a Leeds man with a little-known brain disease is determined to ensure more people learn about the condition.
Dave Howarth also wants to highlight the mental stress caused by a diagnosis of Cortico Basal Degeneration (CBD), which is often initially mistaken for Parkinson’s Disease.
The 57-year-old from Horsforth says the depression which can accompany a diagnosis of this kind is often not recognised.
“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 and when I heard they were setting up a support group in Leeds for a while I didn’t want any part of it. I didn’t want to see people who were further advanced with the condition. 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.”
Dave’s health problems began in 2006 when he fell from his loft, damaging the discs in his spine.
However over time he noticed other symptoms – a slight tremor and becoming uncharacteristically over-emotional.
In 2011, a neurologist diagnosed CBD and since then he has been managing the condition with drugs. While he shakes continually, he can still walk, but he knows that eventually his muscles will stop working.
Through the PSP Association – which supports people with Progressive Supranuclear Palsey and CBD, which have similar traits – the couple have found emotional support, and through writing a blog, 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. Travelling all that way was a big decision and for a long time I thought it was just going to be too difficult, but it was the best thing I could have done. Health-wise I was a lot better, perhaps because of the climate, and it made me realise just what was possible.”