Two years on from being diagnosed with Parkinson’s Disease

The experience of my diagnosis with Parkinson’s and the pandemic are inextricably intertwined as they happened so close together. Both were a shock and because they were a shock, they have made me look at life afresh. I have heard so many people who have had life changing diagnoses report that in the midst of the challenge of the condition, aspects of their lives were transformed in positive ways because they were now so much more alive to the moment and awake to what matters. I recall some years ago setting a personal intention that I would do what is possible to undergo this sort of transformation without the diagnosis! And of course, we never know what will show up in our lives.

Predictably, the journey though these last months has been a personal growth accelerator and although I would love not to have Parkinson’s, in truth, I wouldn’t trade that for the perspectives it has birthed.

I was diagnosed January 2020. Retrospectively, I can trace that several low key, ongoing, body troubles were part of Parkinson’s. But simultaneously, I was active and, in many ways, very healthy. The spread of a trembling tremor in my leg up my whole left side whilst on a New Year holiday in the Cairngorms with friends was the tipping point that took me to the GP. I was concerned and did hold the possibility that this was potentially serious, but I deliberately didn’t give my mind the space to dwell on unknown possibilities. The referral to a neurologist and the diagnosis came jarringly and unexpectedly soon after. Looking back at the photos of that holiday in the Cairngorms, it is strange to see the ‘innocent’ version of myself in the snow on top of a Munro. Having a diagnostic label brings a whole different layer of meaning to experience.

February 2020 was an intense month. I was deeply touched and held by the loving support of family, colleagues and friends. My children came home so we could be together as a family the weekend after the diagnosis – they were of course processing the shock of this transition too. There were tears and long conversations, and it was a strangely joyous weekend with a lot of laughter and love. I thought long and hard and reflected with colleagues about whether it was appropriate to keep with my teaching engagements for that month. Given the proactive support and care I was surrounded with, I did go ahead and coteach a teacher training in France and a 3-day relational mindfulness residential in Germany – and appreciated the immersion in communities of practice during that turbulent time.

In March 2020, I had a longstanding plan to attend a month-long retreat, carefully scheduled to mark our family transition of my youngest turning 18, and the beginning of a new phase in my life.  Another lesson in holding plans and expectations lightly! I wavered about whether to go on the retreat at such a vulnerable time. I was feeling raw and naked, and felt the pull towards familiar comforts.  I shared my doubts with the retreat lead, Gregory Kramer, – and his response sliced through my doubts. The subject of the email back to me was ‘please come as you are’ – the visceral relief at hearing this invitation was tangible. A key thread of inquiry for me over these months has been – how can I truly ‘come as I am’ to the moment. In this I discover the well-rehearsed habit of subtly and sometimes not so subtly overriding how I am feeling in service of showing up for my work and my family. Of course, there are times when this is called for in the moment – but as an embedded habit it is clearly not sustainable nor healthy.  

The retreat was a powerfully steadying container within which to ride the roller coaster of stress, grief, sadness, and loss. I feel tremendously grateful for that period of practice which gave me a sustained period to digest. I had swathes of time to feel the tremoring in my body, and to explore ways to work with it. I experimented with multiple different ways of sitting – piling heavy cushions on my left leg and arm to see if I could weigh them down. In the end as Naomi Shihab Nye says – ‘it was only kindness that makes sense’ – holding my shakiness with loving sensitivity and care and allowing myself to feel the loss of stability and ground. Within this container, I could recognise how my symptoms were highly sensitive to energetic currents in my body, and I could begin to learn how to inhabit this new sensory field.

And then during this close in exploration with my phone handed in, the world moved into lockdown. It was very shocking to emerge into this surreal unprecedented pandemic reality. We hung out for as long as was possible before the final scramble to get home. Coming through the vast emptiness of the usual busyness of Schiphol airport gave me a sense that the apocalypse had happened – and I was one of the few members of the human race still out and about!

In a strange way, the conditions of the pandemic lockdown gave me some of what I needed at that time. It made it easy to stop travelling, to start exploring new ways of working, new life rhythms that took my new reality into account. In other ways, as for many, it was hugely challenging. There was so much pressing on us: the urgent need to step up to sustain our work amid the disruption; suddenly living back in a full household with several of us working online; the need to support our children in navigating their interrupted life plans; and the wider world concerns about the impact of the pandemic on vulnerable communities.

And through these months my tremor was a daily presence, my left foot had a strange pulsing twisting cramping life of its own; the muscles down my back and in random other places were perpetually moving into spasm; my sleep was disrupted and unpredictable; fatigue was a strong and at times overwhelming presence; I felt uncomfortably hot, then uncomfortably cold. The long hours of desk work and zoom teaching were deeply challenging and clearly unsustainable. I began to doubt that I would be able to continue in my work. This felt like loss upon loss.

The appointment when I was diagnosed was a case study in bad practice. I was told that as this is an inevitably degenerating condition, that there was no point attending to issues such as exercise and diet, and that it is advisable to hold of taking medication for as long as possible. The best thing I could do was to get on and enjoy my life as best I could and come back in a year’s time for a review. I look back now with sadness at the lack of supportive engagement I had in those early months to help me navigate and to look at options. All the personal research I did on Parkinson’s strongly contradicted what I was told in that first consultation. An online Parkinson’s exercise process that I joined became a deeply important daily anchor. I settled into a daily rhythm of guided exercises and discovered ways of exercising that evidence indicates could influence my neural circuitry. Feeling myself as part of a new community was also a significant step – I now belonged to this new tribe - people with Parkinson’s.

The health service was on its knees responding to the pandemic (though the reality was that many of the routine services for conditions such as Parkinson’s were shut down unnecessarily). I did my own research and found a neurologist who approaches their practice from a whole person perspective, and I paid privately for a consultation. My appreciation for the conditions of my life that allow me to connect with the care I need is profound, and with this I feel deep concern for the many who are living with chronic conditions without good support. The experience of being heard, acknowledged, and met where I was at by this new consultant was a deep and profound relief. He was very clear that exercise is an important and key ingredient. He also wanted to get me on medication because the latest thinking on this shows that medication can help people to feel as well as possible now; that this in turn can help us to engage with exercise and other things to support our wellbeing; and that in turn this can slow progression. He did some expectation management with me that the sort of Parkinson’s I have (tremor dominant) does not always respond well to medication. I therefore took my first tablet with low expectations, but in less than an hour it was like beautiful cool breeze was blowing through my system – I was amused to read that one potential side effects was ‘an unusual sense of wellbeing’. It’s taken a while to calibrate the medication and find ways to reduce the side effects. Medication hasn’t eliminated Parkinson’s symptoms, and I know that the disease process is still unfolding, but the reality is that it is life changing for me day-to-day.

What am I learning from all this? I know more vividly that life for all is a terminal condition – that my situation is at a fundamental level no different to the situation we are all in. But the diagnosis has brought home to me the felt reality that my capacities and my days are numbered. I feel extraordinarily blessed to have had this advanced warning, and with the medication working for now, I am relishing the reprieve. I’ve discovered more deeply that I can trust the process of experience – that anxiety, fear, sadness, grief, stress and so on will and do arrive – and that they pass through – and they are not inherently dangerous or threatening. I still feel waves of grief and loss for the changes in my body, and for the future I hoped to have – but I sense these currents as waves that pass through – they don’t seem to get stuck in my system.

I feel grateful that my symptoms are currently not big enough to significantly erode the quality of my life day to day, but they are big enough to keep me remembering that Parkinson’s is real. The questions: what really matters? and where do I truly want to put my energy? are daily questions that genuinely inform what I say yes to, and how I engage. The heightened sense of my vulnerability has woken me up more deeply to beauty, connection and love. I feel a greater sense of freedom. Maybe the sense that I have less to lose helps, but I notice I have more courage to speak my truth and to open up difficult conversations. Patterns that I am deeply familiar with through my life are evolving and shifting naturally – my entrenched work ethic (which has some benefits but significant shadow sides) is fraying around the edges in wholesome ways; my overdeveloped sense of responsibility is softening…

I have also learnt that I have a deep love for life – I really want to be alive, and to be well enough to engage in and contribute to the world. I feel new energy and inspiration around our work. It is totally uncomplicated to motivate myself to exercise, to eat well, to prioritise rest and to give space to my practice.  I am seeing a Functional Medicine doctor alongside my mainstream NHS care, and this has taken me on a fascinating journey to discover on a metabolic, cellular level what is well within my body and what needs supporting. I am also seeing a counsellor regularly to help me reflect and stay connected to the tenderness of this journey. I recognise my well-rehearsed tendency to dust myself down, make the best of things and push through. I’m clear that wellness needs to include making room for the less vocal tender, vulnerable aspects of my being – that keeping in connection with these quieter voices is important in ensuring that this journey is in the service of awakening. I don’t know how things will unfold for me going forward, but I do have a basic confidence that in some way it will be workable – and that what is happening to me is part of the natural order of things. 

And next week I head offline into quiet time for another month-long retreat. I am curious what will unfold in this time!

Rebecca Crane,