The European Parkinson's Therapy Centre


#1

Hi. I am a week into a two week stay at the centre, at Boario Terme in Lombardy, Italy. This is an account of my experience so far.

I came here with some clear objectives.

Firstly, since diagnosis 14 months ago, I’ve tried to take the advice to exercise regularly, but keep being set back by muscle strains and other physical problems. So, I came here hoping the individual attention from the therapists here will help me work out a programme that I can keep to long term. After my first week, I’m feeling very pleased. I haven’t had to use a stick for the last couple of days, and my walking, even during my wearing off periods, is noticeably improved. So the prospect is good for fulfilling this objective. My individual therapist is called Agatha, and she is great!

Secondly, I hoped to regain my ability to swim. I lost confidence about swimming before I was diagnosed with PD last year. I’d lost the ability to coordinate my legs and arms to do the breast stroke or crawl and that resulted in a nasty few minutes when I was swimming in the sea, and a humiliating experience at the swimming baths. Since then I’ve not been back in the water. The Centre does not include swimming in its programme, but it is attached to a spa with a lovely warm pool which is an even 4’ depth. So far I’ve been swimming twice, managed to coordinate my limbs and swum a few lengths. I’m intending to swim for another five sessions next week.

Thirdly, I have been given conflicting advice from health professionals in the UK about medicines, when to take them, with or without food, etc. The Centre here has a definite view on this – basically as little levodopa as you can stand, limit protein intake, and take the levodopa on an empty stomach, at least half an hour before eating and at least 1 hour after eating. This was the regime I was tending towards before I came here, and it seems to be working for me. In the last week I’ve cut down from 5 Madopar to 4 a day.

I have also found the experience of being with a small group of other PD sufferers helpful, and the leadership of Alex, a PD sufferer who is one of the lecturers, very good for my morale. The emphasis here is very much on the positive. My husband and I appreciate the support given by our local Parkinson’s UK group very valuable, but it is sometimes a bit of a downer.

I’m looking forward to my second week.

Inevitably it is not all peaches and cream, so for anyone thinking of doing the course here, these are the few negatives I’ve experienced:

Firstly the cost. Even though the charges are kept to a minimum, the fact is that a two week stay in Italy does require a healthy bank balance.

Secondly, the hotels are not geared to the Centre’s recommended regime. My hotel, the Sorrisso, is lovely. and the food is very good, but the Italian cuisine poses some challenges. The continental breakfast offered does not include a high fibre cereal, and meat or dishes high in cheese or cream are offered for lunch and dinner. Fortunately, there is always a salad bar.

Third, this is not an area where much English is spoken. That is not a problem at the Centre, where all the staff are reasonably fluent, but in the hotel and the town it is definitely helpful to have a few words of Italian, as I do.

Fourth, the weather, which matters if you want to combine the trip with some sightseeing. I’m used to this, since I live in north Devon. We have lovely weather, but also a lot of rain and mist. It is pot luck for tourists, who can’t tell whether they will be able to spend a week on the beach or stuck indoors playing Scrabble. It is just the same here. I have most of the weekend free before I start my second week of therapy, but just when I have the time to visit the local lakes and picturesque villages, it is chucking it down with rain and visibility is limited. My advice is to pack a couple of good novels.


#2

Hi @Jane_L,

Thank you for sharing your experience about the European Parkinson’s Therapy Centre, I’m sure our members will find the information you’ve shared very insightful. You mentioned that the local Parkinson’s group that you attended is a “bit of a downer” - do you mind elaborating on this so I can share this with our local groups leaders?

We’re always looking at ways to improve our services, so do feel free to share your thoughts. You can also share this with me via private message if you’d prefer. :slight_smile:

Best wishes,
Reah


#3

An update. I’ve been back home for 3 weeks now. I’m just amazed at how much I improved in Italy. The big thing is my walking. I’m able to walk a couple of miles now with a more or less normal gait and speed. That compares with maybe a mile at most, with poor gait and speed, before. It does depend to some extent on when I last took Madopar, but even when I am beginning to wear off my gait is better than it was.

I am also experiencing less wearing off between Madopar doses. Just before I went to Italy, I had increased my dosage from 4 to 5 pills a day. While I was in Italy I reduced back to 4, and I am now wondering if I could manage with 3. It’s not easy to pinpoint exactly what has caused the improvement, but I think it is a combination of more exercise, taking the Madopar on an empty stomach, not eating for an hour before or half an hour after taking the meds, and avoiding protein rich foods during the day (i.e. no more cheese and biscuits for lunch).

Since coming home I’ve made an effort to keep to the exercise programme. I walk for half an hour a day and do the set of exercises I was taught. I am also continuing to attend the Parkinson’s Exercise class and the Movement to Music class run by the local Parkinson’s UK group.

My therapist at the EPTC, Agata, recommended that I continue to use a treadmill. I have considered buying one, but we have quite a small house and I don’t think we can fit one in. Instead, I have joined the nearest accessible leisure centre and one day a week I’m spending the afternoon using the treadmill and bike in the gym, than having a swim.

Part of the programme Agata devised for me was three sessions a week of fifteen minutes on an exercise bike doing two minutes moderate cycling, followed by one minute of intense cycling. I’ve not done so well at doing this consistently, probably because I find it really hard work. I either make all sorts of excuses to avoid it, or simply forget. I’m going to have to try harder.

I regret and apologise for my negative comment about my local PUK group. It was off the cuff, and really just referred to one event.


#4

Sounds very positive, I presume you highly recommend the trip then. I have been pondering the idea for some time. Need to get it booked.

Thanks for the feedback


#5

Yes, I definitely recommend it.