Ian O'Brien was 38 when a neurologist told him, within a couple of minutes, that he had Parkinson's disease. For about a year before that he had been on antidepressants for anxiety and depression, and for two years he had been finishing sentences with his left hand holding his right. His first question was whether Parkinson's could cause the anxiety and depression. When the answer was yes, he says it felt like a weight off his shoulders.
Now 46 and nearly ten years in, Ian, who co-founded EOPD Ireland, tells Laura what early onset Parkinson's is really like: medication that now lasts him about an hour, switching "off" like a light, planning his day around tablets and protein, and the evenings his daughters help him get ready for bed. He talks about telling his eldest with a poem and letting her interview him on camera, and about Parkinson's being one of the factors in his recent separation.
He also explains dopamine in plain language, the gambling and compulsive behaviour dopamine agonists can trigger in some people, deep brain stimulation, why exercise should be the first thing a neurologist mentions, and why talking to other people with Parkinson's has been his best education of all.
Depression came first
His first symptoms were anxiety and depression, and he spent about a year on antidepressants before a physio friend told him to ask his GP for a neurologist.
The movement signs he missed
For around two years his handwriting shrank and stopped mid-sentence, and he would reach across with his left hand for the keys in his right pocket.
A diagnosis can bring relief
Ian says he almost wanted something physically wrong with him to explain how he was feeling, and he walked out of the neurologist's office feeling better.
Medication is a daily balancing act
Levodopa now lasts him about an hour, and eating close to a dose, especially protein, can stop it working, so he plans tablets, meals and work around the times he needs to be on.
Exercise should come first
He says neurologists don't always lead with it, but high-intensity exercise made him feel almost as if he didn't have Parkinson's, and he has got worse since slowing down.
Your whole family gets Parkinson's
He regrets being a bit selfish at the start and sees the condition as one of the factors in his recent separation, though he and his wife still raise their girls together.
Telling his daughter with a poem
Ian read his eldest a poem about Parkinson's, then a week later let her interview him on camera with questions she wrote herself.
Life isn't over
He knows people living well 20 to 30 years after diagnosis, and his advice to anyone newly diagnosed is that you just need to make adjustments.
the charity for people with early onset Parkinson's that Ian co-founded
the national charity supporting people with Parkinson's
the Parkinson's research foundation Ian mentions
free support, any time, if you are struggling
00:00 — Welcome back to the podcast
02:17 — Anxiety and depression came first
04:16 — "It was like a weight off my shoulders"
06:30 — The movement signs he missed
09:18 — Why exercise should come first
10:22 — Parkinson's and dopamine, explained
12:17 — Levodopa and planning the day
14:40 — Telling his daughter with a poem
17:15 — Dopamine agonists and compulsive behaviour
24:59 — Playing soccer for Ireland
28:15 — The whole family lives with it
33:44 — Deep brain stimulation
37:00 — Setting up EOPD Ireland
38:52 — "Life isn't over"
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