I will try to bring you up to speed on my PMC, now it is over. Most of the course was really good. The first week was mainly taken up with intoducing new ideas and then building on them slowly. During this time we were assessed and appointed our key workers (counsellors) and had our first session with them. The second week was the most intensive, and week 3 was more about looking forward to how we would change things once we went home.
For the exercise part, the stretches were demonstrated on the second day, with a chance to try one or two, by the third day we were led through the stretch program, and on day 4 we did the stretches and had the circuits demonstrated to us, and on day 5 we did the stretches and circuits. During week 2 we recorded all our circuits and then calculated our baseline, and on week 3 we worked to the baselines, with discussion about how to grade up the exercises, and what kind of exercise to move to next. For me, this was the least useful part of the course, as there was no opportunity to adapt the exercise program for my condition.
There were also daily relaxation sessions as well, and over the three weeks we were led through various techniques, starting with how to breather. I found these sessions very good. As a group we were all willing to try anything, so we got a lot out of this, even if some of us regularly fell asleep. The emphasis was on finding a technique, or preferably techniques, that worked for you, so you could use them whenever you need a bit of chill time.
There were session on medication given by an experienced pain management nurse. We looked at the various types of painkillers, how they work within the body, the possible side affects, and given individual time with the nurse to discuss our own medication. She also talked about timing the doses of various medications, and some of this was new to me. This part was also excellent, and although there were suggestions that she would help us to reduce medication if we wanted to, there was no pressure to do so.
The psychology sessions were also very good. We looked at how we perceive ourselves, and how we appear to others, unhelpful thoughts and how to change them, methods of communication and whether they were effective, assertiveness and a couple of other things. I found these sessions very useful, and they do challenge you to look at your own behaviour, assumptions and thoughts.
The OT on the course covered a number of topics. In particular, she looked at pacing, pacing, and more pacing, flare up and set back plans, the benefits of exercise (we came up with 52, a new record), and goal and task setting. She also got us to estimate our tolerances for various activisties, and then how to measure and calculate out actual tolerances. This was a bit of an eye opener for many of the group, and some found it rather depressing, but it did focus our attention well. These sessions give you a number of useful tools to help you practically manage your pain, and I found most of the ideas very helpful.
All in all, I think the course was well structured, and well run. It is led by a team, with no one person in charge, and this works well too. The day begins at 8:30 with stretches, and finishes anywhere between 3:30 and 5:00. You are expected to attend all sessions and this was probably the hardest part of the course for me as my fatigue has been really bad recentle. I did find that it got easier as the course progressed. The individual counselling sessions are also useful, and the key workers (psychologist, OT, nurse, physio/OT, assistant psychologist) counselled 2 from the group. We were assessed during the first few days and allotted the key worker that they felt was appropriate for our individual needs.
The individual elements of the course gradually fit together to give the whole picture (like a jigsaw), so as the course progressed there was more and more overlap between the various sessions. There was also a fair amount of discussion time allowed for in the last week, and we made the most of this. The course is planned so that we went home at weekends, and this gave us time to reflect on various ideas, and maybe try a few things out, as well as seeing our families. We also had 2 activity afternoons, where we had to plan an activity out. We went shopping in Hay for the first one, and went to the health spa for the second. It was an opportunity to try out some of the planning and pacing techniques, with a post mortem afterwards to look at anything that you would do differently next time.
The best part of the course for me was being within a group of people with pain as our common factor. (No need to explain!). The course is residential, and the staff go home as 5:00 p.m, so you spend a lot of free time with the other group members. As a group we seem to gel very quickly, with very little friction. Yes, there were minor differences, but the tolerance levels were very high, as was respect and appreciation of other people. Over the three weeks we bonded deeply, to the point where we didn't really want to go home, and many tears were shed on the last day. Pain management courses, when they work well, are like a journey leading to a new stage of your life. OK, this may be a cliche, but there is truth in it as well. I think I have learnt a lot from it, as well as having an enjoyable time, and made 9 new close friends but I do wish there was a PMC for people with HEDS/HMS.
Hope this has answered some of your questions.
Diagnosed HEDS December 1st 2005. DD1 (20) HEDS and scoliosis (now corrected by surgery), diagnosed June 2006. DD2 (18) mild HMS. Son (11) some hypermobile joints, poor muscle strength and seems to be developing scoliosis as well, woopee!