Simply put, well-known veteran local doctor, Dr Madni Noormohamed stands out as a symbol of hope. With the aim of motivating and encouraging others with the same condition. ‘Dr Madni’ as he is widely known, warm-heartedly shares his Parkinson’s journey, affirming his uncompromising commitment to serving others, as he has been doing for decades in his medical practice. In ‘Dr Madni’s’ words, “It is a very fulfilling feeling, knowing that I have assisted those in need, through the ability bestowed upon me by the Almighty.”
My story of Parkinson’s
by: Veteran Medical Dr… Madni Noormohamed
“I will now give you a dissertation of my Parkinson’s disease, to help you understand what my way forward is, and that for anybody who is under 70 and has the same illness.”
Before I begin my story of Parkinson’s, let me thank Nazeer Noormohamed for being kind enough to publish this part of my life in the Laudium Sun.
My name is Madni Noormohamed. Yes, I share the same surname as Nazeer and many would ask us whether we are brothers and my reply to all of them has always been, “Yes. Just like all other Muslim brothers, he is also my brother.”
Let me share some background on myself. I was very fortunate to be born in The Holy City of Madina, where our beloved Prophet (SAW) lived, and his tomb is in his house which is incorporated in the grand mosque named after him. I am a South African citizen. I studied at Dow Medical College, in Pakistan, where I qualified as a medical doctor in 1975. In 1978, I obtained my diploma in child health and in 1980, my fellowship in paediatrics. I received a post as a consultant in paediatrics after spending 1 year with professor Issy Segal in the gastroenterology unit. I was then the gastroenterology consultant for the Department of Paediatrics at the Baragwanath Hospital. I started my private practice on May 14, 1984 and enjoyed the rewards of treating children. Up to now, in retirement, a patient’s parent comes up to me and tells me this is the child whose life you saved. It is a very fulfilling feeling knowing that I have assisted those in need through the ability bestowed upon me by the Almighty.
My Parkinson’s journey…
I will now give you a dissertation of my Parkinson’s disease, to help you understand what my way forward is, and that for anybody who is under 70 and has the same illness. I was diagnosed by Dr Dave Anderson in 2015, at the age of 65. He is a Parkinson’s specialist. At my first contact he explained to me that the disease is due to the absence of Dopamine in the brain, and he must give me Levodopa to replace my lack of production. (Dopamine is a neural hormone responsible for brain function produced in the base of the brain). Dr Anderson then asked me when I was planning on retiring. I answered at the age of 70. He told me that it was perfect timing because the medication would start giving side effects of Dyskinesia after 5 years. Dyskinesia is uncontrolled, involuntary movement that may occur with long-term Levodopa use and a longer time with Parkinson’s.
That’s exactly what happened. He explained to me the term DBS, deep brain stimulation. Deep brain stimulation (DBS) is a neurosurgical procedure involving the placement of a medical device called a neurostimulator, which sends electrical impulses, through implanted electrodes, to specific targets in the brain (the brain nucleus) for the treatment of movement disorders, including Parkinson’s disease, essential tremor, dystonia, and other conditions such as obsessive-compulsive disorder (OCD) and epilepsy. While its underlying principles and mechanisms are not fully understood, DBS directly changes brain activity in a controlled manner.
He applied to Profmed for Parkinson’s as a PMB, and the medical aid approved. In 2020 I noticed that the effect of the medication was wearing off. Dr Anderson explained to me with diagrams, how the medication works so he decided to manoeuvre the frequency of the medication. In 2019 the osteoarthritis of my right knee caused a tearing of the medial meniscus. It resulted in a right knee replacement on the 3rd of March 2020. My recovery was beyond expectations, and I was overwhelmed until the Parkinson’s deteriorated at the end of May 2020.
Dr Anderson told me that I had come to the end of the line, and that I should consider DBS-deep brain stimulation. I also became very anxious and depressed. I used Zoloft with good improvement. Anxiety and depression are a well-known entity in Parkinson’s patients.
I fell a couple of times because of my balance, which led me to take support of a wheelchair. Dr Anderson emigrated to UK in October 2020 and referred me for Dr Marcelle Smith (neurologist). I took a second opinion from Dr P Rowji (neurologist) at Milpark Hospital. After increasing my medication, there was still no improvement. He then agreed with Dr Anderson and referred me to Dr M Smith (who is very experienced in Parkinson’s evaluation for DBS) I had an appointment with Dr M Smith in November 2020. She gave me a prescription for another medication which I was expected to take until January. I was not happy with the side effects of the medication, which I discussed with her on the phone. I told her I would wait till January, for the second visit. She did a dopamine enhancement test and after keeping me away from all medication for 24 hours, I got a score of 53%, which made me a good candidate for DBS.
She then referred me to Aline Ferreira (neuropsychologist) on January 20, 2021, for 2-hour sessions over the next four weeks to rule out any interference in my brain and to decide whether we should go ahead with the deep brain stimulation. She did a thorough neuro psychiatric assessment which involved testing my memory and answering a series of other questions. She also asked me about my hobby which is photography, and she was very impressed with my motivation in life. Her recommendation was to go ahead with DBS and Dr Aline Ferreira told me that she would meet with the panel of doctors who would put their heads together and decide whether I was a candidate for the DBS procedure. I asked her specifically about speech problems and she told me that I could lose my speech, but we would try not to. However, she also said that it could be recovered by proper maintenance and adjustment via the pacemaker.
On March 3, 2021, at a combined meeting between Dr Marcelle Smith, Dr Aline Ferreira, Gregory Jonsson (neuropsychiatrist) and Dr Marousio Zorio (neurosurgeon), it was decided that we would go ahead with the DBS. I still needed to see the neuropsychiatrist on 13th March 2021, then finally the neurosurgeon. I saw the neuropsychiatrist and he felt that it would be rewarding to go ahead, although there may be a disturbance of my cognitive functions after the operation, but they would try their level best to bypass those areas when introducing the electrodes to reach the areas they needed to stimulate. I saw Dr Zorio (neurosurgeon) on April 12, 2021.
Dr Maurusio Zorio:
A very kind and gentle being, who read all the reports of the panel of 3 doctors and even this summary of my Parkinson’s and was very impressed with the description and summary of my condition. He told me that he agreed with the DBS panel and that I was a good candidate for DBS. He explained in detail how he would introduce the probes in 2 holes, with the guide of MRI and a computer, to the subthalamic area of my brain.
Then he also went through all the complications that could arise, mainly focusing on haemorrhage and infection and how to prevent these complications. The result would be very good in my case. I would be able to walk and write, and all the complications due to my tremors reducing. Only my speech may not improve for which I would have to see a speech therapist. The date of the operation was set for May 18, 2021. I had my DBS operation done on May 18, 2021 as scheduled. It was a 7-hour procedure. The recovery was good. Lots of hiccups at Milpark nursing, but with the help of the Almighty, I managed to survive.
The pacemaker was activated with no problem on May 31 2021. On June 1, 2021, I went to see Dr Zorio to check the wound and he was satisfied. I went for a follow up on June 7, 2021, and Dr Marcelle Smith regulated the function of the pacemaker. My muscles were quite stiff, so I had to see my biokineticist.
Biokineticist Linda Strydom:
I started seeing a biokineticist from the time I was with Dr Anderson. He referred me to Joanna Coetzee who was excellent. I especially loved the water therapy in the warm water pool.
I found it difficult travelling to and from Bryanston and found Linda Strydom at the Zuid Afrikaans Hospital, with whom I have been ever since.
I will briefly discuss the infection that occurred 6 weeks after the DBS operation. It was Linda who saw the wound and was not happy. I started antibiotics immediately with very little response. I went back to Dr Zorio and he admitted me into theatre to open up and examine the extent of the infection. He got Dr Nel, a plastic surgeon, in theatre to assess the wound. Dr Nel commented that he always got worried about foreign bodies and infection, so they admitted me and every second or third day, I was taken back to theatre for a cleansing of the wound for three weeks before Dr Nel was happy and discharged me. The sisters at the ward nursed me during my admission for the infection of my wound.
Dr Evan Shoul:
Dr Evan Shoul who is an infectious disease specialist and who controlled the antibiotic usage, was extremely satisfied with the turnout and I did not have to repeat the DBS procedure.
However, I had to report to the wound clinic weekly for assessing the wound and after six weeks I was discharged from the wound clinic. I had to see Dr Smith three times a year for regulating the pacemaker.
My muscles were still quite stiff, so I had to see my biokineticist. My anxiety became unbearable. I consulted with Dr Jonson who was shocked that I could not speak at all and increased my Zoloft to 50mg at night and 25mg in the morning, informing me that the DBS monthly meeting is scheduled for 10 days’ time and he would discusswith the team the way forward. Well, the way forward was to tell Dr Smith to step up the pacemaker and so she did. My speech has really become worse for which I have been seeing Jennifer Lau, a speech therapist.
I have consulted with Jennifer weekly till present. Her speech exercises have helped a great deal. As my speech began improving my eyes would remain closed. I thought this is psychological and to prove this Dr Smith had to switch the pacemaker completely off for 48 hours and note the response on the eyes. There was no difference, so it was switched on again and back to Dr Jonson who tapered my Zoloft off and gave me VenlorXR. The effect of this medication has been brilliant because I am beginning to talk, my eyes remain open, and I am no more anxious. I saw Dr G Jonsson on August 30, 2022. He was overjoyed with the progress and said he would see me at the end of October.
That’s the story of my Parkinson’s journey.
Conclusion:
All this time I have been very positive about DBS and I have been telling people about it. This has proven that’s it was worth the trouble. I would like to thank my wonderful spouse, Shireen, for bearing with the ups and downs of my mood changes. If it was not for her, I would have given up long ago.
My three sons have been three pillars supporting me, especially Azam my eldest. He has been with me at all the doctors’ appointments. And the rest of the family, even my youngest grandchild, Meezaan, Nadeem’s youngest son, who competed with me in his walking milestones, but he won. And speech as well, he has won. Zafreen, Yusuf’s second daughter who helped me put together the videos, which have travelled around the world with accolades for my loving granddaughter. I must not forget my personal assistant David, Prudence and Sello for helping me at home.
It’s a blessing to have David answer my calls, drive, and assist me wherever I want to go. It’s so wonderful to have 10 grandchildren around me especially now that I have retired. I can still practice my paediatrics on the ten of my most loving children!!!!!! – my grandchildren and finally I want to thank each of you who prayed for me. God is Great, ALLAH hu Akbar!!
For further information on Parkinson’s, contact Dr Madni Noormohamed on:
082 778 6561 or 067 867 8660 or e-mail: kidsdoc@telkomsa.net
