MULTIPLE SCLEROSIS : CHALLENGE ACCEPTED !
Updated: Jul 26, 2022
8 years since diagnosis, below is the way I have tackled the challenges in front of me.
While it has been 10 months or so since my last update on my battles with my uninvited and completely unwelcome autoimmune intruder, I have received comments from friends and family alike, asking for a proper timeline of how things have unraveled since my diagnosis in 2014.
With that in mind, I have decided to break the past 8 years down into manageable sections: Starting with symptoms noted in late 2013 till diagnosis, medication and the progression of this autoimmune horror !
I will end with a slightly more detailed summary of my present situation up to JULY 2022.
I would like to make special mention of those who have really helped me through the low moments as well as how I have managed to train myself to respect this beast that lives inside me. Respect may be a very odd word to use for this autoimmune gate crasher, but without respect, this beast could turn my life, and the lives of those close to me, upside down.
LET’S GO BACK TO 2013....
Having experienced concerns with my vision while
mountain biking late in 2013 - which included a near fatal fall on Table Mountain, I spent two months going from optometrists to ophthalmologists. Neither professional respected my claim that my right eye was losing focus when I got my blood pressure up. Other than mountain biking, the same thing was happening as I enjoyed a hot bath or chilling on the beach on a hot summer’s day.
Anyway, I managed to convince the ophthalmologist to refer me for an MRI. Upon receiving the results, I found his answer to me odd, but I do understand why he chose his words carefully. Sitting in his office with the results in front of him, he simply advised that the results of the MRI made it clear that there was nothing wrong with my eye. But because there was something else identified on the M.R.I, he strongly recommend I visit a neurologist to discuss the results in detail before I considered going anywhere else.
SIDEBAR: imagine you are driving on a farm dirt road while visiting family and you feel you are unable to see properly through the front windscreen of your car. Naturally, you decide to put the windscreen wipers on to clear the dry dirt and dust to see the road better. BUT, alas, the addition of water onto the dry dirt does NOT make it easier....it does the opposite...you can now see less through the mud smudged windscreen.
THAT IS WHAT I HAD WHEN MY RIGHT EYE....well...FAILED ME.
Fast forward to late August 2014, when the neurologist explained the findings of the MRI to both Jax and I. He remains my neurologist today as we both felt respected, understood and cared for - he managed this conversation very delicately with us. He explained that the MRI showed six blotches on my brain, which could indicate MULTIPLE SCLEROSIS. Then he reassured us that that he never diagnosed M.S. until the results of a Spinal Tap (or lumbar puncture) were in front of him.
(For those who have had kids or have witnessed your wives go through a caesarean section for delivery, an epidural is administered with the help of the longest needle ever made by man - inserted into your spine. The only difference is that the epidural contains anaesthetic inserted into the spine, while for the lumbar puncture, the needle is inserted to retrieve and assess one’s spinal fluid for health issues...
I do not want to spend too much time on this process as it was quick and painless to be honest - the recovery however was a different story.
Once the fluid has been withdrawn and the needle is removed from the spine, nine out of ten people have no issues just lying down for another hour or two as the hole closes. Sadly... you guessed it...I am the one guy out of the ten to have a post procedural issue! Upon returning home, I opted to continue with my daily activities.
But then the MIGRAINES started.
I was in severe pain when standing , but felt fine as soon as I lay flat.
Jax reported this to the doc who advised her that I had a SPINAL HEADACHE.
What happens is that the hole made by the needle, when taken out of the spine, does not heal properly....and spinal fluid leaks out - thereby causing the migraines.
Oh...great...now what Doc?
Just hang tight for now and see if this hole closes on its own over the weekend Another 3 days of suffering awaited me....
Monday came with no improvement and I was rushed to hospital for another procedure known as : an Epidural blood patch. They take blood from your arm and INSERT (AGAIN...INSERT) with another long needle into your lumbar puncture hole, with the hope that the new blood clots well and then helps close the hole.
Fine - bring it on I say. Just to let you know that this was the time that the OLD CHRISTIAN BARNARD HOSPITAL (located in central Cape Town) had unofficially closed its doors as it was relocating to a brand new and magnificent new setup on the Cape Town Foreshore. The reason I am telling you this, is because the only surgery available for my procedure was in fact in the LABOUR WARD.
Yip, I can now safely say that in the space of one week I had an epidural AND I had another procedure to fix the epidural while sitting in a gynecologists' obstetric chair - the good news is that I did not need to put my legs into the stirrups.
Now, this doctor was clearly not wanting to work in the labour ward as he did blunder the procedure and he took blood from my arm and before closing the wound on my arm properly, inserted the blood (effectively... thank goodness) into my spinal wound. While he celebrated the successful transfer of blood from one part of my body to the next, I had a fair amount of blood seeping out of my arm.... sorry - a bit gory, but it was quite a weird experience – worse than the actual lumbar puncture.
Let us fast forward a bit now....2 weeks later, on 23rd September 2014, the results were back, and the doc confirmed that I had MS....the six blotches were in fact lesions on my brain. I was reassured that we had managed to catch the disease quite early in the process and I was advised that the official diagnosis was Relapse Remitting Multiple Sclerosis (RRMS) .... effectively stage one.
Time to get onto medication soonest.... daily injections of COPAXONE...
Thankfully, my medical aid approved the medication without any delay, and I could begin as soon as I received them.
Along came the very nerve-racking day of my first injection - I will never forget the image of the day (23rd October 2014) sitting with my own nurse assigned to me and with my MS WARRIOR and biggest supporter (my dear wife, Jackie) cheering me on.
Once I started these daily injections, I must be honest when I say that they fitted very well into my daily routine. The picture I included below indicates an incredibly significant achievement in my life - my greatest personal achievement. While I am proud of doing so much in my life, the number 784 is an emotional number for me.
It indicates a 784 Day period in my life whereby I DID NOT MISS ONE DAY OF INJECTIONS. I will mention a few memorable NEAR MISSES where I nearly broke this 784 day 'winning streak' - there are a few humorous and quite horrible memories which will help you understand why I am so proud of not missing one injection for 112 weeks or nearly 26 months.... Before I share a few of these stories, let me provide you with my simple instructions received from the nurse appointed to manage my medication
1. Always inject at the same time every day. It does not matter when in the day if it is NOT less than 22 hours after the previous injection. This consistency helps the body cope with these regular injections. If you are later than 26 hours since the last injection, just forget that day and continue the following day at the same time.
2. I have seven places available to inject. I was advised that eliminating one area was allowed and for me the arms (left and right) were not to my liking…so I had five areas remaining.
I remember misunderstanding the one exact area to inject early on and got quite an horrific bruise that lasted a month because I injected on the INNER thigh…. instead of the outer part – painful and quite terrifying experience to be honest.
Another quick story. I asked my Neurologist in the beginning how a daily injection could help curb the diseases. His answer was both amazingly simple to understand as well as extremely logical.
He explained to me that, as an autoimmune disease in which your own body ends up attacking itself, the trick was to CONFUSE your system in order to limit the damage that it could end up making. Put simpler, every daily injection alerts your system to the injection site – as it believes an unwanted substance has entered your body.
Its job now was to urgently get rid of this harmful material. So, every day, when one injects, the immune system kicks in to fight off what it thinks is a dangerous intruder, but is in actuality a harmless liquid being absorbed daily.
This distraction of the immune system prevents it from attacking the myelin on the brain cells and causing irreparable damage…. resulting in the destruction of the brain cells (referred to as lesions of the brain)….
HORSE RIDING IN THE DRAKENSBERG
In July 2015, Jax and I took the kids on holiday to the Drakensberg and on day two of our trip I fell off a horse while enjoying a gentle ride with the kids. The fall did not seem too bad until I realised that while trying to break my fall, I had done something horrible to BOTH of my wrists.
We needed to get to the hospital in Howick immediately to get both wrists operated on.
So, 30 minutes into our 2-hour journey to the hospital, I froze and freaked out while Jackie was concentrating on staying focused on the remarkably busy N3.
ME: ‘We must go back…. (I protested loudly….)
JAX:’ What the hell for? we need to get to the hospital…. now!
After 250 consecutive injections and no MS relapses since I began them, I insisted (and had a bit of a temper tantrum….) we go back to our resort to get my injections…. knowing that we would be in hospital for at least one evening….
MY BELOVED WIFE turned the car around to my great relief and I managed to inject myself after a double op that evening….and I kept smiling with the help of PETHIDINE 😊
BUSINESS TRIP TO CHINA
It was not my first trip since diagnosis, but I arrived at our hotel in Foshan late at night. I got into bed immediately but woke up at around 3 am VERY UPSET and shaky…. I had already done over five hundred consecutive injections and I was NOT wanting to end the streak now.
Then I had a rational conversation with myself. At 3am in China it is around 9pm in SA. I took my last injection at 7.30pm just before the plane left Cape Town, so I convinced myself that I was within my limit of 26 hours to inject…. JUST….
The trick for the next few days was not allowing myself to inject within 22 hours of the night/morning before – so I woke myself up at 1am the next morning and then stayed up till 11pm the following day…. PHEW: MISSION ACCOMPLISHED….
TRAVEL IN BARCELONA
While my 784-run ended in DEC 2016 quite anticlimactically (after just completely forgetting to inject the night before) I continued to religiously take my injections daily although I did miss a day or so every two or three months.
The one scary moment was when I arrived in Barcelona before a trade fair. I caught a taxi to about two hundred meters from my hotel as the driver advised that in early evening traffic, the roads closed around my hotel as it was a large tourist area.
I got out with my bags and I clearly remember a long 200meter walk to the hotel. Then while checking in, I realised I had a problem – one of my small carry bags was missing. It was a NIKON camera bag that contained 2 weeks’ worth of my injections…. FLIP.
After retracing my steps for at least 2 hours, I resigned myself that a thief must have seen the camera case around my arm and somehow, among all the people, distracted me and nonchalantly relieved me of the bag thinking it was an expensive NIKON camera. I keep trying to imagine his disappointment when he saw the injections….
I had been advised by my neurologist that seven days was the limit to go without the medication and so after our 5 days in Spain, I had to catch an early flight back to Cape Town.
While I have more little stories around the injections, the truth is that I did very well on the COPAXONE while I was in the first stage of MS.
I can honestly say that for the first 6 years…. until the dreaded pandemic hit the globe in 2020, the main issue for me became the CHRONIC and never-ending fatigue, as well as times of short term memory loss, vertigo, and my inability to walk in a straight line.
I also have problems with lifting things with my left hand. The tremors or shakes can be amusing but when you start dropping things, it does get frustrating. I do also battle with my swallowing - I can choke on small tablets as my peristalsis (swallowing) muscles have also been affected.
Then, I should also add that my tolerance levels have definitely shortened. So much so that I remember Jackie having a very stern chat to me when I snapped at her for no apparent reason. Now I am aware that after being married for over 20 years will bring a few disagreements over time but I will admit that looking back, I was not myself. Once we identified and I acknowledged this as part of the disease, I was prescribed Nuzak (a generic of Prozac). Jax says this was a game changer.
My fatigue issues did not start from the beginning. Over the years, I slowly got increasingly tired after doing the most simple and mundane things…. until it got to the stage where, quite truthfully, getting up to take a shower and get ready for the day became very taxing and often I ended up back in bed.
In about 2017, I went back to my neurologist and asked him for help to get over this debilitating fatigue. His answer was quite simple – He provided me with a script for PROVIGIL (in the US it is known as MODAFINIL)
To say that it was potentially life changing was no exaggeration as I could focus on daily tasks much better and not worry about the physical exhaustion felt after doing basic things such as driving to the mall!
Once I researched what PROVIGIL was, I came across a remarkably interesting fact. If you have ever watched the movie (and a series on TV) called LIMITLESS…. you will understand why this drug was so great for me.
The movie is obviously over the top and fantasised, but the point is that Provigil was impressive for me until there was a major outcry in the world over how accessible it was to anyone. The bottom line is that it was withdrawn from the South African market in around 2018 and it only became available again in late 2019…
While it was not available, I was prescribed Neucon - otherwise known as RITALIN
As it stands, I can get myself from 8am till around 2pm on the Ritalin before there is an overwhelming wave of fatigue that hits me. I am very grateful as there were times that I could not get to lunch without having to sleep.
Now we need to move forward in time a bit.
When September 2019 arrived, the time was right for me to resign completely from the family business that I grew with my father when I joined in the year 2000. With complete confidence in the ability of my younger sister to lead the company, I bowed out with a heavy heart but with complete pride.
In the months before resigning I registered a new company, ORIGIN8 Décor design. While I knew it would be more of a niche operation, it has never and will never become something difficult to manage. So, feeling both confident and excited, Jackie and I began a new chapter in our lives as budding entrepreneurs….
ALONG COME COVID….and with it – uncertain and confusing times for all….and ORIGIN8 was not spared in this pandemic.
Because the company had only just started to find its feet, after having received encouraging and very welcoming feedback from the market, we were set to pick up lucrative contracts from Dubai to Mauritius. But with the rug being pulled from under us in March 2020, I quickly sensed that I would be unable to pull a salary from the company from April 2020 and will ever be grateful for the option of putting in a claim with a disability cover policy I had.
The truth is that by April 2020, not only were we in complete lockdown and unable to earn a living, both Jackie and I sensed that things were not all right with me and as soon as I was allowed to, I went for my annual M.R.I. to make sure that things had not deteriorated for me.
While being an eternal optimist, I was sure that the medication I had been on for almost six years was still maintaining my condition and ensuring that I had not deteriorated.
Unfortunately, this was not the case.
The M.R.I. revealed another seven lesions on my brain – taking the total to thirteen visible lesions visible – with half of them active and concerning. The doc said very diplomatically that it was time to treat the disease with a more aggressive medication. He suggested a bi-monthly injection called PLEGRIDY.
Having injected daily for so long, the thought of only having to administer two injections per month sounded exciting. But I could not have been more wrong…
With excitement, I applied my first injection and within 24 hours, the side effects, although expected, were intense and a bit of a concern. I took a week to regain the much-needed energy to be able to function at all. I spent the better half of a week in bed, unable to do anything – I really had no desire to do anything but sleep!
The second week was better as I started to regain parts of myself, I felt I had lost for a week.
BUT the second week was quickly over, and it was time for the next injection….
For 2 months, this cycle repeated itself after every injection. By the fourth injection, Jax contacted the neurologist to report that we were not extremely happy with PLEGRIDY.
Yet another appointment with him and he proposed I continue with the Plegridy as he got hold of our medical aid to ask them to cover what he termed: the ‘’Rolls Royce’’ of M.S. treatments = a monthly infusion of TYSABRI.
One month later, we were advised by the medical aid that they would not cover this treatment as my M.S. status had not moved from R.R.M.S (level 1) to Secondary Progressive M.S. (level 2).
Disappointed but not without options, I was put onto a daily medication called AUBAGIO.
While we waited for the paperwork to go through and for the AUBAGIO to arrive, I had 3 days of visits by a medical nurse to administer a cortisone drip. After these infusions, I did feel ‘zonked’ but it did do me the world of good.
From early 2021 till June 2022, I have really enjoyed the daily Aubagio tablet.
Yes, I had managed to get away from self-administered injections for over six years and now only need to take one tablet daily.
Aubagio has really been wonderful for me and the one enormous difference I have most enjoyed, is the fact that, while still battling with fatigue daily, this daily tablet somehow gave me an extra two hours of functioning before I felt a strong need to get into bed.
At one point early on after my diagnosis, I could not get through the day without a regular sleep around lunchtime. On Aubagio, I have felt the pull towards my bed only around 2pm every day and instead of sleeping for ninety solid minutes, all I have required was a 60-minute period to let my body rest – only occasionally needing to fall asleep. We celebrate small victories…and this was certainly a victory.
2021, and being on my new medication, my health seemed to stablise. We, as a family had a very challenging period from mid-2021 till Jan 2022 which I will hopefully be able to elaborate more on in the future, but it was certainly a time for me to really look at my M.S. from a distance – knowing that each one of my family were facing their own individual challenges – challenges that both Jax and I as loving and caring parents were grateful to be able to have a hands on approach with. We could not allow either of our kids to face the many obstacles that were lined up in front of them without our support. Jackie also had her own physical battles to fight, and again I was happy to be able to not give my M.S. any more airtime than it required as I put all my energy into her wellbeing.
Come January 2022, when most of these obstacles that Jackie, Michaela, Tayden, and Loren had overcome, it was as if my M.S. felt It needed some attention.
The first one I will brush over quickly as it can become embarrassing.
During 2021, I really battled with my stomach and got to the point that without warning, I needed to find a toilet very fast. When I realised the very real possibility of bowel incontinence, I went to one of our local gastroenterologists.
Following a barrage of colonoscopies, and gastroscopies as well as quite an exciting procedure of swallowing a camera to take pictures of my bowel, I was diagnosed in early 2022 with I.B.D. (Inflammatory Bowel Disease)
Not great, but with my sixteen year old son being diagnosed with Crohn's disease 12 months prior, I do at least have someone in the house that understands the issues associated with this condition.
And yes, it is easy to put this bowel issue down to the M.S. again ( although I have been advised that it could also just be a consequence of age )
Jax noticed this and also paid attention to issues she could identify had deteriorated with me over the previous few months. My left leg was dragging behind me more than it had in the past and while I needed nothing more than to walk with a cane when required, she (very fortunately) insisted I see a specialist podiatrist to check on my gait (one’s manner of walking)
While the neurologist had noticed in the last M.R.I. that one of the lesions on my brain were impacting my left leg, Jackie did feel strongly that I now required support for my left thigh muscles that were clearly atrophying or wasting away.
By March, I had a very impressive leg brace custom made and it is something I do not leave home without. It assists me when my thigh muscles are simply not in the mood for strenuous activity (like walking 😊) and the brace also supports my knee as this is the one part of my leg that ends up bearing the extra weight if my leg decided to go on strike.
The brace was gratefully received the day before the five of us went on a much-needed trip to Europe to escape the emotional and physical trauma that all of us had been through over the previous twelve to eighteen months…
About 4 weeks after our return to Cape Town in April, I woke up one morning with an intense knot on the left side of my neck. I immediately put it down to a bad night in which I must have slept strangely on my pillow but after three days, the spasms in my neck were followed by an intense headache which quickly turned into migraines. Fast forward another three days and I felt weird pains on my left chesf – just above my heart.
Thinking enough was enough, Jax set up an appointment with the neurologist, it was time for another chat.
The meeting was very quick but also very comprehensive. Jackie asked him if there were more active lesions affecting the left-hand side of my body. Yes, there were he replied, and the following points were made clear to us
I had indeed progressed from R.R.M.S to Secondary Progressive M.S.
The left-hand side of my body was under attack
I now had fifteen visible lesions on my brain (when first diagnosed I had only 6)
The next step to help alleviate the migraines, and the pain on my left side, I was yet again to receive a three-day I.V. cortisone infusion.
Now, it was time to get to the next medication and at the time of writing this update (end of July 2022) I am still awaiting news from the medical aid whether they will cover my move from AUBAGIO to the new medication, KIENDRA. For this I did require another set of bloods to check my liver function and the functioning of other organs.
Recently, I watched a short video once where an Olympic coach was training a young hopeful for the next games, and when she felt despondent after a really unsatisfactory training session, the coach pulled her aside before the sense of defeat sunk in and he simply advised her that to reach her goals, she must understand that she is playing a GAME OF THIRDS.
He explained that a third of the time you will feel elated and full of confidence.
A third of the time, you will feel satisfied but not overwhelmed with pride while the remaining third is when you will feel completely overwhelmed and will want to give up completely.
He continued: If you make sure you are accepting of, and grateful for the first two thirds, while acknowledging that the tough remaining third is an essential part of the journey, you will succeed in anything you set out to accomplish.
That is how I see this disease…. a disease of thirds.
To be quite honest, while I know there will be those patches of extreme difficulty, I am determined to make sure I maintain, appreciate, and respect the main two thirds of this ‘game.’ I am loved, I am blessed, and I am extremely grateful to be able to experience each one of my ‘thirds’ – and I urge you to celebrate them as well…regardless of which one you are in at any given time.
In closing, I thought the following verse sums up my take on where I am emotionally right now. I do feel frustrated at times, but very aware of the fact that I could be far worse off after eight years on my journey. My biggest fighter on planet earth remains my wife, while the Man above, Jesus, remains my guide and protector.
As my journey with M.S continues, and I have gone through the lows of relapses, I take a look at this quote and it encourages me to keep moving forward...I will always attempt to be a better person today than I was yesterday...
Take care all and thanks for taking the time to read My Story