Motor Neurone Disease

21 June is ALS day. Here is a special post to commemorate this occasion.

What is Amyotrophic Lateral Sclerosis?

Amyotrophic Lateral Sclerosis (ALS) is a form of motor neurone disease (MMD). ALS eventually results in the loss of control of all voluntary muscles. When the ability to control the muscles is lost, the muscles become wasted and stiff.

At the end-stage of the disease, people with ALS are often bedbound. They may not be able to move but their ability to think remains intact. At present, there is no known cure for ALS. Upon diagnosis, the average life expectancy is 2-5 years.

Beyond the Diagnosis (eBook)

I first got in touch with Lin Kah through Tess who is an amazing social worker and wonder woman. Lin Kah is a gentleman with late-stage ALS who communicates via text messages formed using eye gaze technology because he no longer has the strength to speak.

I asked him if he had any unfulfilled wishes. He told me that he wished that there could be a local collection of inspirational stories about the lives of people with motor neurone diseases (MND).

(Prior to 2021, the most established support system that existed for people with MND in Singapore was the National Neuroscience Institute (NNI) support group. On 27 April 2021, the Motor Neurone Disease Association (MNDa) Singapore - set up by Lin Kah and his friends, became an official organisation.)

I was touched by his story and his drive to create a more comprehensive support system for people with MND. I felt inspired to help in whatever way I could. So I told him, "let me make your wish come true!"

After seven months, seven interviews and a ton of hours spent on writing and design, the book is finally completed!!! It is currently available in digital format but will soon be available in hardcopy.

Click the image below to flip through the pages of the book! (It will open in a separate tab):

Click me!

The grit and tenacity that these people have shown in the face of a frightening condition have shown me that a disease does not define a person. Instead, it reveals the kind of person that they were all along.

As Riz says (another amazing gentleman who also has ALS) says:

"An illness does not define who you are. Even if the illness is rare, such as motor neurone disease, do not let yourself be constrained by the label, because it is merely a label.

A fighter exists within each and every one of us. As long as you try, you will be able to do wonders, inspire others and make a difference in the face of adversity.

Contribute whatever knowledge and experience you have and leave a legacy that is uniquely you."

How can you support people living in Singapore with motor neurone diseases?

The Motor Neurone Disease Association (MNDa) Singapore is a newly set up organisation that consists of a group of dedicated and passionate MND patients, caregivers and volunteers.

The MNDa's mission is to enable people with MND to live with dignity and have the best possible quality of life. They facilitate the provision of care and support by sharing knowledge, experience and resources through their close-knit community. They aim to promote hope and positivity by garnering support for their cause.

They have opened a membership sign-up link which you can access at https://forms.gle/iahsrXBgNesFPwRBA.

Here are the membership details:

1. Membership fees

• $12 yearly (due every 1st of January)

• This fee is waived for every MND patient

• This fee is waived for the year 2021

2. Entrance Fees

• $20 upon joining.

• This fee is waived for every patient and his/her primary caregiver, and associate members (students)

• For those who join in 2021, the membership fee will be collected on 1st January 2022.

Find out more about the MNDa and their work at the following links:

Main website: https://mnda.org.sg

Facebook: https://facebook.com/MNDa-Singapore-106165364883405

Instagram: https://instagram.com/mnda_sg