As you say, it’s what you do. You always must have been a high-achiever and Parky’s isn’t going to change that. My Pilates teacher always says “Do what you can, with what you have.” Not a bad rule to live by?
I sometimes think that for every Parky you see on social media or engaged with their local community, there are many more that you don’t see. My 79-year old mother is a good example: she struggles with every household task and barely gets out of the house let alone go to a local Parky meeting. Even her neurologist was pretty dismissive when I took her to her last appointment. She is one of many thousands of ‘forgotten’ Parkies.
Of course those of us with energy and motivation should continue to push things forward. But I think it’s important to remember that we represent many others who can’t speak for themselves…
A comment from a carer. Still work into my 60s and worked much longer hours in the three years after my wife’s diagnosis. I realised that work was a distraction and helped me to retain my identity as “me” as opposed to that of a carer. Work can do a lot more than just “bring in the bacon”!
As one of the people you phoned in your packed schedule, I can truly say I would never have known you were so pushed for time. You made me feel that my opinions really counted. Thank you!
I met Mark Mardell when I was first diagnosed and when I told him I was a writer he ominously advised me to write as much as I could while I still can. I've had a Daily Mail Book of the Week out and and have another poised for publication since my diagnosis nearly two years ago. Haven't been afflicted with apathy yet, but the fatigue sometimes is debilitating.
Im so glad you aren't giving up yet, you do a great job and all you take on.
I have low energy levels and get very crabby when I've overdone it. I find a mug of tea, a small snack and a book to read does the trick and I try to pace myself and take a break before I get crabby.
If anyone has read to the end of this, please sign the Parky Charter!
I have been diagnosed with Parkinson’s 6 years ago too. I have turned it into a positive by joining my local group now the secretary. Organising and campaigning keeps me going. Despite the apathy and insomnia which is hard, I do what I can. Keeping busy and active has kept my depression at bay. I also run a young persons with Parkinson’s group. Plus I have spoken to neurologists at a London hospital conference about depression. And met MP’s in Parliament to get them to try and understand Parkinson’s and the effects. As long as I am breathing I will keep raising awareness and campaign for better help for people with Parkinson’s.
Thank you to the movers and shakers for all you do❤️ where can I get the t shirt with the qr code on for your amazing campaign the Parky charter’ please? Give Sophie a stroke from me xxx
Really interesting article. I would suggest that the reason you are still working has less to do with it being simply what you do, and more to do with who you are. Having a compelling purpose as you do to shine a light on all things Parky related gives you a reason for being - and gets you out of bed every morning. We all need that, regardless of whether or not we have Parkinson's. In fact, purpose and service to what is sometimes called an ultimate concern keeps people going for longer. Just look at David Attenborough.All power to your writing and podcasting etc. It's badly needed and makes a massive difference.
Down to earth and inspiring. Always on the ball and insightful. That's Rory Cellan-Jones. BTW, your grand kids are adorable and Sophie is going to be putting on weight with all those treats. Lovely to see.
I have apathy and work full time as I have no choice financially, and I know I would just collapse inwards if I stopped.
It's a slog and means I often lack the energy or enthusiasm for anything else.
You just need to focus on the next thing and force yourself to do it, if you can work out what it is you need to do (my enthusiasm for planning is limited)
As you say, it’s what you do. You always must have been a high-achiever and Parky’s isn’t going to change that. My Pilates teacher always says “Do what you can, with what you have.” Not a bad rule to live by?
Thanks so much - that means a lot
I sometimes think that for every Parky you see on social media or engaged with their local community, there are many more that you don’t see. My 79-year old mother is a good example: she struggles with every household task and barely gets out of the house let alone go to a local Parky meeting. Even her neurologist was pretty dismissive when I took her to her last appointment. She is one of many thousands of ‘forgotten’ Parkies.
Of course those of us with energy and motivation should continue to push things forward. But I think it’s important to remember that we represent many others who can’t speak for themselves…
A comment from a carer. Still work into my 60s and worked much longer hours in the three years after my wife’s diagnosis. I realised that work was a distraction and helped me to retain my identity as “me” as opposed to that of a carer. Work can do a lot more than just “bring in the bacon”!
As one of the people you phoned in your packed schedule, I can truly say I would never have known you were so pushed for time. You made me feel that my opinions really counted. Thank you!
I met Mark Mardell when I was first diagnosed and when I told him I was a writer he ominously advised me to write as much as I could while I still can. I've had a Daily Mail Book of the Week out and and have another poised for publication since my diagnosis nearly two years ago. Haven't been afflicted with apathy yet, but the fatigue sometimes is debilitating.
Im so glad you aren't giving up yet, you do a great job and all you take on.
I have low energy levels and get very crabby when I've overdone it. I find a mug of tea, a small snack and a book to read does the trick and I try to pace myself and take a break before I get crabby.
If anyone has read to the end of this, please sign the Parky Charter!
https://petition.parliament.uk/petitions/713714
One day with one job to do. One day off completely. Overdoing it could accelerate deterioration. Please don't risk it
I have been diagnosed with Parkinson’s 6 years ago too. I have turned it into a positive by joining my local group now the secretary. Organising and campaigning keeps me going. Despite the apathy and insomnia which is hard, I do what I can. Keeping busy and active has kept my depression at bay. I also run a young persons with Parkinson’s group. Plus I have spoken to neurologists at a London hospital conference about depression. And met MP’s in Parliament to get them to try and understand Parkinson’s and the effects. As long as I am breathing I will keep raising awareness and campaign for better help for people with Parkinson’s.
Thank you to the movers and shakers for all you do❤️ where can I get the t shirt with the qr code on for your amazing campaign the Parky charter’ please? Give Sophie a stroke from me xxx
Apathy can be the same as atrophy in some PWP including myself
Just getting used to substack and love the bite size notes. We've got to keep writing and talking about pd to anyone who will listen.
Really interesting article. I would suggest that the reason you are still working has less to do with it being simply what you do, and more to do with who you are. Having a compelling purpose as you do to shine a light on all things Parky related gives you a reason for being - and gets you out of bed every morning. We all need that, regardless of whether or not we have Parkinson's. In fact, purpose and service to what is sometimes called an ultimate concern keeps people going for longer. Just look at David Attenborough.All power to your writing and podcasting etc. It's badly needed and makes a massive difference.
I am amazed at how much you do, and how enterprising your group is. May it continue!
Down to earth and inspiring. Always on the ball and insightful. That's Rory Cellan-Jones. BTW, your grand kids are adorable and Sophie is going to be putting on weight with all those treats. Lovely to see.
I have apathy and work full time as I have no choice financially, and I know I would just collapse inwards if I stopped.
It's a slog and means I often lack the energy or enthusiasm for anything else.
You just need to focus on the next thing and force yourself to do it, if you can work out what it is you need to do (my enthusiasm for planning is limited)
Well done Rory, you are amazing! Keep going.