Monday, July 24, 2017

Inspirational Video Share: Meet Dandy, Healed Either Way!

Spinraza Thoughts So Far...
I know I said I was going to share some information about the new treatment, first ever treatment that is for persons living with SMA (Spinal Muscular Atrophy), like me! It is not available in Canada yet, but it is in the USA. My reservations about celebrating this treatment still stand because I have yet to confirm that the process is ethical. My heart goes out to the little ones who seem to be benefitting from Spinraza. Yet, I remain reserved. Not sure why, I just really need to know and understand more. 
Cured In A Body With ALS 
On that note, I want to share an inspiring video about a man named Dandy who lives with Amyotrophic Lateral Sclerosis (ALS). ALS is a cousin of SMA but to date as far as I know of, this disease attacks people in adulthood and tears down the entire body's muscles within 2-5 years. The coolest thing of all, inspite of the rapid progression of the ALS, Dandy considers himself already healed. Yes, his muscles do not work, he needs assistance breathing and eating with a G-tube, and assistance with all aspects of daily living. His speech is affected as well and as ALS rages on, unless a cure or miracle happen, he will lose all speech and eventually his physical life on earth. But he knows where his real hope comes from. Take a watch and see why Dandy considers himself healed, when the world would disagree. I want to add that I concur with this inspiring man's viewpoint.

Wednesday, July 19, 2017

The Most Expensive Medical Treatment Ever! The First Ever Treatment For Spinal Muscular Atrophy!

Today, I learned about a new first ever, actual treatment for people with Spinal Muscular Atrophy called Spinraza. Having no clue about this incredible news, I never dreamed I would live to see the day that there would be any helpful treatments. Never been concerned about being cured or helped my self, but
Me, Anita 1967.
definitely prayed for help for friends and all the young ones battling SMA. There are three types, Type 1, 2, and 3 as well as adult onset. I, Anita, have type three and am now fifty-one. My arms can no longer leave my side, but I am blessed with still being able to  use my right hand well, swallow food and beverages, as well as breathe on my own. My life is a gift from God enhanced by a wonderful husband, friends and family - not to mention lovely Personal Care Attendants who are my "arms and legs," to assist me with all aspects of daily living.

As I research this new treatment, trying to answer a question a researcher asked me on the phone today: Would I be interested in trying the treatment if offered? I "met some inspiring folks of all ages on YouTube, fellow SMA'ers I like to say. I want to you guys to meet them too....

As soon as I know more, I will be posting more about this new treatment that was approved in the USA by the FDA in December 2016 and maybe soon in Canada (my homeland.) 

Now meet just a few of the many wonderful people whom I am honoured to call fellow SMA'ers, my peers.

Meet My Fellow SMA'ers
Meet Maija

Meet DeAnn

Meet Evie

More Wee Ones
Meet Michael

Thursday, July 13, 2017

Watch Now! My Hero Joni Eareckson Tada - Live on Facebook!

Check out one of my biggest heroes, Joni Eareckson Tada LIVE at 11am EST. She is celebrating fifty years of using a wheelchair! They are re-releasing her great bio pic called JONI! She plays herself and it is one of my most favourite movies ever! It is special because she plays herself at the time of her diving accident in 1967.
Meet Joni- click here to the Facebook page. 
And click here to go to Joni and Friends.

Thursday, June 22, 2017

YouTube Channel Recommendation: Love The "Able Family Life!" - Take a Watch and Smile

We have recently discovered a really great channel called the "Able Family Life." Dad was uses a chair for legs because he received a spinal cord injury at work. We love that they to simply live life and clearly know that Walking Is Way Overrated and life is great sitting or standing. So great!
Their channel not only helps to create awareness and understanding about every day life using a wheelchair and every day family life, but we get to enjoy the entire family having fun together. They make us smile and we are sure they will make you smile too!
Enjoy! And don't forget to Subscribe to their channel!

My Disability Story - Told By Lego People
Hand Controls

Wheelchair Playground Challenge
Wheelchair Basketball Challenge

Road Trip

Wheelchair Mowing ?

Tuesday, June 20, 2017

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

Monday, June 12, 2017

Help Me To Know More About: Epilepsy,Convulsions, Or Seizures - Administering First Response Care

You decades ago back when I was younger, A Family member worked Under a manager who has epilepsy. I remember because they express their fears and concerns Regarding Their manager having a seizure. What I remember the most was Being concerned That this person was being misunderstood. As someone who grew up with a physical disability, my number one goal always was education and awareness. It just seemed that maybe these employees would not be so afraid if they understood more about epilepsy.  Most of all, what was best to help her if and when she had a seizure event.
Then years later I had a friend who had epilepsy since childhood. I didn't get to meet him until his 20s, he was friend's boyfriend. His situation was extremely unique, with other issues.  Sadly after entering the hospital due to seizure issues, The day before he was about to come home, he passed away because of a blood clot to his lung.  
And then there is the closest person in my heart, who battled convulsions when she was teeny. For some reason I always thought convulsions were different than seizures. Based on the research I did today, It appears they are pretty closely linked. Probably might be why they had an official seizure in their teen years. With no diagnosis of epilepsy to date.
There've been other friends would've had seizures, not that I've witnessed many, mostly the Petite Mal or Absent type
Why bring this topic up today?
Just today my husband watched a friend suddenly fall to our floor. This person has no history of epilepsy at all. He did not have any idea what was happening and it bothered him greatly because he didn't know what to do to help them. Thankfully it did not last more than a minute and it looks like our friend will be okay. 
But, it was a wake up call for us, to heed the need for awareness for instances like this. Heaven forbid, it would happen again. To learn about,
what a seizure may be and what to do to best help the person at that moment, until medical attention can be obtained. Or even whether or not you should get medical attention.

And based today's research, it turns out, I need to learn more because I just discovered that what I took in a First Aid course decades ago, has invalid information. People who have seizures cannot choke on their tongue, Contrary to what we were talking first aid class.  
A very good reason why It is important to keep up to date with First Aid. So first of all I want to share a couple of First Aid and Responder Care videos and  then after, meet some folks that I have learned from, thanks to their YouTube Videos.....

Symptoms Of A Seizure And What To Do

Basic First Aid
Responding To Seizures: Comfort And First Aid
Responding To Seizures: Rescue Therapies: Overview And Devices 

Epilepsy In Our Own Words
Absence Seizures

Seizure video comment response 1
Seizure video comment response 2
Seizure Safety

Sunday, June 11, 2017

Living Independently At Any Age

Hi guys! Hope you are all having a great weekend! I just want to share this with anyone who wants to
know about Self Directed Care or about being a "Self Manager" of your own personal care attendants or Personal Care Assistants. For about twenty years I have been blessed with being able to hire and
Illustration of me,  by me :o), Anita Harris Berglund
manage my own, thanks to the program in the video below about the program in Ontario, Canada.
Click here to see a previous article about my personal experience hiring and managing my own care.

There are programs available in some countries that have such services to enable independent living. It is perfect for those of us who want to have a say in who enters our home to provide care and assistance and who do not mind carrying out the administrative aspects. In fact to be a self manager under the Ontario D/F program, the applicant must be able to recruit, hire, train and administrate their own employees.

Watch Below: Direct Funding - Ontario, Canada

Prior to hiring my own PCAs, I was enabled to live independently in an S.S.L.U. apartment building for eleven years. That may be an option for you or someone you care about. Support Service Living Unit means, there were on site 24hour PCAs. When I needed a hand, I just phoned. Emergencies
were answered to with a paging system. Now it means possibly waiting because they work for all who require their assistance. It worked adequately early on. I was thankful to be able to live on my own. Only trouble, not all PCAs are kind, caring, respectful and compassionate. But if you needed a hand say to go to the washroom, and someone who may cause discomfort or uneasiness is working, you have to press through it or hold "it" in. And that isn't good for your body.  Until the Ministry of Health developed Direct Funding, it was my only way to live alone.

There are people who have insurance settlements from accidents and such or plans that enable them to hire and manage their own care. In Canada we can receive tax credits/deductions for any funds used to hire someone to assist with daily living.

Then in many places as in Ontario, there are agencies that offer homecare assistance. You may not get to choose or even know who will be coming into your bedroom in the morning to help you up, but, it is better than being stuck in a hospital. We have met friends who had to live in a hospital for a year or two after rehabilitation from an injury or life altering illness, waiting for a wheelchair accessible apartment/home.

The Aging Population and Independent Living
Because of the Baby Boomer population, there is a high population of dear citizens who are entering stages of life when they require more physical assistance. Without assistance, it may be too dangerous or just physically impossible to live alone. Many of us have spouses and family/friends who lend a loving hand to enable aging and residing our home. However some do not and they want to live out their life in their own home and not a home for the aged.
What is Available for Me?
 If you are getting older, like my husband. Our Province (an maybe where you reside) does have
There're always dear little friends 

who lend a hand!
agencies that provide in home care services. CCAC, Community Care Access is the one stop "Shopping" for receiving assistance. If you aren't sure, Please check with your family Doctor what options are available.
My Mom just informed us that we apparently can call Red Cross to have volunteers come to shovel our snow for seniors. We will be calling to check on that service.
What If I Need Nursing Care?
If you require care that only can be administered by a medical facility than please follow your physician's care plan for you. However, if you are able to have you health issues managed at home,  there are places where in home nurses are available. Depending on your preferences and needs. Personally, if I had healthcare needs such as medication administered or a wound cleaned and dressed,  I would simply train my own PCAs to provide that care. However exercising discretion and wisdom to seek out medical professionals if my situation had no other choice.

If you have any questions please comment below or email us at
Hope this was helpful :o)

Friday, June 9, 2017

Walking Way Overrated: Trimming The Verge. Sitting Down

Watch and see how Craig trims down overgrown 
grass sitting down! Stay tuned to see a precarious 
scary moment too!
Watch Him Below...

Thanks for stopping by!

Thursday, May 25, 2017

Stormy Weather: Sights And Sounds Of Our Wonderful Non Winter Storms

To watch the video, click the image down below...
After sharing the incredible ice storm of 2017th, Airway is impossible to ignore the footage that I've been able to capture over the last few years. My absolute favorite of course, are thunderstorms! The video posted below contains sound effects and all. There are couple surprises besides the thunder, so watch dollar way through and enjoy! Listening to thunder and rain, Is one of my favoritist of sounds!
Watch Stormy Weather Below

Dangerous Yet Beautiful Weather: Insta Freeze!: Ice Storm Of April 2017

In many countries when we think of April, we think tulips, lilacs, budding leaves, young hatchlings, baby critters, and most of all, for us up here in the north anyway, no more Ice and snow! Well, not this year! We awoke one fine morning to "iceland!" It was amazing to see our van and flower box edges coated in about a half inch or more of ice! As if the rain froze as soon as it hit the surface. Very unique and beautiful. Beautiful, yet treacherous. School was cancelled for two days, along with many other events and businesses. Vehicles were in ditches every where.

There's more, but you will have to check out the video I made below. Did the best I could to capture the beauty of it all. 
Watch Below:

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)

Thursday, May 4, 2017

Drum Roll Please....Yay, My New Power Wheelchair Is In Da House!

:o) My very first four -wheeled 
mobility device! 
Woo hoo! After more than twelve years of my first power wheelchair that has a power tilting seat, (Meaning I can tilt it back) I finally am testing out my new one.
Perhaps because I don't walk/drive around town like I once did, my oldest power chair ever, has served me well and even still works.

Support Matters?
But, it isn't just about the motors still working, as I have come to learn the hard way. Because I have severe scoliosis (about an 80 degree curve), living with a very unique spine that looks like
My first manual wheelchair
the letter "S"in an x-ray. The back portion of my chair (Meaning, the back of the chair designed to support me in all those right places, like a good bra is supposed to, ha ha.) literally, has begun falling apart. I just improvised, filling in the gaps and adjusting the foam inserts. No clue as to how deleterious the lack of proper support could be. Last year my physician confirmed, what I had suspected, that curvature in my spine has worsened. Not something you want to have happen. 
Proper supportive seating and cushions are really critical for anyone who sits for a living. In fact, persons unable to have proper seating in their wheelchair and even folks who sit in an office chair all day long - can end up developing a secondary disability, like scoliosis or other spine and skeletal, even skin issues. So please take how you sit seriously!

 For me, improvising  extra foam inserts here and there, always feeling uncomfortable and struggling with increased aches meant, time to get a new chair. Besides, the whole system more than doubled its life expectancy (our government permits us to get 75% coverage for a new chair every five years.),  may be a bit noisier, but they're still doing what they're supposed to. 
My second Manual Wheelchair
And a testimony To Invacare's great Customer Service and to the "Arrow/Storm" series power wheelchair. Needless to say, there was no question, this was the brand and model, to stick with. (No, In no way Is Invacare's sponsoring any of this - This is not a product placement plug- just A testimony from happy customer) 
A Brief History Of Power
My first manual chair was used back in the early/mid 70s. Once the Spinal Muscular Atrophy weakened my upper body, pushing those rims down long hallways and outdoors became too difficult and eventually, impossible. My first power chair was this one, about grade eleven.
Love my dear Grandpa and here is
Power chair number 2
And I'm pretty sure that Invacare made this one. As far as I am concerned, it has been the only brand of power chair I have ever used. I apologize if they didn't exist until later, Then I have that
wrong. The blue one below is the third chair, the one that is either the one that was the lemon or, it is the one that replaced the lemon, thanks to Invacare's great customer.
My third power chair- no tilt seating. I Love Randi  and I love the colour of that old chair.
Sorry for the fashion offence.
I was in transition. This was fitting #1
After fitting number one here, we tried out one back style for support but it wasn't for me. Yesterday I got to try a new back for my wonky spine and yay, so far I have never felt more supported than ever before. For someone with a large "S" curve, I feel like I am sitting straight, almost. It is so great! 

To be sure, the wonderful vendor Motion Specialty, is letting me test it out. Makes sense because you can't really know a seating method until you try it for more than a day.

Wanted to share the great news! Any questions on new chairs or seating? Feel free to write them below or email
Testing the first back. A great concept but not for me.
Detail pics of my new chair!

Tuesday, April 4, 2017

A Change Of View: Our Bittersweet Xtender Wheels Experience

Okay, was hoping to not write anymore about my husband's Power assist wheels. If you've been following this blog and the coordinated YouTube videos, you too may be tired of hearing about His Quickie Xtender Wheels - the not so good part. At the same time if you are someone who is seeking power assist wheels for your manual wheelchair, you will want to know about what we have discovered since we purchased these wheels to help you know one person's experience, so far any way.
Just yesterday Craig my husband, decided to go talk to some experts about spokes. As you can see it in the last entry about these wheels, he does have a handful of spokes that the manufacturer, Sunrise medical provided. (click here to see the details) . It was then Craig received a letter we assume that came
You can see at about 12 o'clock where the broken spoke is. The head is missing. This is from a while ago. But it keeps happening, we will find out when are dealer replaces the latest broken spokes. Thankfully the technician has been marking inside the wheel where the spokes are being replaced.  Pretty sure he will confirm that the same spokes keep breaking or at least in the same vicinity. This means there is an actual reason not just general wear and tear. Again, since it has been happening since day one and all three sets of wheels, there's no way this is because of General wear and tear.
with the spokes, about how he would have to now replace his own spokes, at his own expense. We want to make sure that it is clear, that we totally understand that parts of a wheelchair wear out. Personally, spokes for both of us have never been an issue. However, there is no doubt based on researching with friends, that Power assist wheels with spokes not just made by Sunrise medical, can have have spoke break more than any regular spoked wheel.   
These where demonstrator wheels that Craig borrowed during the third set of wheels Tapping and having the same problems within a week or so. Noticing a difference in the Quality of the spokes and how they were sitting in and tight. We took a lot of pictures because for some reason, the spoke installation looked a lot neater. You can see it when you look around the hub and compare the photos about with these ones. If you're interested that is.

They also looked stronger and we're not intersecting in vending the same way because all of the other wheels. At the time we foolishly thought that they had taken the conclusions drawn from the problems he was having and fixed the wheels. We actually thought he was going to get to keep the new and improved model. That was when they returned  set number two back. Same spokes, same problems. Sigh!

These are the wheels that came with his new quickie wheelchair. The spokes do  not press against each other. Unfortunately these wheels don't have motors, so as Nice as they look-they're in a closet for emergency backup.
In this case or model, we have concluded that how the spokes are laced or installed are one of the main causes of the ongoing issue. Laced is a new word we recently learned about spokes. To thread the spokes into the appropriate holes so that they can contact and screw into the rim of the wheel, is called to lace the spokes or lacing the spokes. Cool huh!
 Oh and yes the area that the threaded part of the spokes screw into, (just look at the rim of your bike or wheelchair tire rim to see)  is called the nipple. An odd term, but the proper term. All I can think about it baby bottles, ha ha.
Spoke Quality
So Craig spoke, pardon the pun, to a bicycle shop yesterday. Initially since his wheels are no longer under warranty, we were hoping they could replace another
They really are great wheels when 

we don't have to worry about broken spokes. 
three broken spokes using the ones Sunrise provided. Turns out the bike shop can't, because of the specialty hubs and all that fun stuff. Our dealer is great but busy. We were hoping to spare them from having to do it again. The rate of breakage is about one or two month, since it is ongoing and we hate to have to keep bothering them about it. Even though it isn't my husband's fault, it isn't the dealer's either.
However, he was able to get good advice from this spoke expert. He informed Craig that the spokes he had were not good quality- that they were made in China. Apparently the best spokes come from Switzerland.
As well, this fellow and the motorcycle shop he stopped into next, (a biker who also is a spoke expert) also agreed about spokes origin and quality and about Switzerland.
And, he too agreed that it was the torque on the wheels from the motors, made by Yamaha, helping to cause the breakages. That is just one other reason. In our opinion (and we will keep investigating), the whole overlapping, with bending pressure and yes, maybe the quality are the main reasons he has had issues with spokes since month one.
 Oh and yes, I forgot to mention, since the last spoke post, whena couple were replaced, three more broken spokes! And yes, as we shared a long time ago, the same spokes in the same general area and that same outer row, keep breaking- only 2-3, never more.
Just go see this blog for that whole explanation (click here). We believe that even if Switzerland's spokes are as strong as what,  titanium? That spokes from China would be fine perhaps, if the design/ layout was better. If it was quality, then why doesn't any other spokes break?

But, when you look at those wheel spokes and see how they bend ever so slightly where they intersect, no spokes should be bending at all. It is only 1, 2 or three on the outer row. And actually if you look at the hub/Spoke pictures you can see that there are overlapping spokes on each half of the wheel hub. So even the underside of the wheel (the part that faces underneath Craig's seat) has overlapping spokes as well, yet zero of them have broken ever, so far.

It is just been so frustrating that the company that makes the wheels doesn't see the design flaw or at least talk to Craig about it. It only makes sense that the problem is the way the spokes are laced. That outer row in most of the spokes, are pressing too hard on the intersecting spoke. Okay, I will stop analyzing the spokes.

Craig's Change of Heart
Again, if you have been following this saga, you will know that Craig and I have agreed to disagree on recommending these wheels. No doubt, we both concur that when the spokes are intact, they're wonderful for Craig's shoulders and mobility. They are a wonderful assistive device. He can even get up hills that he couldn't before. So of course we would recommend them wholeheartedly, Power assist wheels for anyone in need of them.
But, since Craig has patiently waited and endured this repetitive problem with no contact since last year (other than the recent letter"Cutting him off" spoke replacement last month) to try to resolve the problem, even he can now no longer recommend the Xtender wheels with a clear conscience, to anyone, at this point. Of course, if the company would address the actual issue, making the proper changes to help the spoke layout work better and perhaps even provide the strongest spokes possible if that is part of the reason, then he would happily change his mind.
Not to mention acknowledging that even though they told him, he is the only one to have ongoing spoke breakage, he is not. Why must they say that when it is not the case? Disappointing.

But for now, I thought it important to share that even Craig, one of the biggest quickie Xtender power assist wheel endorsers - even through hard times, MAINTAINING A POSITIVE attitude about it all, can no longer recommend them based on the overall experience and where things are at right now. He even recommended them so enthusiastically in the beginning, that he knows of one or two folks who actually bought them!

Wanting my husband to get better care from the manufacturer, I do what I do, which is writing letters, documenting information by keeping blogs and making videos - in attempt to provide information to the people having similar problems (as one YouTube Commenter told us), researching specific products and issues,  as well as, being a resource, providing information for the company to help them improve their products and yes, ultimately to help my husband to hopefully have the best experience he can with their product.

Below I'm attaching a letter that I'm sending to wherever I can find addresses for Sunrise, as one last attempt at trying to get the company to listen and at least consider making the needed changes so that the wheels will be all that they were meant to be and to hopefully at least take Craig's experience seriously.

He keeps getting told that spokes break and they need to be replaced. But they keep forgetting, that spokes  even breaking since month number one, not just in one pair of wheels, but in all three - is not wear and tear.
What do you do for a customer who buys a product that obviously has some issue in part of it's design based on what is happening all along, but then later after the warranties over, they tell you basically, sorry, you are on your own. What are we to do? This is the best I can come up with.

Enough venting. Thanks for stopping by. Hope this helps someone. 

The letter I'm sending is attached below. Many of the sites need the letter to be under 500 characters, so I'm sending it through this method. Feel free to read it if you want. Obviously our experience has been a very public one, hoping to help others as well as the company.

Have a great day!
The Letter 
 Hello. I am not sure where to go, so I am planning on sharing this letter with blog/video links to my husband's ongoing troubles with Quickie Xtender wheels from Sunrise Medical, to wherever I can find a contact, who hopefully can provide answers. We have known what Sunrise's mission and values are as read here:
We live in Canada and have appeared to have exasperated our Sunrise Medical division because in the end, my husband was not treated the way this site states.

Leary about contacting our country's division, based on the not so great overall experience we had when being contacted last year by their representative and how it has concluded, I am trying everywhere I can. (Please know our vendor has done the best they can- it is out of their hands) In fact, it took a lot to finally get that someone from Sunrise Canada to reach us last year.

I am hoping and praying that there is someone, somewhere at Quickie or Sunrise somewhere, who can contact us about the bittersweet experience my husband has had regarding his Xtender wheels and help my husband instead of Canada's Sunrise putting a proverbially bandaid on a big wound - by just sending and now- no longer sending, replacement spokes. If this is not the place to send this, then please pass this on to anyone who may help.

Yes, his wheels are no longer under warranty, but since month one, he has never been without the broken spoke issue. A very specific issue. Of course we are aware that spokes and such wear and we must cover the cost, but what about if the trouble was never dealt with at all - other than sending some spare spokes (that just keep breaking). Now leaving him with no solutions at all and now not even spoke replacement coverage.  What is the story?....

We know why they are breaking, but nothing has ever been listened to or changed to correct the problem. Now having  Sunrise recently send a letter to him via our vendor, with no concern for this never ending issue,  inform him, that they will no longer provide the spoke replacements and offering no answers or solutions to the very original problem that began from basically month one, he can no longer, with a clear conscience, recommend these wheels. Personally, it is as if they just sent a package of spokes to appease him, and after enough time lapsed, they ceased all "care" for his situation. Maybe not true, but that is how it feels after all this time.

Here are more details about all that has happened from the beginning:

We documented everything and  later trusted they would fix the reason.  It has never been his fault so why has he been stuck with a product that just does not work right - but could if the company would see what is really happening and correct it?
Why did Sunrise replace his wheels three times in the beginning (only after we publicly shared information ) and then return the second set, with no changes to stop the ongoing problem? It was never the motors, it has always been the spokes. The outer row of spokes to be specific. NO OTHER ONES ever break! We covered all that in our videos and blogs to help them see.

As stated in the collection of blogs and videos we made to initially document, what was happening- we were hoping to record the sounds and details to make information available to Sunrise and Quickie to hopefully help solve the problem, the issue has not been satisfactorily dealt with.

Why is Sunrise not providing the best spoke layout possible or redesigning the layout so the out spokes are no longer bending where they intersect? Why isn't Sunrise getting the best quality spokes from Switzerland instead of China. Desperate to seek out experts on spokes, now that he is no longer under warranty- he consulted with two spoke experts not our dealer. Both men told him that the spokes he has are made in China and are substandard to the best kind, made in Switzerland.  They can not help my husband anyway because of the hub on his wheels.
But it was an eye opener to confirm what we already feared. Not just a spoke layout that needs to be redesigned to help avoid so much breakage, but spokes (like our dealer said a year or so ago, the spokes just kept breaking)

So without changing the spoke quality and the way they are laced/installed - replacing spokes or not, does not solve the problem anyway.

Final note: We do not understand why my husband was told that no one else has had breaking spoke issues from basically day one, when that is not true. We were told by a technician that he is not the only person with this issue. As well, on one of our videos on YouTube about the issue we were told by an Xtender customer that their wheels were replaced because of the spokes! Clearly he is not the only one with this issue.
And the reasons make sense!

Things have not improved and the spoke design/layout and or quality remains unchanged.

I am sorry, but I am disheartened by what appears to be a lack of concern for my for my husband's wheels. He deserves to be taken care of like the rep told us he would be last year. Not to mention, I too trusted that Sunrise would take care of him...

Thank you for your time.

Monday, March 27, 2017

CHAIR MATTERS: Finding A Hole In A ROHO Wheelchair Cushion

You have to watch this video to see how Craig finds and repairs the leaks in his ROHO air cushion. It may even help people find tire tube leaks  for bicycles too.
Thanks for watching!

Friday, March 17, 2017

UPDATED: Curiosities: Strange sky sounds In Ontario, Canada.

UPDATE March 18, 2017
Thought it would be best to share some video compilations from other YouTube channels that capture the "trumpetish" sounds that we heard.  It is why the sound got our attention. Because we have NEVER hear it ourselves in real life until that day, But had been researching the subject on the net.
Source videos are at the bottom of the page.

 Hello everyone! Well I guess whoever is reading this, Hello. Ever hear of the term "strange sky noises?" It may seem like a really bizarre Post, five or six years ago I would've concurred. My husband and I, like researching current events, conspiracy theories/ facts, and various curiosities that arise on the World Wide Web, especially YouTube. No doubt, there are some very strange things out here, but we know not everyone could be making these things up.

In fact, in our city on March 11 2017, it happened... We heard it for ourselves. With the doors shut and windows closed, still a little too cool in northwestern Ontario, there were some familiar sounds coming from outside. I grab the camera to try and record the audio part and that is what the video below is about. We live on Lake superior, well our city is on the lake shore. In fact we are referred to as the lakehead. Because we have watched/listen to, a lot of YouTube videos Sharing that recorded strange Skype noises, the sound was very familiar.  not because it was a freighter, Tanker or a train horn - my husband has lived here his entire life I knows although sounds. It was very familiar because listening to News stories and people videos that they have posted over the last five years.

Here it is if you're curious.

If anyone has any idea or answers as to what I sound like that could be, please leave comments under the YouTube video. This is a family friendly log and channel, so please keep that in mind.
What is very strange, is the sounds was so loud that we could hear it, like I said, with everything close in our home. And yet, at both times when it occurred for about maybe two minutes or so, the audio that was recorded shows up in the sound waves on the movie maker program and yet, and some places I had to delete the video because to listen with your ears reveals no sound really at all. That is why the videos are edited to just when the sound can be heard Best. It is why I copied and pasted the two events a few times. Like I said, Google the subject strange sky noises, and you will hear a familiar sound. Very curious indeed. We trust God knows what all this is about. Maybe it is just some Bucket on a front end loader  scraping the asphalt somewhere? Kind of hope so :o)

Thanks for stopping by!

Here is One Of Our Favourite Guys To Watch and Listen To: L. A. Marzulli About Strange Sky Noises

Video/Audio Compilations.
There are so many videos on this topic, I just want to share these two for now. Viewer discretion is advised- unfortunately sometimes those recording are cussing. In This video the same sounds we heard can be heard aabout the 3 minute: 44 second mark:

Below the Same Sounds we heard are at about the 3:30 mark. Strongly suggest watching the entire video though.

Below: This on Is From Dubai (again same sound/tone)

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.