Five Years Later
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| (6 months after diagnosis/Boxing Day of 2021/West Coast NZ) |
Five years ago today, on 30 June 2021, I received the most heartbreaking diagnosis of my life: Motor Neurone Disease (ALS). I was terrified then of what I would lose and whether I would still recognise myself in the years to come.
Now, I am much more adjusted to my condition. I have learned to accept help from people who genuinely want to contribute. Before, I would never let anyone feed me except my husband. If friends want to help me during a meal, I let them. It gives my husband the chance to enjoy his own food and be present in the conversation instead of constantly being "on duty."
Over the past five years, here are some of my physical changes and how we adapted to the ever-changing progression of ALS.
Motor Function and Mobility
A couple of years ago, I could still hold my phone and use a computer mouse. My hand dexterity is almost gone, although I still have a surprising amount of grip in my right hand, which is ironic because that was where my symptoms first started.
A year ago, I was still using my walker and slowly making my way to the toilet with assistance. These days, I no longer have the confidence to do that. But we adapted. I now use a transfer chair and take a few supported steps when I can. I also use a hoist, but I still try to use my leg muscles whenever possible.
I don't mind my power wheelchair anymore. It still allows me to wander around shops, enjoy the outdoors, and go for walks with my two little Yorkies. Five years ago, I thought a wheelchair would represent the end of my independence. I couldn't have been more wrong. It became another way of living.
Speech and Communication
Looking back, my speech problems probably started about two years after my first symptoms appeared, eventually leading to my diagnosis. My speech had deteriorated so much that even my husband struggled to understand me.
Before my voice disappeared completely, I learned to use my eye gaze computer. This entire blog has been written with my eyes. Technology has allowed me to keep participating in life. I can still joke with friends, share my opinions, and yes, still argue with my husband, which is obviously the most important thing. Just kidding.
Respiratory Function
I am grateful that I can still cough, even if it is weaker than before. It is still good enough to help clear my secretions. I produce more saliva these days, especially at night, but it is not something that worries me right now. I hope it stays this way for a very long time.
Living with ALS teaches you to appreciate stability, even in the smallest things.
Swallowing and Nutrition
I can still enjoy rice, noodles, fish, chicken, and thin fluids through my Giraffe straw.
I was initially resistant to having a PEG tube inserted because I was afraid. I thought getting one meant surrendering and giving the illness more power over me.
Now, I advocate for getting one early if possible. My PEG has helped me maintain my hydration and nutrition and has taken away so much unnecessary stress.
The Things That Keep Me Going
When people ask me, "What keeps you going?"
The honest answer is my husband's willingness to help me continue achieving my goals, no matter how big or small they are. I know that without him, my world would look very different.
I still wake up with things I want to do. Tell my story, connecting with others in the MND community, and being a wife give my days purpose. They remind me that I still have something to contribute. Despite everything ALS has taken away, there is still joy to be found. Because life does not have to be perfect to be meaningful.
Five Years Later
There are still difficult days and things I grieve. I miss my old voice. I miss my old body and the spontaneity that illness has taken away.
Five years ago, I thought I was counting down the life I had left. But with the help of the people around me, people who reminded me that it was still okay to have dreams and goals, I slowly found my way out of that dark place.
And I learned something important:
I am still here and there is still life after the diagnosis.
.JPEG) |
| (First migraine of the year lol/June 2026) |
Your kindness means more than you know.
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