Has anyone been to the Parkinson treatment centre in Italy? It looks. Very good and I am tempted.
There is a thread in the forum about the centre "European Parkinsons therapy centre" ...look at that for comments/info.
GG
Hi
I went for a week 2 weeks ago. I think it is a worthwhile trip. It is non-profit and even Alex who seems to be the leading figure works as a volunteer. The physios are paid by the session I think. Thye give u physical therapy in the morning for an hour and a half , then you do what you want (it is located in a spa) till abot 4pm when u have a talk from the Rellaxation person or Nutrition guy etc:
Plus ppoints include good price, mountains all around (though area is quite urban), close to airports(bus and rail links), the pTherapy is based on theory of Neuroplasticity and they analyse your issues and come up with exercises u need to do, the PTs were really good, the other sessions cover a multi-facted approach that we dont get on the NHS .
Negative pts ... not too many , not everyone speaks English (which isnt too much of a problem as the others translate) tricky if u have Italian and English speakers in same class but we got round it ok, the centre is currently being refurb'd so we used local gym and hotel, not all the sessions came with fotocopied notes , could do with a feedback process .
In summary its a brave enterprise that gives insights into the things you can do apart from drugs and its pretty unique in Europe ... so I'm glad I went !
Andy (aka Ojalahey)
Very interesting,
I am currently undergoing 4 weeks of treatment in a rehab clinic in Germany for PD to cut a long story short I am ex military that decided to remain in Germany after leaving the armed forces have worked as a 'civilian' ever since and as I pay into the the German welfare system this is all paid for by the German department for Pensions.
My treatment includes various sessions in improving coordination, movement, endurance and pain relief this is achieved by group sessions providing information to assist in relieving back & joint pain, gym work, Nordic walking, relaxation techniques (Jacobs) and general information in nutrition to mention just a few therapies.
Naturally the rehab is in German which luckily does not create a problem for me as my command of the German language is quite good my point is that if they can provide this kind of care in Italy and Germany why cant they in the UK?
I must add that this is not dedicated exclusively for PD sufferers but has certainly been helpfull to me in coming to terms with being diagnosed with PD.
Regards to all fellow sufferers.............chins up.
gb394
Above post went west !!! Anyway i will try again......( to cut a long story short) My has been on Rasageline 1 a day and 4 sinemet. after visiting her consultant it was decided to drop the Rasageline but go to 5 sinemet. This made her worse her movement was very slow,finding it difficult to walk and was very weak.Four weeks later she spoke to her Parkinsons nurse and she said the extra sinemet can sometimes make this happen. She went back to 4 a day is it a lot better, has anyone else experienced anything like this ?
Billy
hi has anyone had any experience of stemcell tourism? especially Swissmedica they claim alot.
Hi. Just found your post about the parkinsons centre in italy. My husband has PD and we went there in September just gone. He's had parkies 8 years and suffers mainly with tremor but also walking and a bit of balance. Italy was brilliant. I saw such wonderful progress in the people there. It was such a positive place and showed that there are a lot of things that can be done to help parkinsons symptoms without putting all the reliance on medication. The people there are great and if you can make the trip I encourage you to do so. If you want to know more please get in touch and I will give you my phone number if that helps.
I have also come across some medical articles on effective parkies treatment at German university clinics
After the refit, the Italian Centre has been running throughout the year.
It remains a close partner of Parkinson UK on the Jointly conceived "first steps" program.
It uses low cost Hotels, involves families and operates a four pillars therapy program that can be done in a week or 14 day package. The Charity behind it is called the European Parkinson Therapy Centre. Enjoy the PIzza!
Hi Billywizz,
One of the things which stuck in my mind soon after diagnosis is that too much sinemet (or other meds) can produce much the same symptoms as too little presumably because the treatment is trying to regain the pre PD balance between the normal neurotransmitters and the fauly ones.and that people have been known to end up vastly over-medicated by non specialist consultants On another tack I personally 8 years after dx,cannot go above 4 x Sinemet plus a day. At least not more than 1 tablet at a time without dyskinesia starting up
although strangely a few years back I could take an extra tab when Nordic Walking without adverse effect.
There is not an equivalence between the rasegeline and the sinemet because the latter is a measured dose whereas the amount of the patients own dopamine which the rasegeline saves from being discaarded by the system will vary from patient to patient according to how much dopamine the body is still producing So at the risk of over-reaching my medical knowledge, the consultant would have been guessing the result of swopping l sinemet for 1 rasegeline Was the rasegeline not agreeing witih your wife?.
The difference with me would seem to be that the 4 sinemet daily are now part of a regime which includes Azilect x 1 mg and neuropatches 8 mg daily. My neuro doesn't seem to have come across this intolerance to more than 1 x 25/100 at a time. although I was alerted to it by a PWP who has observed this several times in other PWP's..
Hope this sheds a little light
Hi Eileenpatricia
Sinemet stopped my wifes shake in her right hand an inner tremor and an involentary movement also in her right hand. She suffers with a pins and needles feeling in her mouth and a stiffness in her jaw and also stiffness in her shoulders and neck.It becomes worse sometimes when her sinemet is due, recently she needed to go on 5 sinemet. daily and a slow release before bed.
My wife came off the rasegeline as it was doing nothing for her, she tried ropinerole and and first it seemed to help but then it made things worse. She is now trying amantadine to see if this is the ONE that can help her. She also suffers with fatigue and balance.
My wife at the moment is using a flip fllow catheter which is a great help, eliminating her bladder problems.
Billy
Is this for all stages of Parkinson's or just early stages and how did you get there is it possible to fly from uk
We went in Sept 2016 and would thoroughly recommend it. Made a positive difference both physically and mentally and Bazs approach PD is very different now.He is not living with PD ,PD is his uninvited guest .He is in control not PD.
This positive attitude makes a huge difference
Hello to everybody who has been to the Italian therapy centre.
I would like to know if you have been able to maintain improvements in mobility and gait since returning home, or even better, managed to make further advances.
Many thanks
S
Hi Supa,
Just found your post so apologies because you've waited a while for an answer! It's been 12 months since we went to Italy. I think my husband is better since going to italy. It made a huge difference to our understanding of the effects of the anxiety, apathy, depression cycle on the symptoms of parkinsons. Also that having a positive, can-do attitude is so important for everyone, not pwp. Alex, who manages the centre, is so inspirational and encouraging and it's kind of about accepting that you have a different adventure now, it may be a slower path, but there's still so much to see, do and enjoy, don't let parkinsons stop you. That's one part of it. The physiotherapy is very good and I'm disappointed that my husband didnt keep going at them, there's only so much nagging I can do! We are going back again at the end of this month for a top up of professional nagging to get him back on track again! Our experience of treatment in the UK is that is mainly drug based with a nod to doing some exercise. We have friends in other parts of the country who have PD warrior classes and first steps classes which have similarities with the Italy centre. I wouldn't hesitate to recommend going there. Yes, it costs money but it's fairly priced for the amount of therapy you get and it can change your outlook and your parkinsons. We saw some amazing improvements in people there, it's very emotional and I fell in love totally with folk there working hard to improve and loving their improvements. Hope all that lot helps! x
Hi Mabelsmum
Thank you so much for posting, It was really useful timing, as we go to Italy on Saturday to the centre and I was getting a bit jittery at this point, wondering whether I should have done the booking or not. So it’s great to hear your positive thoughts.
I will send you a PM as I have some questions about the daily routine. Also it’s possible we will meet as we are there for another day, after my week of therapy finishes.
Regards S
Has anybody got a we link to this facility
Hi wild Rover. If you google European Parkinson’s therapy centre you’ll find it easily. They’re also on Facebook. It’s a palaver going of course but well worth it, we need something like it in the uk. X
Thanks, found it
Hi. I'm new to this forum as I was only diagnosed with PD last week. My husband and I retired to live in Italy 6 yrs ago so I've been really interested it hearing about the treatment centre at Brescia. I've been on the website but can't find any information about costs. Is it expensive?