July is known as the international month to promote knowledge about living with polio and post polio syndrome. I am one of the estimated 12,000 people in Scotland who has had polio. Most of us were affected in our childhood in the 1940s-50s and thus most of us are now in retirement, although a small number of younger people are affected by polio. I had to walk with a lower left leg calliper until my early teens when I had several operations.
I have lived a very active life which included swimming, walking, cycling, playing volleyball, hill-walking, gardening and having a full-time job as a social worker in one of Fife Council’s disAbility teams. I was instrumental in setting up the first Young Carers support group in Fife.
I’m married, have three children and I’m a grandfather five times over. I’m a socialist, have been politically active, have been involved in many campaigns fighting injustices like the 2007 Fife Council hike in home care charges, the Anti-Bedroom Tax Campaign and presently with others trying to support benefit claimants who have been sanctioned. I have also been an anti-war and disAbility activist for most of my life.
The polio did not only affect my walking. I, like many disAbled people I know, am very independent minded and have pushed my body to the limit. As a result I’m now (age 64) ageing a bit younger than the average punter. I have had osteo-arthritis for years and have recently been diagnosed with osteoporosis in my left foot. I have been on pain relief tablets most of my adult life. As long as I have them I can function as well as possible. Life goes on, also for me.
About 20 years ago I was diagnosed with post polio syndrome, which is a secondary condition for a lot of people who have had polio. The only thing is that I wasn’t I told I had PPS until I had to retire early on health grounds in 2007. It was an administrative error.
PPS is an incurable deteriorating neurological condition. Don’t get in a panic when you read this last sentence. PPS can affect people differently. I can get periods of extreme tiredness if I do too much. I am comparing it to the Dementors in Harry Potter’s books who suck the life out of you (me). Nowadays I try to listen more to my body and not overdo it. This doesn’t always work and then I am just not able to do anything much for a few days/weeks. My advice for fellow PPS-ers is to learn to recognise what is good and what is bad for your condition.
Scotland has its own branch of the British Polio Fellowship. Anyone interested can contact the Scottish Polio Fellowship Regional Office at 6 Manse Street, Coatbridge, Lanarkshire, ML5 1DJ or phone them on 01236-430400.
Rudi Vogels is a disability rights campaigner based in Kirkcaldy