The SoPD has a policy of not advertising or endorsing products/services.
This rule is in place to avoid any ethical/conflict of interest situations. It does little, however, to stop folks from bombarding the comments sections with links for wondrous magical cures which probably involve more ‘magical’ than actual cure.
Having said all that, every now and then I find or read about something that I think may be of interest to readers. In many of those cases, I can not vouch for the information being provided, but where I think there is the potential for readers to benefit, I am happy to take a chance and share it.
Today’s post is all about one such case: The European Parkinson Therapy Centre
Until very recently, I was working in Parkinson’s research centre in Cambridge (UK).
I conducted both lab- and clinic-based research on Parkinson’s in the lab of Prof Roger Barker. And it was in the clinic – several years ago – that I started hearing about a mysterious place that was not offering ‘to cure’ people of Parkinson’s, but rather helping them to live a better life with the condition.
Initially it was just a trickle of questions:
“Have you ever heard of this therapy place in Europe for people with Parkinson’s?” (“Nope, sorry” was my response).
But then an individual came in for their assessment, and spoke with tremendous enthusiasm about their own personal experience of visiting “this wonderful place in Italy” (“Sounds very interesting,” was my response, “Tell me more“).
Gradually, more and more people started sharing their own stories with me (both in the clinic, at support group meetings, and via correspondence to the SoPD website) about the place in Italy. And eventually it all led to me making some inquiries about the European Parkinson Therapy Centre.
What is the European Parkinson Therapy Centre?
The European Parkinson Therapy Centre (EuPaTh) is a not-for-profit registered charity, located in the idyllic Camonica valley in Northern Italy (near Milan).
Lake Iseo. Source: Traveloffers
The centre was created to provide people with Parkinson’s a road map for maintaining quality of life. Critically, they are not selling ‘a cure’ for Parkinson’s, but rather strategies for living a better life with PD. And as we wait for disease-modifying treatments to be developed, this seems like a proactive and noble idea.
How do they do that?
The team at EuPaTh centre have developed a program that provides a one-on-one multi-level approach to therapy for Parkinson’s. Including a neurologist, nutritionist, psychologist, podiatrist, and several physiotherapists, the program tries to provide participants with a full ‘road-map’ for how they can live a better life with their specific Parkinson’s.
Partners and family members are also welcome/encouraged to attend the sessions. The EuPaTh centre believes that an important part of living well with Parkinson’s involves providing families with the skills/resources to deal with Parkinson’s.
“Parkinson’s effects the family and the family is part of the solution”
The team provides a considered approach to Parkinson’s, and encourages people with the condition to design and live a full/active life around the condition.
What specifically does the centre offer?
The EuPaTh centre provides two programs:
- Intensive – 6 days (Best for people who have been diagnosed more recently or have mild symptoms)
- Standard – 12 days (Intended for people with more complicated issues)
Both involve travelling to the centre and attending daily sessions. One requirement for attending is that visitors must be autonomous as no special assistance can be offered outside of the centre (such as at any of the hotels).
The programs are based on a “4 pillars” approach, upon which quality of life can be maintained. These pillars are:
- Medical – “It`s what keeps us moving and eases some aspects of Parkinson’s”. This involves:
- Understanding correct dosages and timing of medication and having a good relationship with neurologist
- Understanding effects of medicines and the relationship between medicines and execrcise
- Understanding the Placebo effect
- Physical – “Physical movement (Neurotherapy) is now understood better and like medicine, it is now understood it must ‘taken’ daily. Regularity and not quantity is important”. This pillar deals with:
- The effect of movement on Parkinson’s and the correct type of exercise.
- The need for DAILY excercise to maintain improvements
- To combine Enjoyment with Exercise to ensure frequency and sustainability.
- The benefit of dance and other activities (Should never substitute DAILY exercise)
- Life style –“Apart from obvious points about what and when we eat and the avoidance of stress, what is essential to understand is that we have a choice”. This component focuses on ideas like:
- It is not quantity but quality that matters; Change can be for the better if managed
- The need to take control and to take responsability and not delagate; There is a choice.
- Correct eating and healthy habits; Slower lifestyle can lead to benefits
- Combining what is good with what we enjoy; The dangers of Apathy
- The effect of stress
- Psychological – “We use the ACMA approach”. The ACMA stands for:
- Acceptance. The need to accept the reality of today, not look to the past or the future
- Comprehension. Understanding the reality of Parkinson’s. The ability to improve symptoms and slow progression
- Motivation can only be effective after Acceptance and comprehension.
- Action. Taking control
- It is not possible to get Action without Acceptance
The centre explores all aspects of these four pillars, but the team places a particular focus on the three non-medication pillars. Folks who have visited the EuPaTh centre have said that it can be rather physical (not more than each individual can handle), but they have REALLY appreciated the personalised approach.
For more information about what a typical day at the centre might involve, have a look at the EuPaTh centre website.
Who runs the centre?
The centre was founded by Alex Reed, who is the current director.
Some members of the EuPaTh team (Alex is in the white shirt). Source: Parkinsonslife
Born in Uganda, but raised in the UK, Alex was diagnosed with Parkinson’s at age 46. He founded the EuPaTh centre after feeling that there was a major aspect of Parkinson’s therapy missing.
“The doctor said ‘take these pills and I’ll see you in six months’. I walked out feeling utterly helpless.” (A quote from Alex in a Parkinsonslife article). He says that the centre fills a gap in treatment for Parkinson’s, and his goal is to turn people into protagonists, not patients.
“Therapy needs to be delivered in a totally different way. We offer an approach that is compassionate, and treats people with dignity” (Another quote from Alex in the Parkinsonslife article – recommended reading on this topic).
Sounds interesting. Has anyone else done this?
Parkinson’s UK have initiated efforts to replicate the success of the EuPaTh centre program in the UK.
They have called this project “First Steps” and the model is based on the residential programme offered by the EuPaTh centre.
Here is a video of Sally Bromley describing the program’s inspiration and development:
The very well maintained Parkinson’s UK Oxford branch website has more information about this (Click here to read more).
So what does it all mean?
The SoPD website is regularly contacted by folks who are looking for more personalised, ‘one-on-one’ therapy options that go beyond the usual 30 minute annual session with a neurologist. It is a crying shame that facilities like the EuPaTh centre are not more readily available, or that the format has not been replicated in more geographical locations around the world.
There is so much more to the treatment of Parkinson’s than simply “take these pills and I’ll see you in six months”. Thus, I applaud the efforts of Alex Reed and his team, not only for helping those who visit their centre, but also for encouraging this change in mind set and empowerment of the community.
If readers are interested in learning more about the EuPaTh centre or the services offered, they are advised to see their website or contact them directly.
Life isn’t about waiting for the storm to pass; it’s about learning to dance in the rain – Vivian Greene
FULL DISCLOSURE: The author of this post initiated contact with the European Parkinson Therapy Centre, with the expressed aim of writing a post about the charity. While information has been shared (in the form of documents and a small handbook), no financial or material gifts were offered or asked for in exchange for the production of this post. The author has no connection to the EuPaTh and this post is not intended as an endorsement. The information provided here is for educational purposes.
Further, the author of this post is also an employee of the Cure Parkinson’s Trust, and while the logo of the Trust is present on the EuPaTh website as a supporter of the centre, there is no financial connection between the two organisations. CPT has not requested the production of this post, nor has CPT or EuPaTh been involved in the production of this post. This post has been written by the author solely for the purpose of sharing the information provided as the author thought the centre was a great idea.
The banner for today’s post was sourced from weekendesk.
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