“ableX is extremely helpful for my concentration”
– Chris Knox, songwriter and musician Getting Mum Back Towards the Light
Jay Kumari’s mother Usha had a severe stroke in 2012, which left her right side paralysed and her speech badly affected. After six weeks in hospital, she left with a long way to go.
Usha did some rehabilitation work in hospital, but the results were up and down. She attended classes after leaving hospital to help her relearn how to walk and talk.
For a right-handed woman, it has been very challenging to learn to do things with her left hand. Usha was invited to be part of the ableX trial, run in Christchurch. “My mother is a conscientious woman,” says Jay, “she was used to using a computer, but not to play games!”
“Beforehand, she couldn’t use her right hand at all,” he says, “but now she can do some more things. For a family, it (ableX) is a good ice-breaker, it encouraged Mum back towards the light when she was feeling down. It made her feel good and gave her something new to think about.”
Usha suffers ongoing back and neck pain, but she perseveres with going walking and rehabilitation. “The nice thing about being able to work on the games is that she can do it even if she is tired or in pain,” says Jay. “She can concentrate better now.
“Mum worked on the games quite often and it was good that she could be assessed as she improved.”
Usha lives with her son, daughter in law and two grand daughters, who bring her a lot of joy and laughter. “She is playing with and teaching the girls,” says Jay. “They love her.”
The power of love, pure and simple, is bringing this entire family hope and solace. A Quantum Leap
I believe ableX is a quantum leap towards stroke recovery. It works directly on the brain or central nervous system – stimulating those dormant areas and providing brain connectivity, and that is far more exciting than anything we have had available to stroke survivors in the past.
The system offers people the opportunity to do some enjoyable, self-rehabilitation in their own homes. Participants are not actually aware they are getting a workout as they play the games. The system works – because people enjoy the games, but at the same time they are rehabilitating the brain – making those reconnections.
You can enjoy ableX yourself at any time – and the system achieves results. People are really enjoying the challenges of the games, and they feel better for it. They feel that they have had a workout and they feel that they are making progress with their rehabilitation. One Size Does Not Fit All– Fiona Weston, Caregiver
Fiona Weston is a brave, dedicated and outspoken advocate for those who are recovering from a stroke or brain injury.
“The one size fits all approach does not work when it comes to this situation,” she says. “I accept there will always be funding issues in the health sector, but I cannot accept a lack of efficiency. We are in the 21st century and need to embrace technology to help people recover.
“Hospitals and rehabilitation centres generally run on the lowest possible staffing ratio, so if there are public holidays, or staff illness or leave, the patients are just left.
“Systems like ableX require an initial outlay, but they also require minimal supervision once they are set up and inspire independence and results in patients. They are specifically designed to encourage neuroplasticity (the brain’s ability to retrain new pathways), and should be an integral part of a rehabilitation programme. Patients need the best possible outcome and this is often a time-sensitive situation. If there could be more technological support for rehabilitation, it would help the over-worked and time-poor staff at the coal face, and the patients, and pay off in no time at all.
Never allow your loved one to be put in a box,” says Fiona, “the DHB mission statements reference personalised solutions, but in reality that is not being delivered.”
The focus in hospitals is initially to recover large motor skills, like walking. Fiona’s husband Colin received minimal rehabilitation on his arms and hands in hospital, other than what Fiona organised and executed herself. “You shouldn’t have to choose,” she says. “Arms and legs are equally important.
“ableX helped Colin’s arm amazingly. He got so much satisfaction from being able to work independently and achieve results at his own pace. It offers such a lot of rehabilitation in a short space of time.”
Fiona wants to see change and improvement in the treatment of stroke and its administration. A naturally strong and high achieving woman, she believes with enough work and awareness and the willingness to embrace new concepts, that is a goal that will be realised in New Zealand. Supported Patients Recover BetterStephen Tauwhare
Stephen Tauwhare had recently finished his master’s degree and had been married just 15 months when, at the age of 33, he suffered a brain aneurism that almost claimed his life.
His wife Elaine was by his side and told to prepare herself that he may not survive the weekend. The hospital removed all medication, other than for pain.
“I was sitting with him and he started twitching his hands and feet and his eyes blinked open,” she says. “I think the doctors thought I was imagining things when I told them that he was blinking once for yes and twice for no, but he was, and that was that.”
So began a “year of hell” for both of them. Elaine faced numerous bureaucratic and personnel hurdles and felt that Stephen wasn’t getting anywhere near enough help and support to rehabilitate. “There was one nurse who was great and really supportive, but ultimately nothing really happened for that first year, other than I knew he was ‘in there’.
“It was so frustrating, because I spoke to another independent doctor, who said the patients who recover better than expected are the ones who are well supported.”
After several moves, Stephen was relocated to Laura Fergusson House, where he now lives and gets, in Elaine’s words, “heaps of rehabilitation and opportunities – they even went out sailing recently – I was quite jealous!”
Elaine read about ableX in the Hutt News, and as fate would have it, company co-founder Sunil Vather used to work with Stephen. His former employer Industrial Research Limited funded a unit and the Tauwhares were delighted that after two or three years with very little, Stephen was finally able to do something with his brain, and help himself rehabilitate.
“At first, he struggled to do anything, but he absolutely loved it,” says Elaine. “It was such a comfort and relief to see that brain of his stimulated – he started out with the wand (ableX handlebar controller), then a mouse and progressed well to the harder games.”
Elaine has taken out a mortgage to buy a van with a hoist, and her ‘local’, the Belleview Garden Hotel, pitched in to improve access at home for Stephen’s wheelchair, which means he’s able to get home every so often.
Obviously, Stephen’s brain injury has turned many lives upside down, least of all his and Elaine’s. Their bond and commitment to continued improvement is inspirational and comforting, given the first year they endured. The enduring message for families and patients from their story is to never give up, never stop seeking a solution that will assist the individuals concerned. Without it, Stephen’s quality of life and Elaine’s peace of mind would have been even more compromised. Increased confidence
My name is Brenda and I have been John Lash’s partner for eight years. John had a stroke in Nov 2008 which disabled him a lot. We worked together on his rehabilitation and got to a certain point then everything went into slow mode. When approached to be on the ableX program we were delighted. John has done everything asked of him and the people involved were wonderful.
The improvements seen in John are amazing. The strength in his left arm has improved out of sight. His brain is more able to deal with things which is so good as it puts his life on a more normal setting. In all I am delighted John was chosen as the result is awesome, and I would strongly recommend it to others in John’s situation.
It has given him confidence in himself again which I think is a major achievement.
– Brenda, Caregiver and Partner Stroke Recovery – Teach the Brain Something NewPeter Thompson
Even able brains demonstrate neuroplasticity every day, and it is a key concept in recovery following a stroke. Neuroplasticity is the brain’s ability to create new pathways and learn new skills, and sometimes relearn, in the case of stroke or head injury.
If you were to learn a musical instrument for example, you will begin slowly, sometimes clumsily, but with practice and determination, your brain recognizes the patterns and the skills become easier to perform.
Following a stroke, there are often a number of key skills to ensure independence that need to be relearned – walking, talking, feeding and dressing oneself for example. The prognosis for each patient is different, and no outcome is guaranteed – except one; if you do nothing new, you will achieve nothing new.
Peter Thompson’s wife Virginia (Ginny) had a stroke in June 2008 and required decompression surgery to save her life.
Ginny’s prognosis was grim – the couple was told she’d never walk again and told that with stroke, any function not regained in the first six months is gone forever.
Despite such a bleak outlook, Ginny was determined to walk into her 50th birthday party. Eleven months after her stroke, she managed to do so, with the help of a cane and a very dedicated physiotherapy and recovery programme, which was funded by the Thompsons. Eighteen months after her stroke, she had regained enough function to come home, where she remained for 2 ½ years, before needing to go back into fulltime care.
Peter’s background is in design and engineering, and Ginny’s stroke has altered his professional course and he is now a champion of stroke recovery.
“We need a change in mindset,” says Peter. “We shouldn’t be calling it rehabilitation, the focus should be recovery – recovery of as much function as is possible. “I have seen remarkable recoveries from individuals who refused to give up,” he says, “I met a woman who spent two years teaching herself to play an instrument after being paralysed by a stroke. There are a lot of factors at play, and recovery is a long-term project.
“The power of the individual cannot be underestimated. The desire to recover is undoubtedly a factor in the eventual outcome of a patient. We need to work out how to unlock that desire in each patient, given they are easily discouraged by the enormity of the task they face.”