Living with Parkinson's

[EuropeanCentre]

I have 22 years of Parkinsason's (62 years old) and I am Founder and Director of a cutting-edge centre based at Terme di Boario, in the province of Brescia Italy. The European Parkinson Therapy Centre, operating now in over 45 countries. I never use the expression "Parkinson's patients" not even once, rather clients or "People with Parkinson's". Respect and Dignity never handicapped, we have created a unique centre witch is an undisputed and innovative example to all the institutes that treat this pathology. I remember speaking about it with Tom Isaacs and Peter Harling (both sadly a great loss to the Parkinson world). I said I wanted to create a centre to demonstrate that you can learn to live with Parkinson's, reshaping your existence and your daily life and improving your quality of life.

My job has always been that of business consultancy, that is, doing business for others. So for this project, we thought of creating a non-profit Association for the good of Parkinson's patients, starting from a very specific point: there is something that is very wrong and too many people live in the Shadow of Parkinson's. We set up a program to educate, treat, motivate, renew, inspire and all this in Holiday enviroment that is Boario Spa Town. Over 50 percent of people with Parkinson's are chemically depressed and/or affected by apathy. So, to offer the most advanced therapy, we have involved the biggest names in the sector worldwide, names such as Dr. Jay Alberts of the Cleveland Clinic, a world expert in "forced exercise", and American Dr. Becky Farley, one of the world's leading experts on the effects of exercise on Parkinson's».

Fundamentally we do not think a Hospital is the correct place for "People with Pakinson's". WE would argue that Parkinson people are not ill but rather have a condition that requires treatment. Furthermore, we treat the whole family and the whole family is welcome. This is important because it is not always easy to live with someone with Parkinson's:

For social life I love my garden, travelling (I have friends in San Francisco, who work with the M:J.Fox Foundation). I love spending time with my grandchildren. 22 years is alot but I am autonomous and feel great.

I love my faith and I am actively involved with the church and follow a church in USA (Cornerstone Chapel). I have consulted for many pharma companies and PARKINSON Associations and have run a Christian tour operator for the last 10 years.

I am also pleased to be part of PDAvengers and Parkinson Europe, Great vission, Great ambition, lovely people.

God bless

Alex

[Zscaleplanet]

Nice marketing pitch. How much is a session in this so-called "non-profiit luxury spa" going to cost me???? Or "project" as you call it.

In the U.S., non-profit = big fat salaries for the non-profit CEO's and their staffs, and little results in the long run.

Oh, and the link to your website does not work, nor in a cut and paste manner.

[AlmaninItaly in reply to Zscaleplanet]

We are not in the US, we are in Italy. No profit means no profit and indeed we have only made a profit 1 year in 12. Our CEO/president works as a volunteer and our therapists work for less than 20 dollars an hour. Our CEO/president founder invested 200,000 Euro into the buying of equipment. I should know as I am the CEO (with 22 years of Parkinsons). But I do know what you mean but our one week program changes lives and is very full and powerful see scienceofparkinsons.com/201... or google "reviews European Parkinson Therapy Centre". It's not free but it is a unique place youtu.be/rWp9IHg6k0g?t=2(Not working as expected?)

[Lorraine33 in reply to Zscaleplanet]

I have been to this Center with my husband who is a person with Parkinson’s. It was an amazing place. My husband hated it!! He did not want to be there. Now, several years later, EVERYTHING the offered. Intensive exercise, speech therapy which is still ongoing. Information, skills. Highly recommend it. I think, as a partner, for me it helped to know so much more about PD and that I am not alone. I wish you continued success

[Bolt_Upright]

So... this is your center in Italy? terapiaparkinson.it/en/

[AlmaninItaly in reply to Bolt_Upright]

Indeed it is

God bless

Alex

[missingnewmexico]

Thank you for posting about this encouraging place. God bless.

[MBAnderson]

"Summer season

1 April – 30 November

Euro 855,00

1 week

Euro 1.590,00

2 weeks"

"If you want to stay in an exclusive room for single use then the supplement is € 10 (exclusive room) + € 15 (single use) per person per night."

Does this mean we share a room, unless we upgrade?

Why don't you descibe the actual therapy?

Otherwise, it sounds like you're really a hotel or travel agency, with PD as a marketing aside.

[Zscaleplanet in reply to MBAnderson]

It looks like nothing more than a physical therapy institute with a rather large “non-profit-big-salary” staff.

Generally a non-profit is required to post their financial outlay upon request. I’m sure they’ll be happy to provide that.

[AlmaninItaly in reply to MBAnderson]

You are not looking deep enough. The 4 pillars is the protocol see terapiaparkinson.it/en/info...

How can we be with PD as a marketing aside with reviews like these GOOGLE " reviews European Parkinson Therapy Centre". I dare you!!!!

and how can we be in 45 countries

God Bless

Alex

[Lorraine33 in reply to MBAnderson]

The Center is located within a few hundred yards from the hotels.

[Grammy80 in reply to MBAnderson]

Conversion: "How much is €85,500.00 – the eighty-five thousand five hundred 💶 euros is worth $92,985.52 (USD)

Source: eur.currencyrate.today/conv...

Surely, I must be doing something wrong~~~~~🤔 💞

[MBAnderson in reply to Grammy80]

Move the decimal to the left 2 digits. It's 800 and 55 euros.

The place has got a lot of positive feedback.

[Grammy80 in reply to MBAnderson]

Whew! Thanks~! It sounds restorative...expecting no miracle; still sounds beneficial💞

[Smokeypurple]

I can't speak from experience but someone in my Parkinson's community has attended this clinic in Italy and thoroughly enjoyed the time spent there. He felt it was very beneficial.

[MBAnderson in reply to Smokeypurple]

Good to know. Beneficial enough to interest you?

[Smokeypurple]

Yes but I already had my sights on Dr Mischley's summer school so kept my pennies in the piggy bank.He was very happy with the visit - from memory it involved plenty of exercise and the generation of a personal programme.

[michelagvolpe]

It can be good for a vacation in beautiful Italy. The strategies are ultimately the same: healthy lifestyle, physical activity, mental positivity, nature walks. Strategies that must not only last the weeks of vacation in Boario, but for a lifetime.

My advice, for those in the initial phase of PD, is to immediately activate the strategies I have listed. Look for places where they do Ecstatic Dance, contact improvisation, try yoga, dedicate yourself to art, etc....). eat a little bit of everything, non-ultra-processed foods, lots of vegetables, no sweets.

[jeeves19 in reply to michelagvolpe]

What’s wrong with sweets?

[michelagvolpe in reply to jeeves19]

sugar is not good for health, it is better eat fruit

[Lorraine33]

you run a wonderful Center. I have replied to your post but further down.

[EuropeanCentre in reply to Lorraine33]

Thank you, God bless you for your support. Alex

[Smokeypurple]

It is not always easy to find the motivation to start or keep going with all the healthy things we should be doing. For me something like this is a cornerstone of my approach (others would be HU, local support etc). All these things together keep me going. That's why I attend Dr Mischley's PD school lectures online - every month my motivation gets a little boost.

[Smokeypurple]

There is another venture in Italy run by a friend in my young onset support group. Many of those who went last year have rebooked for this year. It's more of a Parkinson's wellness retreat. Just in case anyone is near Umbria, Italy.Hope this link works.

parkinsonsretreats.org/

[Zella23]

my husband attended a few years ago and although didn’t really enjoy the intensive exercise, it really helped him. There are lectures as well it isn’t just exercise it is a whole therapy with physio, neurologists and personalised therapy with a 1:1 specialist.

I wish we had one nearer to London and we would have attended! The place in Umbria is beautiful though just not easily accessible.

Our therapist was brilliant as was Alex the founder who is writing this post!

My husband has been dx for 10 years now and there is still nothing like this anywhere else that I know of and I salute you Alex in trying to bring this therapy to all.

[YoungPD-48]

Good morning, sounds good on paper, I would like to try , please reply here -cost in £ for a week so I can budget

[Allypally49]

I always call it 'people being treated for Parkinsons '

[TanteJ]

I visited the European Parkinson Therapy Centre in Italy with my husband in September 2023. At the time I was 70 years old and 8 years post diagnosis. Ironically, I was the fittest I had ever been in my life at diagnosis. My first neurologist said this should hold me in good stead as the key to slowing progression was ‘exercise, exercise, exercise’. This I was able to do with positive results for many years but suddenly several non PD health issues impacted on my ability to exercise. During 2023 I really struggled and felt I was ‘falling apart’ physically and mentally; whatever I tried did not work. My Movement Disorder Specialist had retired and subsequently I received fragmented care on the NHS. As a 70 year old woman I felt that I had just been ‘written off’. I realised that I needed help. I had known about the European Parkinson’s Centre for a while but had never really considered it a viable option for me –that it was out of my league. But something made me visit their website. I costed it out, was willing to make the investment in my health and decided to book. Realistically I was just hoping to regain a little flexibility and strength to enable me to exercise more fully. After 2 weeks at the Regen Centre working with the caring and expert team there, covering not just exercise but also mental health and nutrition etc. I could hardly believe the improvement in my fitness, mind-set, positivity, confidence and motivation. You have to exercise hard every day and are pushed to your limits. But to enable this, you work on a one to one basis with a physical therapist who devises a personalised exercise programme for you. Each day, your therapist assesses how you are that day and alleviates any stiffness etc. with massage or other physio techniques. But it was not just about me; it was life affirming to see how other people attending the Centre, some quite severely incapacitated by PD, improved markedly. It’s certainly not ‘snake oil’ or a placebo effect or a holiday! My thanks to Alex Reed for having the vision and determination to create this Centre.

[RBDNoPDYet in reply to TanteJ]

TanteJ how long did you go for? Were you able to sustain your improvements?

[Nicopwp]

Thank you for reminding us of your work. Bravo!!

[MBAnderson]

I was too quick to be skeptical. My apology.

[LiveRideCure]

Phenomenal post. Inspiring !! Stay strong !! Thank you.

[faridaro]

Nice post Alex! In October 2023 I (diagnosed 2017) was fortunate to spend 2 memorable weeks in lovely Boario enjoying good food and mineral water from local springs as well as attending program at your therapy center. I was surprised that the program was not like a retreat as I anticipated but more like an intensive boot camp which actually forced me to gain some improvements in motor skills. My drill sergeant☺️(therapist Francesca) during our sessions pushed me to the limits - even after getting back home when going for a walk I could hear her voice commanding - "kick your foot, swing your arm, look at the monkey" (which was sticker on the mirror in front of the treadmill) . I was very impressed with sincere dedication of the entire staff to their clients and would love to visit this center again. Please give my warm greetings to Francesca and Roberta if they are still there. Wishing you all abundant blessings!

[RBDNoPDYet in reply to faridaro]

Have you been able to hold onto your gains?