Activities for people living with MS – Jane’s story

Wheelchair outdoors

I first met Jane on the 19th May. It wasn’t Jane’s first interaction with Yorkshire Care Equipment. She bought her wheelchair from my colleague David. When I joined Yorkshire Care Equipment some time after the wheelchair purchase with the brief to engage with the care sector David recommended I speak with Jane. I found out why when we met on the 19th. This is Jane’s story and how in her own words and how outdoor activity brought a new perspective to her MS diagnosis.

My Multiple Sclerosis (MS) diagnosis

“My journey with Multiple Sclerosis (MS) began in 1992 although I didn’t receive an actual diagnosis until 2003.  MS is an autoimmune condition whereby your body’s own immune system attacks the myelin sheath of the nerves.  Without the myelin sheath nerves do not function properly and nerve impulses are interrupted.  I was diagnosed with relapsing remitting MS, as such there were times when the MS was active and other times when it was inactive.  Over the years with each active episode, I seemed to lose a little more of my mobility.  As mobility declines it can appear that your world gets increasingly smaller, getting out and about becomes more and more difficult and before you know it you haven’t been out of the house for several days.  By Spring of 2011 my mobility had decreased to such a point that I became a fulltime wheelchair user.  I live in the country and have always been an active outdoors type of person, despite there being a bridle path that runs right past my door I had no means of access or ability to get out “in” the countryside.  I have always tried to maintain a positive outlook on life but I must say that during this period the decline in my physical health had a massive negative impact on my mental health. You start to question where life’s heading; would I continue to deteriorate and from this point am I just going to be making the best of a bad job?

Infusion treatment

Things began to change for me when in late 2011 I started on an infusion treatment of a drug called Tysabri.  Tysabri isn’t a cure for MS and doesn’t work for everyone, but thankfully in my case, it has held my MS stable for the last eleven years.  With stability comes the thoughts that maybe, just maybe, if you can work out a way to get back out “there”, life could begin again.  At the start of 2014 this became my New Year’s resolution, I had no idea where to start looking but I was determined to try.

The MS Society and the MS Life Conference

Fortuitously, in April of 2014 I attended an MS Life Conference in Manchester, put on by the MS Society.  The conference was full of experts offering advice on all matters MS related, vendors demonstrating various pieces of equipment and charities offering a variety of aid & support.  One booth I stopped at was for the charity Sportability.  Sportability act as hosts, running events and introducing people with a disability (that stems from a neurological condition) to a wide variety of outdoor pursuits.  The Sportability tag line is that they take the “dis” out of disability but they do so much more than that, Sportability quite literally changed my life.  Throughout 2014 and 2015 I began attending Sportability events, I went water skiing, quad biking, blokarting, gliding, flying, canoeing and so much more.  The Sportability crew bend over backwards to prove to you that your disability is no obstacle to getting out there and just doing it!  Somewhere between the activities & the wonderful people I met, my attitude to being in a wheelchair changed & life in general became so much happier.  The only problem was that to attend events I had a minimum of a 2 hour round trip as the closest Sportability region to me was based in the Midlands.  At the end of 2015 I hatched a plan to host a fund raiser to thank Sportability for what they had done for me, secretly hoping that they might ask me to start to run some events for them.  The fund raiser was a resounding success and I was absolutely delighted that my plan paid off and I was asked to set up and run a Yorkshire region for Sportability.

Yorkshire region Sportability events

I began in 2016 running six events and over the past 5 years (2020 & 2021 not included due to the pandemic) I have developed and grown the region to where now in 2022 I have a total of 19 events on the calendar.  It has been my absolute privilege to run events for Sportability, to share the life transforming effect it had on my life and see the joy it brings to other people.  Each event allows for an opportunity to leave your disability behind and for a moment step outside the bounds it may have placed on your life.  The effect lasts even when the event is over, your conversations with family and friends that night and in the days to follow are not centered around your health or disability but rather about the great day you had speeding round a field on a quad bike (for example).  The feedback I receive often reduces me to tears at the out pouring of emotion and elation our members feel after participating in one of our events.  Beyond the actual activity, it is also the community that begins to develop, the shared experience and meeting others in a similar position to yourself, that begins to erase the feeling of isolation and dispels the belief that you are in this alone.

Sportability and Experience Community

Our Sportability members may use us as an introduction to a new activity, join that group and then pursue further activities with that group in their own right.  For me that group was Experience Community.  Experience Community are a not-for-profit organization based in Slaithwaite, West Yorkshire.  They have a fleet of off-road equipment such as hand bikes and Mountain trikes, all available for rental to be used for either bike rides or rambles.  I met Experience Community when they ran a Sportability event for me in 2016, after which I joined the group and attended several taster sessions to build and improve my skills using a Mountain Trike.  I am now an active member of the group and attend weekly sessions at Leeds Urban Bike Park and weekend rambles.  Experience Community have forged relationships with organisations such as Yorkshire Water, to improve the accessibility of their sites and as such our group are frequent visitors to many of the circular routes around their reservoirs.  Again, similarly to my experience with Sportability, it is the shared community spirit, along with the physical exercise that does both the heart and mind the world of good.

For conditions such as MS, much of the focus of organisations such as the MS Society is to find a cure for the disease.  While this is laudable it is also important to help people with disabilities live life to the full.  I consider myself very lucky to have found both Sportability & Experience Community with whose help I am most certainly doing just that”.

I look forward to meeting up with Jane, the Sportability crew and the team at Experience Community at Leeds Urban Bike Park on the 8th June.

Related article:

Activities for disabled people

Outdoor wheelchair activity with Sportability

To find out more please get in touch with our team:

    Graeme Wilson
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