Wednesday, May 24, 2017

Update May 27 201 7 -In Process: My New Power Wheelchair May Be In Da House, But..

Tilting/Power seating chairs, mean great 
comfort and even naps with a friend!
(UPDATED Below under the Last paragraph About The financial Part )
Last time I was excited to share that my new power wheelchair was in da house, ready for me to test out. At first, most of it felt wonderful. In fact, for A person with severe scoliosis, I actually felt like I was sitting up straighter than ever. That is a big deal, Considering The curve I have Is about 80° or more. Another wonderful Thing was I first noticed that my usually cramped up feet, Felt relaxed And painless Because the foot rest pedals or plates, Actually fit the length of my foot. Keep in mind I only have size 5 foot. Who knew all these years, my old clunker chair footrests Where is the source of my foot cramps, All because my toes hot off the end! So out of the gate, all was going really well with my new chair.
However, I call this the in process phase and the longer you sit in the chair, you can feel which areas need to be tweaked and adjusted. That includes parts that initially seemed perfect. Makes sense, the more you wear or try something, the more you can tell what is or isn't right.
For instance, The new headrest is more streamlined And cooler looking, than my old big cushy one. But, As I tried to watch a movie In the tilted position - My head began to hurt a bit and actually experienced some numbness. Not a big deal, Because I know That is something we will work out.
But glad to have discovered this fact.
So thankful they let me test all this out first.  The people at Motion Specialty, are doing a great job making sure that everything works and fits my wonky body just right. It is why they use Demo model Parts first for me to try it out, so we can decide what fits best.
As you may already know, all of us folks who have "special needs," literally have special needs. In fact, no two humans, special needs or not, are unique. Our DNA is unique to each one of us, thanks to God's amazing design. (Psalm 139)
The Perfect Fit Matters
My husband used to be a mailman and he wore something called postman boots. If those boots did not fit him correctly, In all the right places, Then he would get very sore feet and really bad blisters.
I'm sure many of you ladies out there like to collect shoes, I once met someone who had over 200 pairs of shoes all organized in individual boxes, each pair having a photograph of those shoes on the box, to make sure she knew which pair was in which box. Don't know if she ever actually wore them more than once, if ever- But I'm guessing She made sure they fit her feet well before she bought them. Who wants to have sore feet!
All the more reason for us to make sure all fits perfectly, before we commit to anything specific such as the customized back or headrest type.
The Small things Matter A Lot!
In fact, because I am so used to My 12-year-old power chair, and joystick module. The joystick for those who do not know, Is the part used to steer and drive the chair.  Much like a video game control. For me, getting a new power chair after so many years I'm changing models, I was nervous about The new joysticks I had seen others using.
Wanting to make sure my concerns were addressed, our great sales persons from, Motion Specialty brought in the fellow who is the sales person for the particular brand of Wheelchair I was getting.
I  had assumed getting a new chair meant, having no choice about the joystick.
This is my new joystick - see how much the screen
and switches protrude 
out in front of the actually driving knob."
He explained to me there were options available. In the end, It turned out that the new model that comes with this new chair, fits my needs. Something as small as a joystick module, is a big deal For many of us. On my old chair, the joystick part is close to the front of the device. Which means I can get up to counters and tables Fairly easy, nothing juts out, in the way.
The new ones, apparently due to popular demand, have what looks like smart phone screens sticking out in front of the actual joystick part. See the photos here comparing my old Mark iv with the new one.
My old joystick- note the "knob" is close
to the front, no obstructions.

Initially, my concern was smashing into a wall or doorframe by accident and not being able to get close to, or under table tops and counters, due to a high possible profile.  Turned out the one that comes with my new one, may have the screen and knob in a not perfect layout (for me anyway), but, thankfully, the screen part is a lower profile than other models and makes I have seen.
If this one didn't work for me, the model below, with just a knob basically, was another option - and a set of switches would have been attached separately in another location. But a lot more expensive. Good to know there are options though.
Incase you are wondering, the new modules may look like a smart screen but nope, it can't hook up to the internet. There is even an SD card reader, nuts, again, it isn't for our use, just for the technician's. I am sure that will happen one day!
The Process Is Almost Complete
So I have had to park the chair temporarily,  because I asked for an adjustment to the back that only the tech person can undo, and now I lost my comfort zone. Silly me,  for some reason, I thought it would work better. Not!
As well, we are waiting for the new back, headrest and my new ROHO Quadtro cushion. The parts I have been using are the demo parts. They did their job, we demo'd them, and know they will work.  Makes sense to now wait for all those components to arrive, so they can be set up just for my body. Can't wait.
Another Small Thing That Matters
As I mentioned, I have severe scoliosis, that is a secondary part of my Spinal Muscular Atrophy type 3. Until the new chair came, for a year or more, I have been battling sitting up "straight." Always feeling like I need to be pulled this way or that, or have a sponge stuffed into my side to prop me up. Even trying a folded towel under one half of my cushion. Because of my "S" spine, the major part of my weight is put on my right hip/backside  area, which means I need to be higher up on the right side. "T", our wonderful salesperson that we have known for a couple of decades, brought me a simple wedge of firm foam for under my cushion. What a difference! We do love and trust T! Thank you "T"for all you do for us - we love that great technician "M," too, he knows who he is :o)!
One More Butt...
Pardon the pun, but, for anyone who has the same seating issues as me, needing uneven support under their heiney, because of scoliosis. The ROHO Quadtro is great for this. It is divided into four quadrants and you can lean  one way, to release air wherever you want (my husband thinks I am being funny- not that kind of air Craig!), by leaning and locking the dividing sections.

On A Financial Note About The Central Equipment Pool
- It Won't Be  Mine
Updated May 27, 2017: I just wanted to add this Update To this portion of my article. It appears Was given inaccurate information. It is good news for those who receive chairs like mine through the central equipment pool program. So, If my need suddenly changed Or I passed away Very soon, Contrary to what I was originally told, The ADP program Or central equipment pool Program that is under our Ministry of health Division, Would Basically Check over the condition of the chair And then reimburse my husband A portion of The client Part. Therefore I assume, If is my chair is in perfect condition and basically brand-new, He would receive Pretty much The entire client portion back, If I were to check out :o) Hope that all makes sense. I am leaving the original Article, But this update contains the corrected Information.

 And one more thing that some may want to know. In fact, we know some friends who do not know this. So awareness is a good thing.
Legally, this chair isn't mine and most likely may never be.  You see there is quite a process when getting customized, Power seating wheelchairs.  First of all, In Ontario, a wheelchair like mine that requires special seating, the whole tilting back seat thing,  means instead of it actually belonging to me once the client portion and government portion is paid for, like my older, regular power chairs would be...The special power seating chairs,  belong to  the government. Yes, The government pays for  seventy five percent Of the wheelchair cost. Excluding Batteries Which are $600. I am blessed Living in a province/Country that even has funding programs for mobility aids. But, It is kind of funny how they pay for most of the wheelchair, but no Portion of the batteries required to make it work! As well as options like foam filled tires (avoiding holes in pneumatic ones), another $500 for that with no portion covered. Good to know, if funding is a concern. We needed to cut any non-essentials, so the tires went back to air only. In the end, I do get to use the foam filled/no flats. A relief for me.
There are some other quirky areas regarding funding, That I don't want to get into. And in no way, am I complaining because I am thankful-  we know in countries like Peru, they do not have the government programs we do, to be able to get a new wheelchair. I just wanted to share this so others who live here, could know.

So, If I Died...
So this is why I am telling you this, once we pay what is called the client portion of the wheelchair, In my case It will be about $4900.00...If I went to Heaven, the next day, My husband would not be able to get any of the money back, or even sell the wheelchair. Why, you ask? Because I never will be able to keep it.  And I believe this is why, power seating is a lot more expensive than regular power chairs, Like the kind I used to have. So a central equipment pool was created,  by our Ontario government, so that very expensive seating  needs can be covered by basically the usual 75%. But,  in the event that the client passes away, the chair would go back into the pool for someone else to use who needs it in the future. It would be refurbished and customized for the next user. TEchnically, even the chair I just received, could very well have parts like the base motor section, that was used before. It all looks new to me. But it is a possibility.
I know that sounds confusing and when you think about it, it doesn't quite make sense.  But that is how it works, and we accept it, whether it makes sense or not because unless we had mega funds, we have no other way to obtain the seating we require. Which still leaves me thankful to even have this option available.

In the case of my 12 year old power Tilt wheel chair, I do get to keep it as a spare, because it is so old And not worth it to refurbish for someone else. Mind you, for someone in a place like Peru, This old clunker would be of real benefit!

Life Expectancy May Be a Factor
Okay, This might help explain the Equipment pool program. From experience I know many of us who live with physical disabilities, that do not have an average life expectancy or even have rapidly changing physical needs due to the progressive changes caused by something like a motor neuron disorder/disease.  Which means we may require new chairs and equipment far more often, than those who have say, a spinal cord injury that leaves them with possibly, a more physically stable body and therefore not requiring changes and upgrades to seating and such.
And those of us who require, (in many cases, not all), specialized, custom, power seating -have a progressive physical changes. Which means, What works this year or month, not in a year or so. Meaning seating needs to be upgraded or changed often to accommodate a changing body.
Even myself,  within my fifty plus years, my seating needs are completely different from day one.
So therefore, If the government let all of us keep the chairs they pay 75% for,   The demand For funding, For new wheelchairs Could incur Far more cost If they didn't have Returned chairs that they could refurbish. Personally, I think all the covered equipment should be treated in the same manner and treat it like a leasing system, But then, if say I died, my husband could get a portion back - depending on how old the chair is. Just a  thought :o)
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