Cerebral Palsy Awareness Month: An Interview with Mindy

Posted on March 14, 2016 by admin
March is Cerebral Palsy Awareness Month, and ramping up towards World Cerebral Palsy Day on March 25th, I’m excited to hare my friend Mindy here to share a bit about her life with Cerebral Palsy [CP].
Mindy, smiling, as she sits on a web of ropes at a playground. Her shoulder-length hair is slightly red as it catches the sun.
Hi Mindy! Thanks for sharing your story with us today! Tell us a bit about yourself.
That’s a hard question LOL I am 25 the oldest of three I have two siblings a younger sister and a younger brother. I graduated university two years ago with a communications degree and I would consider myself a public speaker oh and I have two cats Jackson and Persia who are perr-fect
Tell us more about your CP story—what did it mean for you and your family when you were younger?
Nothing. It sounds funny but I was raised as a completely normal child. I had homework and grounding and chores and friends and school,  I also had doctors appointments and surgeries but my parents worked those things  around every thing else that made me a normal kid. And someone young age both my parents and I knew that I was going to be as normal as I could be not letting my CP get in the way. My parents did everything they could to make sure that I was not defined by a condition disease or disability.
I think that makes perfect sense–and how things should be! How have things changed for you since childhood?
I recently wrote about this on my blog. When I was 3 1/2 I had a selective dorsal rhizotomy, which is a surgery where they cut and link in certain nerves in your spinal cord to hopefully help you to walk. In my case the surgery went very well. After the surgery, though, I had to go through years of physical therapy, as well as occupational therapy. I did intensive therapy up until the age of six or seven, and then occasional therapy afterwards. Sadly, now I am not as flexible as I was then. But that’s OK with me. I had a doctor tell me and my mum when I was a teenager that I could stretch 3 to 4 times a day, but if I did that I would have no life and I probably wouldn’t want to do that (he hit the nail on the head!). So, I traded stretching for a life, and now people could say that I “pay” for it, because now I don’t have as much flexibility and muscle tone in my legs. I almost always have pain in my back at some point during the day, and as of right now I am looking at transitioning into a manual [wheel]chair for part of the day at least. I don’t see this as a negative thing, per se, because I see it as normal aging with CP. Now I opt for natural pain relief and less invasive options for stretching and things like that. For a time I tried Botox to help with some of the muscle spasticity in my legs, but that went horribly wrong (that’s a long story and it is in a video on my channel). I have also had my ankle tendons and lengthened (So that I could walk flat-footed) and that helped for a few years, but because I didn’t keep up the stretching I have gone back to my “normal” stance, which is fine with me. I have also had more eye surgeries than I can count because I have nystagmus (a lazy eye) that refuses to respond to surgical intervention. Other than a chronically sore neck it doesn’t cause me any real issues.
Although my life is different now and has definitely changed from what it was, I wouldn’t change any of my life experiences for any amount of money because I believe they have made me who I am.
4. What do you wish people understood better about living with cerebral palsy?
There are a few things I wish people would understand better and in no particular order here they are 1. as of right now there is no cure and no amount of prayer will make me “better”. I am not sick I am perfectly normal in the body that I have.
2. cerebral palsy in itself does not get worse, but the effect that CP has on your body over time can change and you can experience “worsening symptoms”
3. there is a continuum of CP and anybody and everybody with CP is different. There is no blanket diagnosis you can put on someone. It all depends on where the clot in your brain lands
Has connecting online been a part of your patient journey? Why or why not–and if so, what has that looked like?
Yes! About three years ago, I started a YouTube channel Living My CP Life and through that I have been able to talk to people across the world: in Australia, New Zealand, through the States, England, and many other countries. It’s interesting to see everybody’s experiences similarities and differences and realize that some of the quirks you thought you had are shared by so many other people.
I also get to educate people about disability. I think is one of the best parts is to hear that I really helped a family or a community understand accessibility or a child in their classroom is an indescribable feeling.
In living with CP since birth, have you found any resources or people in your community helpful? What does your in-person support network look like–if anything!
My parents did a lot of research when I was younger (especially my mom), and the Rehabilitation Center for Children [in Winnipeg] was like a second home. I did many hours of physical and occupational therapy in order to gain the skills that I have now: I’m to be able to live life fully. I owe a big thank you to my physiotherapist from the Rehab, I still keep in contact with her and she is still one of my biggest influences. I also was able to get a grant from the Shriner’s, that allowed me to get a Freedom Concepts bicycle so that I could have the experience of learning to ride and riding a bike like any other kid.
Currently I am lucky to have a few friends who have CP so now we are able to talk about our experiences and compare symptoms, and help each other in ways that people without CP couldn’t or wouldn’t understand.
The support component from people who “get it” is SO important! Any final thoughts to leave us with?
As a person, through my work and through my experiences I like to show people that persons with disabilities are only disabled if our society allows them to be. I feel like disability is a mindset and if you change that mindset for yourself with four other thing you can free yourself of that label -because that’s all it is a label – and just be a person like anybody else.
Thanks, Mindy! To learn more about Mindy, visit her blog Living my CP Life, find her on Facebook, and subscribe on YouTube. She welcomes e-mails with questions, comments, and business inquiries, to livingmyCPlife [at] gmail.com.

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