The community can assist Eckelmann to combat a debilitating disease
A once active local man is tackling a disease that changed his life.
NELSPRUIT – Four years ago, he was a fit and active 43-year-old, who enjoyed cycling and being surrounded by nature. Now, he is a man battling with a condition that has left him struggling with basic daily tasks.
In July 2010, Mr Eckner Eckelmann started having trouble performing simple tasks and was experiencing pain throughout his body. “Walking, sleeping, eating and basic day-to-day activities were not that easy anymore,” Eckelmann elaborates.
In March 2012, he was diagnosed with generalised dystonia and his life changed drastically.
Generalised dystonia is an extremely rare and painful chronic neurological movement disorder. It causes involuntary contractions of all muscles simultaneously, and one struggles to sit, walk and drive.
Eckelmann is currently being cared for by his 76-year-old father. “I see his commitment and compassion on a daily basis, which breaks my heart. It fills me with desperation to get better,” he says. He mentions that there are good days and bad days. On good days he can, with great effort get on his bicycle and go for a short ride, but on bad days he needs to use a walker and wheelchair to get around.
This, despite being a health nut ever since childhood. “Getting up early in the morning, going to gym on my mountain bike for an hour of intensive training, was my daily routine.” One of the things he was most passionate about was creating fairytale gardens in the evenings and over weekends. “With my condition, I quickly learnt to not take any movement of my body for granted. I miss working, getting good results and making a difference in my community.”
Since the diagnosis, Eckelmann has been taking highly addictive medication, Stilnox. What could cause a healthy person to fall asleep in less than a minute, helps his muscles relax and, ironically, keeps him wide awake.
This medication, however, could be life threatening or worsen his condition in the long run. That is why Dr Pieter Slabbert, a neurosurgeon and expert on deep brain surgery (DBS) proposed that he urgently undergo surgery.
It is a deep brain-stimulation implant which will deliver small electrical stimuli to a collection of nerve cells deep within the brain where muscle-contraction commands originate (basal ganglia). “My quality of life will increase with 80 per cent,” Eckelmann says.
The problem is that the estimated cost of this operation is R500 000. Since Eckelmann is unemployed due to his condition and doesn’t have medical aid, he is in need of financial assistance.
In the meantime, he is receiving treatment free of charge at StepMed Physiotherapists and chiropractor, Dr Izak Venter. Upon asking him what he’d like to do when he get better, Eckelmann answers, “I want to make a difference in the lives of others. Creating job opportunities through a small non-profit business that reaches out to the less-fortunate and allows me to indulge in my passion for baking.”
Eckelmann explains that he’d also like to be a motivational speaker. “One thing that I have learnt is that there are so many confused and hurt people who just need assurance that they will be okay.”
Koen Koekemoer Attorneys has set up a fund for contributions. Mr Koen Koekemoer can be contacted on 013-755-2080 or koen@koekemoerattorneys.co.za
Bank details: Koekemoer Attorneys, FNB Cheque, account number: 6242 1578 628, branch code: 250016, reference: Eckelmann.
Visit Enable Eckner, a Facebook group that was started to aid Eckelmann, for any queries or to keep up to date with his progress.
