How jealous I am when I read your descriptions of your PR courses! I had said that I thought every day was too much....I was right. It was a kind of 'one size fits all' kind of thing. We each had a chat with the doc. in charge, but, lovely man though he was, I felt that he did not have a handle on what he wanted us to achieve.
I started on a treadmill, on 2 lpm O2 for as long as I could manage. This was short lived. I started this course amazingly weak, and soon realised that most people were fitter than me. I spent a while between each discipline on oxygen, recuperating. There were lots of physiotherapists, but I have often thought that they do not do the really deep training here that they do in UK. A nurse took our BP, temperature and Sats at the start of each day. As time went on, my BP got lower and lower. (except when it went soaring up after hard exercise.)
I was hoping to be able to give them some feedback from our point of view, and to learn more of what I was aiming for...not just "To make you stronger!"
By the end of week 2, I was really weak and not feeling much stronger for all my efforts. At the weekend I tried to feel more positive, but, instead I had a sore throat, a bad cough and a fever! My GP came to see me and said to rest, increase my steroids, and take antibiotics. Having done this for 5 days, I now knew I could not go back to the same regime again next week, so I contacted my lung specialist, who said he would let them know.
I am usually very strong-minded, and if I set myself something to do, I do it! I am very disappointed in myself to have given up. I have started again on the You Tube videos for COPD exercises, and I will walk on Tuesday (with my husband and my O2) to our village monument for the Remembrance day service.
Apparently, the doctors are trying to get the Social Security,(who fund the course) to allow a more varied set up.....You ain't seen nothing yet 'till you have seen French Bureaucracy!
Lolly. x
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Sorry you had to give up Lolly. I finished my rehab about 6 weeks ago. It was 1 hour exercise half hour lecture, two days a week. I learnt a lot and enjoyed it. If you walk and do exercises from youtube for COPD it will certainly benefit you. We were told one hour of exercises three times a week. I can only manage twice a week due to still working. Good luck and keep on with the walking and exercises. xx
How disappointing Lolly. But dont give up the exercise - great idea to use You Tube for the specific COPD exercise. My husband bought a treadmill and uses that (not often enough!) - but just fifteen minutes a day will keep you active. Take good care of yourself, TAD xx
It can be very helpful to just do what you can when you can. Pete went to PR once and he was told they could not help him as he was unable to do very much at all. We were a bit disappointed but Pete stays as active as he can. Some days he just has to do nothing. I do wish you well and good luck being in France. It is a beautiful country but as you say.....bureaucracy!! Take care Lolly xxxxx
Sounds like a nightmare Lolly. Glad you got out in one piece
Hi, it's a shame you had to give it up but I think most of us would if I'll health struck.
Over here they normally let you make up the sessions you miss added at the end.
I remember on my course last summer there was a chap with O2 on all the time and struggling but by the end of six weeks he was working without it.
I'm sure you're doing the best thing by continuing your exercise with the help of youtube - aren't there some exercises on the BLF site too? . . I got a DVDs via Amazon (haven't watched it yet tho).
On another note Lolly, I'm moving to France for the winter (with my dog). Do you think the E111 equivalent is sufficient or shall I take out other insurance?
I cannot find my reply to you on the subject of the EHIC (European Health Insurance Card.) That is what I used 2 years ago when I was ill in the UK . I had no problems with it. As a matter of fact, no one asked me for it even though I was hospitalised. I gave it to them anyway.
H i Lolly - sorry to read of your disappointment as it had all sounded so good at the outset. That said, I think quality of PR must vary across the UK as I hear such glowing reports from copd'ers here that are a world away from my own experience of it. Unlike your French experience, no one took anyone's BP. or temperature and the only pulse ox available for measuring sat's was mine .... which I was not supposed to own or use! There was no treadmill - the only 'equipment' being an old exercise bike. The course took place in my local hospital - two bus rides and a long walk from my home at the time - and I even turned up on the day it snowed only to find the session cancelled! The one size fits all approach was well in evidence too - despite it's billing as 'individually tailored' - and the session on 'nutrition' consisted of the nurse saying 'well - it's no different to anything else really - just make sure you get your 5 a day and drink water'.
So .... you are not alone in your disappointment - in fact the UK has a high drop out rate as well as a low uptake to start with - very few patients continue with the exercises and even fewer 'progress' themselves onto regularly doing there own thing - and this is a worldwide pattern too. I confess to never doing the PR exercises at home - they were too darn boring and bought too little gain - so I decided to set my own challenges and exercise in the way I enjoyed - and I have gone from being very weak to being in pretty good shape.
PR needs a blo*dy good shake up world wide! Incidentally I am just back from the '1st Global COPD Patient Leadership Summit' in Madrid where dissatisfaction with, and high drop out rates from PR got a mention from a fellow delegate and very similar stories became evident from all around the world. I am very, very tired today as I had a rather harrowing and exhausting journey home - the hardest part being the journey from Gatwick to Cornwall on 3 trains - each of which was crowded, running late etc and all while dragging a suitcase, rather large wheeled oxygen concentrator and bag stuffed with paperwork, laptop etc. No food and barely a drink all day - I intend resting up for a day or three now - so am having a PJ day today. I will tell you and everyone all about the COPD Summit as soon as I have recuperated - Vanessa
Thank you for posting this. I too had an awful PR experience, and wouldn't recommend it. At least I know I'm not alone. What's appalled me the most, is that no one is interested in the feedback.
Hi Lolly2 , Sorry to hear about your experience with the exercise in a group, I am interested in which one you are following on youtube, could you let us know please.
What area of france are you in, I am also in france but there has been no mention of excercises such , there is no way I would have been able to do the tread mill and
Some of the ones I found were from the Canadian Lung Association, by Burke Rehabilitation and research, Upper body exercises. When you find those, there will be others listed as well. I'd recommend watching a few and finding your best starting level. I did not hurt after doing these ones, and remember, you do not need to do ten repetitions at the very first attempt.
Thanks Lolly2, I have found the excercises and can certainly find something there that I can do. How do you find the climate in Aude all year round. I went down to Narbonne and Collioure in October, it was superb weather but I gather it changes a fair bit in the winter.
The weather was less than good this year! We do get winter weather, and it is changeable. The 5 winds we get down here can make for exciting weather. Narbonne & Collioure are coastal, so can grow plants like Bougainvillea, while we, only 1 hour inland cannot.) The weather this October, as you said, was superb.
It was my 'Pneumologue' who talked about PR as if it was a new invention. I agreed to attend right away because of so many people here giving PR such a good write-up. We are in Carcassonne, in the Aude. I did the treadmill with oxygen ( 2l per min.) and was amazed at what was possible.
Lilly.. Sorry I will continue, the thing is live and posted on its own! my consultant arranged for me to have physiotherapy and this was very good indeed as she taught me all the exercises that I need to do each day to strengthen the lungs and chest muscles so that I can control the coughing. However as for exercises such as walking and to keep fitter nothing has been mentioned. I am in the Charente.
Peeg I am not sure about the insurance requirements but I think it is wise to get another insurance, which for example could get you home if you need to leave due to ill health. Ask the insurer what they can offer.
I have heard others talk about how they wished that they had also purchased private insurance as they had some problems getting medical attention and had to pay. We look forward to hearing about your winter stay in france.
It took 8 years for my son to get his national insurance card there. Whilst his French friend who stayed with me for over a year in London got his UK one within weeks. Now his wife and children are over too, the kids are at great schools the ones at the top of their chosen list. Good luck to them, they made a leap of culture.
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