Wednesday, March 15, 2017

My Second Most Favourite Assistive Device...

Two great guys helping us out!
The power wheelchair has been one of the most appreciated as assistive devices that I've ever had. Or I guess we call it a mobility aid. Actually I call my chair, "my legs." Up until I was about 17, once I stopped walking I use a manual wheelchair. The hallways at my high school, we're long and daunting to push my wheels down them. As my arm and trunk muscles weakened, and I realized how much gravity was my enemy, it was A Real blessing from God when the powers that be, decided I was ready for a motorized wheelchair! At that point, I just couldn't do distances very well and fatigue was a big issue. So the first time I got to make those wheels or legs move, was one of the most freeing experiences I can remember. No more that I have to depend on other people to move me around. For
My first manual "lilac" wheelchair
the first time, even including when I could still walk (kind of looked like a waddling duck) - I was
able to go somewhere quick and fast. It was the running that I was never able to do. Absolutely incredible to this young teenager.

In fact, as I write this, I am waiting for our local dealer to set up a time so I can have my first fitting
My first power chair. The broken leg....
well, another story for another day.
for my new Power seating/tilt wheelchair. The one I am in now has served me well. It actually has exceeded the usual life expectancy of five years by seven more years. Probably because I don't truck around the countryside like I once did, hasn't been able to stay in pretty pristine condition. But needless to say it is time for my new chair.
Adjustable Beds
But I'm not here to talk about my power chair. I want to share my second favourite, essential assistive device. About 25 years ago, again the powers that be decided that an adjustable bed where the head and feet to go up and down, would be a
good option for me. No longer was I able to sit up on my own. My personal care attendants would have to grab my wrists and pull to sit me up. Back then it was not as difficult as it is today. Back then, I did not realize how valuable that bed would be to my quality-of-life. Just like my power wheelchair, the adjustable bed gives me freedom to be able to change position without strain and pain. These days it is unimaginable to go without a bed that can sit me up. Not to mention a bed that while on my back, can put me in a comfortable position.


Well after experiencing a lot of difficulties with our adjustable bed last year, doing things like moving up or down when I wasn't pressing any buttons on our wireless remote control. I started to try to fix, clean and pretty much repair the two remotes we have. Anxiety about losing the ability to sit up and position on my own, definitely began to increase. To spare you from all the details, let's just say after
This was "normal" for how our remote looked
much investigation of the actual bed and motors and such, one of my wonderful Friends discovered the box that accepts the signals for the control. When she pushed upward, the red signal light stopped flickering and went strong and steady. She turned the couple of screws and the bad miraculously, has worked perfectly up until a month ago.
Well, it started to misbehave again. I opened up Remote control that has been taped up, sealed in a plastic baggie and the rubber buttons cut and pieced together inside. For some reason there were no signs of life no matter what I did.  Even at one point the batteries burnt my finger bit, when I opened up the battery section. Had to use tweezers because I was too scared to touch them.  It all looked the way it should, yet no signs of life when I pressed the button. Frustrated, I re-opened it up re-tweaked everything one more time...nope, no life at all. As I went to remove the batteries, it's fate was sealed. That's when the wires that make contact with the battery ends
without the patches
completely fell apart. That is something that I would never be able to fix.

After fifteen plus years of pretty much great function, it was time to face reality and figure out what our options were. As I googled what I could think of about adjustable beds and remote controls, the company name popped up. I had forgotten it. Assuming it was too old to even get a remote, I thought we better phone. The company is Leggett and Pratt in South or North Carolina. The first fellow I spoke with knew who I was just from the number inside my broken down remote or "hand wand" as I see they call it now. He was kind and obviously kept consulting with the technicians because I was on hold off an on. Armand said we would have to replace the "Jump Box," or updated electronics because our bed was just too old. He said our bed was also under a twenty year pro-rated
warranty. That meant that the cost was cut down a bit. Not sure if we should get both beds replaced because of costs, I said we would call back. In under three minute, we decided having only one bed working, would wreck the bedding and mattress foam. Calling back right away, we couldn't get the nice man again and had another service representative. To make a long story shorter, the new person told us we didn't need those parts, just new remotes. Puzzled, I said okay please send two controls.

Within three days we had the new remotes. Opening the box, I had a feeling it wasn't what we needed. After more calls, we were emailed a programming booklet - tried everything and nothing happened. The next day, after a long time of investigation and info gathering, we went from yes, this is the right remote, to we need to switch out the system. Turned out the first person was totally correct. All the service people we nice and friendly and as a bonus, we were told because of how everything had been, we didn't have to pay for the J-Boxes. It was great relief to hear that.

So for anyone with an adjustable bed that needs help. You may be able to get help  even if it is really old. Our bed is a great. The first one I had years ago had a broken head up motor, that my dad replaced with the foot motor- since sitting up is most important for my needs. Not sure of that brand, but the L & P brand, is durable and aside from a loose box and worn out remotes, is still working great!

Thinking we had time because I had the last working, albeit patched and repaired remote control, we didn't worry about switching out the J-Box. Well, God definitely takes care of us. He knew we would need these parts as soon as possible. He knew that only a week or less after receiving the control boxes, that I would be pressing the "down" button on the head part, while my friend and PCA Heather was waiting for me to be in position so she could assist me further for bed time, would go berserk! Suddenly, the bed begins to make a horrible vibration sound and at the same time, began
Switching the green box for the black box
going up, when I was pressing down!! I began to panic yelling! "Pull out the plug! Pull Out the plug!" Out she pulls it and the ruckus ceased. The modern beds, including ours, do not have a back up crank or anything. That has always been the "what-if." fear. What-if the remote breaks completely and we are stuck in the upright position?  Thankfully unplugging it reset the electronics and I was able to get it back down. My husband and I were concerned that the bed may begin to move suddenly, in the middle of the night.

Actually, the vibrate part is the massage function the bed has. Since in no way does it feel like a massage, I had put a piece of paper inside the control to block the contacts for the massage buttons. That's why I freaked out when it all happened. It has been blocked for years! Needless to say, my husband phoned a friend the next morning to see if he could help my dad to switch out the boxes. P & L made it sound pretty easy to do. Just hard to flip over electric beds on your own.

My Dad and our dear friend Howard came by the day before yesterday and we figured it out. Bummer part, we started with Craig's half (bed number 1), had the  old part unscrewed and realized some of the wire components were not sent. Since my side was the essential need, they put it back together and did my side. The company apologized and it should be here by tomorrow,

It was a great relief that moved me to tears, when I pressed the remote button for the first time and it worked!! Thank You Lord! Thank You for my Dad and Howard's help. What a relief. No more anxiety about the patched up remotes falling apart or being stuck in an unwanted position...not to mention the most important being able to sit up on my own, avoiding pain discomfort and injuries to my PCAs.

In Conclusion
Thumbs up for Adjustable/electronic beds! They are a great benefit if you can't move you own body. They are also great if you have any difficulties positioning or getting comfy. The severe scoliosis I have makes laying flat on an X-ray table, stretcher or a bed VERY uncomfortable. Our bed keeps me bent up just where I need it! Depending where you live, you may be able to obtain funding or partial funding from a government devices program, insurance plan or in Canada where we are, I believe if you have a prescription, it would be tax deductible as a medical expense.

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