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Addressing Unmet Needs in MS: An Innovation Challenge
The fates have conspired, and I find myself dusting off idea for a better kind of cane, for another MS Innovation challenge, sponsored by Bristol Myer Squibb and Lyfebulb.
Last year I entered a similar competition hosted by Novartis and Wired Magazine. My idea is for a portable cane, that looks cool, is young and doesn’t make me feel like I’m 80 years old. Two years ago, I started looking for this cane, to be disappointed because it doesn’t exist.
I got into the cane game early. I was twenty-two years old when at BYU, a religious university. I woke up one morning, my senior year, holding on to the walls and wondering where gravity went. The humor of walking like a drunk person at a university where no one drank, was lost on me. I had already been living with an MS diagnosis for two years, and I was on a DMT, but I pushed myself hard, traveling through India and taking on too much coursework, stressed out, and relapsed.
A few days later I visited my grandparents and Aunt Elaine’s family in Salt Lake City. I borrowed my Grandma’s black and white cane that had harden paint drips and an uneven white coverage of the original black color, my grandfather’s art project. He saw that cane, a certain way, and altered it to match the perception of his mind.
A few weeks after that my parents got me two canes. The first was a cane from a drug store, an expandable cane that clicked while I walked. That wouldn’t do. I was 22, I didn’t want to feel older than my grandparents, in their 70s and 80s. The even need to use a cane to walk.
So I went only, bought a few stylish Harvy canes. Canes became a fashion accessory. Dr. House was out there being a badass on tv, and I tried to make my cane show that I was still one too. I was bing watching Dr. House DVDs, becoming obsessed with solving my own mysterious illness. Why did I need a cane sometimes, and why could I walk without it sometimes? It made me terrified that I was really suffering from a psychosomatic illness. I had taken a Stress Management class in which I learned how people could make themselves have symptoms. I learned that inner stress and turmoil could have a physical manifestation. Had I brought my strange walking problems upon myself?
Nobody seemed to understand my intermittent symptoms, yet I struggled with them daily. My neurologist puzzled that there was no active inflammation during MRI scans. I wondered if my relapse was all in my head, a way to get out of the mountain of stress I buried myself in.
When I was walking well, I still took the cane with me, because I never knew when I would stop being able to walk. I walked self consciously with my cane. I didn’t feel like a bad ass. I felt eyes on me. I felt like a fraud. My brain would match my emotional feelings and I would switch back to actually physically needing the cane, to match the perception of a cane user. I hated that self doubt, and that it influenced me physically.
I don’t feel like the unpredictable places my brain goes is my fault anymore. I don’t blame myself, or search for the reasons why I can walk sometimes, and why I can barely move others. I have a brain and spine full of potholes.
I still can walk. That is a blessing. That is a joy. I will hold on to that in any form I can get it, and I’ll keep walking, hiking, and moving as long as I can.
I want to help other people move with confidence, whether they need a cane sometimes or all the time. I don’t wan’t someone to have to live 15 years with this disease, get hit with a relapse to become comfortable in their needs for a part time mobility device. We move because we fight against a body and brain that is actively warning us not to move. We move because FUMS!
So this cane is the one that that a person doesn’t have to worry about matching her movement to the perceptions of others. A cane to make it easier and less cumbersome to transfer from a wheelchair or a walker. A cane that can be in the background, until you need it in the foreground. I want a cane you can forget about, but be able page it with your phone when you have only so many steps until you fall, and every damn one of them is precious. A cane that will prolong our steps, without wasting any!
So, round two. If I don’t do this now, someone else is going to do it for me. Case in point, I wanted to write an MS book with my daughter, a project on the list. In the meantime another awesome Mom with MS wrote one for her son! I’ve done so many searches for material for my kids about MS and the best I could find was a couple of cartoons on youtube. Content for children explaining MS is largely an unmet need, and now awesome Julie Stamm is helping meet that need! (Check out her book on her website, or amazon.)
It’s awesome to be in a time where we see the stuff we need being addressed. There are so many needs felt by so many who suffer with MS symptoms. If you have a cool idea to help people with MS, work on it. Submit it. Keep on moving!
Please take the time to fill out my cane use survey, on what role a cane plays in your life. Thank you so much! Good luck, stay safe, and God be with you til we meet again.
Cane Use Survey
p.s. The medical cannabis blog I’ve been working on the last month will be coming soon! Thanks for being patient!
Thank you for your courage for using a walking device. I know what’s the alternative? I have a walker at 35 and feel self conscious at times, but it allows me to walk much further. I think it’s great you are going to write a book with your daughter. I’d like read it one day.
I’m so glad that Genentech was helpful to you! I’m working on a larger article on this, but still working on it. The good news is I got my Ocrevus infusion yesterday! Thank you so much for the compliments, and telling me that this writing was helpful. The feedback is so helpful to hear, because I always feel a little nervous writing for an audience, instead of just a journal and privately. 😊