Irene - Interview 41

Age at interview: 68

Age at diagnosis: 49

Brief Outline:

Diagnosed in 1989 at the age of 49 and put on HRT and sandocal. In March 1990 diagnosed with breast cancer and underwent lumpectomy and radiotherapy; HRT discontinued. First DXA scan in 1998. Now on alendronic acid and Adcal D3. Improvement in bone density and now she has osteopenia rather than osteoporosis.

Background:

Retired teacher; married with two adult children. In 1994 she joined a new exercise project for osteoporotic patients run by a local hospital in her city. She exercises three times a week.

More about me...

In October 1988 Irene experienced severe back pain while lifting her weekly shopping out of the car. The pain was so bad that she had to take time out of work on three separate occasions.

 

In February 1989 she was admitted into hospital for further investigation. Initially doctors thought that she had myeloma but following a nuclear medicine x-ray she was diagnosed with osteoporosis. She had several vertebral fractures - wedge fractures therefore difficult to read in scan. Irene admitted that she didn’t know much about this ‘weird sounding disease’. She was discharged from hospital and put on HRT.

 

In March 1990 she was diagnosed with breast cancer and underwent a lumpectomy and radiotherapy. The HRT treatment was discontinued. In December of the same year Irene saw a consultant who only prescribed vitamins C&D for her osteoporosis and suggested a calcium rich diet.

 

Between 1991 and January 1994 Irene continued having no pharmacological treatment for her osteoporosis and her knowledge of the condition was limited. This changed for the better when in 1994 she became an active member of her local NOS Support Group and after her early retirement, Irene became the Newsletter editor; a job she has been doing ever since. Eventually, Irene became the chair of her support group.

 

In 1994 Irene joined a new exercise project for osteoporosis patients devised by a physiotherapist in one of the local hospitals. She was still on vitamins C&D only. The exercise project has proven very successful and continues running as an ongoing project for people with osteoporosis.

 

In December 1998 Irene had her first DXA scan and for the first time she received medication for the osteoporosis; Didronel. In 2002 her medication was changed to weekly Fosamax plus Adcal D3. A second DXA scan indicated that her bone density has increased by thirteen per cent.

 

Since 2004 and with the agreement and supervision from her consultant Irene decided to take her osteoporosis medication on alternative years. In 2007 her DXA scan showed further improvement in her bone density. Irene is no longer osteoporotic but now she is been re-classified as having osteopenia.

 

Irene is a firm believer in exercise to manage and improve osteoporosis. She no longer attends the specific classes at her local hospital but goes to other classes run in the community centers. At the moment she is doing Easy Exercise – an aerobic-type class. She also started going to Salsa Fit class and Tai Chi. Irene said that she is careful when doing certain things like lifting or climbing a chair but that osteoporosis does neither affect her ability to do things nor her social life.

 

Irene explains how the exercise programme for people with osteoporosis came about and how it has expanded outside the hospital setting.

And do you know how the exercise group started, whose idea it was?

 

Well, yes, the then consultant, the surgeon in the Infirmary, had been down to the physiotherapy department and asked the physiotherapist in charge if they could make up some exercises for his osteoporosis patients. Because people suspected I think at the time, now we’re talking about 19-, when would it be now? the early 90s, knew that exercise would be good but they didn’t know what, when, how or why it was good. So there was a young physiotherapist there who was, wanted to do her Masters degree, and she asked whether this particular aspect of things would be a good project for her thesis. And it was accepted, and that’s how it started. And it was really thanks to this consultant in this Infirmary that it all started. And then after that all the physiotherapists became, it became city-wide in the hospitals in, at that time. And then the leisure centres and the instructors in the leisure centres thought that would be a good idea as well. And it became more widespread. And it came up to the Infirmary and they were instructed by the physiotherapist or the particular one that did the exercises, but all of them knew about the things, what was good and what was bad for people who had osteoporosis. And they were told what to emphasise, what not to emphasise. And then they went out and they started up, in a couple of leisure centres they had a couple of these classes for people with osteoporosis. Then the health board got in on the act and it became an umbrella thing, and it’s very heavily subsidised by the health board now. And they recommend people to go.

Irene said that the exercise programme was like a 'drug trial' study. The physiotherapist compared between patients taking part in the exercise sessions and those who didn't (the placebo).

In between times they were starting an exercise programme in another local hospital in the area. And it’s a, it was a young physiotherapist who was doing it as part of her studies and was accepted as the thing. And I was very fortunate to be taken on as part of the exercising group of the, the whole thing. Because the same as testing a drug and a placebo and the drug. The placebo in this case were the people that didn’t exercise and the people, the other people that got the drug were those who exercised. And the, we were measured at the start of our twelve weeks’ stint and measured at the end of the twelve weeks, of this time, as were the control group. Now those of us that had exercised had made some improvement, whether it was a bit more, a bit more brisk, a bit more confident maybe in some cases or we could stand up a bit easier or we could stretch even one centimetre more. And that’s really more or less what happened with the exercise thing. And at the end of the twelve weeks everyone became part of the exercises. Now it’s become part of the, our crowning glory in this area are the, is our exercise sessions.

Irene talks about the type of movements included in the exercise programme for people with osteoporosis.

Well, it was mainly medium impact e-, exercise that we did. But this particular physiotherapist had also, she brought in another instructor from, well, another nurse in the, a junior nurse in the hospital was doing this, this sort of thing as well. A lot of it was, well, we did circuit training, that sort of thing we did, part of it. Now circuit training, we’re talking about specially designed for people with osteoporosis. So it was kind of gentle type stuff, although it was medium impact type of stuff. I’m trying hard to think of what else I’ve done this sort of thing. First of all there was a lot, you’d to walk around briskly to get heated up. Then there was quite a bit of jumping up and down, skipping along sideways. I can’t describe it. I can’t even show it to you because [laugh].

 

And then bending, well, stretching exercises. All the things that you would be doing in an aerobics class as, as, I mean there, there’s not really much difference except that this would be geared less impact stuff than you would do in a, in a normal sort of class. And the people that go to the, when they start doing exercising here, they go along first of all and they’re very very gentle exercises, which are actually more gentle than we did when we started off. But you’ve got to encourage people that haven’t exercised for a long time that they can do it and make them feel they can do it. And when I say to them when I talk to them at any time and tell them about the things I do, they’re looking at me as if to say, “Really?” “But, yes, really you can do it, but you’ve got to build up to it very, very gradually and make sure that you’re okay.” I’ve always got to tell people if they’re going to take up exercise at all, make sure you talk to your GP, you talk to a physiotherapist, any, you must do all of these sort of things for your own safeguard.

 

I mean do you think that the physio who ran the courses was reassuring to people that they wouldn’t break a bone by doing exercise?

 

Well, they, they normally this is the fact, they all go happy to the hospitals, to the physiotherapists. Possibly I think in the back of your mind is you feel, “If I fall, break a bone, I’m in the hospital, I’ll be taken straight away.” That’s never said, but I get that feeling.

 

 

Irene explains how she got involved with her local support group and became responsible for producing their Newsletter.

From 1991 to 1994 I continued having that, went to my work and just more or less agreed I had osteoporosis. Nothing much was done about it at that time. And all of a sudden in the press there was an interview with some lady who had osteoporosis. She turned out to be the founding member chair of the [city] group, support group. So I phoned her and poured out my heart to her and got all the sort of attention which I needed and got a bit more support. And went back to the… I was still working. Well, she said, “You, you can do computing. Can you maybe come and do some work for me as, no, not a, not work as such, but a bit of voluntary stuff like doing the newsletter?” However, I had to say I didn’t have time at the time.

 

And in January 94 I went back to the osteoporosis group and offered my services, which were looking for committee members. And I thought, “Most people run a mile.” [laugh] However, she said, “Yes, would you please do the newsletter.” Which has been, I’ve done that ever since.

Irene's support group organises various activities including talks by local health professionals.

Well, we meet once a month, the second Thursday each month and we try to have, well, we try to have speakers that are to do with osteoporosis. We try to have a doctor, one of the osteoporosis nurses, a physiotherapist and hopefully a nutritionist is supposed to be there. It doesn’t always work out. We have got, we have several patrons. We have a political patron. We have a physiotherapist, that was the one that started off the exercise as a patron. We have a Glasgow writer as a patron. And we also have a, another clinician as patron. So we can always go to them and say, “Will you please come and give us a talk?” And people come along and say to us, “Oh, I thought you were talking about osteoporosis.

And this is where I come out with this thing again. “But we’re not here to dwell on the fact we have osteoporosis. We’ll talk to you about it. We’ll give you our support. We’ll tell you what we have found.” Because we’ve all been at the stage of being, feeling isolated, feeling, “What on earth has happened to me?” But I think part of the thing is that they describe it as being crumbling bones. And I think the fear of that is you could look at one of these characters in a cartoon where someone raps you over the hand walks away with you in the end because your bones have crumbled into the bottom of your body. And I just say, “Well, that’s not really what it means. It means ‘do something about it’.” Although I must admit it isn’t always possible. People have got a lot of things, and they have osteoporosis come along with other things involved that you think, “Well, okay, you need support, so what can we..?” And part of it is the fact that we can’t, we don’t give medical advice, we’re not medically qualified. But what we can do is say, “Well, if you speak to Dr so-and-so or...” Well, we’re very fortunate, the doctors are very very helpful with us, very helpful and very willing to come and talk to us. And they, I think probably because we are very much involved with the health board as well and we’ve got the support of the health board. And they come along, the nurses are great, they come along and talk to us about, they tell us about different sort of things, all different aspect of things. We’ve had an occupational therapist along to talk to us. Which was good, because it means that we know. It’s especially good if we’ve got a newcomer at the group that doesn’t know anything about it. Most of us are old hands at the group, “I’ve heard this story before.” But it’s good to refresh our memories about things. And it’s especially good if a newcomer comes along that’s totally, “I’ve got osteoporosis. What am I going to do?”

 

And they find out, “Well, you can sit and enjoy our company. That’s one of the things you can do.” And, well, we try to have other things like, we have, because we live in this city, we try to have something which is related to the city. Because somebody once asked me, when I was chair of the group, “Why are you having this..?” I can’t remember what the thing was. And I said, “Well, it’s because we are in the city and its part of the history of the city and it’s good to find out about it as well.”