Those more affected by osteoporosis had difficulties with walking even short distances. Cressida said that since she started on morphine patches she is able to walk a little bit but when she is shopping she cannot carry anything, so she has used an electric buggy for several years now. Similarly, David walks a little bit but just inside the house and whenever he goes out he uses his wheelchair.
Mobility aids such as wheelchairs or buggies had enabled several of the people we talked to be more independent. People who had used them said that they were useful when going shopping, sightseeing, visiting friends or going to concerts. For a few people, like Joan, it enabled them to be outdoors rather than staying at home all the time. But using a wheelchair made Pat feel ‘awful’ because people tended to ignore her and treated as though she was disabled mentally. Dennis thought that people were insensitive to those in wheelchairs because in his experience rather than talking to him, people often directed questions to the person pushing the wheelchair.
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
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.
Fear of falling had made several people much more wary of going out in bad weather conditions that may exacerbate the possibility of having a fracture and therefore putting at risk their mobility and independence. Some people said that they made sure they walked on level surfaces and avoided slippery ones. Others were more aware of road obstacles, wore sensible footwear and used a walking stick when outdoors.
Retired nurse, married with two adult children. She is an active member of both the osteoporosis and coeliac disease support groups and says that she is having a 'very busy retirement'.
It’s just be aware of my spacial attitude, you know. I used to walk with my head up. Now I have to keep an eye on uneven ground in case I trip. In fact I fell in [supermarket’s] a month ago up in [city]. I was up with my son and there was some what looked like crushed apricot on the floor and I went down and I’ve still got bruised knees and we are complaining about it to [supermarket] because the treatment I received was minus abysmal, you know. And there are on-going letters about that because I don’t want other people to be treated in that cavalier fashion that I was treated, you know.
But no I’m very, very conscious as I said of I won’t go out in I won’t walk on frosted ground because I am afraid of falling. I will tramp across a field, in fact, up on the canal if the tow path is frosted I, I don’t gamble along like I used to because the surface underneath the frost is uneven, you know. So hard surface walking I’m fine but I am more conscious now than ever of the ground that I am walking on, you know. My eyes are down to the ground rather than my head up in the air because I yes, I am afraid of falling. Which I shouldn’t be really, you know.
Some people managed to use public transport. Sydney went twice a week by bus to the city centre to shop for groceries. His main concern was to avoid big crowds because he felt unsafe, so he goes early on a Saturday morning and during weekdays he avoids the rush hour. Others pointed out that their restricted mobility, inability to stand up for long periods or back pain was exacerbated when using public transport. Emma didn’t use trains because she needed help to climb up and down the trains and also assistance when going up and down the stairs at the station. However, Victoria Iris regularly travels on long train journeys but she books in advance and only travels first class because the seats are more comfortable. Several people, like Sarah, found the seats in trains and buses uncomfortable and painful to her back. A few people said it was also a problem when seats weren’t available or offered to them and they had to stand for the journey. Another physical problem that may affect using public transport is the inability to carry weight. (see also Pain and other physical problems in osteoporosis). Susannah gets help with carrying her luggage on and off the train.
Retired NHS ward clerk, married. Sarah had an early menopause at the age of forty-two and a hysterectomy. Nationality/ethnic background' white British
I can say about the travelling. I find it very difficult now to travel on the trains because the seats are very plastic, you know, plastic support with a thin bit of material, and as the train’s going, going back into the seat behind me. By the time I get to my daughter’s, which is 25 minutes’ journey, that’s all it is, I’m nearly bent over with pain. And yet last year I managed to go to the south of France on a French train and Eurostar, nice and comfortable like armchairs, so I was able to sink back. So thank you South-West trains for making my 25-minute journey agony.
And when I first, well, a month after I’d had the last accident I attempted to go to my daughter’s, and she gave me a candle to carry, to come back with. And I was weighing it in my hand, I couldn’t carry it to the station, just the weight of that, because I could feel it pulling. And even now, so all those months later, as I’m sitting here I can feel it between, across my back. And I have to keep readjusting myself. I must look as though I’ve got ants in my pants, people who don’t know what the trouble is.
What are your problems now, what are your limitations?
Well, I’d say travelling.
On South-West, as long as it’s like an armchair I’m okay, but, as I say, South Western trains are really bad. They, they have got some padding, but it’s so thin and I find my spine being thrust into the padding, not into the padding, into the plastic very uncomfortable. And I get to the end of the journey just bent over. And when I first did it, I was on a train, I couldn’t get a seat and I was standing there looking really pathetic. I thought, “Surely somebody’s going to offer me a seat.” But nobody did. And I was, “Oh” I was holding on to my spine. I phoned my husband on the mobile and I said, “I can’t get a seat and I’m in agony.” And I thought, “Perhaps somebody will hear me.” But they didn’t. I’m just too trusting of human nature.
So traveling in public transport is a problem.
It is a problem, especially if you have to stand up because of course it jolts and stops. And it’s a horrible place to have it.
Age at interview:
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Retired deputy head of a large secondary school; widow, regularly attends exercise classes and a tea dance session every week. Victoria Iris has been an active volunteer of the National Osteoporosis Society for many years.
I find weather hazards very difficult. Now we’ve had a lot of wind in my part of the country this summer, an extraordinary amount of strong wind and I’ve found that quite hazardous, very difficult for you to appreciate but I’ve, because as I get older my balance isn’t good I do feel I’m at risk of being blown over. And I do have to be careful. And of course you’ve only got to have wet weather and, and at a time when the leaves are falling and that is treacherous. And of course we all know that I would find it difficult with snow and ice. So that it does make life much more complicated is the word I’m after.
I travel on ships and planes but always have to have assistance. Wheelchair to and from but on board ship I can cope once I’m there. And I do travel on my own. I’ve been on two cruises this last year.
I do need assistance as I mentioned on and off planes and even trains. I attend quite a lot of meetings in London and I’m escorted from the taxi, over the line to a waiting room and I always have to book. Often it’s two months in advance to get a good seat and it is really wonderful how they look after me. When I’m going to London the buggy wagon is awaiting for me when I get to Euston and sweeps me under the concourse to a taxi. And then I just get in the taxi or I’m put in the taxi. I go to my meeting and I come back and there its role reversal. No shops these days but nevertheless I’m very grateful that I can still do that.
I still am able to drive for which I know I’m very grateful and very fortunate. And I have a disabled sticker and I’ve had it for three years and I’m about three months through the next three years so I’ve got to keep fit and make sure that I make full use of that because if I didn’t drive I would find I wouldn’t be able to look after myself. I would not be independent because I can drive to get my shopping. I can drive to go to the hairdressers, to the doctors and I even am able to give my brother who can’t drive. He’s always had eye trouble and since he’s been 70 he’s not able to drive. He’s younger than me and so I still can give him a lift, he and his wife a lift which does me the world of good to think I can do something for somebody else particularly as it’s my brother.
Another mobility problem that prevented several people from using public transport was difficulty with climbing stairs. Several people said that they no longer felt confident to go up and down the stairs in public places, such as railway or metro stations, without assistance. When visiting her family, Sarah’s grandchildren always take her back to the metro station and help her to climb down the stairs. Emma no longer uses the train to go to work and Betty had to change hospitals because her mobility has deteriorated to such an extent that it is not longer feasible for her to travel by public transport.
People had dealt with their transport difficulties in several ways including relying on family and friends for lifts, using taxis or deciding to drive everywhere instead of taking public transport.
Widow, works full-time as an office administrator. Lives with her two adult children and has an active social life. She has noticed some improvement since started on Strontium ranelate.
Walking is the main part, has gone down completely. Before I used to walk from my home to the station and from station to the if I go by train, then to the work. But that doesn’t happen. The first thing is that I don’t have that much, gradually what happened that I needed some help to climb up the trains and everything and you don’t get that help. So because of that reason I don’t go by train. So that’s a limitation. I can’t go by train and specially the trains which has got very high platform and there’s a gap between the, that is impossible, that I can’t go. Climbing up the stairs I used to do very quickly. I can’t do that at the moment. Only I can do like first floor. I try my best to go up to the first floor and then I can’t do it.
So how do you manage to go to work if you can’t take public transport now?
I go by car. I’m very lucky to have a parking at my work place and people who have, I get letter from my doctor that because of my disability I cannot walk. I’ve got limitation of mobility and because of that reason I take my car to work. And now I have bought this house in a way so that I don’t have to work very far, because sometimes I used to carry my shopping for about two, three weeks or maybe month in the car, and the one thing at a time and when my son comes he used to bring the things in the house.
Some people had used air travel and those who required assistance said that they received preferential treatment, such as airline staff providing wheelchairs to help transport them around the airport. But the carrying of suitcases from their home to the airport is one problem that has put several people off travelling by plane (see also Osteoporosis, social life, leisure and holidays).
The people we talked to had different attitudes towards driving a car. In general, the newly diagnosed and people less affected by osteoporosis said that they preferred to walk rather than drive. Walking had become part of their exercise routine and they only used their car for long journeys or for shopping. For other people however, driving a car was a vital necessity and gave them independence, because their limited mobility would make using public transport impossible. Emma can no longer go to work by train and uses the car instead.
People valued the independence that driving a car gave them, and said that it was cheaper than using a taxi and more practical than relying on hospital transport to attend hospital appointments.
Married with two daughters, before retirement Joan worked as a local government employee. Her husband is her main carer. Joan's advice to others' ask questions about your condition and medications. Nationality/ethnic background' British
Well we’ve got the car. We go out shopping. I take a wheelchair, use that around the shop. And I mean it's all the supermarkets now, you only need to go into one and you can get everything in the one shop. So that’s what we do.
Okay and the lifting, your husband?
Well I’m able to walk a little way you see to the car. He brings the car right up to the steps here. And then I am able to get down the steps and into the car, and then he puts the wheelchair in the back of the car and off we go.
My girls don’t like him driving now, because they say you are so dependent upon the car, that if anything happened, and it only wants the slightest thing for him to be involved in, whether it was his fault or not, they would turn round and say at your age you shouldn’t be driving. And if we lose the car well we are stuck. We would be housebound then.
It would be more difficult to do things like shopping and going to the doctors?
Yes, those sort of things. We depend upon the car.
Husband' The hospital is ten miles away. To get an ambulance, you have got to wait for two, three hours and when you come out again you probably wait two or three hours to get the ambulance to come home. Which is stress making isn’t it? With the car you can get there in your own time, get her out of the car, put her in the chair, push her into the hospital, and the same thing in return. Yes, it can be done, but it gives you one hell of a long difficulty day going up there. The Heath is bad enough, but there is no bus service. And then there would be the difficulty of getting Joan on the bus.
Joan' To get out of [town] its two buses.
Husband' That’s right yes, because of the difficulty of getting down there, onto the pavement, onto the bus.
Joan' Well it is not that, but I can’t take the wheelchair on the bus.
Husband' That’s right.
So you wouldn’t be able to use public transport?
Joan' No, oh no.
You would either rely on the ambulance to come and pick you up?
Joan' Or I’d have to get a taxi.
And that would be expensive?
Joan' Yes, it's about twenty something pounds to get from here to [town] by taxi.
Husband' As well as time consuming.
So it would be more than £40 just for a hospital appointment?
Husband' We get in there about say ten o’clock in the morning. Joan has a blood taken and then we sit and wait. You wait until about half past twelve. And eventually you see somebody who hums and hahs, looks at the papers and says fine, carry on with the treatment and we come out again. And it's time consu
Age at interview:
Age at diagnosis:
David lives at home with his parents and siblings. He recently finished university and now works full-time as a Customer Relations Administrator. He loves is independence that he says are facilitated by his car and wheelchair.
I’ve been driving now for, ‘cos actually I passed my test just before I broke my leg, or hip fractured my hip. And I thought it was coincidence you know, but I’ve been driving for two and half years, three years. And yeah, it basically gives me so much independence you know. Without that I would either be stuck or be skint ‘cos I’d have to be paying that much in taxi fares you know? To get to town from here it’s£12. To get home it’s near on £25, so you’re talking that you know I want to go out everyday of this week, you’re talking £100 before I’ve spent any money on whatever, you know shopping or …
Went to town yesterday in my car you know, that would’ve ‘cost me £25 in taxis. Now I can see my friends. Before I had my car you know I didn’t really have that much of a social life but now I’ve got it you know, I mean I used to get taxis to and from university, it wasn’t until the latter part when I passed my test I could drive to and from Uni. But now since I’ve drove I can see anyone, you know go anywhere, it’s great you know, and I’ve come to Oxford.
To, I wouldn’t have been able to get there you know without that, or if you’d have paid for a train I would have got on the train, do you know what I mean? It’s ridiculous, you know it would have been ridiculous, I needed to pass the test and I think when I was getting, as it was going through the process of getting a car I didn’t realise how important it would be. But now I can’t think of doing without it do you know what I mean? Like when I had the crash you know I was out for two weeks, I didn’t know what to do with myself. I got on the train to and from work, it was an absolute nightmare, you know? But I still managed to get there anyway, but yeah I love driving, you know? And that, I mean that and the wheelchair are the two most positive things I can have you know? It means I can be able to be independent and still maintain a life and, so yeah. Couldn’t do without ‘em.
Several people said that they do less driving than before because it can get uncomfortable or painful to be in one position for a long time. Joan continues to drive to Switzerland but now she tends to stop every couple of hours or so.
This person is a retired teacher, lives at home with his wife and both are in their eighties. James recommends vertebroplasty to others because he says that he enjoyed, albeit briefly, its benefits.
Ten minutes is about the average, yes. Just occasionally I can do a little bit more but they told me at the hospital not to try and push through the pain barrier.
And before you started having this backache how much were you able to do in terms of walking?
Well, I have I suppose until about four years ago I could do a couple of miles quite easily, before that very much more. I’ve been quite an active walker.
How old are you now?
Late seventies you were still walking quite ….?
Oh yes, quite comfortably. And I must say until then I, I thought I had the strength and the energy to do what I wanted to do. What I needed to do which was fine. It’s been very difficult coming to terms with that
It’s one of the reasons why since I’m in the way that I am she’s (wife) in the condition that she is we can’t travel very far. I can still drive and so can she but twelve eighteen miles is my limit because if I go that distance in order to do something I have to bear in mind that I’ve got to travel and drive back again. If we have to do anything longer than that until now my daughter or my son in [city] has come over to take us. But my daughter has gone to Spain and she’s no longer around for us to be able to call on her.
Until now I’ve been fortunate in that my daughter’s been able to take me. And she did so the last time I went in June before she left for Spain. Fortunately, my immediate neighbour was able to come and collect me when I was ready to leave the hospital and that was a great help. But when I have to go in September I don’t know what’s going to happen. It’ll probably mean I’ll have to get a taxi.
Have you talked to your doctor, to your GP or to the hospital people about it?
Yes, I understand that there is a facility but as it happens the operation takes place in the private hospital. They have the equipment there to do this procedure, the vertebroplasty procedure, and I was told that they won’t take people to a private hospital. Now, I have to confirm that.
You are an NHS patient.
A few people changed their cars for one with automatic transmission, power steering and more comfortable seats which made driving much easier. Joan felt safer and more confident when driving a car than when walking. Robert’s new car with purpose built seats meant he could now drive for 2-3 hours in comfort. A few people stressed the difficulty of getting in and out of cars. Ann finds that going into a bigger car is easier than getting into a small one because she doesn’t have to bend. After climbing in to the back of a two door car, Betty hurt her back so much that afterwards she spent the following week at home in pain.
People living in large cities said that they enjoyed subsidised transport schemes provided for elderly and disabled people. Christine was able to continue working thanks to a local government’s scheme called “Journey to Work,” which enabled her to go to work by taxi at a reduced price. Betty used the “Dial a Ride” scheme for her hospital appointments, when going shopping or to the theatre but she needed to book it a week in advance.
Widow, retired secretary, lives on her own flat in sheltered accommodation. Betty uses herbal medicine extensively and has accumulated a great deal and knowledge about it.
Due to the transport problems in getting to [name] hospital in, no, sorry getting to the hospital in the centre of [city], due to the bombings and everything and also my increasing disability I couldn’t travel on the tube I had to stop treatment because the hospital was right down in the centre of [city] and on the central line. [traffic noise] And that was in the last time I went there was in July 2006. I then saw the specialist again there. He said, “Oh oh, leave it for a year.” Was twenty second of May 2007 and said then when I saw him that I really couldn’t manage to get down into [city] because my daughter had to come with me that time.
And I then got referred to a doctor a specialist at a hospital which is about twenty miles away from here but it’s outside the M25 so therefore my daughter can take me in the car and we can park in the disabled space at the hospital, very easily.
And I try most weeks we’re lucky here we have the local council and the [city] Transport organises services for the disabled and older people. And we have a dial a ride which you can get and we go as a group from here and we go to two different shopping trips, trips, one on a Thursday and one on a Friday. And you sign up and you can go on that which is a tremendous help.
And where do you go? To a supermarket or.
Yes, yes there’s two. We go either to [supermarket] or [supermarket.] One day to [supermarket] one load to [supermarket]. I would have gone today but with you coming I couldn’t so I signed up for [supermarket] tomorrow so I’ll pop down. But I got my big order up yesterday, my big order that came up and.
And that is every week.
It goes down every week, yes, yes.
Oh, that’s good.
Oh oh, it’s very convenient.
And then [name] Transport as such organise you can sign on with them if you’re sufficiently disabled and they do a very, very good one and to one service but you have to book about a week ahead to get the specific time you want. But if I have to go up to the acupuncturist or anything on my own if my daughter can’t take me or if I have to go anywhere else I ring up a week before and the transport actually comes to the door and they’re extremely good. If you need it they have a lift at the back that you can go up on a lift. It’s really designed for disabled people.
But you can only have one return trip a week. That’s, that’s minimal cost, it’s one fifty for up to five miles I think it is which is great.
But you need to book it in advance.
Well, yes I mean.
A week in advance?
To get a specific time you need to book a week in advance.
You can ring up and say, “Can you do it any time tomorrow?” But you with [company name] you’d be lucky if you get it. Dial a ride is not quite so difficult but even then it is very difficult to get occasional bookings particularly if you need a specific time. So like for the hairdresser, if I go to the hairdresser at the top of the road, you have to have a taxi which is four pounds each time. Eight pounds return, you know, which adds to the cost and you have to do that to go to the doctors. It’s just impossibly expensive.