A year ago I was speeding through the forest, racing through puddles and loving the freedom of moving all by myself in a super duper wheelchair . I was road testing a very special powered wheelchair called the Dragon from Dragonmobility. My condition had deteriorated enough that I was no longer comfortable on my scooter and I could not push myself in my manual wheelchair. Having tried the Dragon in the past I knew it was the perfect wheelchair for Kielder and so the long slog of raising £22k to regain my independence began.
At the end of 2016 Mrs Wifey and I made the long trip down to Cambridge from our little forestry house in the middle of Kielder forest. Filled with excitement and anticipation I could not believe that, thanks to the kindness and generosity of so many people, I had enough money in my wheelchair fund to order my specialist powered wheelchair from Dragonmobility.
A Wheelchair Is Not Just About Movement
A wheelchair is more than a seat on wheels. People often think it is simply to get you from A to B. But in fact, moving about is just one small part of what a wheelchair does, and when you get the RIGHT wheelchair, it literally transforms your life. A lot of wheelchair users, like myself, have difficulty with muscle tone, sitting upright, being comfortable in a wheelchair due to chronic pain and most importantly, sitting in the right position to allow their organs enough space to move and function. A bad wheelchair will impact on all of these and can even cause severe damage to many areas of the body. The right wheelchair will not only improve quality of life and comfort, it may even improve a person’s overall condition.
Building The Right Wheelchair
We arrived at Dragonmobility at 10:30 and after lots of catching up following a 5 year gap since last seeing Dan Everard, the Dragon designer and all-round wheelchair wizard, we got down to business. Dan, Lisa, Seth (Dragonmobility Client Coordinator) and I had a good chat about my disability, my medical issues, what I aimed to do with the Dragon, what I needed to enable me to work and how we expected my condition to progress. Very quickly Dan came up with a list of solutions to ensure that I would be as comfortable as possible and that my upper spine, head and neck were especially supported and protected. Based on years of experience, the Dragonmobility team decided to build my chair with the assumption my needs are similar to someone with SMA (Spinal Muscular Atrophy). People with SMA have very poor muscle tone and can require extensive seating and upper body support. Building my chair with this framework means my seating will support me as my condition continues to deteriorate and I lose more and more muscle tone and function – which is how my EDS has progressed for a long time.
A big problem I have due to Ehlers Danlos Syndrome, is I am extremely floppy. I find it very difficult to sit up unsupported and if left to my own devices, I usually end up in a slumped heap with everything sinking into itself. With the increasing instability in my upper spine and neck, sitting at all is incredibly uncomfortable for me. The Dragon powerchair is going to provide me with a seat that is built specifically for me, my body shape, and my floppy needs. The headrest will cradle and support my neck, holding my head in the correct position to alleviate some of my symptoms, acting like a rigid collar. The arm rests will cradle my incredibly floppy arms and support my wrists to prevent them sinking down between the arm rest and controller.
Understanding Lockdown And Colour Choices
After measuring every inch of my body, it was Lisa’s turn to get involved. More of the team appeared with a large piece of flat wood with tracks attached to it. This was the lockdown system. The lockdown fits inside a wheelchair accessible vehicle (WAV) and the wheelchair sits on top and is secured down with belts, latches and clips. This allows the wheelchair user to stay in their chair whilst travelling in the car. After lots of discussion, Lisa and I decided it would be safer and more comfortable for me to travel in my Dragon inside the car. This would reduce pain and fatigue from transferring to and from the car to my chair, would reduce pain from sitting in an unsupportive carseat and would allow me to be more comfortable for longer journeys. After a quick demo with the children’s Snapdragon (mini version of the Dragon), Lisa had a good play with the lockdown and was surprised at how easy it was to secure the chair.
The hardest part was yet to come. As Lisa moved onto taking the Snapdragon apart and rebuilding it ready for us traveling in our current Honda while we fundraise for our WAV, I had a good think about the colour. As with every wheelchair purchase, this has been the hardest choice! I settled on the same green/duck egg colour from the Rural Teacake colour scheme but sadly I found out a few weeks later that this colour was not an option. I settled for a rusty wine colour, which I have been told by the team has turned out to be rather lush! Dan described it as “old antique pink curtains” while Seth said it was good enough to eat. I can’t wait to see it.
The Finishing Touches
After a lunch break for Mrs Wifey, who was very excited about the gigantic sandwich she was given, we cracked on with talking finance, discussing final options for the last few grand left to raise and we finished the day discussing add-ons such as hard core lights suitable for the dark skies area of Kielder, mounts to attach my iPad and macbook and ramps to get the chair in and out of our current car and into properties without existing wheelchair access.
It was a long and exhausting day but it was a great way to finish off a difficult year of stressful fundraising. Meeting the team and knowing they understand my needs has filled me with confidence that the Dragon is going to be perfect for me.
Thank You To All Who Donated
I want to say a special thank you to everyone who donated to my wheelchair fund, those who organised and came along to fundriaisng events and to anyone who shared my story and fund page. I am truly thankful for all your kindness and compassion. I will be remembering you all when I go to collect my shiny pink Dragon in the next few weeks.
We still have £3k to raise to cover the 5year repair and upgrade package, lights, mounts and other essential add-ons to finish the powered wheelchair. If you would like to donate to Carrie’s fund you can do so at www.youcaring.com/carriesfund