Mark Styles lives with a rare form of Motor Neurone Disease (MND). The 47-year-old from Chartham near Canterbury tells us how important his wheelchair is to him and how it helps him to live with his condition.
I am living with a rare familial form of MND called Kennedy’s Disease. It is a slowly progressing neuromuscular illness that affects my mobility, breathing and swallowing.
Last year, my neurologist and I agreed that I needed a wheelchair assessment to get a modern chair that met my mobility needs and that Katy, my wife, could comfortably operate in terms of weight, ease-of-use and access into and out of a car.
For the past two years, Katy and I have been campaigning on behalf of the Motor Neurone Disease Association (MNDA) to make sure national and local politicians, and NHS England, are fully aware of the needs of patients with neurological disorders
With this year’s local and general elections we have been very busy organising campaign events, travelling to London to lobby Parliament and attending meetings across the country. Therefore we needed the best possible wheelchair to cope with train, car, bus and taxi travel, and long days sitting in it – often outside.
We were delighted when our appointment with Elaine at the Wheelchair Service in Aylesham came through very quickly. I was already an occasional user of a wheelchair loaned by the NHS, but it was heavy and not perfectly fitted for me. The assessment focussed on the likely progression of my illness, but most importantly on what I needed to support my lifestyle. Katy and I were amazed at the choice of modern wheelchairs and were able to spend a great deal of time choosing between a variety of options to suit us best.
The new chair duly arrived and Elaine Tucker, occupational therapist, and Tim Matthews (rehabilitation engineer) at the Wheelchair Service made sure the frame was fine-tuned to fit me exactly. As a result we have had no difficulties using it and it has been extremely comfortable.
The chair has accompanied us to the House of Commons three times, to conferences across the country, to Devon and Cornwall on holiday, to MNDA fund raising events locally, to endless hospital appointments and for everyday use.
Last month, Katy and I attended a garden party at Buckingham Palace, as representatives of the MNDA. My wheelchair enabled me to attend the event without difficulty. At the end of the garden party, all wheelchair users who were attending the event were asked to gather at one of the garden exits. As the Queen was leaving she spent time speaking to us individually and I even got to shake hands with the Duchess of Kent!
The culmination of our campaign work will be a visit to 10 Downing Street this month to present our MND Charter to the Prime Minister. The Charter describes five key rights that people living with MND and their carers need to improve their quality of care and quality of life. Our work, and the work of our MNDA colleagues and other campaign volunteers, has resulted in more than 30,000 people and organisations nationally signing up to support the Charter.
I am delighted Katy and I will be part of a group of six people chosen to present the Charter. We are so grateful to the Wheelchair Service for their part in making this possible.
Having a good wheelchair helps me to live with my illness, rather than suffer from it.