Christine - Interview 18
Age at interview: 68
Age at diagnosis: 61
Brief Outline: Diagnosed in 2004 with what she described as a 'mild form' of osteoporosis. Medication since diagnosis' alendronic acid and calcium tablets. A second bone density scan revealed that her condition has improved after two years of treatment. Her mother has osteoporosis.
Background: Christine is a retired financial journalist. She loves music and attends concerts regularly. Christine has hemiplegia, a chronic condition that has much reduced her mobility and dexterity
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Christine was diagnosed in 2004 and describes her condition as ‘mild osteoporosis’. She has been prescribed alendronic acid 70 mg once a week and Calcichew D3 Forte two tablets a day. She hasn’t noticed any side effect but wondered whether the gum problems she was experiencing at the time of the interview, were related to her medication for osteoporosis.
For the last twenty-three years Christine’s mobility has been much reduced due to hemiplegia following cerebral aneurysm. Due to her hemiplegia Christine cannot use left eye, arm and leg so both mobility and dexterity are much affected. She also has some visual deficiencies.
Until recently, Christine didn’t know that lack of or reduced mobility can cause osteoporosis. It was suggested to her by a nurse when she was admitted to a hospital because she had fractured her wrist. She also has a maternal history of osteoporosis.
When she fractured her wrist on the right side of her body; the side that has movement, it meant that Christine temporarily lost her ability to take care of herself, and therefore, had to go into hospital for two months until her left wrist healed. She found the experience of not to be able to do anything for herself frustrating and humiliating but said that the staff at the hospital was simply wonderful.
Christine can walk very short distances at a time but knows that weight bearing exercises are particularly important for someone with osteoporosis. She has read and sought advice as to what she can do given her lack of physical mobility. She says that weight bearing exercises can be as little as doing a routine of sitting down and standing up or going up and down the stairs. Her outreach physiotherapist has also suggested she starts swimming and has organised a weekly session for her at a private pool near Christine’s house.
Christine’s reduced mobility impinges on her ability to travel in the UK and abroad, but she loves music and the city where she lives offers plenty of it, particularly during the summer months. Christine lives near the city centre and has an electric scooter so she is able to attend musical events regularly.
A nurse raised the possibility that Christine might have osteoporosis and told her to ask her GP...
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My own experience is because I have been semi-paralysed for twenty -three years and, as I have learned fairly recently, long-term lack of mobility in limbs leads to osteoporosis. And after falling over many times and breaking many bones. Various people said to me, “Have you thought about the fact that you probably have osteoporosis?”
Well I had been falling over and breaking different bones for a very long time. But it was only about four or five years ago that somebody said to me could this be osteoporosis.
Was this a medical doctor who said that to you?
It was a nurse. This was after I had broken another bit of me and a particularly useful bit because I broke my good wrist by standing up and falling back and sitting on it. And since my other wrist doesn’t work at all that meant I was helpless. So they put me into the community hospital in [city]. And it was there that one of the nurses said, “Do you think this could be osteoporosis because it is such a long number of years that you have not been using your various limbs. And that always leads to weakening of the bones.”
I asked for a test, for bone density test. And that is the one I had, I think at the [hospital but I cannot be absolutely sure because I have been to too many hospitals and I forget which one is which. And they said yes it looked as if there was some osteoporosis and that is when I started taking calcium and then alendronic acid.
Christines physiotherapist has been most willing to help and to look for alternative...
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Weight bearing exercise, and since I am so incapable of doing real exercise I have been thinking about this a great deal and talking to various people. And weight bearing exercise can be as little as just standing up. So I do that as much as I possibly can.
Well I had advice to go to what I call the cripples gym [rehabilitation centre]. And I have been their quite a lot until I left that area because I was in [city area]. So it was very, very close to [rehabilitation centre]. But now it is too far. It would take me half a day to get there and back on my buggy. And the only way to get there is, as an alternative, is on what is called Dial-a-ride, which is a charity, which runs buses for disable people to go to places. But there are not enough buses and very often you cannot go when you need to go. So I ended up having to say, “No I can’t do this.”
So instead I am trying to do some other little form of exercise, and very recently I saw the special outreach physiotherapist, who suggested that maybe I could do some swimming. And I am about to start going once a week to have a little swim in the swimming pool in one of the hotels just down the [name] road here.
I was with the outreach physiotherapist because of my long term, very long-term chronic condition. And when I first came to [city] which is in 2000, I was put in touch with the outreach physiotherapist. She saw me then and it was she who recommended that I go to this special gym. And then I didn’t see her again. But fairly recently I met her at the gym at [rehabilitation centre], where she was supervising a small group of people with disabilities. And she said it was a good idea if she saw me again because it had been some years since she had seen me. And that was when she recommended that maybe I should try swimming. So, that is how I was in touch with her.
I went there in person but with the physiotherapist. This is the outreach physiotherapist who said it would be such a good idea. And then she went, was in touch with the head of the leisure centre at the [name] Hotel, because I cannot afford to pay the normal subscription fee for that. And instead he suggested that they would be prepared for me just to go once a week for a swim there at six pounds per time. So that would be worthwhile.
And how often are you planning to, to go swimming?
Once a week.
Well, [rehabilitation centre] has staff who are knowledgeable about a lot of different medical conditions, and so they are very good at recognising what things you cannot do. And then they say, ”Well, it looks as if you can do this one and this one. So let’s try those ones.” And that is worthwhile. And mostly they have been warm up on an exercise bike and then just the very few machines where I could do stretches and twists.
But it was good to know that nearly all the people who were there had some visible or obvious disability. And so you knew that you were not just with the super-fit young people but with people who needed to do this. So I felt very comfortable there. But I didn’t join groups.
Christine uses her electric buggy to get around which enables her to be independent and to...
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I can walk a maximum of 50 meters and even then I am inclined to fall over. I use a stick for that. So I have bought myself an electric buggy and I get around all the time on my electric buggy. And it is one reason why I bought this house because it is so close to the city centre, to everywhere I want to go. I can just zoom along on the buggy, it is wonderful.
I can walk a few yards with a stick. But in a big city there were very big problems. There were some, there were some national help called Journey to Work and I could get very cheap taxis in London. A very good system. The boroughs, each individual borough separately pays for this. And it is very good.
But in terms of social activities that’s not bad. One of the wonderful things about [city] we are spoiled for choice for music and I have no trouble on my buggy getting around to all the various colleges who have concerts in their chapels and getting to the [theatre], and the best one of all which is the [music hall] music room. And I go a lot to the coffee concerts on a Sunday morning because the price includes a free coffee at one of the two or three pubs very close by. So I do that a lot.
Christine overcomes her fear of falling because she believes being active is very important in...
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I think I have mentioned this before, but it is to do as much exercise as you possibly can. So that even though I am very limited in what forms of exercise I can do, I still try and do little bits of movement. And especially although you are not seeing it on this videotape, weight bearing exercise, which just means maybe standing up and sitting down, and standing up and sitting down as much as possible because that will keep the bones strengthened. And I have been given this advice and I believe it strongly.
Are you particularly aware of preventing falls? Are you particularly afraid of falling?
Both, I am very aware of falls and the possibility of falls. So in my house I have put in extra handrails and grab rails wherever I can. But, yes, fear of falling is a separate thing from being aware of falling, and is, I think, much more negative thing. So I try and fight against the fear of falling because I think that is inclined to stop you doing things. And because I have just said I feel very strongly that I must do things, that is the best way of keeping the bones strong, I cannot allow fear of falling to keep me just lying down.
Christine was impressed by the way she was treated by the nurses when she couldnt do anything...
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The main thing about is, it is just so humiliating not being able to do anything for yourself. I found one of the most humiliating times of my life, mostly because my underlying condition when it came on so suddenly it left me totally paralysed down one side. But at least one half of me was functioning. But when I broke my only good wrist then nothing of me was functioning. It was disgusting, but they were very kind to me in the [city] hospital, very kind. So...
So it must have affected you emotionally not to be able to do those things for yourself?
Because it seems to me like you are quite an independent person.
Yes, that was, that is what I said when I said it was so humiliating. That really did affect me very badly.
When you say that the staff at the hospital were kind can you elaborate a little bit more?
Well what I meant about kind, was kind and practical. Although I had to have everything done for me nobody there made me feel that I was any less a person because of this. Even when they were having to wipe my bottom and bath me. I did not, was never made to feel that I was anything but a real person. So I was impressed with that. Very impressed with it.
And did they seem to have the time for you...
Yes, yes I felt that they really did.
OK, so they were not…
I mean everybody was very busy but it did not feel as if they could not do things because they were so busy.
And you stayed there for how long?