MND Association reaching out to patients

KUCHING: The Malaysia Motor Neuron Disease (MND) Association is doing its bit to reach out to patients diagnosed with MND in the hope of creating awareness of the rare condition among the community.

MND, also known as Amyotrophic Lateral Sclerosis (ALS), is a disease that affects the nerves in the brain and spinal cord that tell your muscles what to do.

With MND, messages from these nerves gradually stop reaching the muscles, leading them to weaken, stiffen and waste.

According to Malaysia MND Association chairman Benny Ng, many patients with MND and their families are at a loss given the impact resulting from the rare condition.

“These patients are sometimes disabled, they are not able to move and talk but they are very much conscious. Not all neurologists know how to attend to such patients.

“This is where Malaysia MND Society comes in to share knowledge with them. We can give them the social support by providing training,” he said when met at the Sarawak General Hospital (SGH) here yesterday.

Ng said the Society aimed at helping patients with MND to lead a comfortable life.

He said there is yet a cure for MND but this does not mean that patients with MND should suffer.

“No doubt there is no cure for MND, but we can reach out to these patients and help them live a comfortable life, so that they do not suffer so much.”

He noted that most patients with MND, especially those discharged from the hospital, became a challenge to their families because some of them had lost mobility.

To help make the life of these patients more comfortable, he said the Society had come across a device called eye-tracker for immobile patients to send a message.

“When patients with MND become paralysed, the only thing that they can move is their eyes. So this eye-tracker is an equipment that can be connected to a laptop to enable these patients to key in the feedback,” he added.

During the interview, Ng requested a trainer of his to demonstrate how the eye-tracker worked.

The device is a slightly modified infrared sensor technology originally used for gaming purposes. After calibration, it detects where the eyes are focusing on. Ng said the original eye-tracker costs about S$7,000 (approximately RM20,720) but the modified device is available at S$176 (approximately RM520).

“So we are here today to train the doctors and staff of SGH how to use the eye-tracker,” he said, adding that this was the second time he was in the city for a seminar to create public awareness of MND.

The one-day seminar which took place at Dewan Pesona of SGH was attended by 51 hospital doctors and staffers.

Also present was University Malaya Medical Centre (UMMC) consultant palliative physician Dr Loh Ee Chin.

The first similar seminar was held at Universiti Malaysia Sarawak (Unimas) Campus in Kota Samarahan last October.

Malaysia MND Society was registered with the Registrar of Societies (ROS) in 2014 and has been active since 2015.

Ng said the Society had initiated similar awareness efforts in Penang and Alor Setar before coming to Sarawak, adding that they would keep this up by targeting Johor Bahru, Kota Bahru and Kota Kinabalu next.

In Sarawak, he said the Society hoped to see a group of volunteers who could come forward to set up a branch here.

“There is a need to train volunteers as well as nurse coordinators to take care of patients with MND. Sometimes, patients with MND cannot swallow and can get choked by their own saliva.

“We want to reach out to them including their families so that these patients can be looked after well so that they don’t suffer that much and can carry on their life until the last day,” he said.

Ng said the Society is also hoping that the corporate sector could chip in by sponsoring the salary of its nurse coordinators.

He explained that neurologists might not be available to attend the needs of patients with MND, hence nurse coordinators can play their role to bridge the gap.

He pointed out that the Society also offered moral support for both the patients and their families.

“We have volunteers who provide counselling and assistance. We want them to get as much help as possible so that they don’t go into depression. Corporates or individuals who wish to donate to the Society to enable us to reach out to patients with MND can email or call us,” he said.

Malaysia MND Society can be reached at 017-883 8839 or 012-201 3798 or email: mndmalaysia@gmail.com. Browse www.mnd.org.my or www.facebook.com/groups/mndmalaysia for more information.

This article was originally published on The Borneo Post.