My beautiful husband’s determination, alertness, optimism and wicked sense of humour are a constant source of inspiration to all around him.
Three years ago, 52 years young, we were given the shattering diagnosis, Multiple System
An extremely rare neurological condition, similar in it’s affliction to Motor Neurone Disease, but even more complex, affecting so many parts and functions of the body. Following an earlier diagnosis of Parkinson’s at the age of 45, Rod’s sharp brain continues to be fully functional and he understands everything around him but is now unable to talk, move or swallow. He communicates his choices by tapping his foot or gazing with his
eyes. Our lives have become overwhelmed with MSA, but after 32 wonderful years of
marriage we don’t allow thelimitations to defeat us. We live as full a life as possible, now
supported by our sons and Rod’s funded, full time Carers.
The ability to stand, lie flat and constantly change position is absolutely essential to maintain Rod’s strength, circulation, pressure management, digestion and comfort. The only chance of achieving this is with a custom built, powered, standing wheelchair, an Easyrise Genie V.2.
We could not believe the joy and relief on Rod’s face at a home demonstration of the
wheelchair. We have a chance to enhance life for my wonderful husband, as much as is
feasibly possible, give him the freedom to enjoy his passion for live music and sport, and
experience life outside of the home. Once agin he could stand and look people in the eye,
something so important for social interaction and self esteem and even more crucially this
would bring him so much relief for his hourly positional changes, during physiotherapy and
provide the conditions for complete rest.
We need to raise £13400 for this power wheelchair.
Funding the chair is an absolute priority for us, something we have to do for Rod as he is now unable to type or speak. Unfortunately due to the rareness of this disease many avenues of
funding are not open to us and our local health authority cannot provide anything but a basic wheelchair. We are very aware that neurological conditions affect life expectancy, but when
the time comes the chair will be able to serve someone with a similar cruel neurological
The impact on our lives is beyond comprehension but despite the daily hurdles, Rod’s mental strength is unbelievable. From the very day of diagnosis we have all lived in hope of a cure,
never allowing MSA to take away any opportunity to spend precious time with our family,
laugh with brilliant friends and get out and about. When he could still talk, Rod used to say
that he was a man with an extremely unlucky diagnosis, not a death sentence, but a chance to live.
- Amanda Lands
- Gill Farley
- Simon Scott
- Maria Webb