My name is Wernich Wandrag and this is my personal story and experiences after being diagnosed with multiple sclerosis MS in April 1999.
I was born in 1963, grew up in a loving family as a happy child, went to School and matriculated in 1981. I studied on a permanent basis, for three years, and graduated in 1985. In 1985, I was forced by the Law of the time, to undergone two years of Military Service. I was healthy at the time, and started working on a full-time basis in January 1987. I met my wife in February 1987, got engaged in July 1987, and married her in December 1987.
I followed a healthy lifestyle, participated in various marathons and finished my first Comrades Marathon in 1991. I was a committed and a dedicated athlete at the time. I completed the Comrades Marathon in 1992, 1993, as well as in 1994. My increased work pressure and various other commitments were the reason why I stopped participating in the ultra-marathons and long distances and only participated in shorter races.
FIRST SIGNS THAT SOMETHING WAS NOT RIGHT
It was only in April 1998, when I experienced the first unfamiliar signs and/or experiences? I felt off balance, had no co-ordination, contradiction of the field of vision, loss of ability to perceive contrasts of shade, heat intolerance, irritability, dizziness and hypersensitivity of my legs?
I had no idea what was wrong but realized that something was not right? My first thought that came up, was that something was wrong with my eyes and/or sight? I made an appointment with an Optometrist, for the first time in my life. I saw her at the end of 1998. She used various instruments and equipment, looked in my eyes and after a couple of tests, confirmed that according to her, something was not right. She recommended that I should make an appointment to see a Neurologist as soon as possible?
I made an appointment to see a Neurologist at Panorama M/Clinic. I only managed to get an appointment to see Dr. Lombaert, on 5 April 1999. After he examined me, he indicated that he is going to admit me in Hospital, to do a Lumber Punch and sent me for a MRI and C/T Scan. I was discharged the next day and saw Dr. Lombaert again on 7 April 1999 at his Rooms. It was then when he told me that I’ve got Relaxing Remitting Multiple Sclerosis. I was honest with him when I told him that although I heard the medical term before, I had no idea what it was or entailed?
He explained to me, that “MS is a chronic autoimmune disease characterized pathologically by multiple areas of inflammation leading to glial sclerosis. Almost certainly a virus activates the immune mechanism in the nervous system. It hits in many different areas of the brain. Other tissues alterations that are secondary to the initial inflammatory process include glial scars and sclerosis and disintegration of myelin sheets of nerve fibers which is called demyelination. The myelin sheets, protects and isolates nerves in the same way that insulation around an electric wire protects copper wire from exposure to the surrounding elements. He also gave me a VHS Tape, which explain everything. All the theoretical information but not the individual and emotional journey that awaits you!!!
I remember driving home from his rooms that day, in a state of denial, thinking whether or not to tell my wife of the diagnoses? How stupid that would have been! All the incidents, changes, adaptions, further developments and progression of the disease that still lies ahead!
Incidents and progression of the disease since diagnosis over the last 20 years:
I had my fist relapse on 5 June 2000 and the second on 7 February 2001, which were treated with Oral Cortisone (Prednisone Tablets).
On 16 April 2001 I had my third relapse and was admitted in Hospital for 5 days Solumedrol - IV drip.
In May 2001 I started using Betaferon Injections (injecting myself 3 x per week). Dr. Lombaert explained to me that although it’s not a cure for the disease, it will only assist slowing the progression of the disease. Since July 2001 until November 2007, I had 12 more relapses. (Treated with Oral Cortisone or in Hospital with Solumedrol – IV Drips). During May 2009, the Neurologist also switched me over to Interferon injections (REBIFF 44), also 3 x times per week. From June 2009 until Sept 2012, I had 8 more relapses. (Also treated in Hospital with Solumedrol IV - Drips) After I had my sixed MRI and CT scan on 7 February 2011, since the first in 1999, when I was diagnosed Dr. Lombaert confirmed that I’ve got Secondary Progressive Multiple Sclerosis (SPMS) During a discussion between myself and Dr. Lombaert in September 2012, I decided that he should start the formal procedure to get approval from my Employer, for me to get boarded on medical grounds. He compiled and submits a full report and clinical picture to my Employer. I formally retired on 30 November 2012. Both our sons were married which left only me and my wife in the large house. Except for maintaining the pool and the whole property, there were different levels, steps and not suitable for a wheelchair and/or walker/rotator. We decided to put the property in the market and sell the house.
The next logical step was to move to a much smaller house (probably a retirement village), situated on one level, which was wheelchair friendly and the availability of medical assistance, if necessary. We sold the house and bought a nice, much smaller house in a retirement village, with 24 hour security, voluntary meals, medical Centrum/Care-facility and garden services once a week. We moved during January 2015 into the new house, in Klaradyn Retirement Village, in Brackenfell.
I had my 24’th relapse on 16 June 2014, admitted in Hospital for 5 days, and treated with Solumedrol IV– Drip.
My original Neurologist, Dr Lombaert retired at the end of May 2016. His partner at the time, Dr. Keyter became my permanent Neurologist. I had my 25’th relapse on 14 June 2016, admitted in Hospital for 5 days Solumedrol IV–Drip, my 26’th relapse on 1 October 2018, treated with Oral Cortisone (Prednisone Tablets), my 27th relapse on 9 October 2018, admitted in Hospital for 5 days, and treated with Solumedrol IV- Drip, 28th relapse on 23 October 2018, admitted in Hospital for 5 days, and treated with Solumedrol IV-Drip and soon thereafter on 5 November 2018 I had my 29th relapse, admitted in Hospital 2018 and treated with Solumedrol IV-Drip.
Dr. Keyter send me for another MRI and CT scan, and after studying the results he had a long discussion with me in Hospital. He raised his concern of the fast deterioration of my physical impairment, the frequency of the relapses since 1 October 2018 as well as the number of relapses. According to him, it was time to consider moving to a higher level of treatment, instead of the Interferon Injections. He explained to me that according to him there were two options to consider. Either Aubagio or Tysabri, of which the usage of either of them, were subject to me being negative for having the “JC Virus”. A blood sample was send to Netherland, to be tested. Still waiting for the results of the blood test, I had my 30th relapse on 19 November 2018, the 31st on 10 December 2018, the 32nd on 13 January 2019 and the 33rd on 25 January 2019, admitted for 5 days Solumedrol IV Drip each time.
On 6 February 2019 I received a phone call from Dr. Keyter, who informed me that he received the results from Netherland, and that I’ve tested positive for the “JC Virus”. He informed me to come to his rooms as soon as possible . That afternoon he explained everything to me in detail. According to him, there was only one alternative option, which was either Gilenya or its clone, Tuvigin Tablets. to consider? We decided to go with the Tuvigin (1xTablet each day). He indicated to me, that he will make all the necessary arrangements.
The next morning he phoned me, confirmed that everything was arranged and that I must be admitted early on 3 March 2019 at the ICU, at Durbanville M/C. (The first dose, must be taken under strict medical observation). On 3 March 2019, the first Tablet was taken, under close medical observation, and I was discharged the same afternoon. Since the next morning it was one Tablet each morning, and no injections!
We were very fortunate that we had various policies at different Institutions, like for instance (Sanlam, Old Mutual, Momentum and Liberty Life). Years ago, when I took it out I thought it only covered death and normal retirement. It was only when I approached the Financial Advisor that after he scrutinized the Policies that he mentioned and explained to me, that the majority of them also contained a disability grant.
After explaining all the options, considering all facts and on my approval, he took all the necessary forms to Dr. Keyter to complete and sign. After I signed all the required documents, it was submitted to the various Institutions. Within three weeks all the money were paid out. For various Income Tax purposes (advantages) and on advice the money were invested abroad and locally. I received a monthly dividend.
A SHORT SUMMARY OF MY EMOTIONAL/ PSYCOLOGICAL FEELINGS,EXPERIENCES AND HOW I COPED WITH IT.
1. Difficulty to except the fact that I was diagnosed with an incurable disease. Why me? No history of the disease in the family and I was healthy and followed an extremely active lifestyle. Felt depressed, overall weakness and spasticity. Learned to take it day by day. Learned very quickly, that it was just not possible to plan anything in advance.
2. Numbness of both my legs and partial paralysis. Not every day the same, but varied constantly and unpredictable. Loss of muscle tone and restricting free movement of my limbs. Overall weakness
3. What will the impact be on my life, occupation, marriage (total impotence and inability to become sexually aroused), family, friends and lifestyle in general? I was afraid and uncertain of what the future might or will entail? I became depressed, frustrated, and short tempered. I felt like a total failure. The uncertainty and the possibility of become paralyzed was unthinkable? Since 2012 there was a continuous and definite progression of my impairment/disability. Poor till no control over my bladder, urinary urgency and bowl incontinence. Have to wear nappies on a 24 hour basis.
4. Uncertainty or lack of the practical impact of the disease in general and what to expect? I quickly realized over the years, that I’ve got no other option as to take it day by day, not able to plan anything in advance. The enormous and severe impact of heat! Inappropriately cold body parts (Specially my hands and fingers) extremely poor sight, blurred and sometimes double vision. Jerky eye movements, when trying to focus on something close.
5. General fatigue although it was impossible for me to fall asleep? It was just not possible for me to ignore all the questions and uncertainties in my mind. There was no other option for my Neurologist to prescribe as part of my monthly chronic medicine a sleeping tablet as well, (1 x Dormonoct tablet every evening).
6. Problems with my posture and find it extremely difficult to keep my back straight, when standing or walking with the walker/rotator. Feet (specially the left one), drags along floor when walking. Involuntary leg movements when lying on my back or in bed. (My wife can’t sleep in the same bed! She sleeps in the room next to mine).
7. With the numbness of my hands and arms, together with the muscle weakness and the partial paralysis, I’ve got no balance, coordination and constant or overshooting limb movements. Slurred speech and shaking when performing fine movements. Like for instance when I try to pick something up, it will most likely ends up on the ground. I can’t write anymore! I find it extremely difficult to eat on my own. It feels as if I can’t get the spoon or fork in my mouth, without spilling the food all over myself! Sometimes my wife needs to feed me like a baby. As a result of this, I am hesitant and afraid to eat in front of other people! Except for the anger and frustration it feels as if I’ve got no manners!
8. Short term as well as long term memory problems and forgetfulness. Without a calendar, written notes (not in my handwriting) or constant reminders, I’m lost!
9. Extremely sensitive for heat! We are very fortunate to have two air conditioners in our house. (One in the living area and one in my bedroom)
10. Swallowing problems. Swallowing any type of food or liquid, needs my full concentration Must be extremely careful, because I can’t cough!
11. Start to isolate myself from people, prevent gatherings or even my social life that I was so familiar with. I find it extremely difficult to try and explain my feelings and circumstances to family and friends. Find it difficult to explain, except for the theory, anything of what is wrong with me. The uncertainty felt unbearable.
12. It felt as if my life made a 180 degrees turnaround. Once being an active, motivated and a committed person, I became a physical handicapped or impaired individual? The majority of time, it became necessary for one or sometimes two persons, to assist me doing something basic. I became basically fully dependable on somebody to assist me with basic stuff!
13. Personally, I promised you, it’s not easy, but extremely difficult to handle the whole situation, the unpredictable progression of the decease, uncertainty and the reality every day of your life. A couple of years ago the Neurologist (Dr. Lombaert), referred me to a Physiatrist, Dr. Mayne. After her assessment and a couple of consultations with her in her consulting room, she prescribed an antidepressant (Wellbutrin XR 500 mg), for me, which I need to drink every morning.
It is extremely important to keep in mind that although some of the mentioned experiences, incidents and feelings are basically on a more permanent basis, there are some of them that are coming and going, totally unexpected.
One thing is for sure. To have MS and living with the disease is not something you can plan for. It’s an incurable disease! No other option as to take it day by day, and try to stay positive, easier said than done!