Goal setting in the time of neurodegeneration

FireworksThe end of another year is approaching – always a good time for reflections, evaluations and decisions… or…?

I have never made any New Year’s resolutions and I have only recently started setting goals for myself.

I remember a discussion I had with my younger brother on a summer’s night probably around 20 years ago. We were in the attic of our grandparents’ summer cottage in the Swedish country side having a chat about “life, the universe and everything” before going to sleep on our beds among the spare furniture that were stored up there. Both in our mid-twenties, we were faced with the scary wonders of adulthood, including decisions like: “What sort of job do I want?”, “Where do I want to live?”, “Do I want to start a family?” etc. I  think that both my brother and I had found our first jobs after university at that time and I remember my brother telling me about his goals in life, how he was planning to be married and have children within, I think he said 10 years time. When I told him that I had not made any such goals for myself, he was very surprised. I was also surprised, but for a completely different reason. My surprise came from realising that other people had different possibilities in the way they saw their lives. It had never occurred to me to set goals for myself, due to the fact that I already at that early age knew that my body wouldn’t always do what I asked of it. I simply didn’t see any point in setting goals when I wouldn’t know what I would be able to do even a month later, let alone a year.

I didn’t plan my life, life more or less happened to me. At times I would really struggle with walking, I would move really slow and fine movements, like buttoning buttons or tying my shoelaces, were a challenge. Somewhere around this time, the implications of the diagnosis of generalised dystonia that I was given in my late teens, started to hit me. I had just started taking medication, which gave me some relief from the tension in my muscles and gave me a slightly more even gait. However, I was in no way in a position to feel confident enough to make plans for the future…

In the year 2000, this all changed. My neurologist had read about a type of generalised dystonia that responded well to levodopa, a medication mainly used for Parkinson’s disease, and he suggested I try it. He gave me a schedule for slowly increasing the dose until I could notice an effect, and boy, was there an effect!!! I won’t bore you with the details, but in short, my life was fundamentally changed! For the first time since I could remember, I could actually move without feeling like I was walking in water up to my neck, my fingers were suddenly very agile and I was the happiest person alive!

The mobility the new medication gave me, led to new ideas and wishes in life, wishes I hadn’t known I had and in January 2003, we had a daughter, a beautiful baby girl. Born nearly three weeks early, she was very small but with a strong will and she is still, almost 11 years later, equally impatient and strong-willed. Our lives changed forever and we loved it!

Later that same year, I was told by another neurologist that I didn’t have generalised dystonia, I had Parkinson’s disease… Parkinson’s disease… It felt like I fell down into a black hole and I have my darling daughter and her father to thank for making me realise that I had so much more to gain from digging my way back up again than staying down there.

As you can imagine, being diagnosed with a neurodegenerative disease that is very much associated with older people at the age of 32 didn’t really promote goal setting activities… so it took me a few years until I felt confident enough, but here is the result of my first attempt at written goal setting:

Mål 2010-07-10

In translation it reads:

“Goal setting for the first time, 12 July 2010

Goal for the summer (before 19 August):

Learn to walk my tightrope properly

Get my priorities right

Longterm goal:

Never have to have a DBS

Be able to make a living out of my interest for Parkinson’s disease”

I actually think I have reached a few of them in some way, we’ll see what next year brings. Maybe this is the time for my first New Year’s resolutions?

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10 thoughts on “Goal setting in the time of neurodegeneration

  1. This is really interesting – because I met you AFTER those first goals became possible, and you’re the LAST person I’d ever think of as having no goals, no purpose!

    I’m glad that Susannah Fox’s post brought me here. Her post also cited Vic Strecher, who just popped up in my inbox today! What’s going on here? And his odd new book is about philosophy and purpose … growing out of his daughter’s accidental medical death.

    And then there’s the new essay in Esquire by Roger Ebert’s wife, about his day of passing. On Facebook, my good friend Lucy Jo Palladino PhD noted the words of Ram Dass: “We’re all just walking each other home.” He was talking about how we’re all here for a limited time, on the journey together, in one sense or another.

    And that ties to my conversation with Strecher this morning, in which he (a philosophy instructor) cited authenticity, which we agree is greatly heightened when a person discovers that the game is over, or might be soon. Seems to me that perhaps that’s what happened when you realized your impending decline, and then got liberated by it, to be fully alive while you are alive.

    Rock On, Sara! Boogie through every moment of joy you can find!

    1. Thank you Dave, I hadn’t really realised just how much my outlook on life has changed in these few years until I wrote this blog and your comment further emphasised that to me. I am so very glad for all the amazing people I’ve met since I found my purpose in life and YOU are one of my biggest role models! Let’s rock on together!

  2. The highest and best goal, perhaps the ONLY goal, is to live out loud and fully. That you have done, are doing, and will continue to do, so you’re ahead of most of the rest of the universe there.

    You could not be where you are without determination, without intentionality. You’re a beacon for many other people who wrestle with “a thing” – be it Parkinson’s, or any other degenerative condition.

    Like Dave said, rock on, Sara. Keep living out loud.

    1. Casey, you are living proof of your own advice! Thank you for making me feel so welcome at Medicine X and hope to be there again next time!

  3. Sara, thanks for sharing :) Having met you and doing this coaching process with you is something I am very grateful for. You are not only goal oriented direction driven but you are also a very strong and inspiring woman, who is living her purpose on a daily basis. Keep it up :)

  4. Sara
    Your goal should simply to be you
    As a pwp who has struggled to come to terms I think you are a shining light
    Go well be well

  5. Hi Sara, We just met today, a good reason to look into your blog. Having lived with my husbands brain tumor, knowing the effect it has, I had a colleague actually sitting next to me and asking where do you want to be at the end of 2013. Being able to plan is a luxury, even the notion of being able to do so had faded. I did take every tiny opportunity I had with both hands, and enjoying that to the fullest possible at that point in time. You do know what is important and where you want to go, you just don’t know what is going to happen next or not and how much adapting, swallowing, creativity, knowledge searching, trial and error and so forth is required. Knowing that time and energy are scarce has on the other hand led to a few pretty amazing more than rememerable events and results. Thankful for seeing a glimpse of yours. Looking forward to meeting again! Petra

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