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Clare - Interview 20

Age at interview: 65
Age at diagnosis: 64
Brief Outline: Participation in a biomedical study revealed that her bone density was below the normal margins. A DXA scan confirmed a diagnosis of osteoporosis. Prescribe alendronic acid 70 mg once weekly and Adcal D3 two tablets per day. Maternal history of osteoporosis.
Background: Clare is a physiotherapist and since diagnosis decided to work part-time. She is determined to exercise everyday and makes sure she keeps a high calcium intake.

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Clare says that she has been ‘disgustingly healthy’ all her life but, as a health professional and as someone with a maternal history of osteoporosis, she was well aware of the condition. She also has low TSA count (thyroidstimulating antibody).
 
In November 2007 she volunteered for a medical study that involved among other tests, a bone density test and height measurement. Clare found that she had lost one inch in height and her bone density was below the normal margins. She went to her GP who sent her for a bone density scan that confirmed she has osteoporosis. She was put on alendronic acid and Adcal D3, two tablets a day.
 
Clare is determined to exercise every day and she tries to go for half an hour’s fast walk every morning before breakfast. Also, her attitude to using the car has changed since diagnosis. Now, she prefers to walk to places rather than relying on the car all the time. She also does Pilates and swims once a week.
 
Since diagnosis she has increased her calcium intake. At the hospital she attended to have her DXA scan, she found a leaflet in the waiting room about high calcium foods. She says that Ready Brek, a type of cereal is very high in calcium. She dislikes it intensely but has it everyday for breakfast.
 

She has many questions regarding medication and exercise and says that information on certain websites aren’t that helpful because they tends to answer the obvious but they lack the type of information that she is looking for which is an explanation of the different types (approaches) for treating osteoporosis.

 

After her diagnosis Clare decided to stop working full-time because she wants, as she put it, ‘do more living’. Clare says that osteoporosis doesn’t really affect her life and hopes that her medication, diet and exercise will keep it this way.
 
 

Clare would like a private consultantion with a specialist that is unhurried so that she can have...

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I can’t understand why I’m not taking vitamin D in with the calcium and the alendronic acid. I would very much like to know the physics or the chemistry of what happens with alendronic acid when you take it. And why you have to take the calcium. That I haven’t really found out from anywhere.
 
And if I could find somebody who could tell I’d be really grateful. And the other thing is, I wondered whether there was a specialist who specialises is osteoporosis so that one could go and just have one chat to ask all these questions. 
 
At the hospital?
 
Yes. Hmm.
 
So you would like to see a specialist?
 
I would, I think. I would like to have one private appointment with him so he wouldn’t be hurried, he could tell, answer all my questions and tell me more as well. Not just the good side, the down side and everything about it. So then I’m prepared for whatever might happen. Because I’ve had patients who’ve had osteoporosis, you know, a lot of them. And as they get into 80s and their vertebrae concertina, they’re in agony. Now whether the alendronic acid prevents this or whether that is what is ahead, I’d really like to know.
 

Clare took part in a couple of surveys on osteoporosis, which led her to see her GP and request a...

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I think it was in 1989, somewhere around there, the [hospital] was doing a survey on osteoporosis. And I was one of the people who went up and had some tests. And the result was that I wasn’t osteoporotic. I was well into the proper area. And so I really forgot all about it.
 
I then had a period in my life where I didn’t do a great deal except work. Worked twelve hours a day but didn’t do a great deal of activity. And obviously being a physio I was aware of the fact I should do activity. And so I went for another test. And I was still all right.
 
And then it wasn’t until last November when there was some research going on at the [name] centre, that they did blood pressure and height and so on. I’d lost an inch and I was down on the scale of bone density.
 
So I went to my GP, who sent me off for a test at the [hospital] And while I was there I had a look at the results [laughs]. And it was quite horrendous really. The bone density in my lumbar spine was not very good at all. And so then I was put on alendronic acid and Adcal, two tablets a day. And I’ve been taking it ever since.
 
I didn’t see a doctor. I just saw the radiographer. And she and I looked at it. And she explained to a colleague that the bone density was not very good. And obviously she couldn’t explain to me that sort of thing because it had to come from my GP. So she was explaining all this to a colleague.
 
And I think I was quite shaken because I didn’t think I would end up with osteoporosis really.
 

Clare thinks that her back pain has improved with her daily walks and rest sessions.

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I have lower back pain and it isn't a nerve impingement. It’s certainly an ache in, down the lumbar region. And there is no referred pain it’s just over the lumbar vertebra. And I'm very conscious that I have to stand upright because I find my back gets tired and I start having endorsal kyphosis. So I do make every effort to stand up, sit up.
 
And what else do you do when you, when you’ve had that ache? That pain? Do you take painkillers or… ?
 
Actually if I lie down for just five minutes the pain goes. And then I just carry on after that. If it, if I find that, it hasn't gone I might take a voltarol but I'm not one for taking tablets actually. I don't like them very much [laughs].
 
Voltarol?
 
Yes.
 
But how often do you tend to have that pain? Everyday or...
 
It's when I get tired. But if I don't have a rest after lunch, just sitting in a chair or lying down for twenty minutes, half an hour I find by the evening if I've got to go out and walk around places I am uncomfortable. And I've never had anything like that before. So I just presume it's osteoporosis because it doesn't feel like any nerve pain or sciatica or anything like that.
 
For how long have you had that pain?
 
Do I have to own up to this? [laughs].
 
Sorry.
 
Probably about a year now. Hmm. Hmm.
 
Has it increased in intensity or is it always the same?
 
No, I’ve thought about that and I think it's getting better. I think I find that I can do more, particularly if I've gone for a walk in the morning and got the circulation going and so on, it does help enormously.
 
To what do you attribute the getting better?
 
A combination of everything. I hope the alendronic acid is working and the Adcal, because it's absolutely revolting to take. But, I hope it's a combination of that, better diet and more exercise.
 
 
 

Clare, a physiotherapist, has a brisk half hour walk before breakfast and she goes to Pilates...

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And I think my backache is getting better. But I do make a concerted effort now to do exercise every day. So I try, don’t always succeed. But I try to go for half an hour’s fast walk every morning before breakfast. And walk to places rather than take the car. And if I go to Sainsbury’s I park the car a long way from the entrance so I’ve got that extra bit to walk. And in that way, I hoped I’d be getting more exercise.
 
I’ve also bought a pedometer. And you mentioned 12,000, 10,000 steps a day I think. So I do most days, I make an effort to do 10,000. And you just see what happens in the future really.
 
I do the garden, I do the house, I do, I walk, I swim, I ...
 
How, how often do you swim?
 
That's a good point. I try and swim once a week, because I walk five times a week and I give myself one day off but by not going everywhere by car, and being more active I go to Pilates and I’m teaching exercises all day, all morning anyway.
 
Well I do Pilates and I probably do a lot of back extension exercises, and postural exercises and stretching’s. I can't remember what specific ones I do.
 
Do you know any type of exercise somebody with osteoporosis shouldn't do?
 
Shouldn't do?
 
Shouldn't do?
 
Heavy lifting, jumping, that type of thing. High impact sport.
 
So one of the things that you have changed or modified after the diagnosis has been your attitude to using the car?
 
Yes, it has, and the increase in petrol prices. But that's recent, yes. Yes, I, I think I now view the car as somewhere if I'm going any distance I will go in it, but if I can possibly walk there I'll walk there. Regardless of weather [laughs].
 

Clare has oat-based cereal for breakfast and she now eats more green vegetables.

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Tell me about diet, what have you modified, what are you eating more of and less of?
 
I am eating Ready Brek every morning because on the sheet from the [hospital] it said Ready Brek was one of the highest foods in calcium. It’s revolting. So I eat that for breakfast and then I make sure that I have more green vegetables, perhaps than I had before. But I eat an enormous amount of salad and green, greens there with spinach salad or something like that. But I do try and have broccoli at least four or five times a week, and I drink a lot of water eat more fish. And that's all really.
 
And what have you, have you seen the need to stop eating or limiting certain foods or not?
 
Well I don’t, I don't smoke and I don’t’, virtually don't drink so I thought those were the two essential things not to do. And I just eat what's put in front of me or what I put in front of myself basically. No I don't really.
 
What is this Ready Brek?
 
Right.
 
Would you explain to us that?
 
It's, I suppose it's oats or something like that but modified and calcium added, it says on the packet. And it's in an orange package and you can get it from any of the big supermarkets. And I just have thirty grams a day and add some milk and then put it in the microwave for a minute and a half, which just cooks it a bit. And I add some raisins to it because I can't bear it on its own [laughs].
 
It's like a porridge.
 
It is. It’s like …
 
And does it taste like a porridge?
 
I dislike it so intensely, I find it hard to say [laughs]. Not a very good advertisement for it, is it? It doesn't taste a great deal. I suppose porridge would be the nearest thing, a very sloppy porridge would be the nearest way to describe it. It's flaky, sort of substance before you add milk.
 

Clare wants to know how she can help herself now so that she can maintain her independence as she...

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Any information that the doctor gave you about this medication or about how to take care of yourself?
 
No. There was no information. I think this is part of the, the trouble of being vaguely medical, they expect you to know it [laughs] And so I didn’t have any information and I then came home and looked up on the website and found the osteoporosis, porotic society, osteoporosis society and I didn’t find that terribly helpful in that the things that I wanted to know were, I may be larger than some people, is the dosage the same for me as it is for a small person of 4’ 10. How much activity should I do? What type of activity should I do? And can you overdo it? And just ordinary questions like that I found, I couldn’t really find the answer to.
 
Any other question that you had at that time?
 
I did wonder whether I, what was related to osteoporosis, what was related to the calcium being seeped out of the bones other than lack of exercise. Whether it was anything to do with my thyroid or any other glands. Or the endocrine system in general. Or hormones in general. But nowhere can I find the answer [laughs].
 
So, the number one concern is really, what are the alternatives, alternative treatments? Medications. How can I self-help? How, what’s the best routine that I should have in every day, daily living? And then what does the future hold? And, can I prevent this type of thing? The, the crushed fractures, can I prevent them happening?
 
So those are the broad outlines. And then, within that, with the first one, I was only told about alendronic acid. I was also advised about vitamin D but I didn’t, I wasn’t prescribed it. And why not? And what can one take, and what are the alternatives? I really would love to know.
 
And with lifestyle, I would like to know whether walking is better than swimming. Because walking is weight bearing, swimming is not. How much to do? And whether it depends on the severity of the osteoporosis how much you do? And as an individual why do I take exactly the same as everybody else takes, because I’m probably bigger or smaller than they might be?
 
And then for the future, if I’ve done the things that I’ve meant to do in daily living to prevent it getting worse, does this negate crushed fractures later on? Does it negate fractured head, neck of femur and so on? And have I got to live downstairs and not be upstairs and [laughs] in a wheelchair. The last scenario.
 
I think as we grow older we don’t want to be a bother to anybody so, or I don’t’ anyway, so if these factors that I am told now would prevent that type of thing, being dependent on other people, then that is a big concern for me really. Hmm.
 
Losing, losing your independence?
 
Yes, that’s right. Losing my independence [laughs].
 
Have you looked at any other website or found information?
 
No, I haven't, no. I decided to take the medication I was given and just get on with life and forget about it. And I'm so busy that I really haven't had time to think much about it anyway.  
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