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


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.

6 thoughts on “Making Sense of my Parkinson’s: The European Centre for Parkinson’s

  1. Wonderful David, inspiring to read. Thank you for mentioning Garry and the Avenue too.

    How did you find the reiki? I give reiki treatments (as well as reflexology) and teach people to use it on themselves (called the attunement). I am not currently teaching level 1 until restrictions are lifted (as we use the breath) but it is an area I will be expanding when I have more time next year (light work is my life purpose, 31 years as an HR Manager for local government is long enough!).

    Sending you much love

    Caroline x

    Sent from my iPhone

    Like

  2. Dear David, I have been so very moved to read these this morning. What a gift to the world they are. I will be sending them to my best friend whose husband has Parkinson’s and to the woman who runs the neuroalliance in the North of England. My friend and her husband travel from West Cumbria to Middlesborough to see a neurologist as the ones in Cumbria are not good at all and the Parkinson’s nurse is so busy she doesn’t spend enough time with people. Paul is remarkable in his persistence with his PD – he has defied many people in his desire to keep travelling in the year up to lockdown ( the Caribbean and Rio de Janeiro!)

    My partners father has end stage Parkinson’s – I wish he could have had this approach from Italy. The other day we came up with the idea that he could go for a walk inside his head every hour on the basis that the brain doesn’t always distinguish between imagination and reality. Since then his actual mobility has improved! I will send what you have written to their family as well.

    I’m not sure that the Berlin conference will happen face to face in December. It would be lovely but a bit of an unrealistic idea to meet up soon.

    Thank you

    Venetia

    Dr Venetia Young Penrith, Cumbria, UK 07788 661772

    Narrative medical educator and writer

    Member WONCA Mental Health Working group Primary Care Safeguarding Forum executive Trustee Cumbria Family Support Trustee The Well Communities Trustee CVCT Cumbria Victim’s Charitable Trust Committee Headway North Cumbria

    Ten Minutes for the Family- Systemic interventions in Primary care Eia Asen, Peter and David Tomson, Venetia Young Routledge 2004 (also Portuguese and Italian versions)

    MB BS BSc DRCOG Dip FT FRCGP GMC 2271613

    >

    Like

    1. Thanks so much Venetia. My writing has required me to look back from a place of self-observing. My aim in focusing on my own experience I hope is t encouraging to others that you can live well with PD. The individual coaching at the European Centre was very valuable.

      I think the bicycling in your head when the body can’t do it makes absolute sense and the four pillar approach at the centre a useful framework in that each of the pillars need to be functioning well to keep the house up and running..

      I think guided imagery is a very powerful technique which somehow combines self-hypnosis with enhanced mind-body dialogue and I think back to the time when Karl Simonton and his wife were pre-eminent in this field.

      Will you give me some more advice about how to reach the audience that might be interested in my writing. Thanks for suggesting the Neurology Society and I will send it to them. I’m not adept at social media but I will go back to twittering.

      I do not understand how primary care thinks it can function safely without face-to-face meetings and continuity of care. Dennis.

      Pereira Gray has shown convincingly in his research that having one GP whole chance of early death by 50%!!

      Keep on flying the flag for wholistic care.

      With love and good wishes,

      David.

      Like

  3. And have you sent them to the neurology society run by Jon Stone and to Chris Dowrick?

    V xx

    Dr Venetia Young Penrith, Cumbria, UK 07788 661772

    Narrative medical educator and writer

    Member WONCA Mental Health Working group Primary Care Safeguarding Forum executive Trustee Cumbria Family Support Trustee The Well Communities Trustee CVCT Cumbria Victim’s Charitable Trust Committee Headway North Cumbria

    Ten Minutes for the Family- Systemic interventions in Primary care Eia Asen, Peter and David Tomson, Venetia Young Routledge 2004 (also Portuguese and Italian versions)

    MB BS BSc DRCOG Dip FT FRCGP GMC 2271613

    >

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s