- · Receiving a diagnosis of Parkinson’s is a pivotal moment in a person’s life. As clinicians, the way we offer the diagnosis has a deep and lasting impact that will be remembered, not only by the individual, but by their family for decades. I heard some wonderful stories of good practice, where clinicians had taken their time, been thorough and provided a supportive and accurate diagnosis. Others unfortunately had not been so lucky, and had the diagnosis changed many times or left totally unsupported after a brusque diagnosis. I could only apologise for these experiences. I did also reiterate that Parkinson’s is a clinical diagnosis, with no perfect test in life, and the evidence suggests that even the best experts get the diagnosis wrong 15% of the time.
- · So many people last night spoke of the power that comes with acknowledging Parkinson’s, not only to themselves, but to others around them. Telling the ‘tutter’ behind you in the queue at the supermarket that you can’t ‘hurry up’ because you have Parkinson’s changes the shopping trip from being an ordeal to a much more pleasant affair.
- · Family members (and individuals with Parkinson’s) are often relieved by the diagnosis – at last an explanation for all those symptoms, and “at least it wasn’t something else”
- · When we discussed the benefits and problems with moving the diagnosis earlier in the disease process, there were not many good things to hear. Too many people suffer at workwith changes to their jobs, reduced hours or even face unemployment as a result of the diagnosis. Others struggle to come to terms with the diagnosis for some time and suffer psychologically, which could be worse if there were fewer symptoms to make it ‘real’.
- · However, many saw a positive aspect to learning the diagnosis earlier. This would offer an opportunity start engaging with exercise which has been shown robustly in research and very definitely in the community last night to have a profoundly positive impact on mood, thinking, movement and quality of life. It would also help people make appropriate life decisions, especially regarding work, pension, travel: living the life you want to live regardless of the Parkinson’s.
- · When I asked similar questions but in the context of available treatments that change the course of the condition, the group was unanimous: tell us as early as possible!
I was also delighted to share with them (and you, dear reader) this link to Parkinson's TV - an English language version of the amazing Dutch videos created by Prof Bas Bloem's Parkinson'sNET in the Netherlands. Another example of real partnership between people with Parkinson's, researchers and clinicians - answering the questions you have, as well as some that you didn't know you wanted to have!