Tuesday, December 23, 2014

Get a Kleenex...


Tempted to stop watching the news lately? I've met those who say they never know what's going on because they can't take it, too depressing for them. As for Craig and I, we may enjoy diversions but, we also believe it is our responsibility to know what's going on with the human race. Craig feels that even though it is often tragic and heartbreaking, knowing what's going on beyond our four walls - helps him know what to pray about or who to pray for. We are warned in the Bible about such days. Thankfully God provides rays of sunshine to encourage and strengthen us, be it through His Word, through friends and family or even through the lives of perfect strangers. Well, people we have never met, who are technically strangers but thanks to modern technology, we get to "meet" these people through media such as television and the internet.

Meet the Snedeker family, particularly Paige and Tyson. Here are rays of light to cut through some of the dark stories of late. "Meeting" this family left me with a kleenex in hand… speechless and in awe of how lives like these can actually be real, but they are. (Click the title to watch the video)


"The Snedeker Family - No Unhappy Endings"

So, if you find yourself grumbling and complaining about the upcoming big "holiday" event, first of all you may want to rethink the whole thing, it causes that much stress…if not, take a break and watch one of the most incredible stories I have ever seen. Two parents have three young children who all have what appears to be a genetic,  mysterious, life threatening, neuromuscular disorder that has no name. Imagine that? Your children, short of a miracle, will not life a full life span due to a disease that can't be diagnosed. Leaving them, legally blind, hearing impaired, connected to respirators, using  power wheelchairs and completely dependent on the arms and legs of others, Paige and Tyson are two incredibly inspiring individuals. They lost their brother to the same disorder at a much younger age than they are now and they both give God all the glory. Only God can put hope and joy in lives that most would consider not joyful or hopeful.

Below is the Link to the Video that left me speechless and tearful (inspirational tears)

  The Snedeker Family - No Unhappy Endings

Below is the website that Paige has featuring her beautiful children's book (click the title to link up)

Below, Tyson Snedeker mentioned in the video about wanting to have a ministry devoted to learning about the Bible. I found this website that he and a friend, Judy Rooks  have called Biblical Training.

Meet Mike King - Running the Race | Joni and Friends

Click link to Watch the Video Below
Mike King - Running the Race | Joni and Friends

Yay, Joni and Friends have produced some more inspirational videos. There are other videos they have produced that are on this blog,  but since Joni went through her bought with cancer, there hadn't been any new ones (Understandably so).  That reminds me... more about that in another post.

Meet Mike King!
"Mike King became paraplegic from a motorcycling accident, as an athletic young man. He overcame his depression with a goal to cross America on his wheelchair. After training, he accomplished his goal by wheeling from Fairbanks Alaska, down the Alaska Highway and across the Continental U.S. to Washington D.C. He then found purpose through becoming a paralympian and champion in wheelchair athletics, coaching and becoming a disability ministry leader." taken from Joni And Friends Website

Sunday, December 21, 2014

Pasta Making My Way Part 2 - "Pastification Time"

Finally, here is part two of "Making Pasta, My Way." Just my experience learning to make home made pasta for the first time, when I thought I wasn't physically able to do it. In the first part we measured, we mixed, we kneaded, we wrapped  and we rested. And now in part two we roll, we cut, we cook and we eat!

You don't need to be differently abled like me to watch this video, all you need is an interest in making pasta for the first time. Or if you need a diversion from all this Christmas craziness. (Would someone explain to me why this time of year seems to stress people out as they rush madly about buying presents and doing all that stuff we know as cultural Christmas - it's not like they just found out about it, we all had a whole year's notice)
If you have tried to make your own pasta or have questions or even comments, we would love to hear from you!

Monday, December 8, 2014

Pasta Making, My Way...

Pasta Dreams
As far back as I can remember, I have been a lover of pasta. No Italian heritage required to be love pasta. My main source, the packaged kind. Even when my arms were stronger I never thought I could make fresh home made pasta. Thanks to the internet and the countless number of tutorials on ever subject under the sun, the inspiration to try making it hit me hard. At first I tried making gnocchi, something else I never thought possible. Gnocchi may be Italian, but it isn't exactly pasta. I believe it is referred to as a dumpling. Usually made with potatoes, flour and egg, it requires something I am not able to do, knead. Turns out it doesn't require as much kneading as I thought. Since I can't knead the traditional way, it was really exciting for me to figure out how to cause the gnocchi dough to be useable, even eatable. It took a couple of tries to master the texture and method, but it happened. Gnocchi is no longer something I can only buy in the grocery store or at Italfest!

As I continued watching pasta tutorials, it was time to go all out and make pasta. With my semolina in hand, I settles on one of a bazillion recipes for pasta. There are recipes with a heap of eggs, some with a couple, some with just water and/or oil…some with one hundred percent semolina, some fifty fifty, mixed with all purpose flour, some with just all purpose flour…some have oil, some do not. Needless to say, finding one recipe wasn't easy. Remember pin the tail on the donkey? Well, spin yourself around with a blind fold and point, where ever your finger points, follow that recipe. Okay, didn't quite do it that way, but I chose one recipe and started my pasta making adventure. It took a total of about five hours to make enough for one meal for Craig and I, but it worked! Since my hands and arms don't have much strength, as you will see in the video below, my first attempt was making the hand formed pasta called "Little Ears" in English. Was it perfect? No, it was edible. It was dense and chewy, but it was something. Just knowing that it was possible to make pasta by modifying the process so I could manage it, was incredibly satisfying. Then my next attempts involved a rolling pin and my husbands arms. That worked too. Better still, I was able to use the rolling pin, bit by bit, all by myself! Thank You God. How rewarding. 
Let's Make Pasta - Watch The Video Above
Original Illustration by Anita Berglund - Copyright 2014 - Not to be reproduced without permission

Tuesday, November 18, 2014

Bedpans, And Toilets, And Catheters Oh My!

We All Gotta Do It!
From the moment we are born, it isn't a secret that we are always in need of waste elimination. From poopy diapers, to potty training trials, training pants, bed wetting, and graduation day, being able to control it all as needed.

The Bottom Of the Matter!
Until recently, I never considered talking about the physical challenges bowel/bladder issues that can arise when you have a physical disability. After all,  poop talk isn't exactly a socially acceptable topic for casual discussion. But you know what?  It is a hard core reality. And it makes life a heck of a lot easier, when you can ask questions and seek advice on any topic that is crucial to life. After all, if we don't eliminate waste products, we can get pretty ill and even die. So it is serious enough to not be be embarrassed by. Jonathan Merchant isn't embarrassed about it all. In fact, it is why I am writing this post, to share his very personal and "family friendly" video, dealing with his particular disability (spinal cord injury), and his bowel care routine. Craig and I, stumbled upon his video a while ago, and thought how brave he was to share such a personal aspect of life. After watching him, it was impossible to feel embarrassed about bathroom "stuff," ever again. As you will see in Jonathan's video, he is discussing how you can be independent regarding bowel care. We don't all have the same physical abilities, so his method is appropriate for others with the same type of mobility and strength. Look how amazingly flexible he is!
You will notice that he has something attached to his right leg. He doesn't talk about it, but it is called a "leg bag." That is a bag that collects urine which runs through tubing. For males, the tubing is attached to a condom catheter. Females who use this method, use indwelling catheters. I can go into more detail on all that another time.
Watch Jonathan's video if you want and then we will talk some more.

We always learned to call suppositories, the "bullet" method! Depending on muscle tone, strength, whether we have spinal cord damage, or can not feel anything, or lack muscle control, or whatever the case may be, our bowel eliminating methods can vary.  Jonathan's routine is one method that is used routinely, when persons are not able to push out waste material or for those of us who just use suppositories as needed.  Such as, when having very hard stool issues or constipation. Don't' get me started on how much that can hurt! Some need to use suppositories regularly and some require then as needed.

If you have had your own experiences that may help someone in your position. Please leave questions and comments below. I hope to delve into more detail on this very personal issue soon. 

Sunday, November 2, 2014

Doing Laundry Sitting Down!

When you sit down, doing laundry can be difficult using a top loading washer. Here is how we do it using the perfect adaptive aid, a front loading washing machine.
Original  Illustration by Anita Berglund - Copyright November 2014 Can not be copied without permission.

I Just finished a new "cartoon" illustration of Craig doing laundry. Was so happy with how it turned out, I am reposting our older "Craig does laundry video." Hope it is informative and fun in one!
Watch the "Craig Does Laundry" video below!

Friday, March 21, 2014

Meet Brett and Paige

Meet this inspiring brother and sister duo. Brett has spinal muscular atrophy type 1 or 2. He is on a ventilator and has a great sense of humour along with a caring, loving sister. Meet these sweet children below on YouTube:
Meet Brett and Paige

Thursday, March 20, 2014

Dancing In A Wheelchair, No Biggie, But Underwater...

photos by: Freewheeling Norman Lomax/ Rex Features
We like to not just talk about relevant topics pertaining to mobility issues and experiences, but pass on those extra unique individuals we learn about who are exceptional at proving why our blog has the title it does. Sue Austin, is one of those individuals. Watch and enjoy, as we are encouraged and reminded once again that walking really is, way overrated. Take a look at dome of her artistry.

Friday, March 7, 2014

Consider Some Assistance

As the years pass by, decade after decade, all of us will face health concerns just simply due to aging.
Add to the aging process...using your arms every single day to get around as one would use their legs and you have a recipe for pain!  Who knew? Perhaps if we did, then just maybe we would have made some different choices, to avoid possibly, some of what we are experiencing now. Oh, who am I kidding, with my impulsive personality, thinking beyond the now, isn't "natural,"  so most likely, I wouldn't have done anything different. But hey, that's just me.
Hopefully, that someone "out there," may glean something useful to apply to their lives. After all, who wouldn't want to avoid causing themselves future pain and discomfort, if they could prevent it? Or if you have a loved one living with a disability and may benefit from knowing what we have learned (and are still learning), keep reading.
For individuals like my husband Craig, who have been using their arms as their number one method for mobility,  pushing their wheelchair every day...year after year...Craig has developed severe shoulder pain. Turns out, the wear and tear of daily wheelchair use, is the cause of pain for many of our peers who also use manual wheelchairs. As logical as it seems, it is not something either of us ever anticipated.
In Craig's case, the pain was exacerbated when he accidentally tore his rotator cuff. For anyone who isn't sure what the rotator cuff is, here is a diagram I found on Wikipedia, click here for more. 

Which reminds me, make sure your wheelchair brakes are always nice and tight. Craig wouldn't have damaged his shoulder if he had maintained his brakes, a lesson learned the hard way!  At almost sixty-two years old, Craig has been assigned daily shoulder stretches to assist in healing the damaged rotator cuff. Through all of this he learned that even without the sudden injury, he still would have had to face shoulder pain.
As the months go by, the pain is slowly lessening but because he still needs to use his shoulders daily  - he can never truly rest. This is why he is now considering something called "power assist wheels." Being a power chair user myself (different than power assist wheels), I originally was concerned he could lose valuable muscles. However, knowing what we do now and witnessing his troubles, it seems a very viable alternative to increasing wear and tear. So we have begun researching just what type of assist he should consider and that is what we want to share here.  We have posted below, some videos of three types of devices that we have seen so far. It is something you may want to consider if you too, use your arms for legs. If you can avoid the long term damage, what a bonus that would be.

E-Motion From Alber 
This is a power assisting add on drive. The device is added to your manual wheel hub area and permits you to push your own chair, and yet assists you up and down hills safely. This means you can still exercise your muscles but you can select the degree of assist you want via a remote control. This device seems preferable to some other devices that are available. Check it out here.

Smart Drive Video Demonstration
This is a unit that can be attached

Spinergy ZX-1 Power Add-On For Manual Wheelchairs