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.

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

CHOOSE LIFE: HUSBAND'S BATTLE WITH ALS EMPOWERS WIFE TO LIVE

As Canada's new government apparently seeks to legalize assisted suicide, my heart breaks at the thought of folks supporting such ignorance that devalues human life. It is why if I find great example such as this couple, I want to share them. Hopefully, through awareness, education and a miracle, those who believe the lie, that to die by taking your own life through the hands of another because you have a life altering disease or such, will open their eyes and see the value of all life.
As well, I pray that the blind will see that living with diseases and disabilities is a part of life for many of us and by supporting assisted suicide and Euthanasia, it sends a very negative message to those who live with dignity no matter how tough it may get.
Psalm 139:14-17
14 I will praise thee; for I am fearfully [and] wonderfully made: marvellous [are] thy works; and [that] my soul knoweth right well. 15 My substance was not hid from thee, when I was made in secret, [and] curiously wrought in the lowest parts of the earth. 16 Thine eyes did see my substance, yet being unperfect; and in thy book all [my members] were written, [which] in continuance were fashioned, when [as yet there was] none of them. 17 How precious also are thy thoughts unto me, O God! how great is the sum of them!

Praise God, We Made It Through….

This time last week, I was sharing about how I was about to try spending the night sleeping in my power tilt wheelchair. Did I make it? Well, here I am. I meant to write about it the next day, but...needless to say, my brain cells were lacking all last week. After some much needed R.E.M. sleep, I can now put words together, to share the following.
I Must Be Dying…

First of all I want to thank God for giving Craig and I the strength to make it through last week. A quick recap (read about it here), my main Personal Care Attendant had to suddenly be off for a week or so, to recover from a back strain injury, acquired at home. Which meant,  I had an, "Uh Oh, what am I going to do" moment. When you depend on the arms and legs of others to get in and out of bed, among a myriad of other tasks, the temptation to panic arises during those moments. And anyone who knows me, knows that even though 99 percent of my life span, has been spent relying on the assistance of others, I am the opposite to a laid back person. When the girl I count on suddenly is unable to give me a hand and I don't have back up assistance for those "just in case moments," my initial reaction isn't as I know it should be… relax, pray to God for help, sip a cup of coffee and

Me in 1966. The best way to sleep in a bed or crib :o)

reflect on how it will all work out….Nope, that's not me, just ask my dear husband…"Craig! What are we going to do? I am going have to live at the hospital or, I must be going to die, so God knows I don't need anyone to help me. Oh and all of this is said loudly,  repeatedly, under great duress, with poor Craig reassuring me that all will work out fine. Do I accept his assessment of the situation? Nope, of course not! Again, the freak out, over reaction, panic and anticipation of a fatal coronary event ensues. And this is just when I have only one employee and am trying to hire a second person.
God's Grace, Really Is Amazing!
Well, thanks to I am sure, God's intervention, a week ago this morning,  as my injured attendant was clearly not doing well physically, an unusual peace flooded my heart and mind.  The temptation to freak out with worry, after she left, did knock at the door, but it didn't happen. Knowing that I had no one to fill in for her, an amazing calmness came over me. I even had a bigger reason to panic, I had been in process trying to hire another morning person, but hadn't yet. And yet still, I sensed that worrying and freaking wouldn't help anything, that God, as He always does, would provide what I needed.  And guess what, He did! Thank You God for Your amazing Grace, for providing me with the best of care and the hearts of three caring, committed, willing and reliable ladies. Did I worry even a little? Of course I tried it, but recanted as God took care of all the details.
The Camp Out
Okay, so yes, God provided for my needs all last week. Thank you Lord for that, thank You for everything actually. I was never stuck in or out of bed and thanks to my dear husband, he helps me out as he always does. But, like I mentioned, I wanted to try to see if I could sleep in my tilting wheelchair, just for the first night. Here's the thing, I didn't have to, I had planned for the worst, hence the plan to not go to bed, but both of my casual gals were able to give me a hand that night and morning. However, I insisted on trying out the camp out idea and decline their offers.
Energize?!
Well, Craig got comfy on the futon in the living room, I got him to wrap me as snug as a bug in a rug with my favourite "Minky" blanket, Star Trek's Deep Space Nine was set to play, while I tried to sleep….and then I tried the video of the book of John….then I tried to shut it all off….and keeping my eyes closed through it all, while Craig was sawing logs, the hours ticked by, 2….3….5…and then by six am - ish,  Craig got up and we made a great scrambled egg breakfast. It all had to be God's grace because there were times that day, where my heart felt like it was going to just stop beating. My disability involves progressive muscle weakness, so I am use to that floppy, limp feeling.  It felt like five pound weights had been strapped to my limbs. Actually that is the best way to help someone understand what progressive muscle wasting feels like. Clamp on some weight to your limbs and carry out your day. Can't be one or two pounders,  try at least five to ten pounds. Pretty much, gravity is my enemy.
Anyhoo, that following night, in our real bed,  as I laid there anticipating a restful sleep, in spite of the second, third and fourth winds,  the physical fatigue intensified and the weakness actually made me nervous. I told Craig I thought I might not make it through the night. Well, I did.  (you have no idea, how many times he hears me say those words)
Lessons
Number one, no, sleeping in my wheelchair is not a good idea. However, if I had no choice, I could survive it, Lord willing.
Lesson two, if someone offers you help, take it. After all, when you ask God for help and He throws you a life line, it is really silly to push it aside. I admit that even though I knew in my heart God would care for my needs, I took control and planned for the worst scenario and as a result spent a night of sleeplessness when I didn't have to. May He remind me of this event, should a similar scenario occur ever again.
A third lesson I want to share with anyone who doesn't know that God loves us and wants us to depend on Him. I have been hiring my own PCAs for about twenty years now, and must testify that without God being life, I wouldn't have been blessed with so many dedicated employees. He loves us and wants us to depend on His care.  I have lived without Him in my life and I could never go back to that life. If it wasn't for the love and care of Jesus Christ, this time a week ago…well, let's just say, I believe I never even would have lived to get to this point in my life.

And thank you so much to my great PCAs. You have no idea how much your willingness, blessed me with reassurance not having to "worry" about how I was going to get to or out of bed. We all made it through and are on the other side.  And thank You God for bringing our main PCA back to us, healed and raring to go. 

Get a Kleenex...

http://www.joniandfriends.org/radio/5-minute/paige-and-tyson-snedeker/

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)

http://www.paigesforgodsglory.org/about/

"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)

Paige and Tyson Snedeker - Article from Joni and Friends website

http://www.biblicaltraining.org/testimonials/tysonsnedeker

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.

Tyson Snedeker -Biblical Training

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

So Just What is Anita's Disability?

Just thought before we go on any further, especially, regarding the recent topic addressing the legalization of Assisted Suicide and Euthanasia in general, that perhaps it would be best if I shared just what it is, that causes me to use a power wheelchair full time. If you are anything like me, usually when I seek advice or information, it wouldn't be from those who have no idea what they are talking about. You know, those certain "never" married, Priests who give pre-marital counsel to young couples. Or Occupational Therapists who assist others with rehabilitation and yet have never once experienced any form of disability or physical issues. Sure, I realize that sometimes that is just the way it goes and we have to receive support and advice from those who have been trained in a certain area of expertise. Doctors are perfect examples of those who may have never undergone any physical health issues, yet we must go to them to receive diagnosis and advice. But, I think you know what I am trying to say.

That's me way back!

For the same reasons above, even though "Walking. Way Overrated," hasn't covered all of the following areas, yet, I thought it would help to share a condensed version of the specific topics that God has blessed me with experience in and this will help you to know where I am coming from: the meaning of life, general knowledge of various disabilities, neuromuscular disorders, spinal muscular atrophy, children and disabilties, growing up in an institution, facing a death sentence at a young age, scoliosis, wheelchair accessibility, advocating for vulnerable persons, designing wheelchair accessible homes and environments, adaptive living, jewellerymaking, fine art painting, visual arts, life as a Christian (about twenty-three years), singleness, alcohol and drug abuse, marriage (been joyfully married for ten years! Praise God!)...and a bunch of other experiences... I

 am still on this earth, able to produce this blog/vlog by the precious grace of God and nothing at all to do with me.

Life -Not Up For Debate: part #1

It saddens me to think that in this day and age we actually have to fight, to protect human life. The justification to end life due to progressive disability diagnosis, inconvenient pregnancies, or for so called merciful purposes, just spins my head. To think that there are fellow humans, that live amongst us who actually believe human life is something we have the right to distinguish. No regard for God's creation and purposes. No regard for my peers who live with many of these same diseases or diagnosis,' that others want to be killed because of. 

The phrase "Dying with Dignity," is often used as an excuse to justify the "cause." What many seem to be ignorant of is that it takes far more dignity to live out a difficult life, than to just snuff it out. That is the easy way out. 

My husband lives in extreme pain, and never ever would he try to end his life. Yes, he asks God to heal him from it, or to help him endure it and at times, just like myself... asks God to please take him to Heaven now! (Depending on how bad the pain is.) Of course, it isn't a pleasure living with pain and suffering and we fully understand the desire to end the pain. At the same time, we know that purposely causing your own death is wrong. It goes against everything God teaches us. In fact, it is during those difficult times that we lean on the Lord our God, with more might that on not so bad days. Learning to depend fully on the One who created us, no matter what it takes, is worth more than I can ever say. Again, yes, there are times we may ask God to remove us from this ailing body, but when He doesn't, we trust that He is caring for us. That He allows these struggles for His Higher purposes. 

[2Co 12:7-10 NLT] 7 even though I have received such wonderful revelations from God. So to keep me from becoming proud, I was given a thorn in my flesh, a messenger from Satan to torment me and keep me from becoming proud. 8 Three different times I begged the Lord to take it away. 9 Each time he said, "My grace is all you need. My power works best in weakness." So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. 10 That's why I take pleasure in my weaknesses, and in the insults, hardships, persecutions, and troubles that I suffer for Christ. For when I am weak, then I am strong.

If you are suffering and live with out Jesus Christ as your Lord and Saviour, we guarantee you that the desire to check out or get swallowed up in self pity, will over take you. My husband and I spent the first half of our lives without Christ, and we would never want to live that way again. That includes when we weren't living in chronic physical pain. A part from Him, we would not be able to live life to the fullest with or without physical ailments.You have a choice to make, life with Him or with out Him. He loves you and wants to bear your burdens and may even heal you or your loved ones in pain. You have nothing to lose. Seek Him...

Below is a video I made  talking about the importance of protecting all life. As a person with a progressive neuromuscular disorder as well as growing up with many many friends, living with a range of disabilities, my heart breaks whenever I hear news stories about how those who are fighting with the court system to enable Doctor assisted suicide.