Where it all began
***After going for numerous tests it was still unclear why Ian’s right arm was so weak, especially since he had no pain, no pins and needles in his arm or fingers and in that, he is right-handed. During these tests, Drs found prostate cancer and he was fast-tracked on hormone treatment and after a scraping, and more tests the cancer was no more. By May 2023 he had lost muscle mass in his shoulders and his left arm weakened. By June his neck was dropping to his chest and his speech slowed. He was referred to his Neurologist’s colleague (another specialist neurologist) for further tests to try rule out MND. Ian was finally told he had MND.
MND is short for Motor Neuron Disease, some people might recognise the name from association with Joost van der Westhuizen, or perhaps are more familiar with ALS, a type of MND. MND takes on different forms, for some it starts in the legs, others the tongue, and others the arms. MND can be fast or slow progressing and there is no cure. Every person is different and the way the motor neurons degenerate in each person is different.
Medical aid usually covers in-hospital tests and treatment but not much else and the “not much else” adds up quickly.
Ian can only use his thumb on his left hand. Walking is difficult because he can’t use his arms, so he has very little balance. Because the muscles in his shoulders are wasting away his arms began to hang by the tendon, resulting in subluxation. He had to get a brace to keep his shoulder from falling out its socket. He had to get a neck brace so he can keep his chin up when walking. He gets physiotherapy to keep the muscles from stiffening. He has an occupational therapist who has and is a huge asset in finding devices to help him. His hips and shoulders are bony and dig into the mattress, so he got an eggshell mattress. Ian battles to swallow so a speech therapist had to give him techniques to prevent choking. Fiona, his wife, has had to use the blender and most his meals are smooth consistency. As the disease progresses Ian needs more and more help. Fiona is an absolute star, feeding him, scratching an itch, blowing his nose, dressing him, combing his hair, bathing him and so much more, praying and helping Ian to stay positive, taking one day at a time. Motor neuron disease requires a team around the patient to protect the patient from complications. Ian and his family are grateful for the team that is growing and the medical devices that are facilitating a quality of life.
Laura and I would like more people to know about motor neuron disease and we hope that there will be more opportunities for us to raise awareness and funds to assist those with Motor Neuron disease and the people taking care of them.
To support Ian en ander, please consider making a contribution at https://www.backabuddy.co.za/ian-stewart-5657513790115572041
