New Zealand hasn’t had a case of live and wild polio infection since 1962, so people would be forgiven for thinking that was the end of it, we beat that one. Indeed, thankfully the world is on the brink of eliminating the wild polio virus, with only 14 cases globally reported this year. But the late effects of polio continue to affect thousands of New Zealanders, most of whom are now in their sixties or older.
The “Late Effects of Polio” or “Post-Polio Syndrome” affects most polio survivors. Symptoms include fatigue, muscle weakness and muscle and joint pain, shortening of tendons in polio-affected limbs, difficulty sleeping, difficulty breathing, and psychological stress. These symptoms can be debilitating and may compromise health and independence. A recent systematic review of the incidence and prevalence of Polio worldwide suggests that there may be close to 10,000 polio survivors alive in New Zealand today, including a significant number who caught it overseas more recently than their New Zealand-born counterparts.
The polio virus did its damage by killing the anterior horn cells in the spinal column, breaking the connection between the brain and the muscle. Hence the paralysis. In cases where the mortality rate of the motor neurons was less than 50%, complete recovery was possible with no loss of power or endurance. The nerves could sprout and re-innervate the orphaned muscle fibres, restoring function. The U.S. Olympic sprint champion Wilma Rudolph, for example, had polio-affected legs.
The downside is that each polio-affected nerve fibre must work much harder to generate the elevated voltages in the nerve signal needed to get a ‘normal’ response in the muscle. After a lifetime of overtaxing the system, the nerves start giving up, and the late effects of polio kick in.
Unfortunately, the normal advice for overcoming weakness and fitness is to exercise: use it or lose it. For polio survivors this will have the opposite effect, damaging muscle rather than improving function. Luckily, with the right levels and types of exercise, sophisticated pacing skills, and the right assistive devises for mobility and safety in the home, the decline in condition can be slowed or halted and in some cases reversed. Rather than say “use it or lose it”, polio survivors need to say:
preserve to conserve”.
I caught polio when I was ten months old in 1956, just before the polio vaccines became available in New Zealand. I was helped immensely, learning to walk at the Duncan Hospital for Poliomyelitis under the guidance of the physiotherapist Bill Bell, a cousin of Sister Kenny who pioneered her method of treating polio.
Sixty years later, and experiencing some late effects from polio, I find myself the Programme Manager for Polio New Zealand and about to become CEO of the Duncan Foundation. Both organisations saw a need to update rehabilitation services for people living with neuromuscular conditions (of which polio is just one), and so we have joined forces to make it a reality. Our mission is to partner and support people living with long term neuromuscular conditions to reach their goals and live life to their full potential for as long as needed. To this end we will establish community rehabilitation hubs in centres accessible to those registered with the Duncan Foundation. This will be a complex process, as everyone is different and has unique circumstances: we will build as we go.
We are piloting a Late Effects of Polio clinical pathway with the Christchurch District Health Board, to be followed by Hutt Valley and Capital Coast District Health Boards. This will give GPs and other health professionals up-to-date information on assessment and referral for patients experiencing late effects of polio.
The Duncan Foundation has just opened its third clinic for the assessment and planned support of people living with neuromuscular conditions, starting with polio but soon to include dystonia, Fredrick’s ataxia and early stage Parkinson’s disease. Our Clinical Director is Julie Rope, an Auckland based neuro-physiotherapist who started our first clinic at her practice. In Christchurch, Jessie Snowden of On the Go Physio has seen over 25 people, and a further half dozen in Nelson, Invercargill and Dunedin. We started our Wellington clinic on November 1, seeing three polio survivors. On 4 December, QE Health in Rotorua, famous for its hot pools, mud packs and massage, will start its first week long polio-specific assessment and rehabilitation course in partnership with the Duncan Foundation.
The Duncan Foundation is at the very beginning of an exciting project. Our website will be up and running as soon as we have all our systems in place. Watch this space.
Gordon Jackman is a polio survivor and advocate based in the the Coromandel, New Zealand. He has had a diverse career in education , archaeology, environmental campaigning, environmental consultancy and health advocacy. Contact Gordon at firstname.lastname@example.org
- Jones, K.M., Balalla, S., Theadom, A., Jackman, G. and Feigin, V.L., 2017. A systematic review of the worldwide prevalence of survivors of poliomyelitis reported in 31 studies. BMJ open, 7(7), p.e015470.
Also on Corpus: Polio and me by Marlayna Zucchiatti, “Them rags that wells my legs”: Sister Kenny’s first polio case by Sue Wootton, and The inert body live on the page: June Opie’s Over My Dead Body by Lucy Hunter.