A report published this month by the Stroke Association had Nikki Hill, the deputy director of communications, moved to tears.
“Its message is that the emotional impact of stroke has been seriously underestimated, leaving more than half of the survivors depressed and anxious,” Nikki explains.
Feeling Overwhelmed, based on a survey of more than 2,700 people affected by stroke, finds that survivors and their families feel inadequately supported.
“As the years pass, carers report becoming increasingly stressed and isolated. It is as though they’ve just landed on Mars without a map,” she says.
“Often these effects emerge down the line after the survivor leaves hospital. Health and social care professionals need to see stroke not simply in terms of physical disability, but its emotional impact too.
“It’s not just a case of money, it’s a case of recognising what’s going on and pointing people in the right direction. We want more support for carers. Charities offer a sitting service so the carer can take time out and they should talk to their GP or social worker about getting support.” Stroke Association Helpline: 0303 3033 100.
THE STROKE SURVIVOR
University lecturer Jerry Johnson’s world turned upside down when he suffered a stroke at the age of 40. When his wife Rebecca arrived at the hospital, he was unable to speak to her or understand what was being said to him. He says: “It was like everyone was talking a different language.”
One in three stroke survivors experience loss of communication skills, a condition known as aphasia. In Jerry’s case it meant he was unable to return to the job he loved.
Seven years on, Jerry still finds normal speech too fast and hard to understand. But thanks to long-term speech and language therapy, he can now communicate via email using short sentences to describe the challenges of living with aphasia. He works part-time as finance manager for the charity Different Strokes. Numbers are not a problem. It is words.
Jerry says his coping mechanisms are to get people to ask one question at a time; give the person with aphasia time to respond at their pace and encourage them to communicate in any way they can. For more information log on to: www.different.strokes.co.uk
After Ann Hardman’s husband Neil suffered his second stroke, she felt she was living with a stranger.
“Initially we were told he was suffering from hemiplegic migraine and he was discharged from hospital after five days despite not being able to walk properly,” Ann says.
The couple arranged to see a neurologist privately so Neil could have an MRI scan of his brain. This revealed he had had a second stroke.
“When the person you love has a stroke, you suddenly find yourself thrown into turmoil and don’t understand what’s happening to them. I started having panic attacks and feared I was getting dementia. One night I simply cried all night. I went to see the doctor and he told me I wasn’t going mad. It was stress.
“I contacted the Stroke Association who sent me on a one-day course – Understanding Stroke. It was invaluable. I really wish I could have gone as soon as Neil had his stroke because then I’d have done things differently and would have been more patient.
“It is just a question of hanging in there and understanding the person your partner has become.”
THE NEURO PHYSIOTHERAPIST
When someone has a stroke, it’s the neuro physyiotherapist’s job to teach them how to walk, and use their arms and hands again.
“Nature gives us a helping hand,” says Jon Graham, a specialist neurological physiotherapist from Northamptonshire, “because chemicals are released after a stroke which try to reconnect the brain with the spinal cord. Our job is to ensure the wiring is reconnected properly.
“It’s vitally important that in the first couple of days the patient’s position in bed is kept as symmetrical as possible. Every movement we make goes through a point of symmetry. Our balance is based upon this reference point.
“We come into people’s lives at their very worst moment. They can still have low moments, but you set them goals you know they’ll soon be able to achieve. When they achieve that first small step, they’re encouraged because they see reward for their efforts.
“We bear in mind that patients’ understanding can be at different levels and often use our hands to guide the patient’s movement. It’s a bit like being a male professional on Strictly Come Dancing. It is the best job ever, because you’re helping put people’s lives back together.”
THE OCCUPATIONAL THERAPIST
Catherine Sutherland is an occupational therapist, who leads the community-based neuro-rehabilitation team for Berkshire Healthcare NHS Foundation Trust.
The team visits a survivor’s home daily for six weeks, sometimes two or three times a day. “We know the sooner you provide this kind of intensive therapy the better the outcome will be,” she says.
“We’re client-centred and discuss what’s important to them. We might start by helping them make a cup of tea. At first, you’d boil the kettle and part fill the mug then with your hand on theirs you get them to pour in the rest of the water. Gradually you increase their participation in the task.
“If their dominant hand has been affected, then you get them to practise using their other hand. We give them small pieces of putty to roll back and forth in their hand. This helps with dexterity and builds power.
“Some people recover in this time, but others who haven’t met their goals are transferred to the neuro-rehab team, where they continue to see the same therapists for another 12 weeks on a less intensive basis.”
FUNCTIONAL ELECTRICAL STIMULATION THERAPY
Instead of planning his 34th birthday in Las Vegas, Justin Ashton was in the stroke unit at Kettering Hospital praying that he would still be able to walk his son Oliver and daughter Aimee to school.
The stroke had affected the left side of his body and Justin cannot lift his left foot up at the ankle to clear the ground. Around 20 per cent of stroke survivors have this condition, which can cause them to trip and fall.
“Although their school is only 500 metres away, getting there was impossible. I did attempt to walk short distances with a stick, but my drop foot made it very difficult,” Justin says.
Functional electrical stimulation (FES) uses small electric currents to lift the patient’s foot. Thanks to the treatment Justin can now walk his children to school and coach his son’s soccer team.
“I could walk ten metres without a stick immediately. My foot felt planted. I wasn’t frightened of tripping because the device dragged my toes down to the floor,” he says.
“I’m blessed with good friends who held a charity auction to raise the £5,500 to buy the device.”