Making Sense of my Parkinson’s: The European Centre for Parkinson’s

In this three part blog series, I have detailed my journey with Parkinson’s – both in terms of early diagnosis, and more recent treatment and support. My attempts to come to terms with and understand both the diagnosis and treatment led me to explore multiple avenues towards living well. I needed a multi-disciplinary approach, and this search led me to Italy and the European Centre for Parkinson’s.

Why Italy?

I was unable to find an intensive multidisciplinary rehab course in the UK. The course had been well reviewed by previous attenders, and there was excellent information and support from the team in Italy coordinated by Sara. I felt I needed to step back and assess where I was, how was I doing and where were the gaps. You can find more information at: www.TerapiaParkinson.it

What did I experience?

I flew from Stansted via Ryanair – the fare was £8.40 on 30 August at 8am. Executive cars for £70 collected me at 5.30 a.m. I was met at Bergamo airport in Milan and taken to the Centre by Roberto in his taxi – €70. I stayed in the hotel Diana at 60 euros a night with full board. My program was delivered that evening to hotel and all set for Monday morning. Welcoming faces and one-to-one coaching by Nicole Reed were all provided, together with the following:

Monday

• AM: Assessment and examination by Nicole Reed, physiotherapist specialist, covering walking, balance, stride length. Talk and video on principles of rehabilitation by Alex Reed and welcome. The Regen programme works under four pillars of support: medication: psychological, exercise, and lifestyle.
• PM: Exercise your brain and nutritional review.

Tuesday

• AM: Individual therapy with Nicole followed by a review with Alex Reed covering medicines and research. Assessment of walking speed, stride length and balance.
• PM: Nordic walking followed by a full body massage.

Wednesday

• AM: Individual therapy with Nicole and speech therapy with Giacomo Spada.
• PM: Reiki with Igor Montini. Antistress review with Greta – Neurophysiotherapist.

Thursday

• AM: Individual with Nicole; living with Parkinson’s with Alex Reed.
• PM: Physiological review with Silvia.

Friday

• AM: Individual with Nicole followed by living with Parkinson’s.
• PM: Cognitive therapy with Silvia.

Saturday

• AM: Review with Nicole and payment $866 Euros. Goals defined. Slow down; be flexible and not be dominated by Parkinson’s; in the morning define a working day including exercise; establish a reasonable routine; stay flexible in  mind body and spirit; do more of all the things that I enjoy; walk consciously each day; enjoy time with Helen my partner and family and friends; avoid defeatist talk or actions.
• PM: Depart. Follow up in four weeks.

What did I learn?

• Do not be defined by the disease.
• Be careful pacing activities with adequate rest between.
• Conscious walking where I use my gluteal muscles to launch the step. The value of Nordic walking to get the feel of this change. An achievable goal for the day.
• Listen to the body and mind. For me, to slowdown and think out an achievable focus for each day.
• I have not yet learned to channel my frustration and find a balance between acceptance of the disease and actively resisting giving in to muscle stiffness and disability. The underlying anger affects me, necessitating the need to let go when I notice the signals.
• The value of high-intensity training at high energy using an exercise bicycle. A 2016 study found that a ten-minute workout with just one-minute of high-intensity (in this case, sprinting), had the same benefits as 45 minutes of jogging. On returning, I ordered the exercise bicycle Vitra Sport F £109 from Amazon. I will use the centre’s protocol of two minutes intensive exercise raising my heart rate to 80% of maximum followed by gentle idling for two minutes and then repeat intermittently for 20 minutes.
• When walking – before coming to the centre, I was using my back to lever my movement/momentum not my gluteal muscles. The aim to achieve lift off whilst initiating a walking step. Vigilance and conscious application of these principles will take concentration. Optogait analysis helped.
• Balance measurements confirmed that I was favouring my right side (the left is more rigid with ‘cogwheeling’). I know how to remedy, this assisted by a video of myself walking and measuring the stride length and pressure applied, at various points of the walking cycle. The centre helped me to deconstruct my walking style and replace it with one that was conscious and reproducible.
• Listen to my body. Be kind to myself. Live with gratitude to self and others.

In summary:

I learned a great deal and came back to England with more awareness and acceptance, with the added impetus of knowing how to practice and ask for support, when needed. I went rather down in the dumps and came back more optimistic around living in the moment and enjoying life.   

Awareness:

Our automatic patterns of feeling, thinking, and behaving, when faced with a serious disease like Parkinson’s, may cause us to fall asleep to our own lives and the lives of those we are living with. In ongoing research, 60% of us will become depressed and anxious during its course. Rather than staying in automatic mode PD is a call to wake up by learning how to observe and study myself/ourselves more objectively. Staying well with PD means that I/we need to become aware of my/our automatic reactions. Then I/we see that I/we have no option other than to behave and react differently with compassion for ourselves.

Acceptance:

Adopt a kinder and more caring attitude toward myself and others and accept what arises in the moment. I know I need to accept my reactivity. Accept my frustration in owning and defending this aspect of myself which comes from a deep anger at perceived and actual neglect in childhood – without  blame whilst not condoning or agreeing the actions that were harmful.

Practice:

Noticing my body-mind reactivity when the first thing that happens when I become frustrated is that my body tightens, and I become defensive. Is it any wonder that stress/overload makes the Parkinson’s worse! I know that paying attention to my breath pattern and staying with the out breath whilst slowing it down takes me to a calm space of peace within. This was confirmed at the center by the psychologist Dr Silvia who, whilst using a Neurosteer device, showed the alpha waves as I moved into this calm state.

I know I need to practice awareness and self-acceptance. So I need to pay attention and do small things with attention like cooking a meal, cleaning my teeth, doing up buttons etc. Becoming present in what I do with awareness of walking consciously. Realising that frustration goes with the territory of Parkinson’s. And then with compassion notice the body mind reaction, pause, notice the energy in my body, be present for it, if tightness loosen its grip by conscious breathing, pause and let go, leading to conscious actions.

Support:

I am so grateful for the loving support of family, my love life partner Helen Whitten, friends particularly Gary and all in the Avenue Club Kew men’s group, Phil, Charlie, Ellie and the spirituality group at INS and many others too numerous to name.

The latest from the centre:

Unfortunately, our foreign guests have all cancelled their bookings due to Covid19. We keep our fingers crossed for 2021 now. Online courses, including the Power Moves approach, have started for the Italian groups and for the English groups are following shortly, as soon as the publicity is completed. Clients can decide whether to join the group activities or to have an individual session with a neurophysiotherapist. All the detailed information can be found on our website, in the part entirely dedicated to the courses, called: RenGen@home

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David Beales: joint author with Helen Whitten: Emotional Healing for Dummies (Wiley) 2010 and Reclaim Health (2020). Community care of older people with Alistair Tulloch and Michael Denman. (Radcliffe 1997) + other publications.