YOUR voice: Barrie Smith

Diagnosed at 49 after decades of unexplained symptoms, Barrie shares his determination to be heard, stay himself and support others. Through advocacy and community building, he reflects on trusting your instincts, living authentically and finding strength in the Parkinson’s community.

Name: Barrie Smith
Age and year of diagnosis: 49 (2007)
Occupation: Ill Health Retired from the NHS
Any immediate family/children: I live in northwest Birmingham, we moved here 38 years ago. I’m married (and have been for 44 years!) and have daughters

How did you find the portrait experience?

The photographer was one of the nicest people I think I’ve met recently. He was lovely. He posed me, where he thought the light would work and to reflect something of me. I think what I see in the portrait is a slightly stubborn man. I wear hats and waistcoats and fob watches – things that people assume that people with YOPD won’t wear. For me, it’s a way of advertising to the world that I’ll live my life my way and you can mind your own business.

Tell us a bit about your journey to diagnosis?

My first symptoms came around my 30th birthday. I lost my sense of smell within three days and never got it back. The GP said I’d damaged my olfactory system scuba diving. Then I developed a catalogue of illnesses – irritable bowel, blisters on my feet, then a severe depression out of nowhere – though three months later it was gone. When I was 47, I developed a tremor and finally someone took notice. I went to the GP and I said, ‘I’m not leaving the surgery until you have made that referral.’ Once I reached the neurologist, he was excellent. He never once denigrated anything I had to say. I never suspected I had Parkinson’s though. I’d only ever seen Parkinson’s on geriatric wards and I wasn’t geriatric.

Diagnosis was hard. My daughters were both still at school and of course it’s had a massive impact, but I tried to be as responsive as possible to people in my life who may be affected. I carried on being a dad the best way I knew how. Parkinson’s doesn’t change that.

What advice would you give others struggling to get a diagnosis?

You know yourself better than a doctor and do not give in – trust yourself. If you believe something is going on, it probably is.

You do a lot of volunteering and advocacy. Can you tell me more about that?

I volunteer for anybody who’ll have me! I’m an ambassador for Parkinson’s UK. I remember when I was diagnosed, I went into local Parkinson’s clubs and felt that they weren’t representative for my age group. Support must be targeted – so we set up our own club with no rules, and we meet once a month. It’s nice for us to get together and we also support those newly diagnosed. I remember once a friend was newly diagnosed – he arrived and burst into tears. That’s why we exist.

I’ve also done some campaigning and TV interviews for the Neurological Alliance, and I’m on the mental health focus groups for Parkinson’s UK. I also have been involved with political campaigning!

What key message would you like to give people with PD?

Trust yourself… and trust the Parkinson’s community. They are the most helpful, supportive group of people I’ve ever met. There’s always someone who will say, have you got Parkinson’s? Do you need help? You don’t have to prove anything except that you’re not very well and you don’t like it that much. Finally, I’d say that people in our position need to be good to themselves and care for each other. The general populous have very little understanding of the depth and range of the condition.