I was delighted to be invited, last week, as Guest Speaker at my local Doctor’s surgery, here in the Suffolk Coastal area. The surgery, which I hold in very high regard, is also a training centre for Trainee Doctors. My task was to speak with the Year 3 Trainees from Cambridge about my diagnosis of Young Onset Parkinson’s Disease (YOPD). I was a little nervous, as I’d not had any information about what to expect on the day; beyond a Receptionist informing me, by telephone, that it would likely only take half an hour.
I am used to having trained well established and fully qualified Doctor’s around the treatment and prescribing regimen for patients with drug and alcohol addiction, and those with blood borne viruses, in a previous role. Now, I also work with many local Doctors and medical teams around the well-being of those of my clients with extra support needs, subject to client consent, so supporting the development of Trainee Doctors did not worry me. The only discomfort was that, on this occasion, the subject was me!
As it turned out, the planned half hour was, in fact, two small groups each for one hour and with no rest break in between! For a person with Parkinson’s, the unexpected extra time required was tiring and meant that I would have to head straight back to work to run my evening clinic, rather than go home and get an hour’s rest before doing so. That lack of rest between clinics meant that my symptoms may manifest, which I work hard to prevent.
Within the meeting room, which was quite a dour, grey venue, each group of very young looking, polite and friendly Trainees asked me to talk through the history of the development of my symptoms, asking me questions as necessary, through to where I am today in treatment. They appeared a little taken aback that my progression to diagnosis had actually taken twenty years; which is sadly not uncommon for people with YOPD. Sadly, too many young people with Parkinson’s have to take up a long-term battle to have their symptoms taken seriously and to gain access to adequate tests.
While at some points I could feel myself developing an emotional response to telling my story, which I kept hidden, I enjoyed having the opportunity to raise awareness and to teach these young and eager Trainees how to recognise the potential symptoms of Young Onset Parkinson’s Disease.
My aim in taking part was to hopefully be part of changing the experience that the next generation of people like me have in their teens, twenties and thirties. We desperately need more Doctors to have the awareness and the skills to intervene earlier and to provide diagnosis far earlier than the twenty years I had to suffer, when I was seen in previous Doctor’s Surgeries.