Age diagnosed: 29
Specialist interest: YOPD, Media and Awareness
I was diagnosed in 2011 with Parkinson’s Disease, aged 29. The reasons for sharing my life with Parkinson’s online are so that I can hopefully contribute towards dispelling the stigma around Parkinson’s. It is also to highlight the fact that Parkinson’s affects younger and not just older people. It’s also important to highlight that Parkinson’s Disease has many symptoms which manifest differently, in no particular order, and on an individual basis.
I am now 36 and, like most things in life, wish I knew then what I know now. You may already be aware that in terms of age at diagnosis, I am somewhat of a rarity. Over the past four years I have experienced what it feels like to be such a rarity. I am all to familiar with the obstacles it has presented to me every day and of the need to continually re-adjust ones approach to the ‘moving target’ that is Parkinson’s Disease.
Being diagnosed at a young age inherently means that my journey with the disease will be long and that the challenges this presents will be quite unique.
Ultimately, symptom control is the biggest challenge any person with the disease will face. It’s a complicated matter which involves much more than simply setting timers and taking medications on time.
As the disease progresses, this becomes more complicated and requires regular adjustment with the guidance of a Neurologist in collaboration with a number of other medical professionals; such as a Parkinson’s Specialist Nurse.
For me, almost seven years in, controlling the symptoms of the disease has become less ‘predictable’ day-to-day. This irregularity in symptom control has a big impact on my family life and my career.
However, despite being diagnosed with Parkinson’s Disease, I can honestly say that I am in a great place, mentally. Besides the debilitating physical aspects of the disease, I believe that the only way to continually move forwards is to have a positive, healthy perspective.
I am determined to continue in my efforts to connect with the PD community and to reach out to the newly diagnosed, in the hope that the ‘David of 2011’ can find reassurance in what positives are in existence here in 2018. It’s important to balance the negatives and unhelpful stigma one might experience over the course of your individual journey with the positives.
To do this right we must act collectively, as a community, to keep talking about Parkinson’s Disease. We must all continue retweeting, right-clicking, sharing, copying & pasting and blogging about it, so that we can keep the positives out there for our own benefit and to also raise awareness and re-educate the public perception of PD.
Individually, as very active ‘working age’ people with Parkinson’s, we have a responsibility to put out there balanced, non judgemental perspectives on how best to approach this disease for the benefit of those recently diagnosed and yet to be.
I hope you can join me in this cause.