Living Fully with Motor Neurone Disease

It's been five years since I first experienced symptoms of Motor Neurone Disease, and now I rely fully on my husband as my sole carer. Accepting help was tough initially, given my independent nature and background as a former nurse. However, I've come to terms with my changing needs as my physical capabilities have evolved. I've noticed a lot of changes in my physical abilities over the past year or two. I mostly get around in a wheelchair and use a walker to get to the bathroom. My smile isn't quite the same anymore due to my weakened facial muscles, and my voice has gotten much quieter. But besides these physical changes, I've also noticed that I'm growing and seeing things from different perspectives. It's like I'm becoming a whole new person.   

MND is not linear in its progression; it varies for each individual. But learning to adapt to the environment is the best way to manage the condition.  It's not always possible to keep things organized, so I try to be creative to meet my needs. Here are some of the key areas affected and how I manage them: 

 

(Avid hiker/March 2020)

Embracing Adaptation 

 

Adapting to new realities has been essential. From home modification to using assistive technologies, these changes have empowered me to maintain some independence in activities of daily living.  

 

    Motor Function and Mobility.  I first noticed that I was having trouble with my fine motor skills and hand dexterity, like turning off switches and applying makeup. These were everyday tasks that seemed easy and ordinary until I couldn't do them anymore. The transition from walking without any issues to needing a cane, then a walker, and finally a motorized wheelchair was really tough. I tried to stay positive and plan ahead, so I got a powered wheelchair long before I actually needed it. As my husband always says, "It's better to have it and not need it than to need it and not have it." My muscles kept getting weaker and stiffer, which made it harder for me to move around. I've come to rely on my mobility aids, and while at first, I felt like I was losing my independence, now they actually give me the freedom to move around.

Speech and Communication. It all began with a persistent cough that lasted for several months. Soon after, I noticed changes in my speech - it became harder to understand and my voice was losing clarity and volume. This made communication with my family in the Philippines challenging, as my eye gaze computer communication device only have English as an option. I have to spell the words phonetically to mimic the sound of my native language, and although it's a bit tedious, it gets the job done. I found other assistive communication tools such as low-tech communication boards and text-to-speech apps to be very helpful as well in expressing my needs. I managed to record my voice, albeit a bit late, but thanks to advancements in Artificial Intelligence, my voice was synthesized even from minimal recordings. Losing my ability to speak also meant losing a part of my personality. The jokes, banter, and girly talks with friends are now gone. I used to be the one who broke the ice and diffused tension in conversations. Thankfully, my husband has adapted well to my nonverbal cues which makes it easy if I need something. It's overwhelming to accept this change. As my speech became harder to understand, my communication with people in my circle has also lessened (but that's a story for another day). 

Respiratory Function. The changes in my respiratory system are becoming more evident in my daily life, coughing have become weak and clearing secretions is tricky. The breathing exercises that the physiotherapist taught me have been quite beneficial. Despite the fact that my lung function has decreased, I don’t feel the need for respiratory support like non-invasive ventilation. I hope it stays like this. 

Swallowing and Nutrition. Dealing with eating and drinking difficulties has been challenging. I made adjustments to my diet, such as opting for softer foods and thickened liquids, to ensure safer swallowing. Additionally, I sought advice from a nutritionist and incorporated nutritional supplements into my diet, which helped me regain the lost weight. Initially, I was hesitant about getting a feeding tube because I was not emotionally ready yet. I eventually realized that it could only enhance my quality of life. Now, I take my time to savor the food and drinks I enjoy, and I'm pleased with the positive changes I've made. 

General Health and Well-being. Fatigue is a daily part of living with MND, but I've found ways to manage it. It's all about tuning in to what my body needs. I make sure to give myself time for small but enjoyable activities, like cruising around the riverside in my powered wheelchair, soaking up the sun, or sneaking in a quick nap. To keep my mind active and involved, I picked up video editing, and now I'm  giving writing a shot with my eye gaze computer! 

 

Finding Joy 

 

Living with MND can be repetitive, mundane, and lonely. I have learned to appreciate the simple pleasures in life and focus on what I can still do. Before my diagnosis, I enjoyed going to the gym and hiking, but now I have had to be creative in finding new activities. Fortunately, here in New Zealand, we have nature parks that are wheelchair accessible, allowing me to still enjoy quiet moments in nature and appreciate life despite the sad situation. Finding joy in simple things, like watching reality TV shows or listening to favorite music, helps to keep my mind off worries. Time is precious, and every minute spent worrying is a waste. I hope you can find your own way to find joy and peace.  

 

(June 2024)

Support Network 

 

Family, friends, and healthcare team are my pillars of support. Additionally, we have found support from online support groups. In our city, there is a monthly MND Support Group that we find very helpful for connecting with others who are going through a similar journey. It's great to be able to share information, especially with those who are newly diagnosed. It can be overwhelming to receive sad news and navigate the available support, so it's much easier to hear about the help available directly from someone who has experienced it. Another unexpected support network for us is the Yorkie Group. We have two Yorkie dogs that we got when I was diagnosed, and they look after them when we go away for a holiday. Every bit of help, no matter how small, is appreciated, and we are grateful for the kindness of people. Don't be afraid to reach out for support.  

 

 Passions and Goals 

 

Continuing to pursue passions and setting achievable goals gives me a sense of purpose. We love to travel and try to go for holidays as much as we can. Flying, we initially thought, was a challenge, but the airport staff are very friendly and helpful. Boarding and disembarking off the plane has been smooth and uneventful. The only incident we encountered was when my powered wheelchair did not turn up at the gate, but the ground staff were quick to solve the dilemma and found it within the hour. I continue to focus on what I still can do, whether it's finishing an audiobook or watching another episode of your favorite TV show. Every milestone, no matter how small, is something to be celebrated. I'm determined not to give MND any more space than necessary. I make sure to enjoy time with my family and friends and do whatever brings me joy! 

Living fully with MND reminded me that life’s true essence isn’t defined by our physical abilities but by our spirit and resilience. Each day presents its own set of challenges, but it also offers countless opportunities for joy, connection, and growth. 

To anyone facing similar battles, know that you are not alone and try to live each day with courage and love. Our time is precious, and there is still so much beauty to be found and created. 

Stay hopeful, stay strong, and live fully. 

Terminally Well,

Ally