Wednesday, December 27, 2017

Keeping It Real, Life Share: Sure Hope Gazette: Christians That don't "do" Christmas?

Since Christmas is very much in our lives whether we want it or not, thought it would be appropriate to have a "Keeping It Real, Life Share" and pass on this article we just did from our other blog... just click the link to see.
Sure Hope Gazette: Christians That don't "do" Christmas?: Do you Remember? Chestnuts roasting by an open fire, Jack Frost nipping at your nose (Frankly if there Was a guy gnawing on my nose, I...

Someone reading this might ask, What Do your views on Christmas Have to do with your blog walking way overrated? To that My husband and I would say, Since this Blog is about our life as a whole, What we believe in, What we celebrate Or don't, What we enjoy, What bothers us, Our questions About whatever, Wally like to do for fun, What would like to avoid....All of it Pertains to our life. I know we mostly talk about Topics related to living with a physical disability, But obviously, Our lives are very well-rounded....Ha ha, a joke about our round wheels just came into my mind- Would that be considered a pun? It doesn't hurt that my physical body is actually well-rounded to, Ha ha. Okay enough silliness.

Hope you all have a wonderful 2018. It is so difficult to believe we are Almost there already.
Okay, I can't resist sharing this. so I will post a new article by tonight.... :o)

Saturday, December 23, 2017

Walking Way Overrated: Somebody Dial 9-1-1- Or Don't?

Hi guys! If you've been following this blog/vlog at all, then you know it's been one of the craziest weeks of the year. Anything that wasn't so great, seemed to happen, happened. But then, as always, where are reminded of God's loving care and protection. Because things could've been a lot worse, if we weren't under His protection. Case in point, Watch the video below and you'll know what I mean....

Thanks for stopping by. Hope you all enjoy the holiday time with your friends and family.
the Bergies

Thursday, December 21, 2017

Life Share, Keeping It Real- Ch...Ch....Ch... CHANGES

Hi guys. W.W.O. is about our lives, and here's a big part of our life. Since I have been encouraged by others on the world wide web during trying times, hopefully one person out there may need to hear this. Only God knows.
watch Part 1
watch Part 2

Tuesday, December 5, 2017

DIY Tripod Arm....WORLDS COLLIDE: Walking, Way, Overrated & Heartfully Creating

Walking Way Overrated, Is intended to be a Site Basically about our lives. Can't really call it a blog or a vlog, We pretty much cover A huge Range of topics that Involve our lives somehow. And sometimes we share stuff we find useful, inspiring or just plain fun.

HeArtfully Creating, Is my creativity blog. Can you call it a blog if it has artistic Video tutorials and other things that aren't really blog like?  (check it out here if you want to know what I mean.) Either way H.C. has a definite focus. whereas, W.W.O is more of a collage of our lives.  H.C. is like one piece of that collage.

All that being said, I was having fun today Trying out our new Samsung J3 Galaxy phone. We are actually using our older Galaxy As our mobile phone because we don't have a data plan. Our phone is for emergencies, texting and Craig plays online chess with a dear friend when he's at home.
But since three years have passed and our contract was up a long time ago,  our company offers free phones if you sign a two-year contract. So hey, Why not get a new phone for nothing. We don't like the bigger phones for mobility so we tick to the old one as a phone.
What do you call it if you don't really use it as a phone, but it is a phone? Does anyone else Use their "phone" as a device to do internet stuff and not a phone? It is like having an IPod.

Worlds Collide
Waiting for our new phone case to come from Ebay in China (3-12 weeks?), I had just made a very messy looking phone cover using a hot glue gun technique (look the DIY's on YouTube!).  I could now finally hold the new super slippery, thin, big phone now. It would slip and slide so much, I just kept dropping it. If you are in a pinch and have gripping issues, or don't want to waste mega bucks for a phone shop case, glue gun glue covers work pretty good. Can't wait for my glittery silicone one arrives next year though.

So, wanting to play with our new  device,  I was filming Craig, amazed that a light can shine from the phone when you film if you want! And we thought it was super cool when we discovered an app called "Oxygen Measurement" that takes your blood pressure, oxygen levels, heart rate, hearing and vision test and even psychological measurements! Okay, that is  still the coolest app ever!
That light in Craig's face video is this one:
After I blinded him filming, I wanted to see the difference without the built-in  flashlight.  I got him to show the cool DIY bending/elbow tripod  he just made me from our unused desk lamp. Since HeArtfully Creating is my creativity site, and W.W.O. is our life stuff- worlds felt like they collided. Both blogs could host this video! Now it will be much easier for me to do my polymer clay/creativity tutorials!
Take a look Below
From Desk Lamp To Tripod  

Friday, November 24, 2017

Walking Way Overrated: Anita's Newest Wheelchair Update

Hi guys! Autumn is pretty much gone here in Northwestern, Ontario. Snow lightly covers the ground, and the temperatures are still fluctuating 10-15 degrees- last week minus ten celsius, today plus sevenish and rain sprinkles! Only the Good Lord knows what tomorrow will bring. (That, for those who don't know, was a "Canadian moment!" We talk about the weather daily.

On that note, I am having an "Anita Moment." These days, that is sharing a recent update on my new chair process in live action video. So if you really need a diversion take a watch below.

Sunday, October 29, 2017

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

Monday, October 23, 2017

OUR Sizzling 16th Anniversary: Celebrating Bergie Style

Craig's way to celebrate sixteen years of wedded bliss. How we keep the "sizzle" in our marriage!
watch our short adventure videos below.

watch Part 1-Side Dish Pasta, Broccoli, Mozza Cheese Bake
watch Part 2: Craig's way to celebrate sixteen years of wedded bliss
Heat pan very hot. Add butter and drop well seasoned steak into pan. A sizzle must be heard.
Note: Keep camera farther away-fogged up.
watch Part 3- Prime Rib Steak
watch Part 4- Sizzling Time

watch Part 5- Prime Rib Steak
Tent meat with foil for five minutes

watch Part 6- Is It Cooked?

It all worked out well. We ate too  much as usual!!
Thanks for stopping by!

Sunday, October 15, 2017

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.
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!

Wednesday, October 11, 2017

HeArtfully Creating: STRIKES?? No YouTube Videos For Now....

Hi guys. After three upload attempts  to YouTube, I keep receiving "Community Guidelines" Strikes. Nothing like that has ever happened before so I am trying to be patient while I wait for the results of my appeal. In no way did anything in my faux stained glass tutorial violate YT's guidelines. Based on what I have learned, I re-watched the video and though maybe the computer algorithm thingy mis-heard a word on my video. Some words apparently cause red flags when YouTubers post videos with those words. I don't  understand how they can twist and flag videos like mine, a clearly "safe," one - disrupting all productivity, based on non-human judgments. Oh well, nothing I can do now but wait for them to deal with my appeals.
I will still be posting articles, but for now, they just won't come with the videos that I love making.

Click this link below to see more about this topic.

HeArtfully Creating: STRIKES?? No YouTube Videos For Now....: Hi guys. After three upload attempts  to YouTube, I keep receiving "Community Guidelines" Strikes. Nothing like that has ever ha...

Thursday, October 5, 2017

Unexpected Journey: Back In The Saddle Again!

Yay, just a couple of days since my Braking Question, I  am back in the saddle again! If you are interested in knowing a wee bit about my buying a new wheelchair process, wath the brand NEW Video I made just after our vendor and technician set everything into motion. Three backs and headrests later, we have selected what most likely, will work best for me, 

Wednesday, September 27, 2017

MY New Chair- An Unexpected Journey And A Braking Question

First things first-A BRAKING question
Because I was told That no one else has ever complained about this topic, I just want to start out by asking Any fellow Invacare Storm series Power chair users in Internet land... To answer,, your chair needs to be a new model with 4 POLE Motors.
(My old reliable, 12 year old  Invacare ARROW has gearless Brushless motors which are perfect for down hill for stopping.)

Comment or email

The Question Is?:
When you go down a hill And try To stop Or release your joystick gently to change course heading down any hill, does your chair suddenly stop with a jerking feeling? I don't mean regular stopping. (you want that in a braking system.)  I mean a braking system that is so sensitive, It feels like your brakes are prematurely grabbing our wheels, therefore causing your head and body to jerk suddenly - Actually feeling Quite scary and dangerous. When compared to my older Invacare Arrow, no sudden anything- all smooth.
I'm on my second chair in less than a few months And have had that problem with both of them. No one has offered any solutions and I was even told that no one else has ever complained about this problem.
Since the problem is still there, In the Arrow and now apparently the Torque model (I just found out the model changed)- I thought it would be best to do my own research And put the question out there. I am too nervous to trek outside with it.

I would love to hear from you And your experience. Using The chair from a company that I have loved and supported for decades, I am hoping to find out what is wrong and why the new ones are this way. Something is definitely a askew With this braking system going downhill. Yes my technician tried variations on the adjustment options, but it  is doing the same on the replacement chair as the first. I so want it to all be okay. I can't be the only person.

Please watch the video below, There are some More details About the topic and my journey setting up a new power chair. That may help.

Now On with the show this is it.... 
Here Is The Video
Yes it is been a while since I've shared anything about my new power wheelchair process/journey. Click Here for  the first post about my new chair.
If you follow this blog at all, You will remember All that we had to share regarding Craigs power Assist Xtender Wheels. Feeling that it was best to fulfill our blog mandate by sharing our daily experiences in hope to help anyone in our situation and to document important events.

I've been holding off Sharing where things have really been at. Considering the first day I received the chair was In April 2017, And here I am, It is September 27, 2017 - Sitting in Old Faithful, My 12-year-old Invacare Arrow power chair, with only about one and a half months actually spent in my new chair/s. I figured I had better share where things are at so far. Who knows, maybe I am not  alone or someone wants to know what can happen in this process. Some parts take time as we switch things out, to find out what works best.

This situation has that, but a lot more  exceptional things have occurred, making my process unlike any power chair purchase in my life so far. Worth sharing :o)

The Process Alone
First of all I just want to make sure that anyone seeking specialized power seating like I have, knows it can take a lot of time, quite a process making sure we have all the proper seating, Joysticks, Headrest, Cushions And even The wheelchair itself. I did share that back in May (Click here to see). So I understand that I need to be patient, It is worth it after all. I've been sitting in this chair for 12 years, So for sure I want the next one to be Even more comfortable, If possible.

Please know that these chairs come with multiple components  and therefore multiple companies, make up a whole chair (at least 3-4 that I know of) Invacare is only responsible for the base part of the chair and the controls/joystick. The power tilt part is from Motion Concepts/Invacare- two in one company. And the back is from Future Mobility, and the Headrest I hope to get soon that will work  better comes Sunrise Medical and is a Wedermyer brand.

An unexpected event
Let's see, I have had the new wheelchair in my possession since April 2017 And have actually only been able to use it for a total of about One and a half months,
In Old Faithful years ago
Since then. Unfortunately since day one, The first chair an Invacare Storm series, Arrow, with power tilt seating, was having some difficulties. It had to have its joystick replaced once. The problem continued and my salesperson was concerned. Not to mention, I went on my first down hill walk, only to discover the chair's braking system felt (in my opinion) dangerous. Every time I would let go of my joystick to adjust my chair, the brakes would grab instantly. Yes, they worked....too fast.  It caused my head And such to seriously jerk about.

The Chair I've used for 12 years, (Click this video to see) Can turn on a dime even on a hill. That Chair has something called Gearless brushless motors. Never had a problem with them in 12 years. It was quite a shock to experience such Jarring motions as I try to navigate down a hill. Another reason why the chair needed to be returned.  Very Scary for me!

On A Journey?
"Can't wait to get into my wheelchair today"
The new chair left our home June 19, 2017. I do not know the date it was actually picked up, I am only going by Our dates and times. I am so thankful to the Lord that I have a reliable backup power wheelchair. (it did blow it's first fuse last week, but was quickly repaired- yay.) Again, calling it Old Faithful. In wheelchair years that is, apparently an antique At 12 years old. Anxiously wondering if there was actually something wrong with the original new chair, we waited and we waited...and we waited. I will refrain from every single detail Between when it left and when it returned. But, to date, no answers on if it was faulty or not. Since the new one brakes the same down hill, I guess not. Thankfully the joystick issue is a hundred percent better!

Bottom line, they were going to replace The motor base And I believe the joystick Part. Somewhere in there, it turned out the whole wheelchair went missing. Stories conflicted about whether it happened on the way there or on the way back. I really do struggle when stories get mixed up. It is more about trust for me.
End result, A new chair returned to our home on August 17, 2017.  It was supposed to be the exact same specs as the chair that left here, but a new one. Well, It wasn't the exact same one. There are quite a few things that we're not okay, meaning not the correct parts and such.
As I was putting together the video that goes with this blog today, I saw the photos and discovered the first chair was the Storm Series Arrow model. But the newest is Storm series Torque SP Model. I have no idea why The models were changed
And no one told me. Silly me, I just trusted everything was replaced as It had left. I'll have to do some research to find out. Invacare does have a variety of models that have various different features, For various different purposes.  I  have been trying to reach  my salesperson to ask them about that. They may not even know what happened. Stay tuned folks. 
Note About Specialty Seating Chairs 
 Please note, that specialty power chairs,  involve multiple companies. It is important to point out that they are comprised of Multiple components. Multiple components come from multiple companies. So in no way am I blaming any specific company.

Power Tilt Has Many Perks
On August 30, 2017, my chair with the correct components was returned. The only thing that was accidentally incorrect, was the new back to the chair that needed to be shorter. Turned out a couple days later, someone came to alter that back for me  and some of the hardware stripped, unable to be adjusted properly. We found out that the company offers heavy duty hardware. I was shocked. Why wouldn't they   always provide the best hardware for all their components. Needless to say they ordered the heavy-duty hardware. Still waiting.

That is why I am in Old Faithful For now. Today is September 27 2017, And I anxiously await the new back, in a new style, at the right height. And the new,
Old Faithful....
Wider, Softer head rest pad, with new brackets. I was at the point of trying my second headrest, and it was still too hard for my big lumpy head. Not to mention, a teenie silly screw - Part of the headrest bracket, also got stripped, unable to tighten (after only 3 days!!)  Comes from the same company as the back. If you order from them ask about the hardware. Hopefully they will use the strongest  in all parts.
Needless to say, I am getting the next headrest from the company that the salesperson recommended.

I think this is called ironic. Remember old faithful? The chair I sit in right now Has a 12-year-old headrest From the very same company That made the back and headrest I was just talking about. I never had a problem with any of it. Just a curiosity...Have they been using Hardware that isn't as strong as they once did? All of us consumers know that many things these days, Seems to be made with inferior Materials, Which means we need to replace them more often. Not saying this company is doing that at all. But in light of how good My 12-year-old headrest is from the same company, Just makes you think.

A Blessing in disguise
I do look at all of the things we have discovered wrong, as a blessing. Even though it means I'm still not sitting in my new chair. If we did not discover the problems, I could've very well have been stuck with that chair and it would no longer be under warranty. Actually from what my salesperson told to me, because we're still setting up different things like which back or headrest to use, the warranty won't even begin until everything is all in place. That was what I was told anyway. I trust it is true. Of course, it is always wise consumerism to get everything In written form, To avoid any mistakes or misunderstandings.

Advice to anyone seeking a new Tilting Power chair
I can only speak as a consumer in Ontario Canada. My advice to anyone Seeking a new Wheelchair  Is, do your research. Don't just rely on the dealer or vendor To
Before My Power Chair
pick out the chair and all the components. Especially if you've been using one for over 30 years like me. If you are a brand-new user, Then still do your research,  but find a vendor your trust.

In Ontario We don't actually have a choice of vendors, Because Specialized Power seating/Power chairs Like mine, Are provided Through our government by a contract they make with one vendor in the province. Which means there is something called the central equipment pool. So if you're on ADP, The assistive devices program,  like I am, Sorry, You can't choose the vendor. Thankfully we have someone that we have trusted for over 20 years as our's- Even though the original company changed hands, many of the salespeople remained.
If you don't have to stick to those rules, Then ask around, Find a vendor you can trust in your city or town.

Finding What Is Best for you
Regarding the research stuff, I am specifically talking about the components and type of wheelchair. I feel rather foolish that I didn't do that because I didn't think
So far my best headrest
there were any other options. Based on past experiences, The parts and that, would be selected And I just assumed I had to accept it the way it was. Turns out it isn't true. The government And the vendor, as well as the physical therapist and occupational therapist that do the seating assessments -  all want to make sure that you get the Best seating suited for your situation. You probably already know that bad seating in a wheelchair can cause secondary disabilities like severe scoliosis. I say that as someone who has had severe scoliosis Since I was 13. Search is the experts and recommendations,  If you're new to the game.

There are lots of options Available. The salesperson just Does  the best They can And they tend to work with what's familiar to them. It is one of the reasons why it is now taking a bit longer To get my chair process Completed. Turns out I'm able to get a Larger head rest pad And different brackets. Well it turns out I can also try other backs for my wheelchair Until I find the right one. Of course I hope the next one We try, will be it. A part of me feels bad because My salesperson selected what they felt was best, But now that I discovered their options I couldn't choose from- I am waiting a bit longerTo get those new parts To try Out. My goal is that they will beekeepers In this process can soon come to an end. I am sure my salesperson Desire is the same thing I do.

Follow up clinic
In November, A follow-up Seating clinic has already been arranged. The original occupational therapist called me about a month ago to ask how everything was going to regarding my new chair. It was very encouraging To hear That I don't just have to settle for whatever is given to me. They keep working at It, No matter what it takes. Of course, I am not in denial, And realize nothing can be absolutely perfect. So I am okay with compromise, If it works well enough. Like There is My advice, Don't feel bad contacting your salesperson. Remember, The wheelchair is not free, and as nice as a maybe, they are doing their job. Setting you up with the wheelchair that works for you. They won't know what is wrong if you do not tell them. Give them a chance to correct what is right. Please don't be like my husband And settle for things That came on his chair- Yes don't work for him. And now it's too late to change them out without paying for it. :o)
Thanks for stopping by!
I said, I just feel bad Bothering my salesperson all the time.

Monday, September 11, 2017

Craig's Newest Love: Come And Find Out Why

Yes Craig has a new love. Of course he always says his only loves are me And our Lord Jesus Christ. However, In recent weeks, Something entered his life That is changed him in ways I never imagined. Jealousy knocks on my door, But I refuse to let it in, especially because I can completely understand why. Over the course of my life, My dear mom has given me two of these devices, understandably, because she thought they would help my life. Unfortunately in my situation, you need two well functioning hands to make one work. My life wasn't complete, But I got bye :o)

If any of you out there have osteoarthritis Or any other kind of hand pain, You too will completely understand why my husband has a new love. It has been difficult seeing how much pain he is in, just completing simple tasks like opening jars or cans. Then one day our last manual can opener croaked again. Trying to figure out what to do, I became like my mom - That happens more often than you think- Thanks Mom! What could help my husband, even just a tiny bit? One of those electric can openers that mom used to try to give me!
On to Amazon I went. Never owning one before,  I asked Craig his opinion. Turns out he had one before, back when he was a bachelor. So it was time For him to have one again.

Below Is a fun And mildly informative video, About why An electric can opener may make your life easier. Hope you enjoy.

Please like -share and subscribe, If you want to of course.

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)