Hold On To Your Dreams and Hoop

wheelscoloredInspirational video – I will walk again…  (Myelopathy is any condition (disease) of the spinal cord.  More commonly known is multiple sclerosis (MS) which is similar although not the same.  Here the myelin sheath around the nerve fibres – the coating insulating the wires – breaks down.  Myopathy means simply ‘a condition of the muscles’.  Guillain-Barre sydrome is an auto-immune condition where the body attacks it’s own spinal cord and nervous system.)

This video was made by a young woman I am proud to call my friend. She has a myelopathy with an unknown etiology (doctors also suspected a myopathy and Guillain-Barre syndrome at various times). Her originality and ability to -think-outside-the-box inspired the idea of bright wheels (just google ‘colored wheels’) for a wheelchair – they also look like the beautiful hula-hoop in the video (great adult rehab ‘toy’ is a perfect Holiday gift) which is hand-made, stripe taped (you choose the colours) and professional quality – email me if you would like to buy one (very different from toyshop ones) and I will forward it to the maker.

Her story is unique – and yet at the same time, for me, it sounds remarkably like dozens of similar stories that I know of.  In fact it’s very similar to my own – including the age at which this fight started. I use the word ‘fight’ because, like me, Alicia has had to push, cajole and advocate for herself at every ‘step’ of her journey. Literally…

41BdnzaqVDL._SX334_BO1,204,203,200_For Alicia, the story began when she was 24.  She had been completely healthy and was at the peak of physical wellness.  She had just been on a fabulous holiday in Cuba and had returned to a cold Canadian February.  Within weeks it was obvious that she had much more than flu…  Her legs would give out under her on the way to her classes.  Eventually she was diagnosed with myelopathy.  She was also confined to a wheelchair, her mobility severely reduced because of poor function in her arms, which was getting worse as time wore on.  As a final straw, she was told that would not walk again.

How devastating that a healthy 24 year old doing well at university should wake up one morning with life as she knew it – her dreams and hope for her future – in ruins and changed beyond recognition.  I think many reading these pages recognize a similar devastation?  And yet despite this she is a constant source of interesting information for disability and found the books on here (design meets disability and The Ultimate Guide to Sex and Disability) Click on the images to read more about them.

41-8iu3RqeL._SX331_BO1,204,203,200_Back to our story… Luckily a brilliant,neurologist decided to trust Alicia when she said that she would walk again. The doctor saw to it that Alicia had the support she needed from rehabilitation, specifically spinal cord rehab. At the same time, Alicia arranged to carry on with her studies from her hospital bed and graduated within a year of her classmates.

Five years later Alicia is still fighting. She finished her degree and maintains a full-time job, at which she excels. Life is tenuous but good although ‘flare-ups’ seem to occur now and again.  However, with determination and support she is able to keep her decent life.

Watch her story on video by clicking here!

Good luck Alicia and thank you for your inspirational video – and for just being ‘you’…   Julie