What do you do when you’re told you have a life-limiting disease?
A DEVASTATING brain disease about which little is known has led a reporter from Sussex Newspapers to tackle the Great South Run on Sunday (October 26).
Chris Shimwell, from the Chichester Observer, is running the race after his uncle Dave Howarth, from Leeds, was diagnosed with Cortico Basal Degeneration (CBD).
Chris is running the race in aid of the PSP Association, the only charity that helps people with CBD and Progressive Supranuclear Palsy (PSP).
You can sponsor him at www.justgiving.com/ChrisShimwell
Here is an interview Dave gave to the Yorkshire Post about what it was like living with a life-limiting degenerative illness.
A few years ago Dave Howarth began collecting the novels of American fantasy writer Tad Williams.
They are doorsteps of books, 1,000 pages or more, and the plan was they would be reading material for his retirement. Except Dave never got to retire. Instead he was forced to give up his job after being diagnosed with the brain disease Cortico Basal Degeneration.
“After I was diagnosed I wrote to Tad Williams to tell him that I was going to start reading his books a little earlier than planned,” says the 57 year old from Leeds. “I told him, why would I live in my world when I could live in his instead.”
It’s three years since Dave was diagnosed and as well as having read a chunk of Williams’ back catalogue, he’s also worked his way through a large Terry Pratchett collection and currently has an Adrian Tchaikovsky book on the go.
CBD means his short term memory is not so good, so to prevent him reading the same novel over and over again, once one is finished it goes back on the shelf and he pulls the next one out a little as a reminder.
Reading, he says, has been a lifeline, but Dave hasn’t entirely disappeared into fantasy. Far from it and in the time he has left he is determined to raise awareness of the little-known neurological condition and speak honestly about the depression which so often accompanies a diagnosis of this kind.
“Look at what happened to Robin Williams,” he says. “When you’re told you have a life limiting illness there are all the physical symptoms to deal with, but I don’t think people talk enough about the mental side.
“I’ve never asked why me. It happened and I have to deal with it, but of course I have dark days. When I heard they were setting up a support group in Leeds, for a while I didn’t want any part of it. Basically, I didn’t want to see my future.
“But as the first meeting got closer, I began to think differently. My wife, Cath, was struggling. I could sit here and tell a stranger my story, but I struggled to talk to her. I thought if we went to one of the meetings it might help.”
Through the PSP Association (the only charitable organisation in the UK supporting people with Progressive Supranuclear Palsey and CBD, which have similar traits) the couple have not only found emotional support, but through writing a blog for the website, Dave also hopes that he can give those newly diagnosed a little hope.
“There is no cure and at some point I will die, most likely of pneumonia, but my life isn’t over,” he says. “Earlier this year Cath and I decided to go to Australia. It was the best thing I could have done. It made me realise just what was possible.”
Dave’s health problems began in 2006 when he fell from the loft of the family home in Horsforth. In chronic pain, having damaged the discs in his spine, Dave spent the next few years going from one hospital appointment to another as doctors tried to alleviate his discomfort. However, with the focus on his back, for a while no one noticed that he was beginning to display symptoms of an altogether more serious condition.
“I noticed when I was brushing my teeth that I had developed a slight tremor in my lip and every so often I would experience a sudden gag reflex, but I thought it would just sort itself out.”
In fact Dave’s symptoms intensified. “I had what they call emotional incontinence. I would cry at anything and everything. I couldn’t understand what was happening to me. I just wanted someone to tell me what was wrong.”
A brain scan revealed nothing abnormal, but after exploring many dead ends Dave was eventually referred to a neurologist who gave an almost instant diagnosis.
“By this stage I was like an old man,” he says. “I told him how it had begun in my left hand and about the day I was eating a sandwich and it felt like my hand just didn’t belong to me. I knew something momentous was about to happen and that’s when he told me I had CBD. One of things we are trying to do with the group is improve diagnosis times, which currently stand at about three years from the first onset of symptoms.”
That was in September 2011 and Dave, who was just 55 years old, had no choice but to give up work. Since then he has been managing the condition with drugs. It means that while he still shakes, he can still walk and his muscles don’t freeze, but he knows that eventually they will stop working.
While he can no longer cycle and finds the cold makes his symptoms worse, he is still regularly goes to gigs at the Brudenell Social Club and has recently started an art class.
“I don’t have a routine, but I do try to keep in touch with the outside world. My daughter, Charlotte, is in Chile at the moment, but we talk a lot on email, I read newspapers online and Twitter has been a bit of a lifeline.
“When I was first diagnosed there were certain friends that I wanted to tell personally and it was funny the different reactions I got. One friend was convinced that we could sort it, that I would get better, while another put the phone down. He’s a good guy, but he just struggled to accept what I was saying.
”I understand that. No one knows how you will react in these kind of situations, but the one thing I’ve always said is that I’ve got CBD, it hasn’t got me.”