not done anything I planned to do.  I could cry.
I took some “me” time last night from midnight to 2 a.m. to watch a movie I rented from Blockbluster (been trying for a week to even be able to put it in the DVD player).  BIG MISTAKE.  It never pays to take “me” time.  I always regret it later.  So anyway, I took the time to watch a movie; afterwards waking Lynn for his dinner (yeah, I know we have weird schedules), feeding him, doing his night routine and then mine, so I got to bed at 3:30 a.m.  Up again at 5, 7, and 9 (Lynn thinking it was 10.  He seems to think he’s my personal alarm clock and heaven forbid I just be allowed to sleep till I wake up on a day off!) to cath him. I go back to bed to sleep till 10 so I get 5 3/4 hours of sleep (15 min per cath event).  Getting up at 10, of course, makes me  late getting started but I figure, we have nothing special we have to do today, I’ll easily get started by 1 with what I need to do.
Then the day precedes to be shot to h___.  I do the morning prep work while he does his vocal exercises.  I take him to the bathroom and it doesn’t go as expected.  He has to use suppositories due to limited muscle strength and it didn’t “come back” like it should.  That means disaster.  Now we’re waiting in the bathroom and he decides he needs to pee (why couldn’t he have gone before we go the bathroom–yeah that doesn’t make sense to you unless you know that the cath supplies are in the bedroom not the bathroom). I finish that, get him cleaned up and then he announces he wants to sit in his manual wheelchair (he’s trying to toughen up his butt in hopes he can tolerate the cushion in that chair and maybe go to church again one day).  That means rearranging various pieces of equipment to get the manual chair out of of that room and putting him on it instead of the power chair.  That done, we go to the kitchen for his morning pills.
In the kitchen he takes his meds and decides he wants me to put weights on his wrist to work his arms.  That done, I turn to begin preparing my meal….no wait…. he needs me to help him with his arm exercises.  I do that, then take off the weights, and begin to get ready to take him back to his room. No wait….”I want to do pull downs in the weight room,” he announces.
I again go to the weight room (which I had just rearranged to get the manual wheelchair out), rearrange it again to get it ready for him and back I go to the kitchen to get him.  I roll him to the weight room and help him do the pull-down work out and then take him to the bedroom to set up the massager for his feet. I then go to start my breakfast (two hours after I get up) and eat.  While eating I prepare mushrooms for roasting, and cook spinach for his diet; also make his soup for lunch.  As I finish, I hear, “Sweetie, come back. I need to go to the bathroom again.”  Large GROAN.
With sagging heart, I go and take him back to the bathroom (remember, I only do manual lifts so I’m physically lifting him in and out of these wheelchairs and onto the toilet).  He “goes” and then says he might as well lie down awhile so I roll him to his bed.  “Oh, yeah, I want to do  push-ups.” Seriously???
I get out the PVC work-out pipes that I insert under his mattress (out of the weight room, of course) and help him do push-ups.  Then I settle him down for a nap (put his pants on him again, cath him, put his boots on him so his feet don’t cramp, get the TV set for viewing, wash his face, and straighten up the room.)
While he’s down for a nap, I just finish cooking what I put on while eating, washing the dishes and doing a load of laundry when I hear, “I’m ready to get up.”  I get him re-dressed, hook him up to his peddlar,  hear “I’m hungry,” so I feed him breakfast and as I finish feeding him, hear, “I need to go back to the bathroom again.” Major sigh…..
Back to the bathroom, back to bed, redress, get him back up, reconnect him to his peddlar, make him tea, cath again, and do a few adjustments, and now it’s 4 pm.  Six hours after I get up, I’m finally finished with his morning activities and I’m ready to “start” my day.
I give up! I think I’ll just take the take “off.”  After all, it will be time to cath him again in thirty minutes (true enough, he called to be cathed again at precisely 4:36) and he’ll want a snack 30 minutes after than, and then more tea, followed by another cath…..
So much for my plans.
I know none of the above was unnecessary for his comfort and well-being.  I know that he hates the fact that he had to disrupt my day so much (and I’m sure he hated hearing my complaining about it even more).  But that doesn’t change the fact that it’s depressing to have so little control over my plans. I’m tired of being unable to plan anything and I’m tired of disappointments but most of all I’m tired of the fact that I haven’t found a way to not let it get to me.
I really wish it didn’t. I wish I could laugh it off and just roll with the punches but that “funny bone” just ain’t working right now.  Could be lack of sleep; could be the fact my arthritis is really bugging me; or it could be….I’m just feeling sorry for myself and making it all about me.  It’s not all about me and it’s not all about him.  It’s all about us.  We’re in this together and I need to keep my perspective on it.  In the scheme of my life right now, not being able to work on writing policies for my job is not a big deal. Being able to make him comfortable and take care of his needs IS a big deal. I just have to refocus and get my perspectives right.
Hmmmm….I think I might just have the thing to do that…I think I’ll go make a slushy out of watermelon….yeah, that will make it all better.
Happy 4th of July.

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Update on Ongoing 4WD Wheelchair

If you follow my blog, you read a post on March 1 describing the challenges we were having related to a 4 wheel drive wheelchair we bought three years ago from Radical Mobility that has never worked.  We sent them the motor to the wheels, the controller and cabling, almost two years ago now and have still not received them back.  We had attempted over and over again to communicate with the company but unsuccessfully…until I wrote a blog about it.
I immediately got a response from the company (Radical Mobility) apologizing for the issues we had experienced and was given a promise that our repairs would be immediately addressed and the items returned, going into the mail on March 5.  Well, it’s now April 24 and they still have not shipped the items!
Initially I though we were going to get the relief we wanted.  I got excited that FINALLY we would get the parts back and Lynn would be able to use his wheelchair on our summer vacation.  I was contacted by the sales department to send them pictures of the connecting cables to make sure they were wired properly.  I immediately responded and was promised the motors would be fixed and ready to go by the next week.  Then silence; weeks of silence. 
I have repeatedly sent them emails; most of which go unanswered.  I occasionally get a response back promising that it’s going in the mail by xxxx.  I’ve been told the parts were stolen when their warehouse was broken into.  The parts would not have been there to be stolen if they had sent them when they promised.  The last promise was that they would be shipped the Tuesday after Easter and the tracking numbers would be sent to us promptly. 
Still no tracking numbers.  No answers to my inquiries either about the status.
I am so disappointed in this company.  When I visit their webpage, the wheelchairs look like they do exactly what Lynn needs so that he can fish again.  His life is so limited in entertainment and fun.  I had so hoped that Radical Mobility would come through for us but once again, I’ve been seriously disappointed.  I was even going to rescind the negative blog if they had followed through…but they haven’t. 
The owner of this company appears to be a quadriplegic.  If he is, he KNOWs how important these type of devices are to those who have so few options to participate in the activities they enjoyed before…  Why would he allow his company to disappoint those who face the same challenges he does?  We paid him $15,000 to get that chair and it has never worked.  Makes me wonder what he uses the money for. Is this a scam or a legitimate business?  I’m just not sure anymore.
So once again, I warn my readers, if you are looking for an all-terrain wheelchair, do NOT buy from Radical Mobility.  They cannot be trusted to support their merchandise and their customer service, both in communication and in follow-through, is non-existent. Don’t believe what they put on their website; if you do, you’ll be severely disappointed as we have been. 
We still have our hopes that if they FINALLY ship the parts, they might get through customs and to us before the end of summer so he can go fishing but it’s now starting to look very doubtful. Say a prayer for us that they will live up to what they promised soon.

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Shower Day

Bathroom fixtures for mobility impairments.

For most people, a shower is just a routine part of their day.  It takes no more preparation than making sure you have shampoo and soap and clothes to put on afterward.  Not so, if the person who needs a shower is in a wheelchair and cannot help themselves.

When I first started bathing Lynn, I had a shower seat I put in the tube.  I lifted him onto the bench, shifted his legs over the edge of the container, and used a hand-held spray for bathing him.  Reaching over the side of the tub was difficult, and we were both soaked by the end of the bath.   My back also was usually aching by then too. We choose this method because it was the only room I could get a wheelchair into since bathroom doors are more narrow than other entries.  (why is that by the way?)

Then our church got us a shower into which we could roll a wheelchair.  That was wonderful.  I lifted him from the transport wheelchair onto the shower seat.  It allowed me to be in the shower with him and not get wet but have plenty of room to bathe him.  The only issue was lifting him back into the wheelchair while he was soaked.  Lifting him while soaked didn’t feel very safe, and a few times, I wasn’t sure I would make it from the shower seat to getting him back safely into the wheelchair due to slippery surfaces.

Then we hit upon the perfect answer…a shower wheelchair!  Now we have the best of both worlds.  I can roll him into the shower, stay relatively dry while I bathe him and I don’t have to lift him while he’s wet.

But still, shower day is a big job.  It takes a lot of preparation time to get everything ready, then time for the bathing and drying and dressing.  I always wait until after I bathe him to take my bath because I get pretty sweaty from working in the hot shower, but this is SO much better than what we had before.

One word of caution, though.  Today I was going to save time by coloring my hair while I also bathed him.  I put the color on and put a shower cap over it.  You’re only supposed to have the color on for about 30 minutes.  We had some unexpected events with the shower today, and an hour later, I still had not washed out the color!  Nothing happened. I still have my hair, and the color’s okay so no big deal but trying to combine the two might not be such a good idea in case you’re ever considering doing the same thing!

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