Penny Kustow


Age diagnosed: 61

Specialist interest: Involvement

Symptoms had been creeping up for some time – I lost my sense of smell years before but assumed it was genetic as my father lost his in old age. When my right arm/hand stopped obeying me I visited the GP who had no idea what was wrong with me and sent me to a plastic surgeon specialising in hands.  I was still working with my husband in our own business but retired 2 years later.  Still busy though, both helping with grandchildren and trying to keep myself active.

I spend time most days exercising – the best option being PD Warrior classes, as well as PD Dance classes, but I also go to Tai Chi and Yoga. All these things make me feel empowered and I like being able to encourage newly diagnosed people to join a local class.

I became involved with CPT after hearing Tom Isaacs speaking at the local Parkinson’s UK branch.  I was completely inspired by his positivity and told my husband, Paul, that I had fallen for another man! We attended a research meeting and I decided I was going to volunteer for any research projects that wanted me.  I’m now involved with the Discovery Project out of John Radcliffe Hospital, the Rhapsodi project and the Retinal Study too.

The biggest thing I’ve taken part in was the Exenatide Drug Trial under Professor Tom Foltynie.  This was demanding but it felt so worthwhile. As a result of this I was on the Jeremy Vine show with Professor Foltynie last September answering questions about the trial.  Recently I’ve taken part in a Webinar which had 3 participants in the USA and me on holiday in a caravan in Cornwall whilst Tom Foltynie was in London.

I was also part of a promotional film made to attract more large donors to the cause.

We both enjoy taking part in Focus Groups in the Baker Street offices and I think that sharing experiences with other “Parkies” is really helpful.

The one thing in the world I would want to change is that people are respectful of one another, regardless of race, religion, colour, disability or sexual preferences.

I’d commend anyone with Parkinson’s and their nearest and dearest to involve themselves with their local Parkinson’s groups and charities. Learning about research projects and clinical trials and offering oneself as a participant is a tangible way to contribute to the huge efforts being made, by so many people, in so many places, to find a cure .

I read everything I could about PD when first diagnosed, but still the best advice was in Tom Isaacs’ leaflet offering the Ten Top Tips for PwPs by PwPs.


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