Were all in the same boat

July 2, 2007 at 1:51 am

Late effects of other disabilities

An article, Post-Everything Syndrome, appeared in the American magazine, New Mobility (September 2000). Author, Bonnie Moulton, discusses how polio survivors have raised medical and community consciousness about the late effects of all disabilities. She writes, We should give credit where credit is due. Polio survivors – inarguably the largest, most vocal and most politically active disability group in history – have fought to get health care providers, insurance companies and policy makers to recognise that for millions, the experience of polio didn’t end with recovery from the initial illness. The model of self advocacy they created has extended far beyond any single disability. She goes on to describe how survivors of spinal-cord injury, cerebral palsy, spina-bifida, Guillain-Barre syndrome, long term amputation and other physical disabilities considered to be static are experiencing late effects that seem like early ageing. As you will recall from the Network’s booklet Helping polio Survivors Live Successfully with the Late Effects of Polio, some polios develop post-polio syndrome which would seem to be unique to polio survivors. Most polios develop late effects due to the wear and tear of living with a compromised body. It is this that causes problems for people with other physical disabilities. Whatever the causes of their symptoms the different groups’ experiences are often remarkably similar. Pain tops the list, followed by increased fatigue, decreased endurance, increased spasticity and new muscle weakness … protocols that have helped polio survivors, including a transition to a ‘conserve to preserve’ lifestyle may be equally valuable to someone with spinal cord injury or spina bifida. It means that people with Guillain-Barre syndrome have every reason to print out an article from a post-polio Web site and tell their family care physician, ‘This sounds like me! Let’s try some of these things’. The stories in the article will sound familiar to polio survivors. Ken, aged 51, with cerebral palsy, says, You slowly, or sometimes quite suddenly, realize that you can’t do things you used to do easily. Then you realize that you’re not really THAT old. That’s the frightening part. Steve, aged 59, who has spinal injury was told by his physiotherapist ‘You have two speeds now, slow and stop’ … I can’t do six things in one day anymore … As I’ve grown older I’ve learnt to make sure that I don’t make too many demands on myself. As I get better at doing that, I’ve begun to be at peace. The author argues that people with long-term disabilities are more alike than different so they should be a community rather than a collection of enclaves. To have access to services and supports we’ll need as we age, we need to build coalitions. Moulton has much to say about the failure of medicine in handling chronic conditions. She quotes one doctor who recommends that people with late effects of disability consult a specialist in rehabilitation medicine or in sports medicine, Why sports medicine? Once you’ve had a disability for 30 or 40 years, the analogy that you’re doing a marathon (every day!) doesn’t seem that far off. For this we pay a price. ‘There is no doubt that the presence of a disability causes a person to expend more physical, emotional and mental energy every day than a person who does not have a disability’, confirms Renee Kirkby, an amputee for 30 years