Playing Oliver Sacks with my Parkinson's

By gunvant

2 min read

Being both a doctor and a patient simultaneously is a double-edged experience. You're much more aware of the medical understanding and able to interpret the content of new findings. I am my own patient and observing myself has given me insights into the current limitations on its management. However, I am also aware of the reality rather than the rhetoric of every new article that raises hopes of a better treatment.

What to do next?

I have a pretty good understanding of my likely trajectory after 6 years which can seem confronting but also allows me to plan ahead more realistically. I know that Parkinson's disease is probably more than one condition, I know that dopamine is not the real story even though every current treatment is focused on it. I know that basic science research is throwing up as many puzzles as it is answers. I doubt very much there will be an advance in treatment in the next decade even though I remain open to being pleasantly surprised.

So, armed with this understanding the obvious question is what to do about it?

Acceptance and courage

For me it has been to not feel angry that I am one of the chosen (after all, "why NOT me?"), to see life as a gift not an entitlement, to be kind and enjoy the important relationships, to continue to work to improve the lives of others and to see myself as connected to something much larger extending in space and over time, and that my end is no longer an abstract 'in the head' notion but part of my everyday 'lived experience'. I have found the Stoics to be a particularly valuable in facing the challenge.

I feel as a result of all this I have become more courageous and more accepting in the face of inevitable progression. So much so that I chose to end my marriage after 34 years as it was not working and living with someone because I was scared of being on my own with Parkinson's was to live a 'life half lived'. We know we only have a certain amount of quality time left so it's important to be as true to oneself as you are able.

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Chris H. Community Admin
Really appreciate you sharing your experience, <inline-mention user-id="3068408" username="gunvant"/> . Being a doctor and a patient is definitely a unique perspective. I'd imagine ending your marriage was a difficult decision, but it seems like you've made your peace with it. As a doctor, do you feel like more can be done with preparing those receiving a PD diagnosis who aren't in the medical field? Curious to hear your thoughts! - Chris, <a href='https://parkinsonsdisease.net' target='_blank'>ParkinsonsDisease.net</a> Team
1. gunvant Member
 Hi Chris Thank you for your comment and the answer is YES! It is simply too limited in thinking presently. I presented a poster at the WPC19 in Kyoto on my ideas. Currently looking with my old neurologist on seeing if we can develop a more holistic model that is not just focused on motor symptoms. I’d attach my poster if I could. Ending the marriage led to serious concerns about my sanity LOL! Hardest decision I have ever made but one must live by one’s principles.
2. a110ver Member
 Anyway we can see the poster?
not found
Ending a marriage is a result of PD and nothing else? Perhaps Not entirely .
1. gunvant Member
 No of course not entirely but I was not going to stay in a marriage just because I feared being alone with PD. It's been a tough year but as they say 'what does not overwhelm you, makes you stronger' and I want to model to my children how I want them to face challenges in their lives.
a110ver Member
I like your honesty. I feel the same way about Parkinson’s. Making new lies as well as participating in old (34 years) ones doesn’t make it any better. It is what it is. Parkinson’s is Parkinson’s, and a lie is a lie. I totally hate when some patients pretend to be cheerful and encouraging. As for example, one lady was trying to laugh at herself:”Oh, my flip flops are not flip flopping anymore. Ha-ha!” Really? How is that encouraging? And, most important, how is that helpful? When others, who don’t have Parkinson’s, hear those false cheerful statements, they can think:”Oh,Parkinson’s is not a big deal. But to us, who has it, PD is a huge problem. If you’ve developed a foot drop, just say so. There is no need to sugar cover it.
1. gunvant Member
 Thanks a110ver, "it is what it is" as you say. So much so, that I have an interest in both better care AND a better death. I am interested in trying to extend the voluntary assisted dying legislation that was introduced last year in my state. Currently, you have to be signed off as having less than a year to live by two doctors (and I can't be one of them LOL).
ando Member
How thoughtful,and insightful. I really enjoyed reading this.
1. gunvant Member
 Thank you!
terryb Member
I appreciate the honesty and the courage at which it most overwhelmingly has taken this man to see clearly what took me 4 years to come to understand and that is, "we are only given a short time here on this earth to enjoy what God has given us". It's up to us to decide what we want to do with this time. Living day to day being as kind to others as well as to yourself must be a priority we can hold dear throughout this disease if we are to leave something good and great of ourselves behind when we are gone.
1. gunvant Member
 Thank you Terry. It’s not an easy road, I’m one. One paved with fear, doubt and loneliness but also gratitude, sincerity and true companionship.