Anita's New Chair Process: Finding a source of PAIN- When using a new wheelchair

Hi guys! As you know (Well, That's if you follow this blog at all) I have been going through and getting a new chair process. Just when I thought everything was a go, Turns out the back I thought would work is causing some pain.  So

much pain and discomfort, That I needed to go back Into my old clunker  wheelchair. Don't get me wrong, it is still - "Old Faithful," and I am thankful for it, that is for sure. It can cause pain too, but, the reasons are covered in my new short video.

I decided to do an illustration to show reasons your wheelchair may be causing pain. What matters most is finding the cause so you ca rectify it. Now this is only if you know for sure it is NOT due to your condition. I have severe 80 degree plus scoliosis "S" curve with rotation.

Watch My SHORT Video Below

Anita's New Wheelchair: Size And Shape Matters

Watch Below Our Bracket Investigation Video

Okay, it has been ten days  since my last wheelchair update (click here to see.) Wanting to be able to review the various components to this complex Power chair, I thought I would share where we are at so far. It isn't fair to give any reviews because some components like the back, still needs adjustments. However, I can say what I think so far.

More than just I, Benefit from a comfortable fitting headrest

It is important to remember that when sitting in a new wheelchair, to not to make judgment calls immediately. For instance, the day I got to go back into the "saddle," I told my sales person everything felt pretty comfortable. She knows from experience, and I too am learning, that you can't tell if something is going to be comfortable until you have used it or sat in or on it, for at least 24 to 48 hours. Perfect case in point. Remember the story of the first cushion we tried? Within minutes I thought it would be okay, but after one hour, I was pleading to get off of it!
Today I want to focus on the state of my newest headrest...
Talk About The Headrest 

The newest one: Now why won't this go in easily?

I mentioned in the last post about my new chair, it was my third attempt, trying out a new headrest and bracket. The first two headrest pads that we tried, caused my head to have numb spots and even pain at times when tilting for any length of time. We've all had our legs or arms fall asleep, imagine it happening to your scalp! Who knew pins and needles could happen there too. I am happy to report, the new larger size, along with a deeper curve has left my head with all of its feeling intact, at all times. :o)  That's a good thing in a headrest.

Clearly my lumpy and large head needed more support and padding. We went from a ten inch to a fourteen inch wide "PLUSH" model from Whitmyer. Size matters when it comes to headrests. Having the right size, is a huge improvement. Ten days later and still loving the comfort of it.  Still waiting for the sheepskin cover, then it will stand up for it's name, PLUSH!

The rectangle hole that
should be a square.

ONE PIECE, MANY PARTS...Headrest pads don't stand alone. They need to be mounted on brackets, that make them removable from the chair's back, as well as adjustable. For instance we remove my head rest every time I need to transfer, in or out of my wheelchair. It is in the way otherwise.

Shape Matters
Unfortunately on day two,   when I went to tilt my wheelchair back, the headrest moved back and forth, not locking, no matter how tight we turned the lever knob. Puzzled and surprised, we tried to figure out what was going on. Wanting to see what was happening, I got Craig to film it (watch my poor quality video at top of the post)
Turns out, as you can see in the video at the top of this page (sorry for the quality- still waiting for my YouTube appeal to come through) and photos,

the post is square and is inserted into a rectangle shape, therefore leaving too much room so the headrest cannot be properly secured, leaving room to shift back and forth.
Solution
For now, we have been making it work.
As soon as my salesperson returns from vacation, hopefully they can get the correct part and my comfy sheepskin cover will be in!


Next time for my chair Update...I want to have some Back Talk!

Thanks for stopping by!

Old Faithful- My 12 Year Old Invacare Arrow Power Chair In Motion!

For research purposes, I just made a video (down below) of how perfectly my "Old Faithful" Invacare Arrow." TT (True Trac), Gearless Brushless motors, with Power Tilt Seating (there is a 2GT sticker on the base-not sure what that means), can manoeuvre and stop perfectly and smoothly when going downhill.

Old faithful when it was new!

Old Faithful definitely in need of new seating, 

but motors and controls work great after all these years.

Yes, I am still loving my brand new Invacare Arrow GT (NOT gearless brushless motors - can't remember the type right now.) My new one is a great chair, seating is better for my back. Like I mentioned before, it takes time to get everything fitted and the settings all programmed to the client's needs. It may be the newness, since mine was so old, the brakes are super super "grabby," when I even release the joystick a teeny weeny bit. So we are trying to figure out why and how to adjust it. It works fine on level surfaces and even up hills. I am sure it is just on of those things and will be all fixed up soon. It is at the shop now getting checked out. The great thing is, I have a reliable chair for back up when the other one needs to be worked on :0)

I don't have a video of the new one in motion, but see how smooth O.F. is!

Watch The Smooth Ride Below

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)

Quickie/Yamaha Xtender Power Assist Wheel Issues- An Update And A Review

The Spoke Saga Continues:
To anyone who was following the Xtender Power Assist Wheel journey, more like a saga, you know all this. If not and/or to refresh memories - details (lots of them) can be found when you click here this search link on our blog or search Xtender Wheels and Sunrise Medical there too.
Since week one or so, even though my husband loved these wheels in principle, because of the freedom he now had to move with great ease, up hills and to ease the stress on his torn rotor cuffs, (a common health issue for chronic wheelchair users). It was so nice to see him happy and free! I use a full power chair so I could totally relate to that sense of freedom! (I can picture Mel Gibson yelling FREEDOM! just before he dies!) okay, maybe not the best illustration, but you get the idea!

Well, instead of repeating all the details, please just check out all the Xtender blog articles here at WWO, most have corresponding videos. All along, I just wanted to video and visually record the sounds and details, hoping to help Sunrise/Quickie/Yamaha (Yamaha still makes the motors as for as we know) to try to figure out what was wrong. It has been outstandingly clear, to us and some others, that the issue is poor spoke layout/installation/design/quality, but they do not seem to want to acknowledge it to us anyway, and correct the installation/design so it won't keep happening. Yes, they replaced the spokes, the wheels....read the links for details. But it is still happening.
We have asked the opinion of spoke experts and it is clear to all of us that where the spokes intersect, the outside row of spokes are almost all, ever so slightly,bent ,because they are pushing so hard against the underneath row of spokes.

My first manual chair- never had broken spokes.

As a wheelchair user, that had spokes for about under 15 years, back when I was younger, never did I have problems Breaking spokes. Yes, I had to tighten them every now and then when I did my wheelchair maintenance, but that was it. Craig himself in over 30 years of wheelchair use, also never had any problem with spokes breaking. Only once when there was an actual recall on a quickie manual chair model. So we know that spokes for daily, regular use, spokes should not just be Breaking. Not at this rate, that is for sure.

It is so frustrating because it seems obvious what is wrong with their design.
Even more frustrating when you're told that no one else Is having the problems that you are ,with the Quickie Xtender power assist wheels. And yet we have heard that others have, including a comment on one of our videos about it. We know he is not alone.

Of course we know normal wear and tear can happen. But this chair didn't even get a chance to undergo normal wear and tear before the clicking and breaking happened and STILL is!

Needless to say, we shared all that was going on from day one. Past experience told me this would be wise. Of course if I had received contact from the manufacturer much sooner, depending on how they handled it, I wouldn't have felt the need to make sure all the negative parts weren't documented. There wouldn't have been a need to.

It was disconcerting because my husband paid a decent amount of money for a very useful mobility aid and we wanted them to work and to last.
He was recommending them from day one. Even when the early troubles began. I told him he should wait, but he believed all would be well and taken care of. He is way more optimistic than me. He was just soooo happy because of how easy it made his life. He deals with chronic pain daily. But because we didn't receive any responses at that time, from Sunrise and the other contact places I tried, lack of trust increased. So I decided to make an attempt reaching Sunrise through the Quickie Twitter contact page. (again, all of this has been documented if you want to see/watch) It worked! It was great to actually have someone answer questions and trying to help us.

They did the best they could by asking the right contacts they had. But clearly, they were limited in what they could do, at times they had to break not so good news to us. Such as, if my husband weighed 250 pounds or more, then the warranty would not count at all. Thankfully, he did not, nor does he weigh that amount. But, the fact that no one even asked Craig or told him prior to his purchase, it was quite a frustration to know that if he happened to weigh that limit, he would have no hope to fix his brand new expensive wheels. Would never have bought them.
Thankfully, he officially proved he was under that number, but nevertheless, just frustrating at hearing surprises like this. Not the Twitter person's fault.

However, after all that, since Sunrise did replace Craig's wheels each time (during the next period- until last spring) the clicking/spoke issue arose (always within a very short time the sound would commence), right up until the third replacement pair - and sadly, even the third pair began clicking with spokes breaking. Didn't take long.

Needless to say, the second I hear clicking from his wheel, my heart and anxiety rises....it has caused a lot of stress and unless something changes, will continue to do so.

At some point in time back then, we received a phone call from a rep from Sunrise who basically

asked me to refrain from blogging/vlogging about what was happening. Saying, they wanted a chance to take care of my husband before I did anymore blogging/vlogging. They seemed rather bothered by the public sharing of our experience.
Because of the nature of this whole blog, I record experiences and want to share our life for a purpose. She seemed to have no regard for the fact that, as I had recorded publicly, that I did try to reach them first, but never heard back, not until the Quickie Twitter contact responded. All very frustrating. Of course, we didn't want to have to share the negative parts of our experience, we had no choice. We felt morally obligated, to be honest, not just so others interested in this product would know, but to get what we paid for, trying to help them have as much information as the manufacturer might need to help.
I tried to refrain as long as I could, but the clicking/spoke issue continued. After the conversation with her, for a while, we did shared that Sunrise was offering good customer service.

Here we are today, one year later (almost).

When he was on his third replacement pair (same clicking/breaking spoke issues) the demo chair he got to use for a bit after the third set acted up. We were so impressed, we took pictures and sent it to

the lady that had called us, saying we were glad to see the improvements. We thought they had figured it out based on his ongoing wheel issues and our postings of recorded noises, that all would be cured. (click here for that article and the comparisons) The photos show how much better quality these spokes were installed, they even looked stronger, they just seemed all round improved. Click that link to see. We were really hoping almost assuming, that since even the 3rd pair of replacement wheels had the exact same issues, they would give him these demo wheels. It would make sense after all he had gone through, and they looked fixed. But sadly, nope. They quickly sent back to him wheel set number two, saying they changed out the motors, nothing else. Motors were obviously, not the problem, not sure why. They never said if there even was a motor issue. It was all spoke issues!

How do we know? Yup, in no time....the spokes began to click indicating a break. Darn! And the spoke overlap/bending issue had not changed at all. And now, here we are almost a year later since the second set were returned back (after going through three sets of wheels and a demo). But sadly, as you can see in the article/video history, just when we hoped all was a go, another spoke or two would break. (Click here, and here and here )

Well, based on a letter Craig just received with a pack of replacement spokes sent to the dealer. No personal direct contact since that period last year. And after seeing this morning, comments and thoughts from some who have inquired about Xtender wheels...I thought it best to write this update.
The long and short of this saga is, In the end, this Xtender experience, didn't conclude with any satisfactory results. Overlapping/outside spokes are still forcing down, causing bending and the heads, not sitting flush and sitting proper. (Not like that demo pair!) Just waiting for the next click, click....

Newest Update:
Last year, originally, Sunrise had sent a pack of 36 spokes (really it works out to 18, because every time the spokes are replaced, we were told they need to take out the over and underlapping spoke

(hence the reason for long and short spokes) because one is bent. We knew that!!
But like I said before, the dealer said while trying to replace the first few broken spokes last year (on I believe wheel set number 3) he said the spokes were breaking as they tried to replace them! So, we assumed they were, as suspected, faulty spokes, so the dealer would return them and Sunrise would replace them.

Just read this first: I am recording from the pertinent parts,

"Dear Craig,

I hope this finds you well, active and enjoying your Quickie products.

The warranty on spokes for the wheels for the quickie Xtender is coverage for one year against manufacturing defects. Last April we sent a set of 36 spokes (18 long 18 short) to your dealer for you. We have now received another request for more spokes since those are all gone.

SIDE NOTE: my husband never even had half of these original 36 spokes put on his

Xtenders. The dealer said he sent them all back! Why don't they know that? There were about maybe five or six spokes replaced somehow, prior to recently receiving this bunch, - even if did send 36 a second time - after the dudd spokes were returned, there still remains half or more of that other spoke set that Craig never saw but do not exist) Why didn't they count the spokes that were breaking as they tried to install them? All too confusing. We feel bad for the dealer in all this. They just want it to all be right too.

Why don't they try to do something about the ongoing spoke issue that could improve the quality and installation design, so the problem would decrease and give that improved set to my husband??

Back to the letter: "no other user of the quickie extender is experiencing this level of breakage with their spokes so we are at a loss to understand why this continues to happen. As a show of support, we are sending one last set of 36 spokes to the dealer to be used as needed on your chair. Once the these are gone, additional replacement spokes will need to be purchased."

This letter actually stirred up anger in my heart. After everything that has happened since day one, they kind of are implying they are doing him a kindness. It is as if they do not know all that has happened and has not been addressed. It was bad enough receiving the phone call from Sunrise's rep last year , expressing her displeasure at my blogging about the topic asking me to stop. (not forever) In noway was I slandering anyone, just being objective, open and honest. But nothing changed with the spoke issue/design/construction....Argh! And he is not the only one who has had this hapen. Why three different sets in a row? All the same issues. Not just one pair.

So sad for my husband to have to deal with this.

The Shocker Is...
When I ask Craig, he STILL totally recommends the Quickie Xtender Power Assist Wheels. Not to

mention, he still loves and supports the Quickie 2 manual chair because he has had not issues with them at all. He is a Quickie devoted fan, if only the Sunrise people would help him with new and "fixed" Xtenders. But, oh well. He and I agree to disagree.

So if you read and watch all the info we have, you can make your own conclusions. My husband is a dear man who deserves to enjoy his life with minimal need of wheelchair repair. But that is out of my hands. I am happy that inspite of all this, he is still a big Xtender fan. He is a bigger "man" than I am.