It started abruptly enough in February 2018. My wife, Leni, started feeling that the kitchen knives were not sharp enough for cutting vegetables and meat and we changed the entire knife collection. It still did not help. Soon, she needed help to move pots and pans from the stove to the counter. Also, it became noticeable that her left ring finger started twitching and the space between her right index finger and thumb started experiencing muscle loss. The fingers also started curling and it was accompanied by pain. A shoulder pain started which we assumed was part of an earlier frozen shoulder. Then we noticed stumbling over words, fasciculation, left arm cramping and toe/finger cramps. We were also assuming that these might be side effects of the macular hemorrhage treatment that she was undergoing since 2017. We met our family doctor in April 2018, who recommended going to the Emergency as he suspected a stroke. Tests at the Emergency did not reveal anything out of the ordinary and we were provided a follow-up appointment at the foothills with a neurologist. An initial checkup with the neurologist did not reveal any problems; however, she was asked to go for an EMG test, which was scheduled 5 months later.
In between, Leni and the kids got a chance to go to India in August 2018 to get an ayurvedic massage for shoulder pain. Before the massage, following a friend’s suggestion, a checkup in a Mumbai Hospital revealed a surprise and shocking diagnosis; ALS. An independent confirmation again at another hospital in Vellore, India confirmed the same diagnosis. This was quite emotional and traumatic for the full family. As I could not go to India due to work, it was her brother who got the news first, which left him devastated. The son (who was 15 years old then) managed to piece together all the information and relate it to Stephen Hawking's disease. Our daughter while hugging her mother asked her, “Do you have only 3 years to live?” Coming back to Canada, the tests were repeated at the ALS Clinic and the confirmation was received that the diagnosis indeed was ALS. This was in September 2018.
In October 2018, Radicava was approved as a drug for delaying the ALS effects and she was one of the first patients to receive the medication. This was initially taken at the South Health Centre through IV infusion before being taken at home administered by nurses from Innomar. Other medications like Riluzole and Baclofen along with Vitamins were also provided. In 2022, the newly-approved drug Albrioza was also taken in oral form with other medications. During the first quarter of 2023, a choice was provided for Radicava in an oral form.
How did our lifestyle change? It was thrown upside down. ALS affects the whole family, and it was difficult to accept the diagnosis initially. The children, still in their teens, could not accept it and buried their heads in the sand. At the onset itself, I decided that as far as was possible, we will try to maintain our lifestyle and adjust and modify our routine as things changed. One thing that became noticeable was stability. She has had 9 falls to date, and every time she hit her head on the ground, the deterioration in overall functionality was noticed. Another issue was choking while having food or water. This became so problematic that by the end of 2021, she had lost about 30 kgs before her diagnosis weight and had become very weak. She had to the PEG-tube inserted in her stomach in January 2022, which led to weight stabilization but brought other issues like sleep deprivation due to frequent trips to the washroom.
The support provided by ALS Society and the Home Care Program was top notch and words cannot express our gratitude, especially to their respective co-ordinators Michelle and Home Care Occupational Therapist Angie. They were there at every turn to provide equipment and other support promptly, whether it is the wheelchair, transporter, walker, Bi-pap machine, transfer machine, the chair lift. Mention must be made about the drinking water bottle with a long straw supplied by society. The bottle attached to her chair would enable her to sip water at her convenience. Also, the ACETS program supplied a Grid Pad, an eye gaze equipment that enables browsing through the laptop with eye movements.
Slowly, we got into a routine. I would get up in the morning, wake her up, take her to the washroom, change her into her daytime dress and take her to her office chair and desk in the bedroom. With only finger movement for a mouse, I would make sure she is comfortable while seated at the desk. She would browse the computer for spiritual messages, verses from the Bible, inspiring stories from ALS patients, the latest developments in research and medications for ALS using her Pharmacy background, and messages on WhatsApp to family and friends. The home care personnel would come in the morning, and would carry out exercises, start the feed and medications and then would leave. Since I have to go to the office 3 times a week, I usually would be back in the house by the time the homecare personnel leave. I would then provide her feed and then if I have time and the weather is good, we would go to a park, where I would take her around in the wheelchair. By the time we come back, it is preparation for bedtime. However, she would get back to the computer to watch her favourite Hindi serials and browse for more spiritual and scientific articles. Then it is back to bed, with the Bi-pap adjustments and so on. Hence, she is fully occupied for the day.
We had a passion for road travel. We did one long trip in 2019 to Quebec from Calgary touching Ottawa, Toronto, and Detroit on the way. The trip was exhausting with kids helping in the driving, but all of us felt rejuvenated. Due to the Covid situation, no long trips were undertaken till 2022, when we took a trip to New York in May with the full family. By this time Leni needed help to go to washrooms and sometimes it was difficult to find family washrooms on the road trip where I could take her to some friendly gas stations and restaurants, this was made possible. Another trip was made to San Francisco on December 2022 and that was also quite successful. With Covid restrictions being removed, we attend Church Service every week and meeting so many people every week make her feel energetic. Our daughter is involved in ALS research in her Masters at U of C Neurosciences.
The support we obtained from friends, relations, and the South Health Campus ALS Clinic -OT, PT, Respiratory, nurses and doctors was amazing. Friends would take turns to provide food, and support for taking Leni to the Clinic and doctors and laboratory. Support from my co-workers and management was also really great. Sometimes, unexpectedly, total strangers would go out of their way to make us comfortable. It must be also mentioned about the wonderful care and service provided by CBI Homecare caregivers and by the wonderful nurses from Innomar. It was spiritual and experiencing God's love through these wonderful people. Recently, the World Malayalee Council honoured Leni with a plaque for bravely facing a terminal illness with courage and determination. The journey continues…