Ian Williams: “I have MS but it doesn’t have me.”
July 4, 2012
The Fresh Outlook
Ian Williams thought his life was over when he was diagnosed with Multiple Sclerosis. But it was just the beginning.
MS is a neurological condition which affects around 100,000 people in the UK. It has a wide range of symptoms and is often unpredictable and affects everyone in a different way. It targets the central nervous system which prevents impulse signals from the brain or delays or misinterprets them.
Although it can affect any part of the body, it usually starts with a single episode of nerve dysfunction, an inflammation of the optic nerve in one eye. It is not terminal but there is no cure.
And when Ian was 27, he got his diagnosis.
He started to have pain in his left eye which led to a loss of vision. “I also experienced a loss of sensation in my leg and weakness. I started to stumble and lose my balance. These symptoms subsided initially and I was diagnosed with relapsing remitting MS.”
Ian continued to work despite his diagnosis as an injection moulding operator for a CD/DVD manufacturer. He was given “all sorts” of medication, from steroids to pain killers.
“They helped for a time but became less effective as time went on,” he said. “It was very much trial and error until I found medication that suited. As the condition progresses new medication has been introduced to manage the associated symptoms.”
Adapting to the loss of sensation in his legs and damaged eyesight, Ian’s work life did eventually have to change. Unable to physically continue, Ian went from a well-paid job to benefits in “a matter of weeks”.
“The change was traumatic and had a huge impact on my family. We struggled to pay the mortgage and bills and with two children aged 10 and seven it was very tough,” he explained. “However we tried our best to make sure they didn’t miss out on things. My dad was a tremendous help and I was extremely lucky to have his support, without him we probably would have lost the house.
“There was a massive adjustment to be made and there were some truly awful times. I saw no light at the end of the tunnel and became a social recluse with nothing much to look forward to. The disease was progressing far quicker than expected, although MS is unpredictable and I fell into deep depression”.
He recalls coming out of his pit of despair when his condition began to deteriorate.
“I became very ill and I’d tried many of the disease modifying treatments (DMTs) but they hadn’t helped me. My consultant suggested I try a two-year course of Mitoxantrone, which is a form of chemotherapy and was only used for severe progressive MS.
“Despite the risks involved I felt it was worth a try and was really my only hope of slowing down the rapid progression. The problem was that there wasn’t any money available and WAG refused to fund it, they gave me all sorts of feeble excuses related to the licensing of the drug in the UK. This was not the case so I decided to fight.
“I began a campaign to highlight my plight. I appeared in both local and national press and my story was featured on ITV Wales news. I wrote many letters, MP, AM, WAG and Health commission Wales. A month or so later my consultant called to say the health board would fund the treatment and that it was prepared to fund it for any ms patients that were suitable. I felt amazing for the first time in years and this was the catalyst for a new chapter in my life.”
The chemotherapy Ian was treated with is the same drug used to treat leukaemia and breast cancer.
“Although it didn’t improve anything it managed to stabilise the MS. And although the chemotherapy was not pleasant I knew it was helping me. I had the usual chemo side effects although I was fortunate I didn’t loose my hair”.
With the treatment, Ian’s MS started to stabilise which gave him back his confidence.
“I wanted to try something new that could help others”.
With hard work and commitment, Ian earned a Level 3 Diploma in Holistic Therapy which also covers reflexology, aromatherapy and massage.
But that wasn’t enough for Ian; he wanted to do more for those who were going through the same problems. He decided to raise money and awareness for MS. He organised and did two sky dives, zip-slide and abseiling which earned him the title of MS Society UK fundraiser of the year. But that wasn’t his great achievement, raising over £25,000 for the organisation was.
A New Start
After accepting the title of Fundraiser of the Year, Ian was contacted by Able Radio.
“I was an interviewee on Able Radio following my award and was so impressed with the setup that when I finished my college course I started to volunteer in Jan 2010”.
From the moment he was offered a permanent job as a radio presenter, Ian has been on cloud nine: “I love it! I get a great buzz out of it.”
His show means a “great deal”; it is a mixture of rock and metal music that he presents weekly as well as news, sports and Able life programmes.
And now Ian has been approached to participate in a feature length film documentary.
“I’m very excited! The film has been commission by Disability Wales. It’s the 40th anniversary and it’s about being disabled and living in Wales. They were looking for people born in 1972 and as I was born in that year I fit into the age range.”
The film will be premiered in Cardiff Bay on the December 3: “We want to empower a wide range of disabled people to make it,” Ian says, enthusiastically. And he has a disabled production team to film the progress of disability history.
Ian has come so far and achieved so much since his diagnosis and he is determined to help those who are lost or do not feel confident in pursuing their dreams.
His philosophy is: “Always have hope and never give up, no matter how far away your dreams seem to be”.
Although Ian’s type of MS is rare, Ian’s advice to those who are diagnosed with relapsing remitting MS is: “Life doesn’t stop when MS starts. With the right support and positive frame of mind life can be lived to the full.
“I have MS but it doesn’t have me”.
If you want to help raise awareness or get more information about MS, go to the MS Society website: mssociety.org.uk
By Kate Wilson
[Image courtesy of Ian Williams]