Motor Neurone Disease Diagnosis Journey
I often find it difficult to express my thoughts, especially when it comes to discussing my feelings. This is partly because in Asian culture, it is not common to open up to our parents or express emotions freely. Therefore, bottling up my emotions is much easier for me than talking about them. However, I am gradually learning that it is okay to talk about our feelings and now is the right time to do so because there may be people out there who have had similar experiences. If I don't do it now, it may never happen.
I was inspired to write this blog post after I asked for people's perspectives on Reddit about whether I should get a job despite being terminally ill with motor neurone disease (MND). Without context, the obvious answer is no, but I provided some background and explained the challenges I face living with MND. The Reddit post was titled, “Terminally ill: I still want to work, or do I just call it a day?”, and while it may have come across as political, that was not my intention. Perhaps disability funding cut was a hot issue in New Zealand at that time, and the human element of it made people connect with it. The post received over 285k views, and the majority of the comments were messages of support. One comment that stood out to me was to explore writing and raise awareness of the illness.
(Reddit post link below)
While I find it challenging to write long articles because they tend to be too technical, I'm willing to tell my MND diagnosis journey, including the emotions, hardships, and self-discoveries along the way. Sometimes, it's hard enough to come up with a caption for a selfie without resorting to Google for "quotes about sunset" but I want to give blogging a try.
Motor Neurone Disease (MND), also known as Amyotrophic Lateral Sclerosis (ALS), is a condition that causes a gradual loss of muscle function. This can make it difficult to perform basic activities such as walking, speaking, swallowing, and breathing. The causes of MND are currently unknown, and there is no known cure for the condition. According to mndnz.org, most people with MND live for 20 to 48 months (about 4 years) after experiencing symptoms. It can be a very tough condition to live with, as I know from my own experience - I've been living with it for five years now.
Top of the World
In August 2019, my then-boyfriend and I visited Penang, Malaysia to celebrate our third anniversary, my birthday, and celebrate life in general because every aspect of our lives seemed to be doing well. We love Penang because everything you need is in a small, compact city, including nature, history, and delicious food at affordable prices. We had a great time and then went our separate ways, with him returning to England and me going to the Philippines to visit family.
Over the last few years, I have been busy chasing my dreams and did not realize that my father was getting old and frail. Therefore, I have made a promise to myself to visit him as often as I can. My father had a stroke in 2016 that paralyzed half of his body. Prior to his stroke, I have always noticed him limping while walking and later on, using a cane. His older sister also had a limp while walking, but she passed away at a young age, so I never knew much about her.
Every time I visit my hometown, I make it a point to meet my close relatives with whom I grew up. During my trip, I visited my cousin who lives in Zamboanga Sibugay, a province in the southwestern part of the Philippines. Although some safety and security issues in the past have discouraged foreigners from visiting, I was amazed by the beauty of this place. The beaches were pristine and untouched. We went to a nearby beach, we were the only ones there. I couldn't resist taking some cheeky photos in my red bikini, just like a proper millennial would do on vacation.
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| (Linguisan Beach, Philippines/August 2019) |
Towards the end of my holiday, I noticed that my right forearm felt tired, so I got a massage, which "helped". When I returned to Sydney, I carried on with my usual routine of shift work and a lot of night shifts. However, I started feeling more tired than usual and would spend my days off resting at home instead of working out or doing Zumba. Months passed, and by March 2020, I was feeling fatigued all the time, and I felt like worms were crawling under my skin and throat every so often. I later learned that this sensation is known as fasciculation. I thought I was just feeling burnt out at work, so I took a 2-week off to go to the Philippines.
Before my trip, I first flew to New Zealand and did a three-day hike to Liverpool Hut in the Otago region with my friends. While I was up in the mountains and washing my face, I noticed that I couldn't control my right ring finger. I told my friends about it, and they suggested that I should have it checked, which I agreed with. Although I was a bit worried, I decided to brush it off and just enjoyed our hike, laughing, and having fun and told them about my wedding preparations that was set to happen later that year.
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| (West Matukituki Valley, NZ/March 2020) |
After our hike, I flew straight to the Philippines. At that time, the COVID-19 virus was spreading rapidly. It was only a matter of time before the Philippine government announced that they were shutting down their borders within the next 24 hours. Without hesitation, I immediately returned to Sydney. Then the unimaginable happened: the world shut down, and the pandemic was declared.
Slow Descent
The year 2020 was defined by the pandemic, which brought uncertainty, confusion, and turmoil into people's lives. I, too, felt the impact of this crisis. I struggled to understand what was happening in my own body as if fighting an invisible enemy. Simple tasks like snapping a vial or drawing up medication using a syringe became increasingly difficult. Even though I was scared for myself, I also felt a sense of responsibility for the people under my care. I did not want to let them down. So, I approached my manager and requested lighter duties away from direct patient care (I used to work as a nurse in the ICU), which he generously granted.
Initially, I was doing COVID symptom checks at the hospital entrance, working alongside some of the loveliest people I have ever met. They were airport staff who lost their jobs when the borders shut. The experience was good and upsetting at the same time because knowing that they had lost the dream jobs they had worked hard for. A few months later, I was offered a position in a Virtual Hospital (similar to a telehealth), which I totally enjoyed.
During that time, it was impossible to see a neuro specialist due to the lockdown. When I finally secured an appointment via Zoom, I exaggerated my symptoms a bit and it worked. He booked me to see him in person the next day. I was desperate to find answers. I finally had my first EMG; I was both ecstatic and anxious as it was a step towards finding answers. Electromyography (EMG) measures muscle response or electrical activity in response to a nerve's stimulation of the muscle. The test is used to help detect neuromuscular abnormalities (hopkinsmedicine.org). Although the test was not the most comfortable, I endured the pain.
The neurologist was nice but did not offer much information or suggest that anything was wrong requiring immediate attention. He did, however, refer me to his “professor” and requested several tests before seeing him. At first, I was worried, but I soon realized that this was a process of elimination. He wished me the best, expressed gratitude for my work on the front line against COVID-19, and refused to let me pay, which was a noble gesture. I left his office with more questions than answers.
Over the next few weeks, I completed all the tests and booked an appointment with Professor Yiannikas. I was nervous during the consultation, he briefly examined me and promptly said, "It might be ALS." I was momentarily stunned and didn't ask any questions. After the consultation, I caught a bus home, and I cried my heart out on an empty bus.
The Time We Think We Have
Professor Yiannikas arranged for me to try regular intravenous immunoglobulin (IVIG) infusion every three weeks in the hopes that my symptoms would improve. IVIG is a therapy used to treat antibody deficiencies related to a variety of inflammatory and immune-mediated diseases. IVIG may be recommended for infectious, autoimmune, and other inflammatory diseases, such as systemic lupus and Kawasaki disease (healthline.com). He wrote multifocal motor neuropathy (MMN) as my interim diagnosis in my medical letters.
Multifocal motor neuropathy is a rare disorder characterized by slowly progressive muscle weakness, primarily of the arms and legs. The disorder is considered to be immune-mediated, which means there is inflammation resulting from abnormal functioning of the immune system (rarediseases.org), which made sense to go on IVIG based on the symptoms I am presenting. After a couple of sessions of the infusion, I had some improvement. It gave me a boost of energy, and the fatigue went away. Although it did not make me gain more strength in my arm and hand, it felt like it slowed down the progression for a moment.
Because of the pandemic, we had to cancel our wedding. We were going to get married on a beautiful sunny beach in Hawaii. We were lucky to get all fully refunded with flights, hotels, and the venue booked for the wedding. When MND was first mentioned, I explained to my partner what it is, what to expect, and what life would be like for the person with MND and the people around. We also discussed our future moving forward. I was straightforward that he did not have to stay, and I didn’t want him to stay out of pity. It's one of the most difficult conversations I have had in my life.
My dear Paul stayed for the long haul and wanted to get married on the same day we intended to tie the knot, on my birthday. On 9th August 2020, we got married in a small ceremony overlooking the Sydney Harbour Bridge. It was a magical moment and I felt that I was with someone who would stand by me. 9th of August is a special day for us because that is the date we first met in 2016 after a year-long of chatting online. I wished our families were there at our wedding, but we still had a great time with friends in Sydney. Time and circumstances were not on our side, but we always try to rise above any adversities that come along our way.
We seemed to have forgotten the looming threat to my health for a bit. I guess we were still on cloud nine celebrating. That celebration was cut short two weeks after our wedding when I received sad news: my father had passed away. I never got to fulfill the promise I made to spend more time with him. I am overwhelmed, and I miss him terribly. Mourning the passing of my father never stopped, but I had to keep going. I had to be strong for me and for my husband as we navigate the unknown horizon.
Best Day Ever
I continued to receive my IVIG treatment every three weeks, but it had minimal effect. Despite this, I remained hopeful. I have been working in a Virtual Hospital during the ongoing pandemic and have been enjoying my time there. Working with my amazing colleagues felt effortless, and we worked together as a diverse team from different parts of the world. We even introduced boba milk tea to some of our colleagues who had never tried it before. I was so engrossed in my work that I almost forgot about my health issues. However, my colleagues started noticing changes in my mobility. One of them pointed out that the fingers on my right hand had curled down, and another mentioned that I was limping when walking.
Their comments didn't bother me, as I knew they were just trying to be supportive. One time, when we were celebrating a colleague's birthday and brought food to share, they noticed that I was struggling to climb a few steps, so they moved the celebration to a more accessible room. I truly felt their care and the strong bond we had developed.
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| (Colleagues in Virtual Hospital/March 2021) |
In May 2021, I developed a cough that worsened when I spoke. I visited my GP, but they didn't find anything wrong. Antibiotics and other remedies didn't work either. The persistent cough made it difficult for me to speak, so I started speaking in short sentences, which helped.
On June 29th, during a normal morning shift at work, I suddenly had difficulty forming words while making a phone call. The person on the other end couldn't understand me due to the muffled sound and assumed it was a bad connection. I was stressed, and my colleagues checked on me. My manager arranged for a wheelchair to take me to the Emergency department, but I refused and asked to go home instead.
The following day, I had an urgent neurology appointment. I was nervous, but deep down, I already knew what the doctor was going to say. My husband, Paul, was with me and remained optimistic, hoping it was just a temporary "event" and nothing to worry about. I could feel the tension in the consultation room, and when Professor Yiannikas started speaking, he immediately confirmed that it was indeed sporadic MND ALS. Those words shook me to the core, but I held myself together. My husband, on the other hand, burst into tears. I wanted to hug him, but I tried to stay composed and absorb the news. I didn't cry, and I can't explain why. I suppose I wanted to appear brave as if I could handle whatever life threw at me. Ironically, on the day of my diagnosis, I was unknowingly wearing a t-shirt I had bought months ago that said "Best Day Ever."
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| (The t-shirt I wore on the day I was diagnosed/May 2024) |
The Battle I Can Not Win
Being diagnosed with MND is a lot to take in, but I am fully committed to facing my new reality head-on. It now makes sense why I was feeling the way I did - the constant exhaustion, muscle weakness, twitching, and mobility changes. I wished for a better outcome, and a fair chance to fight, because MND feels like I was handed a death sentence without a fair trial.
It's been 5 years since my first symptom and 3 years since diagnosis. I thought I would be over it by now, but it's like a rollercoaster, with ups and downs. The grief process, as described in textbooks, sounded easy, but there are times when I am still in denial, hoping it's just a bad dream and I'll wake up to 2019 when I was on top of my game. The anger kept creeping back, questioning why I deserved to be robbed of my freedom, happiness, and the ability to help others. These are questions I'll never be able to answer. Despite facing psychological struggles, I remain dedicated to living my life one day at a time, tackling each problem as it comes. It's easier said than done, but I constantly remind myself that there are people out there who have it harder than me.
Reflecting on my MND diagnosis journey, no matter how daunting it was, it revealed my inner strength and resilience to handle situations that I didn't know I was capable of. It taught me to value and cherish the love and support that people have given me during tough times, especially my husband, my hero. I am incredibly overwhelmed and grateful for his unconditional love and support. I may be struggling with the diagnosis, but having my husband by my side makes me feel like I am not alone in this battle.
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| (Alcatraz Island/ 09 August 2023) |
If you managed to read this far, thank you. Please join me in raising awareness about this condition. Share this blog, support MND research, or simply reach out to someone who might need a listening ear. Together, we can make a difference and bring hope to many. This blog is just one chapter of navigating my journey. I will do my best to write more using my eye-gaze computer about different aspects of living with MND and finding joy, hope, and courage despite adversity.
MND may shape my future, but it won't define my spirit.
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| (05 June 2024) |
Terminally Well,
Ally
Inspirational young lady : )
ReplyDeleteThanks! Means a lot.
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