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    Multiple Sclerosis - when your brain lets your body down
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    File NameDate ModifiedDownloadStream
    All In The Mind05/30/2006 09:20:21 AM

    Programme: All In The Mind

    Broadcaster: Australian Broadcasting Corporation's Radio National

    First Broadcast: Saturday 20th May 2006

    Transcript of Programme:

    This transcript was typed from a recording of the program. The ABC cannot guarantee its complete accuracy because of the possibility of mishearing and occasional difficulty in identifying speakers.

    Lynne Malcolm: Hi, Lynne Malcolm with you for All in the Mind. Today, multiple sclerosis—what happens when your brain lets your body down?

    John Blades: Wake up. Switch to normal mode. 'Hi guys'. Cap that. Comma. New line. 'It is necessary to begin putting together our performance for the opening night at the Performance Space on July 5.' Full stop.

    Lynne Malcolm: That's John Blades, sending an email to arrange his next music gig. He's using voice activation because he's lost all movement from the neck down. But that hasn't interfered with his passion for the music he directs in performances with the experimental music group, the Loop Orchestra.

    John has had multiple sclerosis for 24 years. Because there's still mystery around the causes of this disease and there's no cure in sight, he's decided to take control of his MS and he's determined to live a rich and active life despite his physical disability. John Blades is one of almost 15,000 people in Australia and two and half million worldwide affected by this inflammatory disease of the brain and spinal cord. And scientists are still searching for possible causes in the hope of preventing its onset.

    Dr Anne Louise Ponsonby, professor of epidemiology at the Australian National University, explains what MS is.

    Anne Louise Ponsonby: Multiple Sclerosis is one of several groups of chronic inflammatory diseases where there seems to be a problem with the immune system not recognising self from non-self very well, and actually being involved in self-attack of the body. For some immune disorders the targets are things such as the pancreas, in type 1 diabetes. For MS it's the myelin that surrounds the nerves in the central nervous system that is the main target for this inflammatory activity. It is a condition affecting the brain and the spinal cord, and then of course through the nervous system that gives rise to symptoms and signs in other parts of the body.

    Lynne Malcolm: Anne Louise Ponsonby, and we'll hear about her work on the causes of this disease shortly. Multiple sclerosis usually begins between the ages of 20 and 40, when people are at the prime of their lives. George Ebers, Action Research Professor of Neurology at Oxford University.

    George Ebers: You can imagine what it would be like if you just had some children or something and then you see the doctor and he tells you you've get this disabling disease—and there are a lot of uncertainties for people. The disease can be relatively mild, although on average eventually people become disabled. In the best case scenario people remain relatively well, and this can go on for 20 or 30 years. But certainly by the end of, you know, somewhere between 25 and 30 years, probably three-quarters of patients are significantly disabled. And so as time goes on that number gets larger and larger. There are some people who escape, for reasons we don't understand. I wish we could somehow transmit that to the people who do get themselves into trouble, but it's a cruel disease, it affects people's bladders and ability to walk. Sometimes it affects the ability to think, even, and so there are better things you can have.

    Lynne Malcolm: John Blades was diagnosed with MS in 1982. At the time, this involved an invasive lumbar puncture test.

    John Blades: The first symptoms were optic neuritis, a disturbance in the optic nerve, which has been described to me as if you could see pins and needles without the sensation. And I guess the next symptoms were numbness and tingling in my feet and fingers, and the numbness grew up both legs, so that in 1992, very reluctantly, I went into a manual wheelchair. And while these huge body changes were happening through the 1980s I was pursuing numerous activities—in line, I suppose, with my attitude to put the MS on the backburner rather than letting it take centre stage.

    Sherre Delys: Well here you are today, you're in a wheelchair, you've got no movement from the neck down. Tell me about the progression from 1982 to this point.

    John Blades: Once I was in the wheelchair the MS began to affect nerves that controlled my arm muscles, so my arms and hands became more and more difficult to use. And through the 90s, as the arms deteriorated, and then I finally had to stop driving in '97 and give up work in 1998—simply because writing had become difficult, filing, simple things like turning pages. But I also kept up all my activities. Really just making the most of my life. So in 1982 the year I was diagnosed I graduated from university, started work as a structural engineer, started work in radio, doing experimental music programs—so I was really pursuing an art and music interest developed ferociously.

    Sherre Delys: So it was a very mixed year for you, it sounds like a great year in many ways and yet you had this diagnosis hanging over your head. How were you feeling?

    John Blades: More positive than a lot of people who are diagnosed with the condition. I'd lived with my mother, who'd had MS. Her condition was fairly mild, she never needed walking sticks or anything. So I thought to myself, if MS is only going to develop to that degree, it's going to be quite tolerable. But little did I know.

    Lynne Malcolm: John Blades. There are still many questions surrounding multiple sclerosis, as Dr Anne Louise Ponsonby points out.

    Anne Louise Ponsonby: It is a very complex, multifactorial condition. Not only does it appear that several factors are involved in the initiation of MS, it appears that they may operate at various stages of the life course, right from very early life until just immediately before the disease presents. So it's a complex disease, where every little bit of the jigsaw puzzle that is completed really helps to lead to new knowledge, to assist our eventual goal of disease prevention and better management.

    Lynne Malcolm: You've also done some work in relation to exposure to other children in early life. Can you explain that work?

    Anne Louise Ponsonby: That work occurred in the context of what's known as the hygiene hypothesis. This was first proposed in response to finding that children from large families appeared less likely to have hay fever, which is an immune disorder. And since then there've been more than 50 studies that have found that either children who have high number of siblings, or who are exposed to markers of early life infection such as day care attendance, appear to have a reduce risk of asthma and hay fever. We went to look at that in the context of multiple sclerosis and what we found was that while family size overall didn't seem so important, exposure to infants during the first year of life was inversely related to MS. So that children who were exposed to more infants in the first six years of life were less likely to develop MS.

    Lynne Malcolm: So do you believe that this is related to the immune system being able to build up because of exposure?

    Anne Louise Ponsonby: Yes, it obviously needs a lot more confirmatory work, but it certainly is consistent with the notion that the immune system doesn't develop in isolation, but it's a very dynamic system where we need a certain amount of environmental or infectious exposures to help train the immune system to react in a very targeted, precise, focused way to the challenges that one might experience in later life.

    George Ebers: One hypothesis that I rather like at the moment is that it's going to turn out to have something to do with development, and if you think about things that are operative in early life, maybe late gestation or early after birth, two things are happening. One is that the nervous system is very rapidly developing and the second thing is that the immune system is very rapidly developing. And our guess is that it's going to have something to do with something that's amiss in this parallel development that takes place between the nervous system and the immune system.

    Lynne Malcolm: Professor George Ebers from Oxford University. In the search for clues to the causes of multiple sclerosis he's particularly interested in studying the interaction between genes and environment. And one way of looking at this interaction is to study twins, but as he and his team discovered, there aren't enough twins who are raised apart to study. So in the Canadian Collaborative Study of MS, which George Ebers led, they decided to look at half-brothers and sisters.

    George Ebers: And this has become possible because the divorce rate's been rising in Canada over the last 25 to 50 years and so there are lots of people who have half-brothers and half-sisters. And so the basic strategy actually goes something like this, that if you have a half-brother or a half-sister then on average half of them will be raised together in the same household and about half of them will be raised apart. And the ones that are raised apart usually are the result of those social consequences of divorce where the parents aren't speaking to one another anymore and people have these half-brothers and half-sisters that they sometimes have never met.

    And so what we were able to do is to examine the risk for MS in individuals who had it, and then had a half-brother or half-sister with the disease, and we could ask, was there a difference in risk between the people who are raised apart versus the people that are raised together? And the answer was absolutely not, there was no difference. The second thing that was possible to examine was—in this case you have individuals which are related through a single parent rather than both parents—and so you can ask whether or not risk is different. So if it's the mother in common, is the risk any different than if it's the father that's in common? Now ordinarily with a straightforward genetic disease it ought not to matter. But in this case it turns out that it matters a lot, and the mother is much more likely to be in common than the father. So the mother is transmitting some kind of risk in excess of what the father contributes.

    And the third part, which was probably the most surprising, was that when one examines the risk for half-brothers and half-sisters, the risk didn't drop very much, really contrary to expectation. The expectation was that it would drop a lot because you're subtracting a lot of factors that would be shared. And so the drop turns out to be a measure of the number of genes that are involved, and it's been widely believed that there are a lot of genes which interact together to make you susceptible; that's why it's been so hard find them. And the expectation was not borne out, so that the big drop that was supposed to occur didn't occur. So it's caused a major rethink of the whole inheritance story.

    Lynne Malcolm: Professor George Ebers. As we heard earlier, John Blades' mother had MS but his brother, Bruce, escaped it, and he is now John's live-in carer (but works full-time during the day).

    John Blades: I am at home here all day every day on my own, except for when the house is filled with people, but it is extremely important for me, being so dependent on people, and dependent to the point where if a door's locked, needs opening, or something has dropped on the floor that I need, or a phone number that I need to look up—well, I need to be able to get somebody to come and help me. And there's a system called Vital Call which is, if you like, my link to the world, and I operate it by blowing into a little tube and the blowing triggers the alarm system and rings through to their base.

    Vital Call: Your call is being connected. Good afternoon, Mr Blades, it's Chantal from Vital Call—are you okay?

    John Blades: So I say, 'Would you please phone so and so', and they've got their number so they call them up and if they're home they'll come in and give me a hand.

    Lynne Malcolm: John Blades' home is a rich environment. He's surrounded himself with thousands of books, videos, and CDs, so his mind can wander through vast worlds of art and culture.

    John Blades: My days are filled with reading.

    Sherre Delys: How do you turn the pages?

    John Blades: About the time that I started to have enormous trouble with my hands I'd sit in the house here, some days it would take me half an hour to turn one page. And I'd seen something called a 'head pointer' which is sort of like a band around the forehead and a cap over the head with a long wire attached with a rubber on the end for turning pages, and also useful for making telephone calls, operating TV and DVD remote controls. So my days are filled with reading, the computer, which I took on very avidly, and going to films, going to exhibitions, watching DVDs, going out to see music—so my days are very varied between those activities.

    Lynne Malcolm: You're with All in the Mind on ABC Radio National, Radio Australia and via podcast. I'm Lynne Malcolm and you've been listening to Sherre Delys speaking with John Blades about living with multiple sclerosis, a disease of the brain and nervous system which still has researchers puzzled.

    George Ebers: It fits in the category of what we call a complex trait. In some way people's genetic background is very important...

    Lynne Malcolm: Professor George Ebers.

    George Ebers: ...although the actual genes and how they interact have not really been completely identified. But for example if you take people who are Oriental and if they live in Vancouver or San Francisco they don't get MS despite the fact that Caucasians who live around them get lots of it. So that presumably it is determined by genes. And then the environmental part is equally clear-cut, in fact Australia has played an important role in shedding some light on this.

    Lynne Malcolm: Anne Louise Ponsonby is an Australian researcher who's trying to determine what environmental factors may be associated with MS. And it seems that something as simple as where you live and how much sun you're exposed to may play an important role.

    Anne Louise Ponsonby: Well one of the biggest signs we have that an environmental factor may be important is that the rate of MS increases as one moves further away from the equator, so that in Europe rates of MS are higher in northern Europe, in Scandinavia and so on, than they are in southern Europe such as Italy or Spain.
    And the similar pattern appears to be occurring for the southern hemisphere. And various studies have looked at the genetic contribution to that latitudinal gradient of MS, and genes alone don't seem to be explaining that latitudinal gradient.

    Lynne Malcolm: So that's actually showing up in Australia, isn't it, the difference between the prevalence in Tasmania and Queensland? Can you just explain that?

    Anne Louise Ponsonby: Yes, a very large, well-conducted study was done some time ago in 1981, and in that study the prevalence of MS was six times higher in Tasmania than it was in northern Queensland, and there seemed to be a gradient of increasing MS prevalence as one moved southwards in Australia.

    Lynne Malcolm: So what's involved in that?

    Anne Louise Ponsonby: Well, we don't know exactly, and that's one of the reasons why we're doing our current Oz Immune Study, to investigate that latitudinal gradient. But there are several candidates, and one of the candidates is ultraviolet radiation, sunlight, or vitamin D which is generated by sun exposure, because it's known that levels of sunlight become less as you move further south in Australia. And it's also known that sunlight and vitamin D have special properties with regards to the immune system in humans. Another factor it could be is a factor relating to infection, because of course the type of infection one has in cold climates is very different than an infection in tropical climates, particularly when you're looking at early life and the rate of exposure and the types of infections that infants might be exposed to, say, in Darwin compared to, say, Melbourne.

    Lynne Malcolm: Anne Louise Ponsonby. And as part of the Oz Immune Study the team decided to call on the experience of people living with MS.

    Anne Louise Ponsonby: We did an internet based survey where two thousand people with MS from all over the world told us what they thought made their disease better or worse. So it was a hypothesis generating study done in partnership with people with MS, where we could then take the information they provided us and fine-tune some of our questions and study measurements, to include the issues they were raising.

    Lynne Malcolm: So what were the key things that came out there?

    Anne Louise Ponsonby: That study of course is based on self report, and not just self report of what actually makes this disease worse or not, but also what may make the symptoms of the disease appear worse or not. But one issue that did come out in that, and it has been well known before, is the issue of heat-related fatigue, which is very much a problem for people with MS. And of course if you're thinking about sun exposure or building up people's vitamin D, then people have to understand that some people with MS are less likely to go out in the sun because when they do they feel unwell and have increased levels of fatigue—due to solar heat, not light. So it's a very important issue in the management of people with MS to try and make sure their vitamin D levels remain adequate, but keep in mind that sometimes, due to heat intolerance and increased fatigue, that they may prefer not to be in direct sunlight, particularly in hot climates.

    Lynne Malcolm: Because there's no other real effective way of getting vitamin D, is there?

    Anne Louise Ponsonby: Oh there're vitamin D supplements and we don't know enough yet to know whether vitamin D supplements and sun exposure are necessarily interchangeable. But in the US there was a large Nurses Cohort study that was published in 2004 and this study was on young adults, people when they started nursing, and it found that nurses who took daily vitamin D supplements greater than or equal to four hundred international units a day were less likely to subsequently develop MS. So they had a 40 per cent reduction in their risk of developing MS.

    Now in the literature people have said, well you know, that could also be that those sort of people taking vitamin D are often taking it as a multi vitamin supplement and they have a lot of other health behaviours that are clustering with that. And with an observational cohort like that it's hard to actually untangle what seems to be the exact effect. But that was one piece of quite important information adding to the growing literature that sun exposure or vitamin D may play a protective role in multiple sclerosis.

    Lynne Malcolm: Dr Anne Louise Ponsonby, professor of epidemiology at the Australian National University. And it'll be interesting to see the results when the Oz Immune Study she mentioned is complete. If it's the case that the vitamin D that we get from sunlight has a role in protecting against MS, what about the message we're constantly getting to cover up in the sun? George Ebers.

    George Ebers: If there's an uncertainty then I think that an intermediate position would be that one could continue to avoid sunlight and then perhaps make sure that people are not vitamin D deficient, which can be corrected, you know, by taking it by mouth. So on the one hand dermatologists are saying, you know, don't ever go in the sun because it increases your risk of melanoma and so on—which it does. And on the other hand, other people are saying, oh wait a minute, if you do that then people will be deficient.

    Sherre Delys: Have there been studies, say, with women who wear the veil, for example, who are completely covered?

    George Ebers: Well, what a good question, because there is a modest endemic rate of rickets in women in Saudi Arabia, where there's as much sun as you'd ever want to have, because of covering up. And the rate of MS appears to be steadily increasing. Now whether they are related or not it's still, you know, circumstantial at the moment, but not to be dismissed.

    Lynne Malcolm: George Ebers, Action Research Professor of Neurology from Oxford University. It seems that some headway is being made towards solving the mysteries of MS. There are some drug treatments now which can reduce symptoms and slow the progress of the disease. But people like John Blades can't afford to wait around for a medical breakthrough. He's decided to take the bull by the horns, as he puts it, and be proactive. He's speaking with Sherre Delys.

    Sherre Delys: You're obviously a very positive person and you've maintained a really optimistic outlook, but there must have been times when you really felt you'd dropped into despair?

    John Blades: Sherre, all the way through my condition I've really not had negative feelings at all. While I was working I pursued all my various activities. As I said before, I put the MS on the backburner. But it reached the stage where obviously I lost the use of my legs, my arms, my bladder and bowel function and also the nerves that control my chest muscles, making it difficult to speak loudly and project my voice. And then five years ago I'd seen some people who'd lost their speech, lost the ability to swallow, lost the use of their neck muscles and their heads just drooped. I though my gosh, if these things happen to me how would I be able to continue, so I really got very depressed and I'd spend days just staring into space.

    I guess I also thought, though, that there must be a way of getting out of this, and I discovered a book called Taking Control of Multiple Sclerosis by Professor George Jelinek, and he recommended a whole lot of strategies for taking control. As well as treatment for yourself. It does involve exercise, meditation and really positive feelings about your MS, rather than becoming negative. So, if you like, it's the combination of mental and physical. So I read that book, took on his formula, and it really helped pull me up out of the hole, along with just after that I was introduced to something I'd always been totally opposed to, which was computers. I discovered the internet, emailing, and I learned that I could use a voice-activated computer, and it opened a whole world to me.

    Sherre Delys: So suddenly you're mobile again.

    John Blades: Suddenly I'm mobile, and I've climbed out of the hole that I'd fallen into and I haven't looked back, and I've had none of those negative feelings again.

    Lynne Malcolm: Thankfully, with the care of his brother Bruce and daily visits from Home Care NSW, John Blades is able to live a full life at home. Today, Emma is helping him get his lunch.

    John Blades: On the kitchen table there are my natural vitamins and supplements, you know, from the big bottle in the main container outside, the two bottles with the L on them for 'lunch'. Then there are two medical tablets.

    Emma: All right, easy.

    John Blades: And a glass of water and a glass of cranberry juice.

    Emma: You want to start with apple?

    John Blades: No, not all those slices, I'll get too fat. It's awful to have to resort to wearing bibs like babies or people in nursing homes, but it's a practicality.

    Emma: Have a good night out tonight.

    John Blades: Thank you, see you next week for a morning shower.

    Emma: All right, see you. Bye.

    Sherre Delys: So you've lost some very precious things, what have you found in their place?

    John Blades: I've found a rich palette of arts and music, and really it's a simplified saying that you can't cry over spilt milk, and I've just pursued other activities with perhaps more vigour than I would have when I was able to do more things physically. I always thought my brain was divided down the middle—one half science, mathematics and engineering, and one half art. And after I stopped working the art side took over.

    Sherre Delys: You're a very active concert- goer. While many of us are sitting in our homes thinking, oh, it's too hard to get out to that concert tonight, you never take that attitude. And in fact you not only go to concerts, you're in a music group, a group called the Loop Orchestra that has a large local and international following, and you're an active promoter of other people's work, particularly the work of outsider artists. So talk to me about the role that culture and art have played in this process.

    John Blades: Yes, well, culturally and musically I do pursue all those activities with great vigour, so yes, I can't move anything much below my neck but I'm pursuing all these activities in my chin-controlled wheelchair.

    Sherre Delys: Why?

    John Blades: Look, not to prove a point, I've always loved art and music, especially experimental music, so I pursue these activities simply because I'm passionate. My attitude mentally has been to put the MS on the backburner and get on with my life. My other attitude has been to do what I could do until I couldn't do it any longer, then not to give up—as I know many people sadly do—but to do other things.

    Lynne Malcolm: That's all for All in the Mind this week, and thanks to John Blades for inviting us into his home.

    © Multiple Sclerosis Resource Centre (MSRC)

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