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Why flying is “wheelie” difficult with MD

I am 34 years old with a PhD in Biomedical Engineering. I have MD and use a motorized wheelchair. There have been multiple issues in common with every flight I have been on. The airplane seat height was a significant challenge as I have muscle contractures and transfers are difficult, often requiring 2 to 3 people to lift me. Lavatory access was impossible and no alternatives were offered. The time required to board and for airline staff to load/unload my wheelchair in the cargo hold was also substantial.

During my time in academia, I was severely limited by distance when attending scientific research conferences. The longest distance I traveled by plane was New Mexico to Seattle on a nonstop flight with Southwest airline lasting 3 hours. Once the plane landed, the staff brought my chair to the boarding gate after what seemed like an hour of anxiously awaiting an opportunity to get to the airport bathroom. My wheelchair had to be manually pushed all the way from the bottom of the plane to my location. Keep in mind power wheelchairs can weigh 300+ pounds and cost $30,000+. Somehow my wheelchair technician back in New Mexico helped us reset the wheelchair.

On a spontaneous weekend trip to Los Angeles, I flew on a smaller United jet. Unlike the Southwest crew allowing me to load/unload directly from my wheelchair, United brought out what they termed an “aisle chair“ which looked to me like a chair for a 10 year old weighing 50 pounds. I was 21+ years old and about 200 pounds! In order to keep me secure in this tiny chair, I was strapped down head to toe which I have to admit made me extremely anxious and a bit claustrophobic (à la straight jacket). After going through this process again to exit the plane, I found out my joystick was broken off the armrest of my chair. The staff found two screws and somehow reattached the pieces. I then once again motored quickly to the nearest airport bathroom.

The bottom line from these stories (like so many others involving people who use motorized wheelchairs) is that is an exhausting and demoralizing experience. I haven’t traveled by plane since 2012 because of these issues and my disease progression. This means that I have to get someone to drive me out of state to attend any disability summit, research symposium, or visit my new nephew (a 20 hour drive!). Why do people with motorized wheelchairs have to be forced into avoiding flying altogether because they are afraid of injury or wheelchair damage? Airline companies must do better!

#MuscularDystrophy #Wheelchair #Disability

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Nervous #EhlersDanlosSyndrome #ChronicFatigue #ChronicPain #AutonomicDysfunction #Depression #Wheelchair #Subluxation #DisabilityTalk

Hi Mighties,

It is 2 am and I am awake and nervous.

Today I have an apointment with my immunologist to find out what kind of inflammatory syndrom I have.

And I get advise about wheelchairs in a mobility aid shop. Guess I need a light chair, and just want to hire(or rent) it to try out whether it is good for me.

My hEDS got much worse within some months. Now I am once again back from hospital cause of a seizure, but I also got a real bad flare. I am just able to get around with bandages and crutches. So I am fed up. I decided it is time for my first wheelchair.

I feel scared But. I got so much inputs from other zebras here and on youtube and from wheelchairusers which are friends or collegues that I feel strong and am convinced I can go for it.

My next aim: going to the zoo by wheelchair to sketch zebras 🦓🦓

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does anyone know if the medline wheelchairs are easy for the user to push themselves?? like when ur sitting in the chair can u push the wheels or do u need someone to move u?? #AutonomicDysfunction #Dysautonomia #Wheelchair #MobilityAids

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Accepting an electric wheelchair

I recently purchased a Golden Technologies Literider Envy green power chair. Since I use various mobility aids (been using the walker pretty often), so it has been getting very hard to get around large places with just a walker. I attended an air show that involved a ton of walking, so my dad had me take my power chair. At first, I was embarrassed because I viewed wheelchairs are for those who are paralyzed, but when I saw ambulatory users my embarrassment was gone and I received compliments on my new chair. It helps me get around with less pain, less fatigue and my symptoms were not as bad. I can say that I accept my new mobility aid because it is a tool to help me get around. And I can enjoy events without paying the price later.

#Disability #Wheelchair #polyarthralgia #Fibromyalgia #AmbulatoryWheelchairUser #HypermobilitySyndrome #dynamicallydisabled #MobilityAids #Acceptance

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You can’t always get what you want, but if you try sometimes…you get what you need

I asked the universe for a motorcycle this year, and they gave me a wheelchair instead 🦽

Grateful I can get to the bathroom on my own now with the help of new wheels

#MightyTogether #Wheelchair #bedbound #Undiagnosed #AutoimmuneThyroidDisease #PolycysticOvarySyndrome #Dysautonomia

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What small things could restaurants do to better accommodate your disability?

I live with bilateral vestibular loss and oscillopsia which means my disability manifests in unstable walking/mobility as well as near-constant bouncing vision.

To be honest, eating in most restaurants is really taxing for me. Whether it’s because of the flooring patterns (a nightmare with bouncing vision) or due to how tightly spaced the tables are together. (Have I fallen in a restaurant and even on top of another eatery patron before because the tables were too close together? YOU BETCHA.)

So I’m curious, what small things could restaurants do to make dining out a better, more accessible experience for people with disabilities?

#Disability #Wheelchair #Spoonie #EhlersDanlosSyndrome #Migraine #MobilityAids #Accessibility #ChronicPain