Have just finished a weeks 'boot camp' and although tired from all the physical therapy,have pushed myself to limits I never thought would be possible again.
Being on max dose of Mirapexin and Azelect the Nurologist recommended I start Sinemet.
Thanks to my wife's research we found the centre and decided that before I went down that road ,would like to see if I could improve my symptoms without levodopa and I am so glad I did.
Over the week I have been empowered to be in control of PD not PD be in control of me . With one to one Physical therapy every day,talks on physical activity,lifestyle and psychology. My balance is now 100% my gait almost normal,my step lengths equal ,im swinging my arm again and my posture is straight again.
No one did this for me I've done it myself with neuroplaticity and it really works.
We met other PWP with much worse symptoms than my own and really didn't expect to see improvement in them.
To see them empowered to walk without sticks and walk instead of being in a wheelchair was humbling they too worked well beyond what they thought they were capable of.
The easy bit is over now the hard bit begins as I return home and keep up the exercise and keep motivated.
As a couple we both learned that My wife is my wife not my carer.
She has learnt that she needs to take 2 steps back and I must take 2 forward so we remain man and wife.
Whilst I know that PD is progressive and one day I will need further medication at the moment my symptoms are not impeding my quality of life so will save the meds till it is.
For now I will live my life on the slow train, enjoying the journey keeping fit ,active stress free,living in the moment.
It's no good worrying about the past, you can't change it,and worrying about the future isn't going to change it either.
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Bazillion
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Thanks Bazillion, I was so encouraged by your post, none of us want to go down the road of more and more medication and am sure excercise is the key to holding back progression of this disease.
I have always wondered if the Therapy Centre in Italy really works . After your week over there you sound so positive I am pleased for you. After your succesful trip I wonder if it could work for me - I've had PD 2 yrs and my main problems are heavy head when walking, balance, anxiety which causes me to breath too fast most of the time. I would be very grateful if you could say whether you saw any of these problems being solved. Also could you please explain more about how much and what type of exercise you did.
I was diagnosed 4 and a half years ago,and thanks to regular exercise the progression has been slow.However My Neuro suggested starting Sinemet. But I really didn't feel I needed to go down that road yet and decided to try the therapy centre.
I had a one on one trainer for an hour and a half for 6 days and it was full on .I was assessed for balance walking sitting ,stride length and much more .Then the exercise started .fast walking ,cross training treadmill,side walking ,to exhaustion. Rest then off again.I averaged 13000 steps a day
Also included was talks from speech therapist,psychologist ,physio.talks on diet,lifestyle breathing, relaxation, and much more.
My anxiety has completely gone ,I think because I feel more positive not about the future but about the present.
The staff at the centre are all so encouraging and want you to take control of the PD.
Thank you for reply very useful - so pleased for you it must give you a huge lift.. Too late for me re meds already on Sinemet 18 months, I had no idea at the time what the meds were or what they would do. At the time I was in shock just being told I had PD that I just took the pills it's not untill later that you find out the details.
I'm like you, budsey, except I was dxed 12 years ago & have been on Sinemet ever since. Now, I read where people just use supplements & wish I had looked into it further.
It's hard to know what to think and what the truth is re supplements sure don't work for everone, depends on symptoms I guess. I am going to the Therapy centre in Italy soon, this is one of the questions I want to ask.
I saw my neuro last week & asked him about supplements & he said they don't work & that I definitely need the meds. I am anxious to hear about your trip to Italy & EuPaTh.
Hi Budsey,,I'm 68 diagnosed 4and a half years ago so you are a spring chicken!
The sessions were 9.00 to 10.30 and full on ,(you will be surprised how much you can push yourself)with a personal trainer one to one.Mine was Daria and she was marvellous.The only allowance made was on the 4 th day when I was really tired so I didn't do the cross trainer. Did boxing instead!
The evening sessions were talks and were usually between 4-6 Ish and partners are encouraged to come .
Also Alex will take you both individually for a chat.
That leaves plenty of time to do things together during the day.
The Hotel Sorrisso is just across the road fron the Train Station, we had a ride to Monteisola an island 1/2 hr south 5.20 E return a little ferry ride to the island and a 9 km bike ride round the island. There is a bus you can take to the top 600ft to a monestery,amazing views.
You are encouraged to walk 10000 steps a day so we did a few lovely walks too
The Terme has beautiful gardens and had entertainment three evenings.
There is also a UNESCO world heritage site we walked to (there is a bus) of petroglifs .
The hotel Sorrisso was right next to the centre . We asked for a room at the back with a balcony and mountain views
It's full board and we had the house wine in a carafe very good and not expensiveLovely to sit out on and relax.
If you are into churches there are dozens to visit!!
There are shops but as we only had hand luggage didn't really bother .The hotel has free wifi which kept the wife entertained!
I hope you will enjoy the experience as much as we did and come away with a different outlook on PD as I have.
Thank you so much for your quick reply that is just what I needed to hear. This will be helpful to my husband as well as he has been a bit negative about the whole place. It sounds like a beautifull place - can't wait Will let you know how we get on when we get back. Hoping it will be within next couple of weeks or next Spring when weather might be better which would please the husband.
The weather in the mountains is very unpredictable you could leave it till the spring and get torrential rain you could go now and have good weather. Couldn't say when's the best time .
By the way if you are on Sinemet you do know about not having protein for an hour befor or after as it interferes with the absorption of Levodopa.
Also There is a book published by PD warrior which you can get on Amazon that has a lot of info and exercise programme you can do at home.
Thank you so much for all your help - I am pleased to say I am going with my husband to Italy on 30th October. We are staying at the same hotel as you and your wife. Really looking forward to it - not many people here in UK have heard of the Therapy Centre.
I do know about the protein issues with sinemet but thank you for the warning. Will let you know how I get on when I get back.
What are the particulars? I would like to investigate going to this Center in Italy but your post gave no particulars as to how to contact this Center. Could you please either post or send me the particulars. If you don't have my email I would post it. It is sarac7588@gmail.com
Glad your and your wife life has been improved by this center!
As a prior post says, where and to contact the center, is there a website you can provide ?
Is there any similar center in USA? Why did you choose Italy?
Back home, what did the center recommended you do to keep doing not to loose the benefits you had there acquired? (gait - step lengths- swinging arm - posture )
I was excited to hear about your trip to Italy & the EuPaTh. I was so excited I think I'm going to go this winter. I'm wondering if you have kept up with the program & if it is still helping you.
Have just returned from my morning fast walk! Despite a very hectic few weeks since returning from Italy have kept up the fast walking ,tennis and cycling,(need to concentrate a bit more on the exercises),It wasn't just about the exercise though it was about taking control of PD and not PD controlling me.
Being mindful,living in the moment and taking each day as it comes has been just as important.
Diet is important too and since returning to Spain for the winter has been a lot better
I concentrate all the time when walking and am learning how the neuroplasticity can actually work.
PDs friends include fear ,anxiety,pain, and Ive learnt NOT to let them take over my life ,they are there but don't control me .
Thought I'ld let you know , returned from Italy last Sunday. I had Daria as well who was extremely helpful and knowledgeable, Lovely girl, as were all the staff.
Unfortunately they couldn't help with my very heavy head when walking and my acute anxiety that causes hyperventilating most of the day. They said it is all Anxiety and I was stuck on the 4th Pillar which as you know is Psychological, acceptance etc.
You said you are doing fast walking in another post. I assume you don't have problems with your legs when walking so are able to do this. Is this something that was part of your exercise programme at the centre and is it neuro protective ? I can walk fast inside but not so good outside as that is when my very heavy head starts slowing me down. Would be interested to know anyway.
None the less I am glad I went an learnt the exercises. It was a very positive experience and would go again if needed. Loved the hotel and staff.
Hi Budsey ,glad you enjoyed your week in Italy and now you know the exercises hope you keep them up!
Sorry to hear you are stuck on the 4 th pillar.I think acceptance has really helped .
Remember the train. It's not just getting there it's the journey. Try to live every day as if it's the last . Live in and for the moment.
Try not to look back at what you used to do or forward to what you might not be able to do.
Enjoy every moment NOW.
We are powerless to change anything so enjoy the here and now.
Remember people rarely die from PD they live with it.
At 68 I am determined to continue doing as much as I can for as long as I can., maybe not at the level I used to but I'm determined not to give up anything .
Refuse to let PDs friends become your friends.
Fear anxiety and depression negativity are always there but you must be strong and positive and not let them into your life.
Every morning when I wake up I look forwards to what I am going to do.
It might be get the wife's breakfast ,my power walk, a bike ride ,tennis with friends,,a bit of gardening.anything as long as it's enjoyable and I'm not allowing PDs friends take over my life.
Until you can accept PD his friends will always be around .
You are so right, you certainly have taken it all on board. I must admit I know am going to get there now. I have always done loads of exercise and can always fit in more. When you know it's neuroprotective as well is's a real incentive.
Thanks for getting back and enjoy your winter in sunny Spain.
Hi, Bazillion, very interesting to read this. I'm living in Switzerland, I'm only 48 years old, but still working, I have to........ I'm unfortunately already on Sinemet, 3 or 2,5 a day (25/100). But since I take Mucuna (the 95%) from Eifelsan, I can a bit reduce my Sinemet !
So Switzerland - Italy is not far away.....do they give Vit. B1 injections.....?
Or are they open for it, do they know that doctor Costantini in Italy ??
terapiaparkinson.it/en/ you will find a lot of info on their website. The founder is Alex Reid who developed young onset PD . You can email him with your questions .I can only tell you what a visit did for me and how it changed my life with PD.
You have to remember there is no cure for PD but how we accept and allow it to live with us can make a huge difference in the progression of this inconvienience.For me keeping positive,exercise,and living for today in the moment ,has mad a huge impact on my PD.
Hello and thankyou for contacting me 4 yrs down the road!The EPTC taught me so much and whilst My PD has progressed a bit I feel as good now as Idid 4 yrs ago. I now take(reluctantly)Madopar100/25 3-4 times a day.After a few months the side effects were almost worse than PD and I nearly stopped taking them . Had to take 50/12.5 6 times a day fora while but have now gone back to 100/25 3 -4 times . a day. I am still playing tennis 2 hrs twice a week cycling 45-50 Kms twice a week, doing 70-90000 steps a day, maintaining 3 properties.Have taken up archery which I love, and been travelling USA 3 times and NZ this year.I did have impingement of my lt shoulder followed by a ruptured biceps which was horrendous for over a year but I’m now sleeping well( not pain free but acceptable) have joined PD warrior and was February Champion!I have to say I couldn’t have done all this without the support of my other half,She’s always been one step ahead of PDand makes sure Iam too.
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Nightmares !!!
B1 experience so far!
50 YEARS ON
John Pepper's reputation need not be besmirched
Very poor sleep. Suggestions?
