This week we hear from Sandra Czernicki who has gone through many struggles on her journey. Read more below.
Life, obstacles, and opportunities
I’m Sandra, 30 years old, was born in Poland, grew up in West Germany, and I’ve lived in Berlin since 2010; together with my fiancé, a cat, and a dog. The first time I heard the word ataxia was in March 2019 and nearly two years after starting the diagnostic process, I still don’t know the cause of my movement disorder which besides ataxia, also shows dystonic and Parkinson’s symptoms.
I’ve always been a very positive-minded, humorous, curious, and active person and I love all sports that involve balls. Let it be soccer that I played in a team until I was 26, squash, table tennis, volleyball, … My fiancé uses to say “Throw a ball and Sandra will jump after it” – though that’s unfortunately not possible anymore, at least not that extended. I’m still wondering that I got into sports with balls because I never had a working spatial vision. But who cares, I always enjoyed it and that’s the most important.
I also love different cultures, meet new people, nature, traveling, writing poems, cooking, playing guitar, listening to music, drawing, card, board, and video games. In 2013 I finished my Bachelors in Communication Management and afterward I worked few years in the field of performance marketing. I started as a working student and then developed to Director of Client Relations. Always enjoyed working with my team, the analytical and strategical work, my international clients, and travel. Because I enjoyed working close to people and working interdisciplinary, I decided at some point to find a job in the HR field which led me to the company that I’m still employed for as the Head of Human Resources. But, unfortunately, I’m unable to work since summer 2020.
In 2010 my bladder started making some trouble but after a clean MRI of my head, I didn’t follow the topic anymore and just lived with the issues I had. Like spontaneous urgency, mostly incontinence at nights but also situations where I felt urgency but had issues releasing. I got used to it. But also my stomach and bowel gave me problems and in 2013 I received the diagnosis of Crohn’s disease; an autoimmune disease that can lead to inflammations in the whole digestive tract. Back then no one really explained to me what it is or which effects it can have on my life – which was probably good. I didn’t really see it as a disease and was able to integrate it into my life without feeling limited. I had the luck of good employers, which means i.e. that I never had a fixed time in the morning that I had to be in the office or I had the possibility to work from home when needed and I had the support of family and friends. Of course, it was sometimes annoying and painful but all in all, I never had issues integrating and thus, accepting it. I still traveled and made e.g. trips to my favorite lake – things like this actually were nearly impossible during winter, with no leaves on trees and bushes… unless the area I wanted to go to had a good infrastructure, which is barely the case at really nice nature places. I also regularly noticed things about my movement, but I didn’t really take any of it seriously, or I blamed it on things like my overweight and Crohn’s disease, or I just thought that everyone is different. Apart from that, I had a satisfying and mostly happy life. Although I also regularly had experiences with challenging life situations. But whenever some kind of problem or challenge occurred, I tried to solve it, to learn, and make the best out of it. And it worked well.
So why should I have been bothered by the fact that I had trouble sliding through the back seat of a car, that I was always the slowest or constantly exhausted so early on; or why should I have thought that it’s not normal that I’ve never been able to sit and stand for long periods of time without leaning somewhere. One of the reasons why I stopped playing soccer was that it somehow became more challenging to keep the goal clean. It became harder and harder and at some point, it wasn´t that joyful anymore. But even here, I blamed it on getting older and my overweight. I also noticed a change in my writing, but I blamed that on the fact that I hardly ever handwrite anything anymore; so it was okay. Same with the cramps in my hand and fingers while writing.
In summer 2018 I noticed that the coordination of my hands and arms wasn’t that smooth as it’s supposed to be. I consciously noticed while drying my hands with a towel that a usually automatic movement with my right hand didn’t work automatically; hence since then I always had to dry my hands very deliberately and concentrate on the movements. And I still thought that it´s nothing bad as long as only my hand washing/drying is affected. At this point, I still didn´t see any connection to all the other things that I´ve noticed over the last years. But since then it progressed. My hand-arm-eye coordination got worse, there was a ride-sided gait issue, I noticed changes in my sensitivity, etc.
By summer 2019, I was already moving quite mechanically, like a robot. All the complaints were no longer only on the right-sided, but all over my body. Also, the problem with my energy level got worse. Evenings have always been worse than mornings. And at some point, I walked like a drunk.
I now need several breaks on just 500 meters with my walking sticks or holding on to someone. Just yesterday I received derotation bandages that should support my hips and knees and I really hope that they will enable me again to have an enjoyable walk somewhere outside with less need for extensive concentration and with less pain. I also have chewing and swallowing issues and a diagnosed detrusor-sphincter-dyssynergia related to my bladder issue.
The point where I decided that I should see a doctor (although my mom already pressured me for a longer time to see one) was when it happened for the third time that I was at work, working at the computer and wanted to click but it just didn´t work. My index finger just didn´t perform the movement that I wanted it to perform. This was the first time I felt limited because I knew with things like this I won´t be able to perform my job satisfactorily. Something similar happened already several times while rolling cigarettes or cutting vegetables but this was mostly around afternoon/evening. So in March 2019, this index finger thing happened and I started looking for answers and help. But even here I still didn´t see the connection to all the observations I made in the last years.
I wanted to know what happens with the body and what meaning it will have for me; unfortunately, getting any valuable answers at this time was impossible.
My diagnostic process was the biggest obstacle that happened to me in my life so far; I´m a big fan of challenges but this was an obstacle. I was confronted for the first time in my life with emotions such as fear, helplessness, anger, despair, and disappointment. And all of this related to the diagnostic process itself and not my condition; the condition itself is a challenge.
In very desperate moments, I imagined that it would be easier if I had been kidnapped and put in a dark hole; a hole from which I would have had no chance to escape on my own. Kidnapping was the nicer idea for me. I would have rather accepted the fact that I simply had no chance to escape than the fact that I could and even should have actually progressed faster with the diagnostic process, but unfortunately, due to a concatenation of perceptual and reporting errors, coupled with a lack of missing and/or wrong knowledge and misunderstandings, I was not taken adequately seriously and thus had to go through unnecessary negative experiences.
I think, only if you can accept something, it can become something that you can work with; and only if you can work with something, you can achieve satisfying results.
The way, that this diagnostic process went, was and still is hard for me to accept. But now, where after around 20 months of diagnostics, most of the known ataxia causes have been excluded, I hope to be able to deal better with all that happened. The pressure I personally had all the time, was to know that there still might be something that could help me and my condition. And now, I hope that one day there will be someone with a smarter idea and that it will be at least possible to stop the progression.
I wish every person in search of the cause of their condition to be treated humanely and professionally. There should be no room – especially in the medical field – for false pride, lack of insight into mistakes, and inhumane behaviour; and if it should come to that, both sides should be able to have the courage to talk about it.
The good side
Fortunately, I have also had good experiences and e.g. work with very competent therapists, have a good GP and although I developed a fear of doctors, I also finally found the courage to find a neurologist that is supporting me for a few months.
I go to psychotherapy, physiotherapy, and occupational therapy every week and consider each of the therapies to be very important and helpful. Soon I will most probably also restart speech therapy.
Unfortunately, I made the mistake of starting physical and occupational therapy very late. It was a mistake because I could have had certain questions answered much earlier. Answers that I probably thought I had to get from doctors over a long period of time. It probably would have also given me a better understanding of what was actually going on with my body and how to deal with it.
When I started physical therapy I learned e.g. that there are many ataxia patients who move robotically and that for some of them it is consciously compensating and for some of them it is unconsciously compensating. In occupational therapy I learned, among other things, that I seem to have been unconsciously working a lot with support surfaces for many years already and that this is probably also a kind of compensation; e.g. that I hold my arms against my upper body with as much arm surface as possible when cutting fruits/vegetables, or that I have already unconsciously developed strategies for different sitting situations when sitting (without or with armrests, with the possibility of putting my feet on the floor or not, etc.) – I find sitting without any support surface the most challenging: here, “knotting” the feet/lower legs together helps me, or in the case of a chair with backrests but no armrests, it helps me to “tie” my feet around the chair legs.
My fiancé is a former caregiver and also supports me a lot in daily life. He also often helps me with the optimization of my compensation strategies. Through him, I also understood, that a lot about moving correctly is about physics and gravity which, among other things, led me to the point of using “conditioned moving”. This means e.g. that I´m aware of my inability to stand freely, hence I conditioned myself that far that whenever I start to stand, I also start moving (e.g. circling my hips); as keeping moving doesn´t make me fall.
I´ve also started using a scooter when I realized that I won´t fall as long as I move. But the less my muscle tone became, the more it became a risk to use the scooter.
Just a short time ago I had to realize that even walking with my walking sticks became more challenging because the power in my arms became less – until I realized that I just have to place the sticks in front of me and not anymore next to me; doing this I´m able to use the ground as a support surface.
Two of the things that also really help me in my daily life are my Bluetooth headset that hangs around my neck (but on a stiff thing, not just a cable) and my diving shoes for walking at home. The headset is great because I like having phone calls and keeping my arm up is not possible for a long time and the diving shoes just give me more stability (and they are a great risk reducer when getting out of a bathtub).
There is much that can be done but it is still challenging and as great as every compensation is, a lot of them are very energy-consuming. So it is even more important to think wisely about what compensation tool/strategy to use if energy-consuming or not, etc.
In my opinion, the ability to reflect (not only yourself but also others), the ability to adapt, the ability to prioritize, and the ability to ask for help when needed are very helpful skills when it comes to daily challenges of chronic disease, whatever disease it might be.
My Christmas miracle
I also realized that I have a big problem with the kind of forced isolation that a movement disorder – and other conditions – brings along. My psychotherapist asked me once, what could be of help for me disregarding the cause or final treatment. And I told her “a 24/7 clown”. Someone that is spontaneously available to throw and catch some balls, to play a board game with me, or similar. In general, I’m good to do stuff on my own but at some point it became boring and besides the daily challenges of this movement disorder, there was something missing. Even without the pandemic, it is hard to fill a day satisfying as e.g. exercises become boring or impossible to do alone. This kind of thing can be additionally demotivating and depressing. And something that is currently helping me a lot with this, is my personal Christmas miracle that recently happened.
A good friend spent Christmas Eve with us. Luckily, he brought his new Oculus Quest 2 headset and I had the chance to try and play around with it. It was breathtaking and I still can’t really put into words what I felt when I did the experience. It was amazing that I decided only after trying two games that I need to have my own VR headset and without even knowing if I could really afford it now, I ordered it. Because I knew that I would even starve to be able to afford it, even if there would be only one game for it. I never spent so much money on technology before. The time that I had to wait for it was very exciting, I just couldn´t wait for it.
This technology increases my quality of life enormously. If you’ve spent most of your life passionately playing fast ballgames, for example, and then you can’t do that anymore and you’re basically less and less able to do certain things, then this current hour or so of VR a day is very enriching. Having amusing bar fights instead of punching the air with real boxing gloves… Moving to music, dodging obstacles and getting points for it, instead of doing nothing or being able to perform something similar only when another person has time…. getting to climb Mount Everest instead of just lying there… it’s all very rewarding. Even if it’s just one hour a day so far, I can fall asleep more satisfied. It’s challenging, it pushes my movement skills to the limit, trains different skills like coordination, it’s fun, there is competition, it imparts knowledge, and it also lets me interact with other people, for example in the form of an online ping pong game.
The ease of access and use makes everything even better. From the moment I decide “I want to play now” to the start of a game, a minute passes if at all. The headset sits on my desk and is always within reach, and charging the device is also straightforward. I can even directly record what I see in some games/apps and watch the videos afterward, and especially with more complicated processes, see afterward if I could have maybe solved it differently. There is no computer needed, which means I can relax on my sofa, sort some 3D puzzles and still train my fine motor skills. Also, most of the movement games are very flexible in their settings: I can play sitting or standing, I can play with one hand or with two, I can slow the music that I have to move to, etc. When even riding a bike in the air doesn’t work anymore, but I can stand on a spaceship and defend myself against other spaceships, it’s really overwhelming.
Also, I do not see my real body movements while playing a game or using another application, which is also kind of enjoyable. But I also need to admit, that this whole VR topic is kind of embarrassing for me. I’m working for more than two years for a company that develops VR applications and until Christmas, I’ve never tried more in VR than the one simulation that my employer developed some time ago. I liked it but I didn’t really see an advantage for myself. Maybe it’s also good that I didn’t really try anything different before because it might have been that the technology wouldn’t have worked that smoothly back then and in this case, it wouldn’t have had the advantages for me, that it now has. All in all, I´m very grateful for this discovery and I´m looking forward to more great VR experiences. I also see big opportunities and potential for movement disorders and VR.
For the time being, I feel like I kind of lost my courage to talk about certain things in detail and also my ability to ask for help to the extent I would need it. But my goal is to get back this courage and ability because I want to get back to the point, where I can honestly say “I’m feeling good, thank you” when someone is asking; no matter what’s the cause of my condition and if it can be treated or not. I will do my best to achieve that.
Why do I like “Hope for Ataxia”? Because of hope and awareness. I believe that patients and research can only unleash their full potential if the (right) knowledge is being worked out and spread. Only if the knowledge reaches everyone involved, patients and research can unleash their full potential and thus lead to therapies and treatment. Hope for Ataxia is doing a great job here; especially in giving space to all faces of Ataxia.
Thank you for reading and stay safe!
Thanks for sharing your story Sandra Czernicki!