I’m Sydney Quickert, I am 22 and I have Limb Girdle Muscular Dystrophy. I live in Belleville with my family. I studied Graphic Design at Durham College and will be studying Animation with an emphasis on Web Design at Loyalist College in Belleville. I am participating in this year’s walk with my family and my boyfriend. Please join us!
I was diagnosed at the age of 11, when I had a muscle biopsy, however it was clear that something was not quite right since I first learned to walk. I walked on my toes and there were many falls and bruises. I always struggled to keep up with other kids, and was always tired and sore. As the years have gone by my condition has progressed. Now I have trouble swallowing and I have weakness and pain all over. It is difficult for me to write for long periods of time, cut food, brush my hair or draw. I have great difficulty with stairs and standing for long periods, I can not walk long distances and I am very tired most of the time. I started using a power scooter/wheel chair this year for distances and getting around larger places like schools and malls. I am still not used to using it.
CHALLENGES IN LIVING WITH MUSCULAR DYSTROPHY:
One of the biggest challenges was growing up with MD and being looked upon as different:
I was looked upon as being different or not fitting it. When I was younger during gym class or recess activities I would often sit on the sidelines because I just couldn’t participate. The other kids didn’t seem to understand and saw me as different. As a result of this I was bullied a lot. I did not want to go to school and felt embarrassed I sometimes tried to fit in and be normal physically but I would end up being exhausted and sore all over.
Asking for and getting accommodations for my disability has always been challenging:
People don’t always understand it or can’t always see my disability. I felt guilty or not deserving of accommodations as it often seemed so inconvenient to get them. While at school I need accommodations such as extra time to complete assignments when needed, copies of notes or a note taker, a chair to sit down (some classes have stand up labs), a reduced course load and access to an elevator to name a few. In the home environment I need assistance with preparing meals, help with laundry (it is difficult to bend down or carry heavy things), a seat in a barrier free shower, and I need people to drive me places.
Managing the pain, weakness and fatigue with life in general can be challenging:
Learning to conserve energy is a challenge. A day of school and homework can be exhausting. I have often sacrificed time with friends and family to get school work done. I have spent a lot of energy just trying to appear normal.
Finding employment is challenging:
I have not been able to find part time employment where I can be sitting and not have to walk or stand much. I hope to be able to work in Graphic and Web Design.
Using accessible parking can be a challenge:
I can walk (so I often appear normal), I can’t walk very far or for very long without being in pain or exhausted. I have an accessible parking permit which I use sometimes especially if a I am really tired. I have received nasty notes and dirty looks for this.
MY GREATEST ACCOMPLISHMENTS:
Surviving through the bullies and all the people who told me I couldn’t do things.
I have come to learn that to be successful, asking for help is important, whether it’s accommodations at school or using mobility devices.
WHY DID I BECOME INVOLVED IN THE WALK FOR MUSCULAR DYSTROPHY?
I want people to know what Muscular Dystrophy is. I want people to realize that people with Muscular Dystrophy can present symptoms in many different ways, and that you can’t always point someone out as being disabled. Muscular Dystrophy can come in all different shapes, sizes, and have completely different symptoms. I want people to realize that yes, I may not always look like I have a disability, but I do.
I want people to know that people with Muscular Dystrophy are normal people. We are trying to succeed in life just like everyone else. Just because we might have different needs, doesn’t mean we are ‘different.’
I want people to know that the world is not nearly as accessible as they may think it is:
Many public places are not fully accessible. Many schools are not fully accessible. Whether it is providing access to ramps and no steps, providing access to an elevator, automatic door openers (it is difficult opening a bathroom or classroom door without an automatic opener in a power scooter/wheel chair), enough space in the aisles to use a wheelchair (to be able to turn around), accessible washrooms; most places only provide some of the things that we (people with disabilities) need to be successful. It is rare to find a place that is truly accessible.
I want people to know that Muscular Dystrophy can affect all aspects of our lives. Where we go to school, what we study at school, how we eat, how we cook, what we wear, what shoes we wear, what route we take, brushing our hair, how long we can leave the house for, what kind of job we can have, playing video games, what kind of dog we get, what type of house we can live in, whether or not we are strong enough to have a child. Its not just ‘we have trouble walking.’
I want people to be able to open their minds and realize that Muscular Dystrophy is not simple.
I want to help raise money and awareness for Muscular Dystrophy Canada.