Terminal disease can’t stop Tan Shu Hua from smiling

Free Malaysia Today

Diagnosed with motor neurone disease (MND) in  2014, Tan has defied the odds, living beyond the typical 5-year life expectancy. To support or learn more, visit mndmalaysia.org.   Written & presented by: Theevya Ragu Shot by: Afizi Ismail Edited by: Andrea Edmonds  Read More:   Free Malaysia Today is an independent, bi-lingual news portal with a focus on Malaysian current affairs.    Subscribe to our channel - http://bit.ly/2Qo08ry   ------------------------------------------------------------------------------------------------------------------------------------------------------ Check us out at https://www.freemalaysiatoday.com Follow FMT on Facebook: https://bit.ly/49JJoo5 Follow FMT on Dailymotion: https://bit.ly/2WGITHM Follow FMT on X: https://bit.ly/48zARSW  Follow FMT on Instagram: https://bit.ly/48Cq76h Follow FMT on TikTok : https://bit.ly/3uKuQFp Follow FMT Berita on TikTok: https://bit.ly/48vpnQG  Follow FMT Telegram - https://bit.ly/42VyzMX Follow FMT LinkedIn - https://bit.ly/42YytEb Follow FMT Lifestyle on Instagram: https://bit.ly/42WrsUj Follow FMT on WhatsApp: https://bit.ly/49GMbxW  ------------------------------------------------------------------------------------------------------------------------------------------------------ Download FMT News App: Google Play – http://bit.ly/2YSuV46 App Store – https://apple.co/2HNH7gZ Huawei AppGallery - https://bit.ly/2D2OpNP  #FMTLifestyle #MotorNeuronDisease #TanShuHua

Transcript

00:00We are totally helpless.

00:02Like for me, for example,

00:04what if there's a mosquito

00:06land on my hand?

00:08I need people to help me too.

00:10You know, just a simple, simple thing.

00:14The last time the world really paid attention

00:16to motor neuron disease

00:18was likely in 2014

00:20when the Ice Bucket Challenge

00:22swept across social media,

00:24raising global awareness for amyotrophic

00:26lateral sclerosis,

00:28or ALS.

00:30That was the same year

00:32and the same disease that changed

00:34Tan Shu Hua's life.

00:36Then aged 32

00:38with two toddlers in her care,

00:40it started as a cramp

00:42in her right leg.

00:44Then slowly, her body

00:46began to give way.

00:48There's one night I fell down.

00:502014

00:52on December, I fell down

00:54that night and

00:56I told my husband

00:58I fell down just like

01:00there's...

01:02out of nowhere, I just fell down.

01:04You know, with no reason.

01:06And I showed my husband my leg

01:08and said, how come your

01:10right limb and your left limb like

01:12got big difference?

01:14The right and left type.

01:15One is big, one is small.

01:16Very big difference.

01:18And the next day I went to

01:20my family clinic.

01:22Then the doctor said,

01:24there's something wrong.

01:26I still remember when the doctor

01:28broke,

01:30she told me,

01:34I'm so sorry you got this MND outside.

01:38Is this a joke?

01:40You must be kidding me.

01:42MND is a rare and terminal neurodegenerative

01:46disorder that affects about

01:482 in every 100,000 people,

01:50usually over age 50.

01:52It causes the progressive loss of both upper

01:56and lower motor neurons,

01:58slowly deteriorating the body's ability

02:00to perform voluntary movements.

02:02Life expectancy after diagnosis

02:04is typically between 2 and 5 years.

02:08Tan, however, is the rare patient

02:10who has lived with the condition

02:12for over a decade.

02:14While she can no longer walk

02:16or move her arms,

02:18her ability to eat and speak remains.

02:26Tan now lives with a qualified nurse

02:28by her side, assisting her with every aspect of

02:30her daily life,

02:34including 2 massage therapy sessions each day.

02:38Through it all,

02:40her husband, Sam Ho,

02:42remains a pillar of support.

02:48I don't say he's like,

02:50reposition me every night.

02:52Because I totally can't

02:54turn myself, you know.

02:56Every night, sure he will.

02:58wake up to turn, reposition me.

03:00No matter how tired he is.

03:06Tan's two children,

03:08now teenagers,

03:09are fully aware

03:10that their mother may leave this world

03:12sooner than most.

03:16Mummy, you give me the love.

03:18But just only from the mummy on wheelchair.

03:20This is what he said.

03:22Yeah.

03:24And my girl, she said,

03:26Mum,

03:28when you pass away,

03:30because I told her,

03:32when I pass away,

03:34I want to

03:36throw all my ashes to the sea.

03:38Then she said, Mum,

03:40can you throw all the ashes to the sea?

03:42I want to keep a little bit,

03:44make it as a necklace.

03:46Yeah.

03:48So then,

03:49they already got this concept,

03:50but they still like,

03:51they're treated as a normal mother.

03:53They never said like,

03:55but of course,

03:56when they are,

03:57she's like,

03:58Mummy, when can you recover?

03:59Can I run together with you?

04:01You know,

04:02can we swim together?

04:03They said,

04:04well, I cannot run together,

04:06but you can push my wheelchair.

04:08She may be battling a terminal illness,

04:12but her joy and smile remain untouched.

04:17I think we got the passion to live life.

04:20This passion is very important.

04:22Yeah.

04:23It's like,

04:24even though I go to do my grocery shopping,

04:26I feel very happy.

04:27I mean,

04:28I feel happy.

04:29I mean,

04:30it's enough for me.

04:31And yeah,

04:32because you're still able like,

04:33you're still able to see this world.

04:35You're still able to

04:37see the sun,

04:39feel the rain,

04:40you know.

04:41Yeah,

04:42after I got this disease,

04:44I feel myself like,

04:45you are more appreciated,

04:46like,

04:47even though it's just a small thing.

04:50During the pandemic,

04:51Tan created the OK I Love You Facebook page,

04:54now with over 10,000 followers,

04:56to share about her journey with MND.

05:01She has also been appointed as an ambassador

05:04for the non-profit organization,

05:06MND Malaysia.

05:07I think maybe,

05:09for myself,

05:11maybe God chose me.

05:13Of course,

05:14there's a reason.

05:15Yeah.

05:16So,

05:17why don't you accept it?

05:18Instead,

05:19of course I had it,

05:20but,

05:21I loved it.

05:22You know,

05:23because it gives me like,

05:24different life compared to other people's.

05:26To offer your support,

05:31or to learn more,

05:33visit MNDMalaysia.org.

05:39Tibia Ragu FMT.

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