A prisoner of her own body
Dianne Kast was diagnosed with hemiballismus after she suffered four severe strokes. Today she can't even get out of bed.
![Nicolette Goodman with old friend, Dianne Kast.](https://images.caxton.co.za/wp-content/uploads/sites/51/2014/04/17rjhelp2-Medium.jpg)
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.Â
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.Â
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.Â
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.Â
![Dianne Kast before she had the severe strokes and before she was diagnosed with hemiballismus.](https://images.caxton.co.za/wp-content/uploads/sites/51/2014/04/17rjhelp1-Medium-333x500.jpg)
“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.Â
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.Â
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
Diane is a brave strong God-fearing woman with a lovely attitude and a big heart ! My prayers are with her always !!
This story breaks my heart. I grew up with Diane and to know that she is suffering like this today is very disturbing. I pray that she gets all the help and support required to regain some sort of pain relief and normalcy. Diane, you are a woman, which means you are strong. Keep fighting!!! You can do this! GOD IS ON YOUR SIDE.
I KNEW DIANE FROM A VERY YOUNG – HER LATE BROTHER[RUSSEL] WAS MY ELDEST SONS BEST FRIEND -ALSO KNOW HER PARENTS VERY WELL – DID NOT KNOW THE SITUATION WAS THAT BAD –
MY DETAILS ARE ABOVE MY ADDRESS IS 28 /183 ALLAMBIE ROAD – ALLAMBIE HEIGHTS SYDNEY NSW AUSTRALIA 2100
Hi Nicolette can you please provide bank account details so those if us that are far away can contribute towards your fundraiser evening. Diane is such a beautiful soul. It is heartbreaking to hear that she is suffering like this. God bless Diane and May she find comfort in knowing that she is so greatly loved and prayed for at this time
Please insert my email address for anyone who would like the banking details.
I just want to thsnk every dingle one of you who have contacted me and sent your love to Disnne. It has been an overwhelming experience for both zdisnne and mysel. Diaane is full of emotion to think thst do many people care about her. All these years she felt abondonedand reje rejected all thru her sickness. She stopped hearing from friends and this hurt her a lot. But I had to explain to her that no one rejected her, people were not aware that she was not well .Now that they know they want to help u get better!
Just an update: I have managed to purchase a wheelchair for Disnne, shen calls it her Ferrari. I had 2 sponsored physio session for her with Dr Anesh Bhoojrajh, today was her
second session. He said with a lot of excercise Dianne will be able to walk again. He gave us some excercises to do which Dianne can also do on her own. Wonderful Dr told Diane
to block all negativity and focus on herself and her health. He has given me a referral letter for King Goerge hospital to see Prof Govender who specialises in spinal didorders. Also I need to look I to getting her a experienced and energetic caregiver. The one she has is ok but Dianne needs are much more than a 15min rub and bathind and feeding her. S0now that she has a wheelchair she needs someone strong who will be stro g enuf to take Dianne and her Ferrari down their driveway, there should be no e cuse why Dianne should lie in a bed 24hrs a day. Disnne thinks thst her nerves are so damaged that the dlightes breeze or the sun will get her into spasms today I proofed her wrong my brother inlaw Angus took us to the physio and I delibrately left the windos open, we went in a van so I sat at the back so she could not tell me to close them. She survided and no dpasms or nerve problem. Anyway I must thank you ball once agsin for caring. Please continue to spread the news for rhe fundraiser as we are really relying on this to pay for Headway, and I slso need to aarange transport to take her there and back . With God all is possible. Love Nicolette
n spinal disorders. Eventully Dianne will be fitted with brace for her body hich will eas the hip and the rib bome from touching as this is very psinful. I have also booked her into the best facility in Durban which deals with people who will help her with he co-orditsion. This facility will cost approximstely R2500 a0pm.