'Sometimes we think of ending it all — we are terribly weary of fighting'
Disabled twin sisters highlight the struggle for survival in a world short of services and supports, writes Joy Orpen
‘I woke at seven this morning, and I was crying. I’m depressed and feel utterly hopeless. That often happens. Sometimes we think of ending it all; we are so terribly weary of fighting.” These are the heartbreaking words of Ann Kennedy. Her comrade-in-arms is her genetically identical 64-year-old twin sister, Margaret. They have extremely complicated medical histories, and while these may differ in some respects, the fact remains, they are both unwell, in pain, disabled and extremely fearful of what the future may hold for them. On top of all that, they say they are struggling to get the professional help and support they believe their particular circumstances warrant. That, in turn, makes them feel even more depressed and dispirited. Nonetheless, their feisty spirit, innate intelligence and sardonic views give them the courage they need to keep going.
The devoted sisters share a modest house on a neat estate overlooking the sea in Greystones, Co Wicklow. Their home bears testimony to the challenges they face.
Wheelchairs, bathroom cushions, disability handrails and ramps are all part of the fabric of their daily routine. As is their endless struggle for survival in a world that is often short on services.
As children growing up in Killiney, they battled with a hearing impairment, caused by their mother having contracted rubella, during pregnancy. By their early 20s, they had already gone their separate ways. Ann was doing animation in London, collaborating on ground-breaking projects such as the Watership Down movie, and promotions for the iconic rock band Pink Floyd. Meanwhile, Margaret trained as a nurse at Great Ormond Street Hospital, before moving on to social work.
In time, Ann returned to Ireland and became an accomplished artist and award-winning writer and illustrator of children’s books; while her sister forged an impressive career in England, fighting for the rights of young people with disabilities, especially deaf children, who had been abused. She did her doctoral thesis on clerical abuse, was awarded the Emma Humphreys Memorial Prize (2004) for her work, and remained in the UK until her return to Ireland about 10 years ago.
When they were in their 40s, the sisters encountered health issues that began to impact on their general ability to function in the physical world.
“My muscles began to shut down and I was falling all over the place,” says Ann. “I could hardly hold a paint brush.” Meanwhile, Margaret was in a similar situation, in the UK. “I was travelling all over the British Isles and Ireland, lecturing on the abuse of disabled kids,” she says. “But sometimes, I couldn’t even walk. When lecturing, I’d have to make sure they had a wheelchair.”
Over the next few years, Ann and Margaret were tested here — and in the UK, because their case was deemed to be so complex. In time, it was found that some of their health problems included Parkinson’s disease (they are both on medication for this); muscle myopathy (muscle wasting disease), which requires them to use wheelchairs most of the time; dystonia, which causes muscle spasms; and mitochondrial DNA depletion syndrome, which robs them of much energy.
“We have had our condition confirmed as a ‘heavy disease burden’,” explains Margaret. “A top neurologist at the National Hospital for Neurology and Neurosurgery in London said it was a ‘multi-systemic neuro-muscular degenerative disease’. Our condition includes four major diseases in one phenotype (presentation or collection of symptoms) never seen before. A neuro-geneticist at the Royal Victoria Infirmary in Newcastle said we may be the only two in the world with our particular condition.”
The main difficulty for Ann and Margaret right now is that their diagnosis is not complete, while many of the implications for them in the future are uncertain.
“We know there is no cure for this,” says Ann, “but we believe there could be treatments if we had additional insights. The more you know about an illness, the better able you are to do something about it. You can then have an understanding of what the prognosis is. Right now, we just don’t know what we are dealing with.”
Both women agree that they need to go back to one of the centres of excellence for neuromuscular diseases in the UK. But in order to do that, they would need a neurology specialist in Ireland to support their application to be allowed to participate in the treatment abroad scheme (E112 form).
When they asked Beaumont if they could be seen by a specialist neurologist there, — the sisters are adamant that their case is so complex, (and UK consultants have confirmed this), that they need to be seen by a specialist, rather than a general neurologist — they were told they do not fall within the catchment area. “According to the HSE hospital directorate, there are no catchment areas at a national hospital,” says Margaret.
“So, at the moment we have no neurologist, no neurology care, no treatment, no nothing,” she adds. “I am on Parkinson’s medication, that urgently needs reviewing, but I have no neurologist. None of the care plan that was devised in the UK has been implemented here. The National Rehabilitation Hospital recommended on-going physiotherapy and hydrotherapy. We never got any. We’ve got PAs and home help, but very little on a medical primary care level. We are now absolutely desperate.”
“Is this some kind of ageism?’’ asks her sister.
Tom Clonan, a DIT lecturer, writer and activist for people with disabilities, whose teenage son Eoghan suffers from a rare neuromuscular disease says: “The Kennedys represent a growing number of people whose needs are not being met by the health service. We’re living longer, so more and more people have complex needs. Ireland is not a good place to be vulnerable right now.”
Mags Rogers, executive director of the Neurological Alliance of Ireland, says: “Neurology services in Ireland are in crisis. We have the lowest number of consultant neurologists in the whole of Europe, and so the waiting lists for a first-time appointment are growing. With our ageing population, more of us are developing conditions such as stroke, Parkinson’s disease and dementia, and the increasing demand on neurology services is not being matched with investment. The pressure on individual neurologists is enormous.”
A spokesman for the Department of Health says: “Waiting times are often unacceptably long and the department is conscious of the impact of this on people’s lives. Reducing waiting times for the longest waiting patients is a key priority. The National Clinical Programme for Neurology recommends an increase in the number of consultant neurologists, nurse specialists, and other healthcare professionals which would address waiting time issues.”
All Margaret and Ann Kennedy ask, is to be allowed to go to the UK for an up-to-date investigation into their current state of health and for treatment not available in Ireland. Given the enormous suffering they both endure, around the clock, every day, it seems a small thing to offer these gutsy, 60-something, loyal and devoted sisters.
The Neurological Alliance, in partnership with the National Clinical Programme in Neurology, is launching a survey of outpatient neurology services later this month. For more information go to nai.ie/go/campaign/we need our heads examined