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 | You and Yours - Transcript BBC Radio 4 |
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| TX: 10.04.06 - MS Living with the condition PRESENTER: LIZ BARCLAY |
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| BARCLAY Now earlier in the programme we heard some facts about multiple sclerosis but one of the problems with MS is how variable it is - the disease manifests itself differently in every individual so there is no typical case. Two people who live with MS have been telling us their stories. Nathalie Fricker has relapsing remitting MS and is currently in remission. Paul Oakley is severely disabled with progressive MS and is now unable to speak and cannot move or get out of bed. His wife Heather began by telling us how she and Paul start their day. HEATHER OAKLEY Well Paul sleeps on an inflated ripple mattress, so it's three foot six wide and it lies on top of our five foot double bed. I used to sleep in the one and a half foot gap left on the side of the bed, which is about the width of my hips. And about four years ago I had a cold and I decided I needed a good night's sleep so I retired to the floor, which as you can see is a two and a half foot gap. Well at least I can roll over in the night, which is something we all take for granted but it's something impossible for Paul to do. And then the alarm goes off at 7.00 a.m. and then I have to check that Paul's still breathing, which is a relief but then Paul always says it's a disappointment when he wakes up because he doesn't want to wake up and then you know we start another day. FRICKER Hello, my name is Nathalie Fricker we've just run out to grap a quick lunch, I'm taking a quick break from my job as an art director at Getty Images and I've got a short period of time I can sit and talk to you. Unfortunately I've got to nip back to the office afterwards. My life before MS was very, very hectic, everyone thought of me as this really mad hectic person, I enjoyed me but I was always a bit of a perfectionist - I had to do it the best possible way. I worked very hard and I took things really seriously - it was all really important - and I was the kind of person - I wouldn't even miss a party, I was like a single person I'd go out and have a mad social life as well. I was also very much into running and trekking, that was my release on life. And I actually ironically thought that I was this really fit and healthy person. HEATHER OAKLEY Routine is what keeps Paul alive. The first thing I do in the morning is switch Paul's radio on and take off the quilt and straighten his legs. It's quite hard work because they're very stiff because they've been in the same position - bent up - all night to one side. But if you push down on his legs a little bit it stops the spasms. And then I have to dip a pink mouth sponge into some [indistinct words] paste which looks like thick wallpaper paste and I pop that in his mouth and it refreshes his mouth. There you go - open. Thickened liquids are easier for the throat muscles to deal with because they travel slowly. Paul isn't meant to have anything by mouth, although I restrict the wallpaper paste to a minimum Paul can and does choke. FRICKER My MS really hit me out of the blue. One day I thought I was a hundred percent healthy and the next I was diagnosed with MS. It was November 2003 and I was over in the US on holiday, we were seeing my brother who's a research cardiologist. I was losing sensation from my bum down and he took me into the hospital ER and they hospitalised me right then and there. I had my first lumbar puncture when I was actually in the ER room. By the end of the week I had three doctors in my room telling me that I had MS. At first I couldn't believe them and I couldn't piece all the bits of my life back together but then I realised and remembered that 12 years prior to the second attack I'd actually had optic neuritis in my right eye and lost my vision but at the time I'd just been told that it's a cold in your eye, here take these pills, which are steroids and it went away within a month. I completely forgot about it. And it was only looking back that I could manage to put these pieces together and so that's actually how they managed to come up with the diagnosis so quickly. HEATHER OAKLEY Do you want the pillows over, pulled over? I lower the inclined bed that's raised at 45 degrees to flat so that I can pull Paul up the bed, making sure I don't pull his shoulder sockets out, there's no longer any muscles keeping the bones in place. Then there's drugs which are put down a peg, which is a tube that goes straight into his tummy. I empty urine that's collected overnight in the drainage bag and then I set up a balanced liquid feed, which is fed through a pump at a certain rate, straight into his tummy via the peg and that will last until 6.00 p.m. Then I leave Paul listening to the radio until I return at 12.45. FRICKER The first months were not pleasant, I was a bit of a mess - I was very neurotic and very worried. I ended up confined to bed, which was very, very hard because I'm used to being a very active and a person running around doing a lot of things at the same time. I had buzzing and tingling in my legs and my feet, it's that feeling that you have when you're standing on a train and that vibration going through your feet and that's what you feel pretty much all the time. The fear element to me was the hardest thing to get over with the MS. Now that I know about it I just sort of - it's just more annoying rather than painful. HEATHER OAKLEY When I get back from my paid job I rush in and I look at Paul and check he's all right and then I start the toileting procedure, which is all to do with timing, like cooking. The bladder is far easier to manage than bowels. Paul has been using a catheter for over 15 years and the first few times Paul cried. FRICKER I'm very lucky in that I had just met my future husband a month before I was diagnosed and he had the strength of character to stick around and be there for me. The big question when you have MS is whether you do go on to the drug treatment therapy or not. Firstly actually you have to be offered it because you have to have symptoms but then you have to make this decision - are you going to do this or not? There are four different types of drugs that you can choose from and I actually did decide to go on Copaxone, which is a daily injection. My attitude is really anything that could potentially help me curb the disease has got to be good, even if I don't really know exactly what it is. HEATHER OKAKLEY Paul, when he's on good form he can mouth a few words, he can raise his eyebrows or laugh silently but that will cause him to choke or he screws up his face in desperate sorrow. When Paul's not so good it's very hard to understand him and the slight flicker of an eyelid is a yes or a no to the answer to our questions really. All are exhausting for him. TELEPHONE RINGING Hello. Hi Pam. This is Paul's mum, she lives in Spain and I just have to hold the phone to Paul's ear. He can't really speak but at least he can hear his mum. Okay I'm putting his phone to his ear. Have you finished Paul? At 9.00 p.m. I put on a one and a half litre plastic bottle of water into the pump, so that that goes through the peg and hydrates Paul overnight. I'm convinced that that's what's keeping Paul alive. FRICKER I had to make the choice to come off the Copaxone, I'd recently got married and approaching 40 and really wanted to have a family and this was something that was very, very important to me. And so that decision to come off it was very easy because they don't know what happens and you have to come off the drugs for three months at least before you actually conceive. And now I'm in the second trimester I feel better than ever actually and I've had no MS symptoms at all. And I believe that there is some research that pregnancy is the best state to be in with MS and they're looking into hormone treatments that mimic pregnancy. And so that decision was very easy but I have really promised myself and my doctors that I'm going to continue the treatment as soon as I can after I've had the baby. HEATHER OAKLEY Luckily I think because it's a flat and we're all - so it's all - every room's opened on to a hall I think Paul can actually hear most of the time what's going on and we can also hear him choking, which means he's laughing. PAUL'S DAUGHTER I'm just going to play him the flute yeah? FLUTE PLAYING PAUL'S DAUGHTER Okay? Alright then. HEATHER OAKLEY This might seem like one big moan from start to finish and a lot to bear for the girls and myself but Paul has shown such courage, great humour and compassion that we've never considered giving up. This is where he belongs - with us. FRICKER I still feel as though I'm full of life and energy, I just have to channel it more carefully. I see no point in spending my time questioning why me, life's not fair, I shouldn't have this. Instead I just want to kind of get on with things and get on with my life to the best of my ability. I think that this was the reason I decided to run the London Marathon in 2005. I didn't run as fast as I had before but I still finished in four hours and twenty six minutes. I proved to myself I could do it and it was very emotional when I actually crossed that finish line, I was in tears, it was a much more emotional and satisfying feeling than the times I'd done the marathons before. So here I am, I'm 39 years old, with MS and having a baby and I feel great. BARCLAY Our thanks to Nathalie Fricker and to Paul and Heather Oakley. A longer version of this audio diary, details about today's programme and information on MS can all be found on our website. And tomorrow we'll be hearing the theories about what causes MS. Back to the You and Yours homepage The BBC is not responsible for external websites |
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