Showing posts with label Motor Neuron Diseases. Show all posts
Showing posts with label Motor Neuron Diseases. Show all posts

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, 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!

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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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

Sunday, January 27, 2013

Going With The Flow -Part 2


Fitting In At Any Cost
Wish I could say that smoking was all I did in an attempt to "blend" in with the world, my choices spiralled down wards until Jesus saved my life in my early twenties.  Sparing the sordid details about my behaviour, let's just say, I was as lost as lost can be. More details on another day.
The point of bringing that up is to share just how compromised and desperate some of us can become when we are convinced, the only way to stop the pain in our hearts, is by going with the flow. Problem is, that flow can be likened to a river of icky white Bondfast glue. Sure at first, some may believe you are one of them and not "different" at all. You may even have a dude come and tell you are cool! But the longer you are trying to flow down that river of glue, that glue starts to form a skin as it begins to dry, as a result, you start to hit globby areas and end up getting caught up in behaviours you never intended. Slowly but surely, if you stay in that river, the glue hardens and so does your heart and mind. Before you know it you are being arrested for shop lifting, boys use and leave you, people are calling you seedy names behind your back, and your spending any time you can numbing the pain with alcohol or drugs, just to mention a few...
Embrace Reality!
More than anything, I am so thankful to our Lord Jesus Christ, for opening my eyes to see the lies I was believing and literally saving me, soul, body and spirit. He taught me to embrace the red. Meaning, let go of trying to be someone and something you were never created to be. Embrace all that is unique and different and me! Life with a disability or visible difference, that some like to point out, is just something that I would have to accept,  instead of hurting myself to show "them" I was equal. How silly to think that I could actually hide those four wheels!
Fearfully and Wonderfully Made

Looking back during the years I was up to my neck in bad, self destructive behaviours, I am in awe and thankful, for the many times it must have been God, Who made sure I would receive messages of Truth.  Not that I was always listening, but He knew what I needed to go through - nothing was in vain.
One time that was so obviously, Him speaking to me...still warms my heart...
Up until the age of fifteen, out of ignorance, I had no problem with abortions. Convinced that, it was just a means of ending a pregnancy and that was that. There will be more about this very serious topic another day. I bring that up because a few years later, after seeing a poster in my apartment building, I went to the community center next door. It was to view a special presentation that featured a film I had never heard of called,  "The Silent Scream".
It was the most traumatic short film I had ever seen. It was a video of an ultrasound during an abortion. I can't bare to watch it again, but I have linked the title of it, incase you want to see it. There was a discussion afterwards. Clueless at that point about the organizations called, Pro-Choice and Pro-Life at the time. That evening, my heart sank. It was there that I learned there were people who supported what was happening to this baby, even after watching what we all just did!
From the back of the room came comments and declarations about human life and the so called "right" to end it, that made no sense to me at all. It was logical, wasn't it? Then, the most amazing thing happened, a lady in the front of the audience, shared Psalm 139 out loud.
Up until then, opening the Bible my dear Grandma H, had given me was rare. As she read God's Word, my heart felt something it hadn't experienced before. Feelings of my own purpose and the love of a God who chose to make us, one by one. It was incredible!
Returning back to my apartment, I unburied my Bible, and looked up Psalm 139. These Words, His Words, were a huge revelation to me. The God of the universe, planned us before any parent ever even wanted to have a child!
Psa 139:15-17  NKJV - My frame was not hidden from You, When I was made in secret, [And] skillfully wrought in the lowest parts of the earth. Your eyes saw my substance, being yet unformed. And in Your book they all were written, The days fashioned for me, When [as yet there were] none of them.  How precious also are Your thoughts to me, O God! How great is the sum of them!
Assuming my folks didn't know about this, I still remember the excitement as I dialled them up and read the passage to my Mom. 
Thank You Lord!

Tuesday, December 13, 2011

Let's Show 'Em What Living with Dignity Means!

This is the last video addressing the dreaded topic of assisted suicide and euthanasia. It is meant to encourage those of us who are up for to the fight for life and to show those who are in the "dark" that living with dignity means living this life out right until God says, we are to leave here, not the by the choice of us or anyone else. Click Above...

Be encouraged my friends. 

Saturday, December 10, 2011

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.