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Margery - Interview 40

Age at interview: 72
Age at diagnosis: 58
Brief Outline: Diagnosed in 1994 after a DXA scan revealed severe osteoporosis. Her consultant prescribed Fosamax at first, then added Calcium, Vitamin D and HRT. Currently she carries with the same treatment minus HRT and takes Calcichew D3 Forte. She has regained bone density and is osteopenic.
Background: Margery is married and has two adult children. She is a retired college lecturer. She served as chairman of a local group in Scotland for nine years and a trustee of NOS for five years.

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It is despite her GP and thanks to her own persistence that Margery was able to obtain a proper diagnosis of her osteoporosis. For several years she had been diagnosed with having a slipped disc. After severe pain caused her to faint and fall in her kitchen one morning, Margery was not satisfied with her GP's diagnosis particularly since she knew that her early menopause was a risk factor for osteoporosis. Of her own initiative, she went to consult a physiotherapist who concurred that one of her vertebrae was probably damaged and advised her to get an x-ray. The x-ray revealed that she had osteoporosis at 58 years of age.
 
Margery’s GP would say that osteoporosis was a normal part of aging. Thanks to a neighbor, she discovered the existence of DXA scans even before her GP. It took her a year before she was able to persuade him to allow her to get a DXA scan and to locate nearest facility 80 miles away. The DXA scan revealed that she had severe osteoporosis. The DXA scan consultant warned her to get treatment right away since at the age of 59 her bones were that of a 70 year old and deteriorating fast.
 
After her DXA scan the consultant put her on what was then a new drug' Fosamax (alendronate). Since her condition continued to deteriorate she was also prescribed calcium, vitamin D and HRT. With HRT, her condition improved but after six or eight years it was discontinued because of other health risks associated with it. She received a total of 6 DXA scans over a 12 year period.
 
She has gained 22% of her bone density and now she is osteopenic. Her GP and osteoperosis consultant at a local hospital see her condition as stable. She continues to take Fosamax, Calcium and Vitamin D.
 
Margery says she was "shattered" and "shocked" to be diagnosed with osteoporosis at a relatively young age. At the same time she knew that the disease was not fatal and that treatment was available. Margery became very active with the National Osteoporosis Society helping set up a local support group in Scotland and serving as a trustee on the national board for over five years. Although she is still a member of the NOS and will still has speaking engagements for the organisation she has since retired from her main responsibilities.
 
In her daily life, Margery used to feel a lot of pain when doing housework. Most of the time she would try to tolerate the pain and take as few painkillers as possible. She also used to sometimes be immobilised for several days at a time. With HRT she noted an increase in energy and an ability to do many more things. Today she can still lead an active lifestyle although she can get tired if she does housework all day for example, her back pain "comes and goes". She takes a number of precautions' she eats less fatty cheese to control her weight; she refrains from heavy lifting to avoid pain between her shoulder blades and takes showers rather than baths. She also avoids going out in the ice and snow so as not to risk falling and injuring herself. At the same time she speaks of her determination not to let osteoporosis "dominate" her life and prevent her from pursuing her hobbies and leading an active social life.
 
Margery notes that her own GP’s attitude (since retired) change dramatically over the years' He went from dismissing the disease to actively promoting DXA scans. Margery maintains changes such as these largely to activism on the part of patients organised by support groups. She believes that patient’s activities have helped raise the profile of osteoporosis with the general public and medical professionals. 
 

Margery has had six DXA scans that over the last twelve years have monitored the effectiveness of...

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So I went and had this DXA scan and was seen by a consultant who informed me that my bone density particularly in my spine was really quite bad for my age. One of my vertebra had a T-score of minus 4.5 I think it was which at the age of 58 was really quite, by now I think I was 59, this was really quite severe. And his words to me were, “If we don’t get you treated by the age of 70 you will be in a wheelchair because your bones are already those of a woman in her mid seventies to eighty.”
 
He straightaway said that I needed a new drug, a comparatively new drug, called Fosimax and Alendronate and he thought this was the best treatment for me.
 
I took this drug for eighteen months before I was sent, I was recalled for a further scan and unfortunately the results were not good. Not only had I not failed to lose any more bone, I had actually lost more and the consultant was very concerned and immediately put me on to a calcium and vitamin D and HRT.
 
All together I have had six DXA scans and once the HRT and the new treatment, the combined treatment began to take effect my bone density showed a tremendously encouraging improvement. I was kept on the HRT for I think altogether six or eight years. I had no adverse effects from it. I found that it improved my life quality in many ways. I had a lot of energy and I really felt very well on it, but at the end of that time because of various scares about breast cancer and so on my GP said he thought I had been on it long enough.
 
Since then I have kept on the Fosamax and the Calichew D3 Forte. There has been a slight falling off in my bone density but it’s not significant. Overall the density of my spine has gone up some 22% and as I have got older of course my bones would have got more porous anyway, so in fact I am now osteopenic for my age. I don’t actually have osteoporosis as such and I consider myself extremely fortunate that without this treatment I would not have been able to lead the active life that I have done.
 

Margery’s support group found out that other specialists in the hospital didn’t know they had a...

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Locally I think possibly our biggest contribution has been helping, we didn’t spearhead the campaign but we did a lot of work and we raised money to get our own DXA scanner at the local hospital which has cut out this long journey for patients having to go over into England for a DXA scan. We have one member who actually had a spinal fracture in the ambulance being taken all that way to be scanned. So those days are over.
 
Locally we are very, very fortunate to have a lady consultant who is passionate about osteoporosis and we’ve formed, as a result I have to say, of help from our MP who is our Patron, after we got our DXA scanner we discovered that it was not being very frequently used and our MP called a meeting in the hospital and we were appalled to find that of the consultants who attended it from other specialties, some didn’t even know that there was this machine in their hospital to which they could refer patients from perhaps geriatrics or another specialty and so as a result of this, people from each of these related specialties formed an osteoporosis working group on which our group secretary and I served and we met twice a month in order that right across the hospital and within the group information was being shared about osteoporosis treatments and we could hear how the DXA scanner was being used, how many people were being referred.
 

A combination of HRT and bisphosphonate significantly improved Margery’s bone mineral density.

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He straightaway said that I needed a new drug, a comparatively new drug, called Fosamax and alendronate and he thought this was the best treatment for me.
 
I took this drug for eighteen months before I was sent, I was recalled for a further scan and unfortunately the results were not good. Not only had I not failed to lose any more bone, I had actually lost more and the consultant was very concerned and immediately put me on to a calcium and vitamin D and HRT.
 
All together I have had six DXA scans and once the HRT and the new treatment, the combined treatment began to take effect my bone density showed a tremendously encouraging improvement. I was kept on the HRT for I think altogether six or eight years. I had no adverse effects from it. I found that it improved my life quality in many ways. I had a lot of energy and I really felt very well on it, but at the end of that time because of various scares about breast cancer and so on my GP said he thought I had been on it long enough.
 
Since then I have kept on the Fosamax and the Calcichew D3 Forte. There has been a slight falling off in my bone density but it’s not significant. Overall the density of my spine has gone up some 22% and as I have got older of course my bones would have got more porous anyway, so in fact I am now osteopenic for my age. I don’t actually have osteoporosis as such and I consider myself extremely fortunate that without this treatment I would not have been able to lead the active life that I have done.
 
 
 

Margery talks about some of the benefits that the National Osteoporosis Society can offer.

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One of the problems at the moment is that the people who founded these groups, perhaps as much as twenty years ago, are now getting much older, and we are finding it very difficult to get people to come into groups and to take, as we have here, to take over roles, say of chairman or treasurer or secretary. And unfortunately some of our groups are having to close, but others are coming forward and I think the group probably serves a better function, in an area where the National Health work for osteoporosis perhaps is a little thinner on the ground and it is almost as a natural cycle where you have a group in an area where the local provision is not great, that group can encourage, it can lobby, it can work, it can raise awareness and it can encourage these services to be provided by the NHS and in a way the group has perhaps then fulfilled its purpose and its role can be taken over by the NHS, so there is a kind of pattern across the country, of areas where you have very strong groups, able to say, well we have done our job. We can hand over, we’ve got a good service locally, we’re still there, we can still support people, but we haven’t perhaps got that lobbying function that we had initially.
 
So groups come and go, they fade in and out, but there is still an important role for them to play and some of our groups are absolutely wonderful. They do a fantastic job and they have people full of enthusiasm keeping them going, offering support. We must never, ever think that lay people can give medical advice, but there is a role for support, for people who want to share their experiences with other people who are suffering from the same condition, who know that there is somebody there sympathetic, who understands what they are going through, who can come to us, rather than bother the doctor, to get a leaflet about osteoporosis, to find out what the treatments are, what the latest developments are in osteoporosis research. So the group has an important function to play. It may have to change its, the way it works, it may not be able to function perhaps as regularly as it did when its committees were younger and fitter, but it still has an important role to play.
 
If you need some support, emotional support, may be when you are in pain or feeling a bit down, who do you get that emotional support from?
 
The best thing I think or one of the best things that the National Osteoporosis Society has is their telephone help line which is available to members and non members and at the end of the help line there is a team of nurses and speaking from personal experience I have found them sympathetic, warm, very knowledgeable, very encouraging and able to answer just about any question that anybody wishes to fire at them. I really think that the help line is one of the best things that we have to offer. In addition of course a great range of literature available to members and non members but if you want a one to one conversation with a knowledgeable sympathetic person, then the help line is the answer.
 

Margery believes that the NOS needs to find ways to engage more people who have osteoporosis or...

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There are some people who regard osteoporosis as associated with growing old, and looking like an old lady with a bent back, and one of the things that is most difficult is to involve those people who simply do not want to acknowledge the fact that they may have osteoporosis or they may be at risk of it. I think all of us in groups have come across the person who you only have to look at and you know that they have osteoporosis and you very tactfully put this to them and the response you get is, I don’t want to know, I don’t want to admit that I’m getting old. And people sometimes wonder why our membership figure at about 23, 24,000 out of a population where we know that one in two women over fifty is at risk of a fracture why are not more of these people members of the National Osteoporosis Society? And I think this could be part of the answer. That we must find a way of getting through to these people that they must acknowledge the fact that osteoporosis is there, that they have it, or they are at risk of it, and that something can be done and that they are not going to end up looking like their grandmother who was bent double at 85. That medical knowledge is now so much greater and that osteoporosis is something that yes, you have it, but it can be treated. I am not in a wheelchair at 72, but I was told that without treatment I would be. And we must get through to people that it is not something that just old ladies suffer from and that if you have it, that’s it, nothing can be done, and you are going to end up looking like a question mark with a bent back.
 

Margery has seen a big improvement in the knowledge of osteoporosis in her general practice.

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My doctor said he didn’t even know anything about it. Bearing in mind we are talking something like fourteen years ago when the knowledge of osteoporosis in general practice was nothing like what it is now.
 
My own GP, who has now retired, had a tremendous change in attitude, he called me, his pioneer, because I almost pushed him into taking notice of osteoporosis and he became very enthusiastic about sending people for DXA’s. I don’t take the full credit for that. I think this was a trend that was happening anyway, but it was encouraging to see how much more seriously he took it and how he was prepared to look at new treatments. It may have helped that his own mother in law was diagnosed with it. And so consequently his wife may inherit this tendency, but I have seen a big, big improvement.
 

Margery has had a motor mover fitted to their caravan so they can now move it using a remote...

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I love gardening. I am interested in art, and in paintings. I read a lot. And we travel a lot. We have a caravan and we go abroad every year with that and we have exciting holidays with that. We have had that fitted with what’s called a motor mover, which means that we have none of the heavy hauling of caravan to do at our age and it was a very good investment. So we can caravan without any fear of it damaging either of our backs.
 
Tell me more about that, because that is something that would interest other people.
 
Yes, a motor mover is an electronic gadget which can be fitted near to the wheels of a caravan and it can be clamped on when you have to move the caravan without the car being attached to it and it is operated by a remote control, rather in the same way as you would operate a video. And you can move the caravan forwards, backwards, sideways, you can turn it round, and it takes all the heavy weight out of pitching a caravan when you arrive on the site, or hitching it up when you leave home. And it has enabled many caravaners to continue into old age when the sheer effort of pushing a caravan would have become a real burden for them. It’s a good investment.
 

Margery felt her weight was putting a strain on her back and knees. Her doctor advised her not to...

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Any changes that you have made to your diet?
 
Yes. I have tried I did feel I was overweight, though my doctor told me I haven’t to lose too much weight because it did protect my bones, but I was and still am slightly overweight now and I did try and reduce. I have lost two stones in the past about three years because I felt that my weight was putting a strain particularly on my back and on my knees. I do try and have a high calcium diet. I eat, always have yoghurt and cheese and I try to keep a balance between too much fat not getting enough calcium.
 
I have always had a very high consumption of fruit and vegetables, always salad every day and a reasonable amount of protein. I am not a vegetarian, but I do try and, I’m interested in food, I’m interested in cooking and I do try and have a good health diet.
 
I have cut down on very fatty cheeses. I tend to eat cottage cheese and lower fat cheese now. I cut out all sweet things. I tend to get my sweet from fruit rather than from cakes and biscuits and so on. I have cut down slightly on size of portions as well. I think perhaps quantity was important as well as the quality of the food.
 

There was no DXA scanner in the area were Margery lives and she had to travel to a big city to...

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We had no facility for that in our area. My doctor said he didn’t even know anything about it. Bearing in mind we are talking something like fourteen years ago when the knowledge of osteoporosis in general practice was nothing like what it is now.
 
It took me a year of persisting with my GP that I wanted to have this DXA scan. We discovered that the nearest facility offering this was about eighty miles away and would require crossing the border into the north of England.
 
Eventually at the end of turning up in his surgery time after time asking to have a DXA scan he said, “Oh for goodness sake. Go and have one. I am sick of hearing about a DXA. You go and find out about it and tell me what it’s all about.”
 
So I went and had this DXA scan and was seen by a consultant who informed me that my bone density particularly in my spine was really quite bad for my age. One of my vertebra had a T-score of minus 4.5 I think it was which at the age of 58 was really quite, by now I think I was 59, this was really quite severe. And his words to me were, “If we don’t get you treated by the age of 70 you will be in a wheelchair because your bones are already those of a woman in her mid seventies to eighty.”
 
 
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