Living with Parkinson's

What is it like to live with Parkinson’s? Chris Smith to the former BBC presenter and editor, Mark Mardell, who now makes the “Movers and Shakers” podcast which aims to promote greater awareness of the disease. He began by asking Mark when he realised that something was up…

Mark - I noticed a few weirdnesses about my body. Particularly, I was finding it difficult getting into packaging and I love cooking and I spend a lot of my time cooking. Waitrose's packaging was just defeating me and I thought, 'they're just making this stuff tougher and tougher.' And then we went to stay with an old friend who used to be a physiotherapist and she realised there was something wrong. She told my wife, told me. I realised, after I started Googling symptoms, it was almost certainly Parkinson's and basically had to... not push the medical profession, but I was there before they were, perhaps.

Chris - How did they then pursue it?

Mark - I've been managing it, I think, largely. Obviously the drugs help. The neurologist has put me on various drugs which are the same ones most people have. I think I've learned more from this podcast I do, 'Movers and Shakers:' stuff about exercise, diet, which you don't really realise before and you don't get told by the medical profession, which is a bit of a beef of ours and mine. You go to the doctor and they'll prescribe the drugs and they're asking how the drugs are working, they'll test whether you're working or walking or whatever and if it is getting worse or better. But they didn't actually tell you these vital lifestyle things. I was never a great one for exercise, but I realised how important that is, for instance. It's something that everybody should be told: you do need to exercise.

Chris - Has Parkinson's robbed you of anything that you really loved doing? Do you now think, I just can't see myself doing that or getting the same enjoyment I did?

Mark - It's changed my life quite a lot. Everything is so much slower. Getting up in the morning, getting dressed, getting washed, everything like that. It just takes so much longer. And of course the thing that has really changed for me is my voice and that's had an impact because I've been a broadcaster all my life. My wife was always telling me, 'Shush! Keep your voice down. You're booming all over the place. You're just too loud!' I'm getting to terms with it. I'm having some therapy, but it has diminished me. It's like getting old, but it's sped up. I talked to one neurologist after a podcast and he said, 'Everybody will suffer from Parkinson's by the time they're 90.' They didn't mean literally, but it means the symptoms of being 90 are the same as the symptoms as Parkinson's in many ways. It does slow you down. The one thing I really can't do is typing. That's the double whammy with the voice because I try to use voice software and it comes out like beat poetry.

Chris - What frightens you the most about it?

Mark - Where it ends up. It was interesting, in the recent podcast, we had all our partners in and we realised we all put it in a box and put it away in the back of our minds. Nobody wants to end up not being able to walk or not being able to speak or whatever. How disabled you become, this is super scary, very frightening and you try not to think about it. I enjoy my life enough now. I want that to last as long as possible and to not get there really.