A prisoner of her own body

TEARS ran down her face as her body writhed in pain, but her warm smile and loving eyes still welcomed me into her home in Glen Hills. She first apologised for wearing pyjamas, then for her uncontrollable emotions, slurred speech and said she was having a bad day, but Dianne Kast immediately came across to me as a strong and determined woman. If only she could get the help she needed, I silently thought to myself. Today, Dianne is a shadow of her previous self, having been diagnosed with hemiballismus (formerly ballism), a very rare movement disorder, caused in most cases by a decrease in activity of the subthalamic nucleus of the basal ganglia, resulting in the appearance of flailing, ballistic, undesired movements of the limbs. It is a rare movement disorder, 500 times more rare than Parkinson’s disease.

Diagnosed with hemiballismus

In 2009 Dianne started having a number of strokes and was then diagnosed with hemiballismus. At the time her physiotherapist had told her and her distraught parents she was making good progress. The left side of her body had taken the hardest knock as she lost almost all feeling. Her blood circulation worsened and as a result, she suffers from severe cramps from head to toe. But all could be managed with some proper physio. Then last year this time, Dianne’s life took a turn for the worse. On her way to the bathroom, her hip was badly damaged when she fell. It now squashes itself into her ribs, with the spasms just getting worse every day. 

Prisoner in her own frail body

Having been a single mother and an independent woman for years, Dianne is kept prisoner by her frailing body and needs to be looked after by a caregiver by day. By night she shares a bed with her 78-year-old mother, while her aging and sick father sleeps in the living room of the family’s tiny garden cottage. Transport to physiotherapy and back has become a problem with her ailing father now also suffering from dementia and her mother just having a major back operation and arthritis.  Proper care and physiotherapy is all Dianne hopes for as she lays in her bed each day, wasting away. 
But all is not lost.

Old friends meet again

IT was on a hot February day this year that Nicolette Goodman and her family went to another friend’s birthday party.  There she noticed a woman that looked very familiar, but so unfamiliar at the same time.  “When I found out it was Dianne I couldn’t believe my eyes. She was reduced to nothing,” Nicolette said. Dianne and Nicolette had known each other for years as their sons were friends in school.  Dianne told Nicolette about her condition and what the average day in her life is like. When Dianne told her about the intense spasms she gets, Nicolette knew she couldn’t just stand on the outside and do nothing. And so Nicolette made it her personal duty to not only find Dianne the help she needs, but also offer it herself.  “She was always a healthy and sporty woman. She never drank or smoked. And yet she is stuck in a bed, stuck with her failing body and stuck with a working mind. But at the same time, she is one of the strongest, most determined people I have ever met. She is determined to get better, if only she could get the physiotherapy she so desperately needs.  “I massage her as often as I can, but I can’t always help when she needs it. The minimum amount of physio she needs per week is three sessions to help with the circulation of blood on the left of her body,” Nicolette added. 

When the body fails, but the mind still works

IMAGINE being tied to a bed, for almost a year, not being able to hold as little as your own coffee mug. You would think it’s only a nightmare. But this is Dianne’s everyday life.  “It’s not easy to explain what I’m going through. I don’t even know how to sum it up. My days are very boring and it’s extremely depressing to sit in bed all day thinking back to the days when I was a fit woman. I was strong, healthy and independent, now I can’t even dress myself,” she said as a tear painted her cheek. 

“But I have the will, the power and the determination to get better and become mobile again,” she added, this time with a faint smile curling at the edges of her mouth.  Her caregiver, Zanele Magwaza (who Dianne’s two young sons pay for each month) concurres with Dianne: “She is a very brave and strong woman. It’s not easy to survive a stroke, let alone four.”

With the amount of brain damage the strokes caused, doctors reckoned Dianne would never be able to talk or see again and said her memory would be affected too, but against the odds, she got her speech back and still remembers everything. 

How can I help?

AFTER approaching many churches and organisations and being turned away, Nicolette approached Northglen News in the hopes to help an old friend live a more comfortable and painless life. Nicolette called on any organisations or residents to help with what ever they can.  “If someone is willing to massage her, it would already make the world’s difference. Ideally, we would love if a physiotherapist would offer their services or transport her to a free occupational therapy centre,” Nicolette said. 
Contact Nicolette on 084 563 1298.

There will also be a fundraiser show (Battle of the Sexes) for Dianne, hosted by the Barnyard Theatre, Gateway, on Thursday, 15 May. Doors open at 6:30pm and the show starts at 8pm. Tickets are R100 a person. Dianne will also attend the show on the evening. Email Nicky at nicolette68@cellc.blackberry.com