Persevere, make a contribution and be proud in 2018.
So it’s 2018. How was your Christmas? Any New Year’s resolutions?
The period of time between the 27th December and the early days of January is when I feel deflated, reflective and then hopeful, enthusiastic. Like anyone, this is probably how most of you reading this have probably felt like — at some stage. This year was no different, but for my physical condition which took centre stage, affecting my wife, children, job and family — not to mention the commitments we had made to host, entertain and feed our large exended family over Christmas.
I spent most of December at home, absent from work (not for a sniffly cold, I might I add) only venturing out a handful of times — in most part to visit the hospital for clinic appointments accompanied by my wife or father in-law. I have driven my car maybe once or twice, on short trips of no more than a few miles to collect my 4 and 6 year old children from school, seen the inside of a supermarket maybe a few times and not much more really.. most of which I wouldn’t have managed without my wife and children, my fantastically caring mother and father in-law (truly grateful for all they do). In all, December was the most physically challenging month of my life, so far.
I spent the months in the run-up feeling gradually becoming more and more lethargic, un-producutive and generally less useful to everyone who relies on me. Parkinson’s, I felt, had finally caught up with me.
I had burned the candle at both ends for 6+ years, knowing I had Parkinson’s, having continued in my employment at a local 6th Form College (this January marking 10 years of employment there) started a family, had the holidays I didn’t experience growing up (being 1 of 6 children, money was tight) with my children and wife, enjoyed some of material things that I had always wanted — you know, life.
More widely, I had contributed a lot and achieved a number things as an advocate (with the suppport of many pwp’s, my family and employer) within the Parkinson’s community, of which I am really proud of. Particularly last year:
- #UniteforParkinsons — April 2017
2. ‘This is me at 35' as part of Parkinson’s Awareness Week.
3. Being awarded with the Alex Flynn Award by the Cure Parkinson’s Trust.
“David’s profile in the Parkinson’s community has gone from 0–60 in 3.2 seconds. He is a fantastic ambassador whose actions are always for the greater good rather than being individually motivated. I have no doubt that David will become a legend of Parkinson’s advocacy”
Tom Isaacs — President & Co-founder, CPT
4. Representing the Cure Parkinson’s Trust as part of the BBC’s Lifeline.
5. Becoming a World Parkinson’s Congress Ambassador.
In the summer of 2017 I was named as one of 16 Ambassadors, globally, to represent the Parkinson’s community and to contribute to the 2019 WPC in Kyoto, Japan — of which I am immensely proud and honoured! Lots of work to do in the next 15 months in the run up to June 2019!
Sadly, my friend and fellow Parkinson’s advocate never got to see — which he would have been really chuffed about.. which takes me to number 6.
6. A Perfect Day: A Tribute to Tom Isaacs by the Parkinson’s community.
In December 2017, the tribute was featured on Parkinson’s Life, which is part of the EPDA, featuring the names of the many people who took part — filming in locations across the world (many on summer holidays at the time it came to contacting them). What I’m most most proud of was that not one person said “no”.. a testament to Tom’s everlasting appeal, charm and influence on many people within the Parkinson’s community. Sadly missed.
Which brings me back to now, just over a week into January 2018. I look back at 2017 feeling proud, and I look forward with a renewed sense of optimism and hope.. of faith in what we the patient community might achieve, receive and in 12 months look back and be proud to have achieved on a personal level - in terms of their own contribution to whatever area of ‘Parkinson’s’ they feel that they can.
Final word
I really believe that there has been no better time to have Parkinson’s. Not only because of the work going on in research, of better treatments etc, but because of the fact that we live in a technological age with access to patients and patient organisations across the world.
In this digital age and being part of this ‘parkinsons community’ means we can do this:
Here is my simplistic advice (take it or leave it).
communicate with other people with Parkinson’s and support eachother inspire others through your own actions
educate society, pharma, scientists, medical professionals, employers and more in this process.
influence research and development by learning about the Science of Parkinson’s (here is an excellent place to start).
A word about the PD Charities: Parkinson’s charities exist for us, because of us, because of parkinson’s — to support people living with it, lifestyle and exercise, raising awareness and education, to fund and research for better treatments, a cure and so on.
Although it is so important to express your own views and share your perspective, as varied and as different they each are individually (like the symptoms and progression of PD itself), we should support what they (the charities) are doing well for us and for those yet to come, to be diagnosed. We all have a role to play, a responsibilty to do good — if we choose to put ourselves ‘out there’.
…if we didn’t have these charities and patient organisations — what would we have? — as patients? Progress is progress.
I really feel that the patient community and also a great number of PD organisations, in the six years I have been diagnosed, to be a more positive, workable force, with a can — do approach to the condition (I can’t vouch for everyone and everything — this is a generalised view, is just my opninion but I think its true).
How different it must have been for patients like me, 100 years ago?
Much has changed.. yet much hasn't. As my friend Dave Clark so rightly put it at the weekend on a Darts Podcast; we are still taking medications designed over 50 years ago.
The 1960’s was the decade that the first drug to treat the symptom of Parkinson’s was tried and tested on the public with some success — being used as the ‘go to’ drug from there on; it was was and is Levodopa — used to treat dopamine deficiency in the brain. In the 50+ years that have passed since, the worlds population have witnessed expansive strides in science and technology never imagined — yet the treatment of Parkinson’s (although I know I will be criticised for yet another sweeping statemtent — wait for it ..) has not changed dramatically in this time. But I am hopeful that major discoveries and new approaches to this and other diseases will happen in my lifetime!
But like most things in life, progress can only happen if people work together to reach a common goal — whatever it may be.
There are millions of others on the same planet.. they too living with chronic conditions such as MS with similar needs and struggles.
They too have hopes of better..
Better treatments, better care.. a cure?
Whatever it is, these things will surely not happen overnight..
There is a wealth of awareness and education online..
Don’t let Parkinson’s be the same as it ever was.
Just get involved:
You don’t need to know everything about the inner workings of the human brain to be part of the global community of pwp doing whatever they can to help. You just need your voice and dedication. Be part of the solution, the think-tank, the research group, the clinical trial — whatever.
Use your experience to help others who may need it. I am learning all the time.
What I do know is that engaging with other people ‘like me’ was the best thing I ever did.
It opened up a whole network of support, for me.
Make 2018 a year to do what you think you can’t do.
