Being 49 years old, and diagnosed with Parkinson’s at 45, my kids find it amusing that I am referred to as having ‘Young Onset’ PD. In most things, they think I am so far from being young (choice of fashion, taste in music, attitudes, nature of my humour…the list is long). So it turns out that the one thing I am seen as young in, is the degenerative disease I have. Not so cool, I guess, but a little ironic. Perhaps that is an interesting way of framing a topic I have thought about a lot in recent years…Time…
Time in many ways is the same for Parkinson’s as anyone else – we have all the same issues other people have. A person with PD has most of the same challenges whether they be health (we get colds and all other illnesses too), the financial stresses of life (plus some huge additional challenges), emotions (we have families too), etc.
In my nearly five years with PD, time has taken on a different rhythm. For me, it affects people with PD in some of the following ways, some of them seemingly contradictory. I have set out some evolving thoughts below and my initial game plan to address, tackle, or at least approach some of the issues. I haven’t seen much literature on it, so I welcome the discussion.
My summary – Changing moment to moment, yet constantly progressing, we do have the ability to control the beat and tempo.
The disease is with you for life. It is degenerative and the clue is in the name – to me, it is like watching storm trackers during hurricane season. It is advancing relatively slowly, evolving, and you know it will hit land although you have no idea where, when, and with what ferocity (whether as a category 5 hurricane or as a tropical storm). The advancement is, however, predictable in general and through 3/6/12 month check-ups, you see the advancement looking back and often the testament to the advancement is the number and/or the strength of the prescribed medication.
People without PD have the same issue in many ways as old age hits but for many there is the dream/allure of a golden retirement – the type we see in the movies – that is not there for us in mind anyway…we are located in hurricane alley. We, as I have often said, are mourning a lost future we had dreamed of – our caregivers and partners too. It is also, as per recent studies, limiting in both the life expectancy (see link) and the quality of life and I know this is perhaps the hardest thing for people – the inevitable decline – both for the people into late stages and those who see it coming.
Time is also hugely in the moment too – anyone who has read my recent blogs is probably aware of the quite crazy rollercoaster life with PD is and yet for many people living in real pain and fear, time drags at a ridiculously slow pace. In this eternal effort to balance through drugs, attitude, exercise the level of dopamine to what in other people are normal levels, we often miss – we are too high or too low. Dopamine by its most very basic definition impacts mood, movement, sleep, pain and therefore we are much of the time out of balance and that comes with massive highs and lows. I have days when I swing in ten different directions. It certainly makes for interesting stories and adds a certain element of drama to the situation.
The way we use our time is also something that I think about. We so often try to carry on tasks as we used to, clinging onto the world we know, yet things take longer – basic functions like writing, getting dressed, getting somewhere – all these things take longer because the body doesn’t behave the same way. We have to learn to slow down and be more deliberate and for someone like me this is very, very hard.
Buying time – This is a phrase I hear more and more and is partly my strategy. I and most of the people I know with PD are investing huge cost, time, and effort into a ‘slow retreat’ strategy – buying time.
On the one hand, taking preventative measures which slow the speed and pain of onset – for me it includes yoga, exercise, trainers and therapists of all sorts (PT, OT, ST, etc.), acupuncture, massage, mindfulness…all of this has to be done in a constant routine of activity.
On the other hand, it involves following research and praying for the advancement of technology to beat, delay, or lessen the impact of PD. In the Produadopa/Vyalev treatment I am on, I am seeing the fruits of it and I know more is to come.
Lastly, there is strangely the need for many to fill time. As people gradually have to ease back on their careers or take a step back from the full-blown nature of their work, they have to use their time carefully. My late neurologist told me to work for as long as possible because keeping the brain active is possibly one of the best tools for the ‘fight’. So lots of people – many very high performing – need to keep their brains active and this is difficult as the body too often doesn’t permit it.
In this category is the sleep issue I and many others face – what to do with all this time that is usually occupied by sleep. The early/empty hours. This is one of the benefits for me of writing (although I am still performing more than a full-time job).
I am sure there are many more aspects to the topic of time. As someone said to me, days often move very slowly but weeks fly by. Time takes on a relative nature.
“We must use time as a tool, not as a couch.” – JFK
Waiting for time to pass is not my answer. In this ‘fight’ (and I know others don’t like this term – but it is my blog so I get to choose at least here) it is a tool and a weapon that I can use.
Many things are out of my control but I can try to control how I use the currency that is my time and resources and the beat of the music to which my time flows and try to keep it active and positive.
At the same time, I can invest time to plan to preserve precious energy because this is a marathon and not a sprint. I have too many times rushed unwisely and I need to be more strategic in how I live – not multi-task, not overfill my days in the way I used to, pace myself, plan a schedule/routine.
As we head into 2025, I have no idea what is to come. However, I will do my best to use time wisely, be proactive, and set an upbeat yet strategic tempo. Regarding long-term thoughts, I just have to accept I live in storm alley but seek and hope for remedies and learn how to protect/shore up/sandbag my body and mind to the extent I can to weather the storm so it passes more lightly and hopefully later.
**As I am new to this please help me by sharing or forwarding to others so that I can reach out as much as possible **
