Polio Particles - Issue 8

Mary Westbrook

Transient Muscle Weakness in Polio Survivors

A symptom that post-polio researchers have ignored, according to Dr Richard Bruno, is transient weakness (New Mobility, April 2001). This occurs when you overdo and find that you can no longer carry out certain movements, or do them as well as usual, for example your limp becomes much more pronounced. The added weakness disappears after you rest for a day or more. Bruno calls it New Year Syndrome as many survivors complain that their muscles are significantly weaker in late December after Christmas festivities but their strength returns in January after resting. Bruno warns that transient weakness may be damaging in the long term. When you experience transient weakness, we think you have overloaded your neurons' protein making factories and drained their reserves. After you rest your neurons' protein supply increases and you are able to use your muscles again. But every time you drain your motor neurons, we think you are doing damage that eventually causes permanent damage as the drained neurons die. Think of what happens to your car battery if you leave the headlights on every night. You get up the first morning and your battery is flat. You jump-start the battery and drive off. The next night you leave the lights on, jump-start the battery again, and drive away. But after about a week the battery will no longer hold a charge and you won't be driving anywhere … you can replace your car's battery but you can't replace your neurons.

Network Member's Woodwork Acclaimed

The May issue of Australian Woodworker published an article on the highly regarded craft and community work of Robert Guilfoyle. Robert is a wood turner and carver who produces and exhibits bowls, platters, lidded boxes and clocks. He is currently setting up a woodworking program to teach physically and mentally disabled the skills and pleasures of his craft at a centre called Shareability Inc in Belconnen ACT. Robert volunteered his skills at the For You and Me Centre two years ago. He says, I volunteered because I get so much pleasure from turning a lump of wood into a beautiful and useful object, and I wanted to share this enjoyment with others … My greatest achievement was helping a very disabled young woman, with cerebral palsy and limited use of one arm only, complete a lovely bowl. He describes his need to achieve something with my time, rather than just pass it, and to feel I am giving something back to the community. Robert uses an electric wheelchair and has incomplete use of his arms. Consequently he must carefully plan the use of his tools to achieve the desired result. Equipment has to be at the right height. I can't lean forward or turn my body, so I have to sit sideways to the lathe or bandsaw. Using a chainsaw to cut blanks is a real challenge.

Polio Returns to Europe

Europe had been free of polio since 1998 and Bulgaria since 1991 but on 17 May Associated Press reported two cases of polio in Bulgaria. The first case was a 13-month-old Gypsy child in the Black Sea city of Burgas who developed paralysis in March. It was diagnosed as polio three weeks later and other Gypsy children were immediately vaccinated. Despite this, in May a two-year old child living in Yambol 90 km from Burgas contracted polio and her legs and an arm became paralysed. The virus was identified as a subtype of Type 1 poliovirus that is found in northern India. WHO commented that without constant vigilance, Europe's polio-free status and the global eradication efforts could both be in danger.

HIV-Polio Vaccine Link Finally Debunked

I have written before about rumours that the HIV virus leapt the species barrier to humans from apes via batches of Sabin vaccine (Newsletter 43). These allegations were fuelled by a book, The River: A journey back to the source of HIV and AIDS by British journalist Edward Hooper. Hooper reported that the sites in the Congo, Rwanda and Burundi, where the first recorded cases of AIDS occurred in the 1960s were also where a million people were vaccinated against polio in 1958-59. Hooper claimed that the oral vaccine, which came from the Wistar Institute in Philadelphia, was derived from the kidney cells of chimpanzees that had SIV, a simian HIV. The Wistar Institute has always denied using chimpanzee cells. The US Dispatch (28/4/01) reported evidence that should destroy this ugly theory that has sown doubt about medical honesty and damaged faith in vaccination. In April the prestigious journal Nature published the findings of four groups of scientists in Britain, France, Sweden and the USA who tested the DNA of stored or frozen samples of Wistar vaccine. They found no trace of HIV or its nuclear acid components, while the only simian genetic material found came from Macaque monkeys, a species quite distinct from chimpanzees (the carriers of the closest simian immunodeficiency virus (SIV) to AIDS). Thus there is no support for Hooper's assertion that the Wistar Sabin vaccine was produced from chimpanzee cells. A recent study at Oxford University also refutes Hooper's theory. This study showed that HIV existed in humans before the mass polio vaccinations in Africa. The question about HIV's origins remains unanswered. A popular theory is that it originated in central or West Africa via a chimpanzee that bit, or was eaten by, a hunter. Such episodes may have occurred on a number of occasions. What may have caused HIV to take off epidemically could have been the use of non-sterile needles and syringes in African hospitals in the mid 20th century.

Polio Fatigue

Like me you are probably tired of people dismissing your polio-related fatigue with the words, "You're just getting old! I get tired myself these days." Such folk usually don't want to listen to research evidence disproving their beliefs but you may find some reassurance that you're not a hypochondriacal wimp from a recent study published in Spinal Cord (volume 39, pages 243-51). The authors, A-K Schanke and J Stanghelle, compared the fatigue levels of polio survivors in Oslo with those of the Norwegian population of similar ages. Polio survivors in all age groups experienced greater physical fatigue than their ablebodied counterparts. While 11% of Norwegians reported substantial fatigue of more than six months duration, 53% of polio survivors did so. Within the able-bodied population physical fatigue increased with age but there were no significant differences between the fatigue levels of polios aged in their forties, fifties or over 60. According to the findings physical rather than mental fatigue was the major problem for polio survivors. Male survivors were as likely to report mental fatigue as were ablebodied men of their ages. Female survivors in their forties or over 60 experienced more mental fatigue than did non-disabled women of these ages but the difference was not very great. The authors conclude that their findings do not give great support to Bruno's theory that "brain fatigue" (problems of attention and concentration) is common among polio survivors.

Disability in Childhood Books

A recent book, Take Up Thy Bed and Walk: Death, Disability and Cure in Classic Fiction for Girls, will give you an interesting and thought provoking trip down memory lane. Author Lois Keith became a paraplegic due to an accident in adulthood. Passing her much loved childhood books onto her daughters she noticed for the first time that disability, illness (particularly paralysing illness) and cure are central to many of these stories … there was hardly a girl's novel since 1850 which didn't have a character who at some crucial stage defied their guardian and fell off a swing or out of a sled, became paralysed through tipping out of a carriage or was suffering from some nameless, crippling illness … there were only two possible ways for writers to resolve the problem of their characters' inability to walk: cure or death. Lois' daughters know she is no poor incapable invalid and that no wheelchair smashed by a jealous goat-herd (Heidi), magic healing place (The Secret Garden), change of personality (What Katy Did), or miracle cure in a New York hospital (Pollyanna) is going to get me up and running round again. Lois argues that the books we read when young have the deepest influence on our lives so what were the messages we received about disability? Apart from these deeper issues it's very enjoyable to go over the plots of old favourites. Little Women, Jane Eyre, Seven Little Australians, and Little House on the Prairie are all there but there is no analysis of the Anne of Green Gables series which I suspect were the most influential books I ever read. Polio gets a mention as having great dramatic potential as a fictional device to illustrate brave 'overcoming' of insuperable odds with medical accuracy often being ignored to allow characters to walk again. Alan Marshall's I can Jump Puddles is praised for a response to wheelchairs (not seen as an object of shame or constriction, but as exciting and liberating) that is unusual even today. Rosemary Sutcliffe, who has a disability, is praised for her books, in many of which characters with disabilities fight to gain a position in society. This somewhat overpriced paperback published by The Women's Press 2001 is available at Australian bookshops for $34.95. Gleebooks at Glebe have it. You may have to ask some bookshops to order it in for you.

Accepting things you never thought you could

American author Nancy Mairs who has MS said in an interview that everyone imagines a boundary of suffering and loss beyond which, she or he is certain, life will no longer be worth living … my line, far from being scored in stone, has inched across the sands of my life: at various times I could not possibly do without long walks on the beach or rambles through the woods; use a cane, a brace, a wheelchair; stop teaching; give up driving; let someone else put on or take off my underwear. One at a time … I have taken each of those figurative steps … I go on being, now more than ever, the woman I once thought I could never bear to be. How true this is of the changes PPS has forced us to accept in our lives.

Dr Anna-Lisa Thoren-Jonsson of the Department of Rehabilitation Medicine, Göteborg, Sweden, has researched how PPSers manage such changes. Her article is titled Coming to terms with the shift in one's capabilities: a study of the adaptive process in persons with poliomyelitis sequelae (Disability and Rehabilitation, 2001, volume 23, pages 341-351). Thoren-Jonsson found that initially survivors ignored body signals such as pain and fatigue, which indicated that their physical capabilities were declining. She calls this the inattentive phase. As these survivors continued with their usual activities they entered what she named the overload phase which is characterised by increasing fatigue, pain and anxiety. The predominant strategy in this phase was stretching the limits of physical capability, but avoidance and wishful thinking were also common … some intensified their exercises, which led to further overloading.

From the overload phase survivors moved through one or more of three stages. Some survivors experienced an emotional crisis, a vicious circle of further pain and tiredness if they continued to stretch the limits of their physical capacity … or did not see any other way of coping. They described this period as a time of dark. Some survivors moved to a phase of withdrawal. They reduced their activities particularly leisure and social activities, often because they did not want to show their increasing disability, for example by using mobility aids, asking for help. Support from others often helped people move from the withdrawal stage, for example a relative encouraged them to seek medical help or use assistive devices. A third phase was that of gradual change. Sometimes they realized themselves that they were tired or suffered pain in certain occupations, but mostly other persons or special incidents seemed to have called their attention to the fact that changes had to be made.

Ultimately many survivors reached the flexible phase in which they used a variety of strategies, a pattern which facilitated their participation in daily occupations and social life. They seemed to take the decline in their abilities into consideration in activities instead of struggling with it. They planned and organised, set priorities, sought information, were able to ask for help, used assistive aids and no longer felt shame about their disabilities. To reach this stage of flexibility survivors needed both insight and the ability to reorganise. Insight meant recognising that disability had increased, for example as one woman said, You can't be what you once were. Such insight leads to anxiety says Thoren-Jonnson and was not enough to bring about change, but it was a turning-point that started a process 'in the back of the mind'. Reorganisation takes time. One participant in the research said: It's something new to me to see my limitations because I've spent a whole lifetime trying to ignore the fact that I've been ill and persuading myself that I'm like everybody else. Then you have to change completely and it's not easy to turn it over and say to yourself that I can't fix that when you've always been saying I'll fix that. Post-polio being what it is many participants returning to the overload stage when new symptoms developed or stressful events occurred in their lives. Adaptation is a dynamic and unending process in everyday life. For polio survivors changes associated with loss come faster and sooner than they do for most of their contemporaries. Do we get any better at coping? I suspect we do once we have initially reached the flexibility phase. No one knows how many polio survivors do not reach this stage. The participants in the research were volunteers and were likely to be coping better than average, for example no one who denies they are having problems is likely to volunteer for such research. Nor are they likely to join the Post-Polio Network!