Sunday, December 18, 2016

Friday, December 16, 2016

Part 2: View From Above : A Canadian's Rant About The USA 2016 Election

Here is the second part of our newest video...          Couldn't contain it anymore. Here's part one of some thoughts, okay, a rant from This Canadian about what has happened since he USA's 2016 Election. 








Thursday, December 15, 2016

View From Above : A Canadian's Rant About The USA 2016 Election

Couldn't contain it anymore. Here's part one of some thoughts, okay, a rant from This Canadian about what has happened since he USA's 2016 Election. 
Democracy Means what? View From Above in Canada...
http://walkingwayoverrated.blogspot.ca/2016/12/view-from-above-rant-pt-1-usa-election.html

LINKS TO Sites and Articles That We have watched and feel are respectable and credible resources (so far.), including sites we find interesting and informative, honouring to God. , dealing with topics we find interesting.

Skywatch TV

Next News Network (Gary Franchi)

Round Saturn's Eye (David Bass)

Puritan Pictures

Face Like The Sun (Gonz Shimura)

Pastor Paul Begley

Pastor Mike Hoggard

Mark Dice (Viewer Discretion is advised)

Infowars - Alex Jones

Comments? Thoughts? Insight? 


Monday, December 5, 2016

LOVE MESSAGES From The Kitchen...

Food Is Love?!
A phrase I have heard for years. In fact I know there have  been times when I knew that giving someone I love food they enjoy, would make them smile. Proof for me was the day mentioned in our most recent video below....And if you want a great "Dad's Cookie" Recipe and a Healthier version, just press pause when the one you want pops up.

Thanks for having fun with us! Hope you have a great day!!
And thanks dear husband for receiving my messages of love :o)

Saturday, November 5, 2016

NEWS FLASH! My Man In Motion...Craig's Wheels, Old...Now New!!

Finally, after adjusting from a desktop computer, testing an IPad, and compromising with my first ever lap top... I have completed the long awaited, much anticipated "Craig Gets His New Wheelchair!" expose :o)
Because he has had it for a couple of months, it isn't new anymore, but hey, better late than never. It made me happy to know that my dear husband has gone from a very old (in chair years), literally falling apart wheelchair to a brand new, safe set of wheels! Never before have I seen, nor have any of my old manual chairs been used to the point that pieces can be pulled off! Take a look in the video below to see what I am talking about.
Are You Looking for a new Wheelchair? 
When it comes to Craig and I, we both  recommend the QUICKIE brand. So we are biased. We do recommend researching brands. These days online, it is easy to check out actual chairs and the companies and all the models available as well as, having access to the feelings, thoughts and reviews of actual wheelchair users. Who better to ask than actual users! As a wheelchair user most of my fifty years of life, it always bothered me when mobility equipment and such is designed by non-users.
Watch Craig's First Day With His New Chair And Two Months Later!
Click here or the YouTube video  image below!)

Why Walking Way Overrated?
It is one reason why we are here at Walking Way Overrated, sharing our thoughts on many related topics. It is our hope to offer useful information to assist any fellow wheelchair users or interested persons. After all, I know how often I research daily, topics of all kinds. I love it when I can find real people, withe real experiences and advice about whatever subject I maybe trying learn about. It helps me a lot to know I am not alone.

So we hope if you like this article please share it, like it and subscribe to keep posted! We really appreciate all the support we can get.

Sunday, October 23, 2016

Yay! Craig's New Manual Wheelchair Is In Motion!

Yay, it has been a while, but I have been planning on sharing more...until I get the time to....Good News! Craig got his new Quickie 2 Manual Wheel Chair. He has his Xtender wheels mounted on so that is why the wheels look the same. But hey, look at the new colour, CANDY RED!" He is enjoying having a chair that is actually connected in all the right places. Stay tuned and I will be sharing more soon! (Still getting used to our new lap top).
See ya soon!

Thursday, September 15, 2016

FROM MODERATE TABLET TO A LAPTOP -Why?

Last time I was here was to share a bittersweet event. What was that, you ask? Our iMac 27 inch, late 2009 computer was in near death mode. That meant it was time to find a suitable replacement that could carry out the tasks I need to do every day...well, almost every day. Not wanting our computer to have dual duty as our television anymore, it was obvious we wouldn't fork over the huge amount that the original iMac cost. Don't get me wrong, after years of PC ownership, the last six years as an iMac user has been remarkably better. Multi tasking, video producing, working with graphics and word processing, as well as bookkeeping and such...oh ya, watching Youtube videos and other moving images while I worked away, basically problem free. So Apple, for me (thanks to my dear nephew's recommendation) has been a great system.
But it just wouldn't be feasible to take it to the dealer for diagnosis and repair, if possible. I just discovered my particular iMac has been classified as "vintage." That means it is not possible to purchase new replacement parts. Yes, that includes the official Apple dealer in our region. In fact, they were the ones who informed me of my iMac's old age classification and what it meant.
Here is one of the things I love to do on my computer, draw! 

What About The iPad Air?
If you read the previous post, then you know I was please with the newly purchased iPad Air. It was a simple to use and mobile device. Mind you, I didn't have a case yet, so I was very paranoid about dropping it. That meant I kept it snuggled and propped up in a box. Determined to make it work to avoid spending more money on a new computer, I had ordered cords and such in an attempt to access my back up hard drive. You see the one annoying, big deal about the iPads...no USB ports. That means it is the same as using your phone or other hand held device. I knew that prior to purchasing. It was a bigger deal than I realized. My computer is used not just to blog like I am now, but to draw (I am an artist after all), edit and produce videos, and run A Bergie Creation, my online Etsy Shop. No, I do not play video games. Did that back in the Pac Man days, and boy was it addictive!
Using the iPad Air would have worked if I had no choice. In fact, I was re-typing out all my Pages documents needed for my Personal Care Attendants. Hiring them means documentation, scheduling and preparing quarterly reports and all that fun stuff. Yes, iPads come with the fundamental programs like Pages and iMovie, but I couldn't get them off my back up drive because of the inability to plug in my back up drive that contained those documents. Bit by bit, the necessary documents were being re-written.
iCloud, A New Necessity
What about iCloud? Well, yes, when my iMac first because shutting down spontaneously, I did back up documents onto my iCloud account. Unfortunately, wouldn't ya know it, I missed some key files. Argh! Needless to say, I definitely have concluded that it is time to depend on iCloud for all important files and photos. It is far less stressful that worrying about losing the ability to read the back up drive. No, I do not know if you can use iCloud for PC's. I say that because I did consider the possibility of switching to an inexpensive PC lap top instead of Apple World. For the countless non-Apple users, I know there are methods of saving your files on the "cloud" by other apps. Based on my many computer "deaths" over the years, I highly recommend making use of whatever methods available to protect your precious photos and data.
My First Computer
A long time ago, I realized that as convenient as a laptop can be, it wouldn't ever work for me. Using a laptop is a frustrating challenge if you have weakened hand muscles or other hand issues. My weakness means I am unable to hold my hands above the surface. For decades resting my hands on the area I was writing painting or drawing on, was the norm. It was why my first computer about twenty five years ago, was set up with a track ball device. I had been assessed by a facility that apparently still provides assessments and access to government funding for communication devices such as a computer. It was how I was blessed with my first PC. Even though my hands weren't as weak as they are now, they assessed that it may benefit me if I didn't have to move my right hand to make a mouse move. A Trac-Ball was a stationary device that meant I just placed my hand on the piece and rolled the ball with my hand to direct the pointer. To select and such, I could click the button on the right left and I think the top middle part. It fit my hand well. However, when it was time for a new computer, I didn't want to go through the government again if I didn't have to so I tried a "regular" mouse and discovered my hand could manage it well.
For me a laptop was never an option. Mostly because the key board is too deep for me to reach comfortably. As well, unless there is a way to turn it off, my hands and wrists rest on the track pad /mouse part in order to type, making it impossible to accomplish any proper key boarding. Knowing that brings to question what happened next...
In fact, even as I type this, my wrist is starting to hurt as my fingers use every ounce of strength, trying to reach the letters between "Q and P," not to mention the numbers. (Thankfully, I believe I am able to connect the Bluetooth wireless key board and mouse, that came with our vintage iMac. I just haven't done it yet). So yes, almost a week later, I was flipping through the Best Buy website where we purchased the iPad. For some reason, I have come to believe that Apple products never go on sale. Mind you, the iPad Air was on sale for fifteen dollars less, but I am talking serious discounts that really mean "on Sale." Well surprise! I just happened to discover that the 2016 Macbook Air was on sale for not fifteen, but a whole two hundred dollars less! In my usual impulsive manner, I declared to Craig (my husband), that he had to fly down to the Best Buy Store and exchange the iPad for the laptop. It just made more sense to be able to actually use a computer and not a hand held device that can't handle the tasks I have always carried out.
My dear husband helped me quickly pack up the iPad. Concerned it would sell out, I didn't have time to delete all my passwords and such. I booked the laptop online, reserving it for twenty minutes to pick up at our location. Frantically, I was telling him that he had to hurry!
"Hurry Craig! You only have twenty minutes or it might be sold out!"
He made it there. In fact, at first we didn't think it worked when the sales lady said she couldn't find the reserved one. He phoned me about it first and then he asked if the Macbook that was sitting behind her, was the one we reserved. She couldn't find our name on it, but once she looked closer, voila! There is was, our new laptop.
See, even if you have weak hands, wrists and arms like me, there are adaptive aids to not just help you use a computer but to play bowling like I am doing here. And if you look to the left, there are many ways that enable steering your power wheelchair using your fingers, head and these days there are even brain implants so you can think your chair where to go. (not a fan of transhumanism but, it is out there)
The Nopes And The Yays
As I waited for him to return my thoughts turned from, "yay a sale!" on Apple products to, "how on earth would I use a laptop?" Well, here we are a week later and I am typing with the keyboard that is built in. Easy? Nope. I do have to manoeuvre my forearms as close as I can get them, but like I said thanks to Bluetooth. Here are My Yays and Nopes...
Yay, I can use my wireless devices.
Yay, Once again I am able to access my back up drive which means no more having to re-write my important documents.
Nope, I can not lift this mobile computer.
Yay, I can use this computer like my vintage one.
Nope, it won't be possible to just bring it to watch in bed.
Yay, I can carry out multiple tasks without the lagging that happened with the iPad.
Yay, I get to blog, run my shop and I am pretty sure make videos!

Sunday, September 4, 2016

ASSSISTIVE DEVICES - From Jumbo Computer to Moderate Tablet

 Hi guys. It has been a while. The iMac 27 inch computer that we had/have has been dying a slow
death. Thankfully,  it hasn't died completely. It began flickering off  and on and then crash to a black screen. I panicked, believing it was all over with. But then, for the last few weeks it has  miraculously continued to work and not work. Giving me time to back up documents and research what to do. Which has resulted in the  decision to not purchase another phone computer, be an iMac or PC.  However, after using an Apple iMac for about  seven years from morning until night, I have concluded that I would prefer to stick with Apple products. But wanted to reduce cost and try something new.
 iPad Air 2
 I am sitting here  dictating into our new iPad air number two. It is doing a pretty good job at typing out what I am actually saying. Must say,  I am very impressed. No it is not as fast as my old quad core processor. If that's what you call it. But, considering what I needed for these days, this 9 inch lightweight  Device, meets my needs. Something I recommend, is to order a iPad case that folds Into an easel type stand.  Because my muscles are weak, it is easier to touch the screen when it is propped up. Besides, this thin tablet  feels too delicate for clumsy me hold without a case. Cases on eBay.ca can be purchased for under $10 Canadian. I will let you know the quality In 4 to 20 weeks. It is coming from China after all. Cheaper than $50-$80 from Apple. Yes, you get the fans bitten Apple logo, but I would  rather save the money.
Our iMac was 27 inches on purpose, because it was also our  our TV too. We only watch whatever is on like YouTube and Netflix, as well as television network website programs. No longer having the iMac,  meant we had to buy a new flatscreen smart television. According to a young friend our actual TV was ancient or antique.  It was about 1 1/2 feet deep do you know the old fashioned televisions. So we were able to get an iPad air device as well as a new smart TV for half the price Of a iMac 21 1/2 inch screen. Kind of a  relief. This is my first blog using verbal dictation so I am going to end it now. Stay tuned because we have a new log to make, about Craig's  New quickie wheelchair!!

Exciting to see what we can do with this new device. Not just the wheelchair, I mean the iPad which is streaming from our handheld devices. We only had to sign up for Google Cast! That was free!

See you soon!



Tuesday, August 2, 2016

HOW A HELMET SAVED MORE THAN JUST MY LIFE

Here are some great You TubeChannels that have been produced by fellow wheel chair users. It is wonderful that there are so many folks sharing their wisdom and life experience in hope that, just as Walking, Way Overrated's hope, is to encourage and assist others who are living with or know loved ones living with physical challenges.
Most of the links are created by persons living with spinal cord injuries. Unlike us, my disorder was acquired before birth and Craig's too, but he did,'t face using a wheelchair until about thirty years later. Either way, the information is beneficial whether you are facing a sudden life altering challenge or are use to things the way they are. We never know what we may learn from others! So thank you to all these great folks sharing their wisdom!

Be encouraged, learn and grow!
Here are just a few channels for now, just click the name to go directly to their channel to see more....

Channel  #1 RueTo You- 
Spinal Cord Injury - Spasms

I Have Jesus Testimony


How To Transfer Without A Board



Channel  #2  Paralyzed Living - "Get Busy Living,or Get Busy Dying."
How A Helmet Saved More Than Just My Life
Bladder  Management After Spinal Cord Injury 

Channel #3 Jonathan Merchant
Jonathan Working Hard


Techniques and Technology To Protect Your Shoulders







HOW TO TRANSFER FROM YOUR WHEELCHAIR TO BED OR CAR....

Even though my husband has been using a wheelchair for about thirty years, he is still always learning how to do daily activities as his body faces aging issues such as osteoarthritis. For instance, up until about seven years ago, he would do a standing pivot transfer. Meaning he would stand up, hold on to his arm rests, carefully balance and pivot to drop down his backside onto whatever surface he wanted to transfer to.
Life Altering Injuries
One day as he was standing about to pivot, he noticed his wheelchair brake was releasing. Not wanting to come crashing down, he made a sudden twisting move to hit the bed surface, heard a wrenching, tearing sound in his shoulder. It was a memorable night, but ever since, he has not been able to transfer the way he always did. His rotator cuff was torn and mighty painful. In fact, it has never been restored completely. He has undergone physical therapy, has stretches and and exercises to do at home. Words of wisdom, if you have a routine your physio wants you to do, stay committed and do those exercises and stretches because if you slack off, as my husband has discovered, your muscles and joints, tendons and ligaments will suffer. The old adage, if you don't move it, you'll lose it, is true. Not to mention in his case, because he is sixty four, osteoarthritis has been impacting his physical mobility in his hands and fingers. Again, all the more reason to keep mobile no matter what it takes!
Not Confined to Our Wheelchairs, Just Using Them!
Like I said, if you are able to bear weight like Craig, you can stand holding onto your braked wheelchair and pivot onto your destination. Unless you end up with a a shoulder injury like he did,
Me and my older hoyer lift
then you need to find another way that doesn't involve standing.
As Life changes your abilities, it means coming up with new ways to make life happen.
The sliding transfer Craig does now, is the one I used before I broke my leg doing it back in the this photo when I was eighteen! It was only because of my motor neurone disorder, Spinal Muscular Atrophy. My arm collapsed while I was sliding from my bed onto my wheelchair. Plunk, I my knee hit the floor and I heard a devastating crunch. In my situation, I lost the muscles needed while healing my femur fracture. Mental note, when you live with progressive neuromuscular disorders, please remember to move your muscles as much as possible in order to maintain the strength you had prior to whatever it was that landed you in the hospital or cast.
But this is about transferring for persona who are able to do it on their own, without any devices such as a hoyer lift or even a transfer board.
Before I used a Hoyer hydraulic lift, I would transfer the same way Craig has been ever since the injury. I call it a sliding transfer. It can be done without any assistive devices. In Craig's case and others, it is often necessary to make sure the surface, be it the bed must be raised to a similar height as your wheelchair seat. Unless you are a pro, with great strength, sliding from surface to surface of equal height is the easiest.
Let's See How Other's Do IT!
Below are some very useful videos, the first one is from a cool dude, seriously he is :o) named Mad Martini! I love his Channel title, "Wheelchairs Rock!" So take a look at this to see the basic transferring skills that Marty shares as he enters and exits his car. And then we have added a few more useful videos on the same topic of sliding transfers.
Watch Martin Transfer Here:

How To Transfer From Wheelchair To Bed

From Wheelchair To Floor
A Variety Of Wheelchair Transfers
Wheelchair To Chair Transfer
Floor To Wheelchair Transfer


Monday, July 25, 2016

CRAIG'S NEW WHEELCHAIR IS IN!....Well Sort Of

A while ago I said we would post the steps that Craig was going through to replace his dilapidated eight year old manual wheelchair. I apologize,  I haven't written since that day. What I can say is, the
That meant, the vendor representative had to come and finalize all the details and specifications of the chair. If you are in need or will be in need of a wheelchair for the first time, you will learn that just getting any old wheelchair isn't what is best. Yes, in countries where mobility devices are hard to come by, many will use whatever means they have to get around. In our country and I assume the US of A, a physic therapist or occupational therapist assesses your needs. In Craig's case, they made sure the seat dimensions were correct, as well as the height from the seat to the floor and the height of the back of his wheelchair. If there are weight issues, then they also need to make sure the client weighs under 250 pounds or maybe with the brand/model he is getting it is 260 pounds. He found out after purchasing the Quickie Xtender power assist wheels that there is a 250 pound weight restriction. Not something  you want to find out after you purchase a device like that. We discovered the warranty would be void if he exceeded that limit. Thankfully, he was under, but it sure opened our eyes to not assuming, the vendor will let you know all those kinds of details. I know weight can be a sensitive issue for some, but it is better than finding out after the purchase, that your chair can't can't handle your weight and can't be fixed under warranty. Be sure to do your research on the product as well as the specifications and restrictions.

Aside from those details, they also needed to make sure that he gets the special supports under his arm rests. Some people use their arm rests to lean on for transferring. Like Craig has done. It means standard chair arm rests can not handle the force nd pressure and require metal bracing underneath the arm part. Often when a new chair is ordered, a new medical cushion is required as well. Google wheelchair cushions and you will find many exist. However, we only recommend ROHO cushions. They are rubber, with air modules or cells. They come in different thicknesses and the air can be distributed evenly in one big compartment or as in my case, I have the Quatro version, divided into, you guessed it, quarters. Because I have severe scoliosis, the valve can be released, so I can learn one way or the other, let the air fill up more in one of the quarters, then lock that air in place. You never want to just use a cheap foam cushion if you are a regular, full time wheelchair user. You can end up with serious conditions that are avoidable like, pressure ulcers or osteomyelitis bone infections. And just plain, pain!
Supports Needed
Some folks like myself, require physical supports that can be inserted once in your chair. Or some have a specialized wheelchair back that can have lumbar supports that are permanent or removable, and/or swing away lateral supports and such - all to help keep your spine straight. Many, including myself, can end up with scoliosis as a secondary issue, due to poor seating or lack of seating supports. Sitting in a wheelchair that doesn't have proper positioning for your body, can lead to physical deformities that could be avoided if everything was well supported.
Patience Required
As for Craig's Chair, it was officially ordered over one month ago so today he phoned the vendor to find out if it is in yet. And yay, it is in their building! He is in desperate need of it because his old one is literally falling apart.  They told him that it isn't assembled yet. So he has to be patient along with however many other customers. An understandable thing, but hopefully it happens soon because the back canes that broke a while ago, are twisting and messing with the chair.
Since he has to wait, he just left to get the hand brake fixed because it is letting loose, not a good thing when you are transferring from point A to B. At least it is in the city. As well, the vendor has to set up the chair according to the specifications decided upon in the seating clinic with the physical therapist and vendor.
So that is where Craig's new chair is at as of this moment. As soon as there is more movement, I shall post some more!
Have a great day!
Any questions, comments or suggestions about topics, please comment down below!
Okay, that's not Craig or his new wheelchair! This is the olympic athlete Jean Driscoll! Cool wheelchair meant for racing!

Friday, July 22, 2016

I'D RATHER BE IN THIS WHEELCHAIR THAN....Meet My Hero

Looking For Inspiration?
If you have been here before, you've met one of my biggest heroes! If you haven't met her, I introduce you to Joni Eareckson Tada and her husband Ken.
I have been blessed by her for decades. When I was about 12, a bunch of fellow children with disabilities from the residence I lived in, all went to see her movie debut called: "JONI." What was so incredible was that she plays herself. I always recommend others to watch "JONI." As well, for the last several years her ministry, Joni and Friends, have been producing short fils about persons who inspire her. Thankfully in the mix are some more great videos featuring Joni, her life, husband, and all that she does.

To see the first video in this series about Joni (years after the movie about her was made) Just click on the title here: 
I'D RATHER BE IN THIS WHEELCHAIR

Here is another great video all about Joni's beautiful art work. 
PAINTING FOR GOD'S PLEASURE


Wednesday, July 20, 2016

MEET RICH! Creating Your Own Adaptive Devices - Living Like I Always Did

Meet Rich from Handi Help!
The other day as I was browsing, I discovered this inspiring man named Rich. He is 6 foot 5 inches and severed his spinal cord about 17 years ago. He is all about creating adaptions in order to enable he and others like us, to be able to be as independent as posible, enjoying all the activities prior to the onse
t of a disability. He has quite the ingenious mind. I am fifty, was born with my disability and never considered some of Rich's most helpful solutions!
Share this with anyone you know who may benefit from some pretty cool problem solving - all to not miss out on "normal" life!
I highly suggest checking out Rich's kayaking ang Sled dog racing fun too!
Below are just a few of his many great videos as well.
Be encouraged.

How To Improve Your Grip, click here.
Winter In A Wheelchair, click here.

How To Close Your Door With Ease

Picking Up A Book
Fishing From A Wheelchair
There's No Place Like Home
Raised Gardens for Access


Tuesday, July 12, 2016

RECENT SHOOTINGS IN THE USA: Make It Home Arrive Home Alive

Coffey Anderson has produced an excellent educational video giving great advice to anyone when  being pulled over by the police, what to do and how to do it safely and respectfully prepare for their arrival to the driver's door. His heart is or the police sand parties involved to get home safely. He addresses stereotypes and what we can learn from each other.
Click here to watch Coffey's video

Saturday, July 9, 2016

WRITE YOUR OWN STORY

Dealing With Life and Suffering...How?
As I was completing the video for this article, I stumbled across an article that had the title of my most favourite quote ever. It is from Joni Eareckson Tada. Click here to see the article titled with her quote "GOD IF I CAN'T DIE, TEACH ME HOW TO LIVE." The perfect quote to start off this article on a very controversial and intense subject. A prayer Joni uttered when she was deeply struggling with coming to terms with her newly acquired spinal cord injury from a diving accident that left her paralyzed from below the shoulders down. Click here to read an interview where she addresses pain and suffering.
From Loss To Hope...
Okay, first of all I encourage you to watch this very moving video, before I share the one that prompted this blog article and then my response video way down below.
 Click the Title below the image of these beautiful girls to see it: 
The Kemp girls, watch their video. Photo from www.fightSMA.orgOne SMA Family’s Story: From Loss to Hope
Beautiful family, aren't they!

Can you tell I am not wanting to share what I am about to share? It is a subject that infuriates me and breaks my heart to hear others like myself, speak out about wanting to legalize assisted suicide - wanting to have the "option" available if one chooses.
When you meet precious children as in the video above, and the countless others I have been honoured to meet since my childhood who were born with all types of disabilities.
On that inspiring note, this morning I began watching the video of Julia Lamb down below. At first glance,when I saw the title:

See?


I was wrong! Foolishly assumed, that because of the title, of the above CBC news video article, that Ms. Julia Lamb, was fighting against the assisted suicide bill, that was tragically passed recently in our home land of, Canada. Yay, glad to see someone on our national news, speaking up against it, this should be encouraging and inspiring. After all, there are many of us in this entire world, who believe regardless of our disabilities, diseases or illnesses, that life, regardless of how difficult and painful and even scary it might get, is something we must do - live life no matter what! 
That God Himself, is the only One who knows when and how we are to leave these physical bodies. We do not have the "right" to kill our selves, with assistance or not. Yes, many think we do. There was a time in my second decade of life where I was so down, I contemplated suicide. But thankfully, I was too terrified of dying then because I didn't know what would happen. It was then that I faced a twenty year death sentence. If you have followed this blog, you will know that around seven or so, a Doctor told my Mom in front of me, that I had Muscular Dystrophy and would be dead at twenty. (Needless to say, that is a topic for another day. ) 
Before I realized that her views are contrary to mine. I thought it was really neat that she also has spinal muscular atrophy, the same diagnosis as myself. I don't get to meet too many people with SMA in our home town. (my first diagnosis I had was wrong). Based on her description and details about her life thus far, it would seem that she has type 2 SMA.  I have type 3 SMA.  My dear nephew Kyle, who had type 1 (infantile SMA) and after eleven days, went right into the Arms of Jesus. Life expectancy predictions,  is something I learned the hard way, to not live by. Yes, it can offer an average range. But ultimately it is in God's hands and many, including myself, lived past the prognosis given at diagnosis. As well, we may have an idea of may happen to our bodies as the motor neurone deteriorate based on the history of many who have come before us. Yes, everyone I have met with my type, have all been far different in severity than myself. Such as the fact that I stopped walking by age 14 and our friend in Iran, is in his thirties and he can still walk and work full time. Another fellow we met in Peru, can stand up with help....see what I mean. 
I spent all day trying to find the right words to say and now the day is coming to an end and I am not done....so here is a video I made to supplement the point of this article and maybe tomorrow I will conclude with all the rest of the words. no words can express how sad this whole subject makes me....so for now I want to say this to anyone facing a life altering diagnosis.
Write Your Own Story
Like one specialist told me years ago when I was asking if I was to expect that one day I may need a  respirator or GI tube for feeding, he told me to "Write your own story." Clearly,  the range of severity at varying ages is not consistently the same. 















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OUR WEDDING STORY SPECIAL FEATURE: Keep On the Sunny Side...ALWAYS On The Sunny Side....

The Perfect Dress, (for me) Where It Came From?
Okay, it is most difficult to not keep talking about our wonderful wedding story. So I decided once I found some more special wedding photos just now, to add on a Special Feature. My Dad has a family of nine children. He is the third oldest and his brother, my uncle Ed, is the oldest. All are boys except my Aunty, who is in the previous article photos. She made my wedding dress out my sister's wedding dress. You see, I didn't get to tell all of these great unique details in the other articles! So now is the time. Yes, my sister, who had a
beautiful wedding dress made by our Dad's only sister, in the 80's, showed up at my apartment one day and handed me her wedding dress. Can't remember if she even knew that may plan was to not even worry about wearing any wedding dresses. (Just click here to see who they are in Our Wedding Story the Finale)
My plan was to wear something nice. But now, my sister basically donated her wedding dress to me. Now if you knew my sister, you would know that I would never fit into any of her clothing. My body is on the much more generous size. But because it was the 1980s when her dress was made with care by our aunty, there was a lot of taffeta fabric that could be repurposed to create a brand new dress! And the coolest thing of all, our same Aunty would make the dress. So I drew a simple picture of the dress I thought would work for my body and as one who sits for a living.
As you can see, my dress was beautiful. Wanting to make the most of every inch of fabric, my Aunty handed me a bag of tiny white beads. I felt so bad when I realized that she had removed, every single bead that she had originally hand sewn on the front of my sister's dress bodice! My Aunty made the dress even fit perfectly around the very obvious scoliosis parts of my body. I have a large bulge on my right side in the back. It is the outer part of the "S" part of my spinal curvature. It is about an 80 degree curve that forces my right rib cage to push out. The other side is pushed in. And she was the first one who gave me the idea of custom made dresses for us who use wheels for legs, because she made a special cut out area where I sit. The very kind of dresses I have been making for myself now, for years. It makes many things a lot easier for me. If you do not have the strength to push up your fanny up off the seat of your chair, to pull down a dress or even pull up pants for that matter (perhaps I will go into more detail on accessible dresses in the future :o), this design makes going to the bathroom and dressing so much easier as well!
So I wanted to share the wonderful blessing of my dress and how it came to be.
Keep On the Sunny Side...ALWAYS On The Sunny Side....
My Dad and four of his seven brothers love singing and playing instruments together. Not saying the don't all love doing that, but these particular ones would play as a group at times. I remember many times, where the family, my Grandpa H playing the fiddle, my uncles and my Aunty who made my dress, would be singing and playing, mostly guitars. What great memories for me to be blessed with.
My Favourite Uncle Ed playing the mandolin at our wedding!
My Dad himself, has written hundreds of country style songs, so that tells you how much music means to him and his family. My Mom also enjoys singing with him and has also sung in special groups. as for myself, I always loved singing in my room to the music, at the top of my lungs! And at summer camp where no one knew me, I would sing on talent nights. Oh yes, my dear friend Sue played the guitar for me once, so I could sing a song at church....
Anyhow, I want to share this in honour of my dear Uncle Ed who left us all far too soon, a handful of years after our wedding. He was one of the biggest music and book lovers that I have ever met. He even was building his own mandolin before he passed on. That was just a mere part of his beautiful carpentry skills. From him I learned what an autoharp was, because he had one. It is a cool stringed instrument. Google it. He often made me smile because of his quick wit and sincere words. His youngest daughter (her photos are also in the previous Wedding story article) was closer than a sister to me, my whole life. In fact, people called us Two Peas In A Pod. So no matter how far we lived away from each other, I always had an extra special connection with my cousin and her family. At one point when I was  in grade seven and eight or so, we got to live in a trailer court they owned, while my Dad built our home.
Craig and I love Blue Grass music. So it only made sense to have some of that special music at our wedding ceremony. Aside from my uncle's beautiful granddaughter singing while I came down the aisle, we asked my dad and the group of his brothers, plus their friend, to sing "Keep On The Sunny Side" during the license signing.
( For privacy reason, I am not naming all of the people in our wedding pictures because I don't have permission to do so. Incase you are wondering why, I haven't named names)

My Dad and two of his brothers singing and playing!
Come On Every One, Join In!
Here is where our wedding becomes even more unique than most people are familiar with. In fact it is the only time  I have ever seen this happen at a wedding! Thrilled to have our family singing and playing for us, my dear exuberant, not shy I might add, husband Craig, after he is done doing his part signing - turns to the wedding guests in the church and says joyfully, "Come on everyone, Join in!"  Craig has a very robust voice and he can sing and talk loudly. It was more like a sing a long than a wedding moment. Yes, I was a wee bit embarrassed. It wasn't something I had ever been a part of before. My embarrassment was silly. Because of my husband, we got to have a super memorable moment that I think some others might have thought special as well. So there he was, like a choir leader. This choir leader's voice you could hear! ...."Keep On the sunny side, ....always on the sunny side....keep soon the sunny side of life....t will brighten up your day. Take a listen to these folks singing it here if you have no idea how it goes. I think you can see why it would stir up such happiness in my husband!

Here they all are, playing and singing while we sign the license and all that fun stuff...
All In The Family...
For Craig and I blood isn't necessarily thicker than water. For us, friends can be adopted in our hearts, making them as loved as any family members. For me, because I grew up with two families, my loving biological family and at the residence where I lived (institution), as well at  a young age I sent away for a couple of weeks a year for my favourite summer camp for children with disabilities...all of these factors and more causes my heart to easily feel as much love for friends as I do family
Northwood Camp - an Easter seals camp for children living with physical disabilities. I am second from the front left. This was the cabin of our girls and the counsellors. I loved looking forward to two weeks of summer camp every year since I was about seven.
members. It makes life all that more special. On that note, I want to share some more extra special parts that made our wedding more than just a special day.
I hire my own Personal Care Attendants and even though they are hired to help me do things like getting in and out of bed, and all kinds of daily living tasks, many of them become long time friends. On our wedding day, my wonderful girls blessed me in big ways. One who had no longer worked for me but stayed a friend, was apprenticing to be a photographer. She took all the photos you see as a wedding gift, developing included. This was before the digital camera age! We weren't planning on hiring any photographer so what an added surprise that was.
Then another one of my dear PCAs who became a friend, loaned us her video camera and actually recorded our wedding for us! A hard copy of a wonderful memory! As well because our luncheon was not catered, another great natured PCA of mine, helped out with food prep in the kitchen that day. It was my mom and friends who prepared the yummy food, perigees and cabbage rolls of course. As well as my Aunty who  made my dress, also helped out by making the wedding cake and a meat dish! And then....my sister. Well, I told you all about her sweet gesture of giving me her dress. She also was given something like a measly fifty buck and she decorated using my favourite thing, blue glass and other details to decorate. She also helped with other tasks like the handmade wedding invitations.
One of my dear friends, a wonderful musician and writer, blessed us by playing the piano when there were no blue grass singing family members! And like I mentioned earlier, my closest cousin's (the other pea in my pod) daughter, sang while I came down the aisle, while a friend of their family played the guitar. Again, all so extra special!
As well as singing, giving me away, my Dad helped me out the morning of tie up the roses I had stored overnight in my extra cold spare room. Couldn't have gotten ready in time if he didn't help me out. I also had to make the three buttoners. Like I said, getting married for 11am, was a bad idea because it meant far more hurriedness than I had originally anticipated. But thanks to my Dad, he made it a bit easier by doing something simple.
To make it easier and as wheelchair accessible as possible we borrowed the two churches that were next to each other. The one with the luncheon was the church where I first met Craig years earlier when he came to visit. It was important that we had the church with the kitchen, restored and cleaned back to perfection. Thanks to more of our dear friends and family, we had people like Craig's brother Eric, doing dishes. According to Craig, Eric wasn't a big dish washing guy. As well I remember my uncle Ed's wife, my Aunt of course helping out as well as my cousins, immediate family and friends. Washing, drying and cleaning...all of it happened because of so many wonderful loving friends and family. Thank you to everyone. Thank You God!
Hope you enjoyed my ramblings about our special day!
...Jan, I Miss Her Dearly
Jan is beautiful isn't she?
And then there was my super close sister in Christ, Jan. She went to Heaven ten years ago after battling cancer. She helped me with words of wisdom about marriage along with helping me prepare wedding favours. God blessed my life with another person I adopted in my heart to be closer than any family member.

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Tuesday, July 5, 2016

OUR WEDDING STORY: The Finale! Just Some Photos....


 Well, I decided enough words and video about our wedding story and thought it best to just share some photos about it instead! :o)

( For privacy reason, I am not naming all of the people in our wedding pictures because I don't have permission to do so. Incase you are wondering why, I haven't named names)

Yay, we are getting married soon! 
We miss Aunty Cleo!  This was an "engagement" party get together at Craig's home.
The wedding rehearsal night. Friends and family! October 19, 2001
My handsome Dad, getting ready at my apartment. 
My beautiful Mom, ready for the wedding at my apartment.
Left to right- Some of my pretty family members at my apartment before the wedding at 11am. My Auntie, who made my dress and our wedding cake, as well as other culinary delights! My Mom who cooked the majority of the food we all ate. My cousin's daughter, she sang beautifully while Dad and I came down the aisle and her Mom, my close cousin who was my bridesmaid.

The same beautiful ladies as above as well as my pretty sister and my cousin's handsome son. All in my kitchen, just before the morning wedding!

My pretty sister, and matron of honour, striking a "doing my hair" pose. But if she was the one who did my hair, I wouldn't have had so much hairspray stuck to my head! Caution brides to be, never hire an unknown lady to do your hair without any prep or trial "do's!"

Dear Dad, getting me to that church on time!
One of my handsome cousins in our van on our way to the church!
Ceremony time!
My sister's beautiful decorating on a very low budget :o)
One of Craig's sisters and her husband later in the day at Craig's, Pop's home.
Pops and I.

My Mom and Dad!

You know who they are now!



My parents, sister, cousin and Craig's cousin and his friend (our wedding party) 
My handsomest husband! 
My beloved, handsome nephew!
My cousin's beautiful daughter!
My cousin's handsome son!  Can you tell these two are brother and sister?!
One of my best friends and sister in Christ, Jan. I miss her a lot and look forward to seeing her in Heaven one day soon!


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