Disclosure: In order to improve Muscular Dystrophy awareness and help raise funds for a cure as part of the #LiveUnlimited campaign, I received a #LiveUnlimited Endorphin Warrior bracelet. No additional compensation was received for this post.
I’ve been a pediatric occupational therapist for 17 years. Everyone always asks what an “OT” is. Many people think my job is to help people find new jobs.
Occupational therapy is a rehabilitation profession. I actually have a job because people have had accidents or been born with disabilities and delays that impact their ability to function in the world.
This means adults or kids may have either lost or never developed the ability or independence to do simple things, like get dressed or go to the bathroom by themselves, without the help of another person or device.
Until you are not able, you will not realize how easy and effortless it is to wake up in the morning, get out of bed, take a shower, get dressed, wipe your bottom, button a shirt, put on your socks and shoes, brush your teeth, eat your favorite meal with a fork or a spoon, cook a meal, make a cup of coffee, to spontaneously drive a car or hop a flight to a vacation destination.
You can actually make choices on a whim, like deciding to take a walk, ride a bike, go for a swim, or hike a path.
For the most part, you have the physical skills and the ability to just go and do what you want, when you want.
You can #LiveUnlimited.
My job has allowed me to meet the most amazing people and families under some of the most difficult circumstances. Watching someone learn to function, who has a disability or delay, will certainly give you a whole new perspective of life and what it takes to meaningfully live.
You learn to appreciate very small victories.
Muscular Dystrophy (MD) and Amyotrophic Lateral Sclerosis (ALS) are neurogenative diseases that impact the life of a person and the families who care for them. While these diseases can be diagnosed at different ages, the outcome is tragically the same. A person’s muscle strength and coordination will deteriorate until they eventually can no longer function and die.
With MD, families often begin to seek occupational therapy and physical therapy when their child, around the ages of 2 or 3 years, can not get up off the ground when they fall down. They aren’t able to quickly learn new skills of running or jumping. Families wonder why, despite everyone’s efforts, learning these skills is harder, instead of easier.
As a pediatric OT, through play and games, we help build a child’s strength, endurance and coordination. We want them to master as many skills as they can, so when the regression happens because we know it eventually will, they will have achieved as much independence as humanly possible.
We are blessed to have a lot of technology and innovations in our daily lives that are truly amazing. What you need to know is that it is not as easy as ordering it on Amazon Prime and having it delivered the next day.
Unfortunately, insurance companies do not willingly cover basic equipment for people with disabilities, without requiring pages and pages of medical justification. They frequently deny requests, making it even more difficult for families. After ordering equipment like wheelchairs, it can take almost 6 months for it to arrive. Buying things outright requires extensive fundraising. By the time they get it, their function has often declined and there are always more modifications that need to be made for kids to function.
The domino effect is costly and real. Ordering a wheelchair also means families need to buy an expensive van with a lift in order to transport it, build a ramp to get it in the home, widen doorways to accommodate the size, remodel rooms and bathrooms, maybe even move out of their beloved family home altogether. Travel becomes very difficult.
When you watch a family who has a child or family member struggling with these disabilities, they do what it takes but not without a lot of sacrifice. Parents often give up their own jobs to be full time caretakers. They go to therapy themselves and get treatment to aid their own health due to the muscle pains and weakness they suffer from with the amount of physical work required that it takes to care for their child or family member. They don’t get a vacation, their family members depend on them to live.
Disabilities do not just impact the life of the person, they impose a huge physical and financial strain on the entire family.
In the long-term sense, we need a cure. In the short-term sense, families need your help and support.
Through the month of July, the MDA has organized a few campaigns to help raise awareness and financial resources.
Some of the ways you can help make a difference will only take a minute of your time. They do not cost a penny and you won’t have to go on camera and dump ice water on your head.
Please do not get overwhelmed with feeling like in order to make a difference you have to run a marathon or climb a mountain or to put yourself in a position to understand just how difficult it is for someone to live with a disability.
You can do one simple thing and help raise $5 by going to the MDA website, create a photo on their site that shows how you or someone you know is able to “LiveUnlimited.” Then through the power of your own favorite places online, post this message to your Facebook status and beg everyone else to do the same.
There are Endorphin Warrior bracelets like the one I received and t-shirts you can buy to wear, where a percentage of the purchase is donated back to the MDA.
Certainly if you are able, you can always donate funds or help create fundraising efforts for the MDA organization, by all means your money will be well spent.
I work with families every day who struggle with this as their reality. They are selfless, giving everything they have to improve the quality of life of their family members, while they anxiously await medical advancements for a cure, and their loved ones health fails right in front of their eyes.
Many will tell you that while they did not choose this path, yet they often wouldn’t change it for the world, with the people they have met along their journey. They need help, so let’s do something to make a difference in their lives.
Even though our bodies might not be perfect and we have aches and pains, appreciate that you still have the choice and freedom and ease to do what you want, as others are not.
Everyone deserves a chance to #LiveUnlimited for as long as possible.
— Keri Wilmot (@toyqueen) July 12, 2016
Disclosure: In order to help raise funding for a cure and improve awareness for those with Muscular Dystrophy as part of the #LiveUnlimited campaign, I received a #LiveUnlimited bracelet. Other than a bracelet to wear, I did not receive compensation for this post.