Kim Strydom Story August 2020…..
I have orbited the Sun > 48 times and have had what I thought was MS (see later) for at least 20 years, if you count the date of the first symptom. This was classic textbook stuff (optic neuritis). However, my body has chosen to burn the textbook!
I was born in Cape Town, South Africa and I qualified as a medical doctor. I have worked in the clinical research industry since 1997, so when people ask me for advice, I tell them to ask a real doctor. I have one (awesome, but I’m biased!) teenaged daughter, who has done 100% of her schooling in Australian schools – she passes as a “local”, but my accent gives me away within a sentence. I moved with my little family to Australia in 2007 and I continued in my line of work, with the most important (career-prolonging) change being working from home.
My career can be mentally demanding, but I’m lucky that it’s relatively sedentary and pays for hobbies and boring stuff, like mortgages, car loans, groceries, electricity and school fees. I used to work full-time and travelled for the company at least five times a year, but I now work part-time and have changed roles within the company. I am fortunate that they have been supportive of my changing needs.
My training and experience in clinical research mean that I generally wait for more
information when I hear about “breakthroughs” in treatment and I am particularly sceptical about implementation timelines. Been there, done that, got the T-shirt and the walking stick. Show me the data!
The nerdy child has morphed into a nerdy adult – but not matured. I do “adulting” stuff with
reluctance. I can pass for either a middle-aged crocky chick, or a disabled teenage boy,
depending on the viewer’s perspective.
My symptoms started in May 1998, but I was formally diagnosed by a neurologist in November 2002 after he found clinical evidence of repeated central nervous system involvement in different locations. I was pregnant at the time of diagnosis, and that made me reluctant to try the new medications. There weren’t many disease-modifying therapies available in South Africa at the time, and since my symptoms were mild and I had excellent function, I was unwilling to risk side-effects for an intangible benefit. Decades later, would my decision be different? I have no regrets about the initial choice I made, or about changing my mind later and opting to start DMDs.
When people act surprised by my relatively long history of good function (like they’re expecting me to be in a wheelchair or something – oh wait, I am!), they almost invariably ask what I’ve “done” to “still be so good.” To them I say: Please remember this: A) I have many symptoms, they are just invisible most of the time; and B) I think I’m bloody lucky. I currently use a power wheelchair part-time, as recent progression has been somewhat
more rapid than I’d like. I don’t think I’ve done anything special. I have not followed special diets, but there was plenty of enjoyable exercising, just not in gyms. I did eventually take disease-modifying drugs for a few years, but have officially flunked all of those I’ve tried – and cannot risk others – so I’m not going to “do” any more disease-modifying drugs (DMDs) without very good reason. I have also participated in a couple of clinical trials, because, Science!
DMDs (10 years’ worth) didn’t really help as I continued to have relapses or progress (recently) on everything I’ve tried. It looks like infections & stress are my biggest triggers for relapses. It’s only taken a couple dozen attacks to figure this out! I must be a slow learner.
The sports I pursued with gusto made: a), it hard to find anything “objectively” wrong during most neurological exams unless the examiner knew me very well, and, b), me well acquainted with the floor. I am what one could call a “professional faller”, according to my physiotherapist and my skating buddies. It’s now so easy to find “objective” signs in me, that at clinic visits or in hospital for relapses, I have been asked if I’d share a couple of these objective signs to terrify the students. I am inclined to do this enthusiastically. The non- English-speaking students are usually begging for mercy within 5 minutes. Since these people are all supposed to be part of the future medical fraternity “taking care” of people like me, I think there’s nothing wrong with teaching them a thing or ten when they’re with me for such a short time.
Suffice to say that weapons training is not a good idea when you lose your grip on things unexpectedly. I’m also careful with handling crockery, beverages and glassware for the same reason. That said, I’m perfectly capable of dropping or breaking melamine and plastic bowls. I have a destructive talent…It might be one of my superpowers.
I have had to “relearn”, or more accurately, fall my way through, previously “automatic” skating techniques frequently in the past few years. I had to stop skating when walking became difficult. Skating gave me the gifts of socialisation with other skating junkies, tolerance for imbalance and training in getting up from falls. I also had the reputation of being the “Hoon 101 Teacher” at the local ice rink. Most of my instruction was delivered with this disclaimer, “This isn’t in the book, but…”
About 9 years ago I nervously bought my first collapsible walking stick for walking longer distances. I thought people were looking at me thinking: “she didn’t use that stick on the way in earlier, so why on the way out now?”, or: “I saw her on ice the other day!”, so I never took it out. I eventually learned to suck up my pride and use a non-collapsible stick, then a rollator (4-wheel walker). I now have an assortment of walking aids, which all have names. Different circumstances really do require the use of different aids. Walls and furniture don’t count. Grab bars in the shower are now my second-favourite aid. The power wheelchair is the current favourite.
Using a more “advanced” walking aid doesn’t mean I’ve given in, it’s just a tool. Initially I thought, “oh where’s it going next?” but using the walking aid created a relatively stable “new normal” for a while. The aid does help send a message, which can be useful for people like me, because I stagger or shuffle or I’m usually just slow. It tells people, “oh, she’s got something wrong with her, she’s not drunk or high”. I also am able to walk more upright,
because I’m more controlled. Bonus: I don’t have to waddle and don’t have to watch my feet. Sparky the power chair is absolutely awesome for creating additional personal space and dodging people who used to have to dodge me.
I can even turn my head while walking with an aid or using Sparky, and this has become so exciting. Ah the walking things I used to take for granted, that later became a treat. Being overtaken by spry octogenarians in shopping malls is not one of them. It’s amazing how
many “new normals” you learn to live with after a few years’ worth of wrangling holes in your brain & spinal cord. I have no hesitation in using whatever’s needed, depending on the situation. Any departure from home now requires planning with military precision.
I definitely “eyeball” how far I’m going to have to walk and how hot it is before selecting an aid. Choice: use the disabled parking, or suffer for days after a quick visit to a shop.
Shopping malls & longer distances require the use of Sparky – and someone to help. Using the combination of Sparky & online shopping enables me to stay abreast of teenage appetites.
Some symptoms from 1999 are still hanging around. I’ve kept these gifts forever, it seems, but I hope that some of the unwelcome visitors will depart when they’re bored. The non- sensory problems have stuck around, whether steroids were used or not. The vast majority (> 30) of my relapses have been sensory. The only way I can remember the transient stuff is by keeping a diary of symptoms. I have learned to type up a detailed cheat sheet that I take along to neurologist visits and I review this before seeing the neurologist. They only see me every 6 months; I live with this every day! Accurate scoring of my day-to-day disability is virtually impossible due to the wrecked bladder, guts & ataxia. Falls don’t count towards the score either.
For me, deciding whether to treat a new symptom by slapping down the immune system with steroids goes like this: is there really any need to chase after the immune system if the horse has likely already bolted by the time I seek help - and it’s a mild issue? If I’ve waited about a week to see what the new symptom is doing – and I don’t have an infection – and
it’s mild – I’ll generally wait it out. I understand that the use of steroids can shorten the recovery time, but not the extent of recovery or future progression. If I’m impatient to get better quickly , the ends justify the means, even if it’s temporary.
Am I back in “Limbo land”? In 2018, I tested positive for anti-MOG antibodies, which called the MS diagnosis into question again. This may also explain some of the features of my initially benign disease course. I call it “cousin of MS” or “FrankenMS” on crappier (literally) days. There’s a whole new world of jargon & abbreviations now – and of course this doesn’t respond to the MS DMDs. I didn’t respond to B-cell suppression, either, and it’s getting ugly lately. My medical history is no longer easily summarised on 1 typed page. My GP’s reception staff now know me far too well.
Currently, I’m living and working in regional New South Wales, which is annoying if you need to get hold of your neurologist quickly, but otherwise it’s been a good lifestyle in a beautiful location. I don’t know what the future holds, but since no one gets out alive, I may as well have a red hot go at things while I’m here.