What it’s like to lose a mother to ALS

My mom has always been a very strong character. She’s pretty much extreme in everything she does. She worked so hard and against all odds, she went from a financially poor background to making a mark in the corporate world alongside powerful people who are mostly men. She’s definitely one of a kind. She loved connecting with others and always had an effect on people. She’s always cared about her health. Always reading books to study more on healthy lifestyles and diets to follow, even supplements to take to keep healthy and have a long life.

It was the most shocking and terrible news when we, the family, found out what she’s been diagnosed with. She went through many months of tests ran by doctors, trying to find out what she had. Her symptom was very peculiar. It was speech slurring. One day suddenly we realised she was talking like she was exhausted and couldn’t form full clear words. Most of us, including her, brushed it off thinking it would get better soon. Until one day we had someone tell her that she may have had a stroke on her tongue. My mom visited a stroke specialist and he informed her that she did not have a stroke. Doctors in Malaysia couldn’t find anything wrong with her. All her tests had come back negative for any illnesses.

She was then referred to a hospital in Bangkok, Thailand. On November 23rd, 2018, they did every test again, and finally the test that shows that a percentage of her nerves are damaged. This points to the diagnose that she had ALS (Amyotrophic lateral sclerosis), Also known as Lou Gehrig’s disease and Charcot’s disease, a motor neurone illness that is so rare and terminal. Most symptoms involve muscle weakness, twitching, or slurred speech. In my mom’s case, it was slurred speech. When all of us received this diagnose, we couldn’t accept it. I was crying and her husband was saying it’s as if it were a very bad dream. We were hoping that it must be a misdiagnosis and there must be another explanation as to why she is suffering from the speech slurring. In fact, there is another disease called Myasthenia Gravis which is a neuromuscular disease that has the same symptoms as ALS such as muscle weakness, trouble swallowing and trouble talking.

Little did we know that soon after that she started to show signs of the disease progressing. The more we read up on ALS and the types of ALS it became more apparent that she clearly had ALS. For ALS, there are two typical presentations in the change in one’s health. Approximately 70% of patients show spinal form of the disease whereby muscle weakness in the limbs and 30% of patients show the bulbar changes affecting speech and swallowing muscles. My mom was showing bulbar changes of the disease.

On top of that, she had pseudobulbar affect (PBA), which involves uncontrollable and inappropriate crying. The moment she was crying uncontrollably at any given time and as well as choking while trying to eat, I began to realise and accept that she indeed had ALS and I felt devastated knowing that most patients have less than 2 years left to live. We all knew that my mother was born a fighter. So we were determined to fight ALS as well, together. The only oral medication that may extend life by 2 to 3 months is called Riluzole or Rilutek. She has been taking those until she couldn’t swallow the big pill and also because it gave her headaches.

The doctors in Malaysia were suggesting to carry out Gastrostomy surgery right away for the introduction of food knowing that she will not be able to swallow her food soon. We refused to give in to the disease and her husband made a good research for any available ALS treatments in the world. So far, there are only 2 treatments proven to only “extend” her life by a few months. One being Edaravone via IV infusion and the other is stem cell therapy. In January 2019, my mom went to Moscow, Russia with her husband to carry out her Edaravone treatments. In February she took a break and had a vacation in Bali, Indonesia with her husband and my older sister’s family. Right after that she went again for the second time to Moscow to continue her Edaravone treatments. Her third and final time she went to Moscow was in April 2019. She started to lose so much weight even before April. The combination of difficulty to eat and ALS making the muscle gradually weaker, contributed to her drastic weight-loss. 

On May 18th 2019 she travelled to Beijing with her beloved husband in order to carry out the stem cell injection therapy. The stem cell is injected into her spinal where it could enter her brain directly. This is considered a surgery. 8 hours after the procedure she wasn’t able to move. The second time she went to Beijing to continue the stem cell injection therapy was on the September 9th 2019. This time around she said the lumbar puncture for stem cell procedure hurt her too much. She decided to not continue this treatment. Then on October 12th 2019 she travelled to Paris so she could be close to me and my sister. She started an acupuncture treatment to help with her appetite and eating. On November 1st 2019 she went back to Malaysia. 

She was already complaining about coughing with a lot of phlegm. Not long after that on November 29th 2019 she left for Paris again to continue her acupuncture treatment and to spend more time with my older sister, my nephew and I. On the night of December 5th 2019 she had difficulty breathing and was admitted into the ICU of American Hospital in Paris. After running a few tests such as X-ray, blood test and CT scan we discovered she had Pneumonia which is a chronic lung infection. This was caused by food particles that entered her lungs because she was unable to swallow. Her oxygen levels had dropped really low a number of times and finally on the morning of December 13th 2019, she took her final breath. She has suffered for around 2 years starting from her slurred speech, to not being able to eat, drink and finally, to breathe. She went peacefully with her loved ones by her side. 

ALS is an unforgiving degenerative disease. An illness with no cure and only a couple of treatments to help extend the patient’s life by only 2 to 3 months. Receiving such a diagnose is like getting a death sentence. Imagine, wanting to fight for your life and at the same time having to accept that your health is deteriorating. ALS has took my mom away too soon. She was only 61. She’s the strongest woman I’ve ever known. A part of me felt grateful that she didn’t lose the ability to move, walk, type on the phone and dance. Even though she was suffering from the illness, she made sure everyone around her felt good. She was a very charismatic person and for her to lose the ability to speak must’ve been shattering. She enjoyed food so much and she was an amazing cook, so for her to lose her ability to eat food must’ve been so hard.

My personal relationship with her wasn’t all perfect because all mothers have specific expectations for her children and I probably didn’t fully meet those expectations. It was complicated but one thing that was for certain was that I loved her with all I had and so did she. It was really hard for me to accept her diagnose and I felt so sad. Months after that I was so scared knowing that I could possibly lose her. Now that I’ve lost her, my heart is broken. I really wish we had more years to go and more memories to make. I’m going to have to accept that everything was meant to be and that she will continue to live on through her daughters, her family and also through everyone else she’s ever connected with. In everything I do, I will do it with her on my mind and in my heart. I know her love will always stay with me.

This post is written to tell my mom’s story on how she learned about her illness and what truly happened in a chronological order. Also it is to raise awareness about ALS and that it is a disease that has been around for more than 150 years and still we haven’t been able to find a cure or a proper treatment to manage the degeneration due to the disease. 

I hope this could help open your eyes to the harsh reality of ALS and that you could share this with everyone you know. You could help fight against this disease by donating to the ALS foundation in the link below or share it with others. Thank you for reading this post.

http://www.alsa.org/

My mom with one of her horses named Moscow.