Alexander Reed: “people with Parkinson’s are not sick”

Perspectives

Author: Joe McAweaneyPublished: 8 November 2017

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Alexander Reed and team

We spoke to Alexander Reed, the founder of the European Parkinson Therapy Centre, about how his initiative could be “the missing piece in the puzzle” – and his ongoing fight against apathy


“I wouldn’t even call Parkinson’s a disease, it’s a condition. Everyone is losing dopamine, we’re just losing it at a slightly quicker rate than everybody else. And let’s not capitalise the word ‘Parkinson’s’ – it’s about time we stopped putting it on a pedestal.”

The passion in Alexander Reed’s voice is clear, as he discusses his frustrations with the way Parkinson’s is treated in Europe. Diagnosed at 47, the Parkinson’s activist was left feeling dejected: “The doctor said ‘take these pills and I’ll see you in six months’. I walked out feeling utterly helpless.”

It was this numbing experience that led Alexander to take action. Feeling that there must be a better way, he set up the European Parkinson Therapy Centre.

The centre is dedicated to helping those with Parkinson’s through the early stages of their diagnosis, by providing them with a variety of packages – including neuro and movement therapy. Alexander says that the centre fills a gap in treatment for Parkinson’s in Europe, providing a considered approach and encouraging people with the condition to live a full and active life.

“We need to reach people as early as possible and start getting the truth out there: Parkinson’s is not a terminal condition. After diagnosis you can live a high quality of life.”

Established in Italy, where UK-born Alexander – whose wife is Italian – has lived for the past 25 years, the centre has attracted the attention of key figures in the Parkinson’s community. “I sent out six very simple emails which said: ‘I believe that people with Parkinson’s deserve a better deal. Can you help?’. The support we received was overwhelming, with Bas Bloem [professor of neurology] referring to the centre as ‘the missing piece in the puzzle’.”

European Parkinson Therapy Centre

European Parkinson Therapy Centre, Darfo Boario Terme, Italy

The European Parkinson Therapy Centre has inspired ‘First Steps’, a Parkinson’s UK initiative which will involve the opening of six centres across the UK. These centres would be available, free of charge, to all those who have been diagnosed with the condition.

Parkinson’s UK has engaged Oxford Brooks University to measure the quality of life of those participating in the programmes, and compare the results with those who do not. Alexander says: “If the results can prove that people who visit the centres live longer, pay more taxes and use medication less, then the government can be approached with a very strong argument.”

Alexander has already had support from important policymakers in government, having presented his ideas to David Cameron and his chief medical officer. Unfortunately, the turbulent nature of British politics hindered the centre’s progress initially.

“In July 2016 I flew into Heathrow for a meeting with David Cameron, only to get off the plane and learn of his immediate resignation. So I never did get my selfie at 10 Downing Street!”

Despite this setback, Alexander believes his approach offers a new way forward: “Therapy needs to be delivered in a totally different way. We offer an approach that is compassionate, and treats people with dignity. We want neurologists to refer people with Parkinson’s to our programme. And the programme should not be in a hospital, because we believe people with Parkinson’s are not sick.”

As Alexander discusses his vision for Parkinson’s treatment, he reflects on his own health, and how important it is to keep fighting. “To be honest, it’s not Parkinson’s that scares me: it’s apathy. I can treat Parkinson’s, but I cannot treat that.”

European Parkinson Therapy Centre Gym

Gym facilities at the European Parkinson Therapy Centre


Read more: John Lehr: “I’m inspired by the persistent hope of those living with Parkinson’s”

Kim Petrie: “How I raised $250,000 for Parkinson’s research”

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Comments


  • Sue hester

    Baz my husband, is a PWP and we had the pleasure of spending a week at the centre Sept 2016.
    It was a turning point for both of us .
    Baz was put through an extensive exercise programme one to one and we both learnt a lot about each other.
    He is 69, living life to the full, living in the moment. He still cycles 45-50 Kms twice a week,plays 2 hrs tennis twice a week, walks 10000 steps most days, skis , does diy and gardening.
    Our mantra is PD is living with him, he’s not living with PD. I’m his wife first, not his carer.
    Baz is in control of his life not PD. Thanks So much Alex !

    • Colin Alexander Reed

      Thank you Sue….. I could not have said it better myself, and probably why the centre is so in demand. PD is living with him, he’s not living with PD. God bless you.

  • Veerle Aertsen

    This title really does not help PWP in their daily fight to have their disease acknowledged imho.

  • Sara Riggare

    Thank you for an interesting article on a resource at least equally important as our neurologists. I am the first one to acknowledge how important exercise and a positive attitude are to a good life with PD. However, to highlight a statement like “people with PD are not sick” can have a very detrimental effect for PwP all over the world. It could potentially give for example policy makers and research funders reason to think that PwP are in less need of help than people with other diseases and therefor cut funding for us. I very much appreciate the work you do on parkinsonslife but you may want to consider the implications of the writing one extra time.

    • Colin Alexander Reed

      I agree. I did not choose the title.. The concept is clear.. I personally prefer the live life to the full approach. I was diagnosed at 46 and have 9 years of Parkinson’s and DBS. Yet I still believe and our centre proves every week that we do have a choice (not the title of this article!!!) but to be a victim or a protagonist.

  • marmaduke123

    I refer to your written article in the Parkinson life and feel a need to comment. Even though your ideas seem to be accepted by the medical proffession and I have no expertise in that area other than having parkinson for the past twelve years I was instantly disturbed at your opening wording. To say a person is not sick with parkinson ” it’s not even a disease ” is i feel a discernment to those of us who struggle every day with it. Yes we are not physically vomiting in the sink, it is not contagious, no one person has the same symptoms unlike flu measles etc but to call it loosely ‘ a condition’ seems to me very au fait , deserving at least the upgrade to a serious condition as not being able to move your body seems pretty serious to me. Lets then call it for argument sake a disability….which translated means something that prevents you from doing something that could normally be taken up had you not got it. Hello…Maybe a normal life!. From the moment i was born i could move without thinking, think without effort. I agree with your claim that everyone looses dopamine but normally over the course of an average lifetime. This dopamine allows you to move freely, think clearly, live life as we know it. My dopamine levels ran out at 47 far from ‘ slightly’ faster than the norm. Life as i had known it had dissapeared so in fact one could say definately i was disabled by my lack of dopamine. Is it a long term lllness? yes there is no cure and only a specialist could recognise, diagnose and treat accordingly. Is it a disease? yes it is a destructive assault on a certain part of the body preventing it from functioning.
    Is it a condition …mmh……a curable if not manageable fault of the body
    I have always since diagnoses dealt wth parkinson positively taking each horrible symptom and getting through each lonely night or difficult day as hard as the journey has been yet your article heading’ parkinson is not a sickness or even a disease ‘ has deflated me. In this one sentence you have managed to demote my struggles, my symptoms by refering to it as a condition. Parkinsons brings real changes in a person’s life path if one doesn’t face it head on with positivity it can be devastating. Not to want sympathy for ones sufferings but to point out the careful way in which one must use the descriptive wording of such a horrible and life changing illness/disease . For those of us having PD somehow ‘condition’ does not cover it
    .

    • Colin Alexander Reed

      A better title would be “we have a choice” I did not choose the title. For those of us who have PD (I was diagnosed at 46 and have had DBS), it is a daily fight. I have chosen like yourself to fight. God bless you

  • Chris DeAngeloWX5CJD

    I’m sorry, is their something you don’t understand? Parkinson’s is a Neurodegenerative Disease! Not a common cold! I understand that having a positive attitude helps one cope, but to say we’re not sick is absolutely preposterous!!! If I’m not “sick” then please explain to me why I have to take copious amounts of medicine just to make it through the day! I’m so sick that I can no longer hold a job and support my family you imp! I suppose you have the cure for Parkinson’s then? Please do share it with the rest of us.

    • Colin Alexander Reed

      People with Diabetes and take medicine or high blood pressure or with a serious neurodegenerative condition (one that will kill us … it’s called ageing) are not sick. Technically Parkinson’s is an acceleration of an ongoing natural process (the loss of dopemine cells), which would be defined as a condition. I do not feel like a handicapped or incapable person. I take my meds so I can go on with living and I choose to do this. It is not a positive attitude it is research that shows that excercise (neuroplasticity) and life style choices make all the difference. I have dedicated my life to getting people with Parkinson’s to see that quality of life is not connected to quantity of life. I have had DBS and just manage to get through the day. Everybody has a choice.. you can become a victim or a protagonist. Ask Michael J Fox if he is a victim. The choice is ours.

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