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Saturday, May 16, 2015

UMMC doctors push for more support for patients with motor neuron disease

From left: Consultant neurologist Dr Nortina Shahrizaila, consultant for rehabilitation medicine Dr Lydia Abdul Latif and consultant palliative care physician Dr Loh Ee Chin, all from Universiti Malaya Medical Centre, who together have initiated measures for more specialised care and treatment for patients suffering from motor neuron disease in Malaysia. – The Malaysian Insider pic by Jennifer Gomez, May 16, 2015.From left: Consultant neurologist Dr Nortina Shahrizaila, consultant for rehabilitation medicine Dr Lydia Abdul Latif and consultant palliative care physician Dr Loh Ee Chin, all from Universiti Malaya Medical Centre, who together have initiated measures for more specialised care and treatment for patients suffering from motor neuron disease in Malaysia. – The Malaysian Insider pic by Jennifer Gomez, May 16, 2015.When the Ice Bucket Challenge went viral on social media last year to promote awareness of the disease amyotrophic laterals sclerosis (ALS), it received media attention around the world, including Malaysia, where prominent personalities and regular folk had a bucket of ice water poured on their heads and then nominated others to do the same.
But outside of this social media campaign, there is little publicity about the condition, also known as motor neuron disease (MND), for which there is no cure.
ALS – sometimes called Lou Gehrig's disease, after a famous US baseball player in the 1920s and 1930s with the New York Yankees – also took the life of Malaysian football legend Mokhtar Dahari in 1991 after a three-year battle with the disease. The best-known international personality afflicted with it is 73-year-old physicist Stephen Hawking.
Medical experts say most people who have ALS are diagnosed after the age of 50 and die within five years of their diagnosis. However, Hawking was diagnosed at age 21 and has overcome the odds to survive for another 50 years at least.
Malaysia has an estimated 2,000 people living with MND at any one time. But there is no database of local MND sufferers. Neither is there a referral medical centre where patients and their loved ones can seek information on MND as well as appropriate care and counselling.
One Malaysian patient, Wilson Song, remembers explaining it to his daughter when she came home from school one day last year and told him her teacher had told them about the ice bucket challenge and ALS.
"So when she brought it up, I told her that's what I have and showed her a picture of Stephen Hawking and told her that is how I will end up.
"My two younger daughters only know that papa has pain in the legs," he said.
Song, 41, who was diagnosed with MND in November 2013, is unable to walk without aid as the muscles in his legs have weakened.
MND is a disease where the motor nerves start to degenerate. The muscles that typically gets affected are those in the hands, arms, feet and legs.
Muscles of the neck, throat and breathing are also commonly affected and result in patients becoming weak and having difficulty lifting their arms, walking, swallowing and breathing.
Song told The Malaysian Insider that he wishes that he was wrongly diagnosed.
Still, he tries not to think about when or how the end will come, and wants to continue living his life as best as he possibly can.
Which is why he has planned for a trip to the United States soon. "I want to see New York," he said simply.
Although there is currently no cure for MND, there are care approaches and treatment that may slow its progression and improve survival rates.
This is what a team of three doctors – consultant neurologist Associate Professor Dr Nortina Shahrizaila, consultant for rehabilitation medicine Associate Professor Dr Lydia Abdul Latif and consultant palliative care physician Dr Loh Ee Chin – want to establish at Universiti Malaya Medical Centre (UMMC).
Prolonging survival
Dr Lydia said in South Korea, the government provides free medical care and equipment for MND patients.
The same is believed to be the case in Japan, Taiwan, United Kingdom and other developed countries.
"The reason South Korea provides free medical care for MND patients is because it is a terminal condition, and there are not many of them, so their thinking is, why not look after them till the end?” Dr Lydia said.
Among the equipment that has been proven to prolong survival for MND sufferers are non-invasive ventilators, which supports the breathing which would tend to become weaker.
The machines ensure that the patient gets enough oxygen and gets rid of the carbon dioxide.
But in Malaysia, the NIV machine, which costs between RM30,000 and RM70,000, is not on the government hospital supply list for patients.
Government servants can request their respective agencies and departments to foot the cost of the machine, but it is not necessarily approved, Dr Lydia said.
She said that the Health Ministry should follow the example of South Korea, which provides these machines to patients for free.
"The machines will be given back to the government because the patients will pass away and these machines can then be given to other patients.
"And we don't have that many MND patients, so why not do this for them?" she  said.
Improving the quality of life
Dr Loh said that MND patients in Malaysia do not get much attention because their numbers are small and the fact that it is a terminal illness.
But this was precisely why they should be taken care of as best as possible, given that there was no cure, she said.
"It is their right to want to live the rest of their surviving years as best as they possibly can and this is where we are able to introduce to them measures to prolong survival, such as advising them on breathing and nutrition.”
Realising that patients and caregivers need information and support on how to manage the disease, for example, in dealing with their breathing, walking and eating difficulties, the three doctors decided three years ago to work together to create a multi-disciplinary approach in the care of MND patients.
“We advise them on what they can do. For instance, we tell them that if they have difficulty swallowing, they can insert in a gastrostomy tube into the stomach so that they don't have to suffer the pain of swallowing and still get  proper nutrition into the body," said Dr Loh.
She said that many MND patients become depressed about losing control of their lives, and this is where palliative care consultants explain to them what to anticipate as their condition changes so that they are better prepared.
As for rehab, Dr Lydia said that they were able to help improve functional activity to maintain quality of life as MND patients will eventually suffer from tightness of muscles, limited range of motion and difficulty in walking.
She added that the caregiver would also need to be trained on proper techniques when assisting a loved one with MND to ensure they maintain their functions as best as possible.
Dr Nortina said that when they first started working together in 2011 on the multi-disciplinary approach, they were doing it by calling up each other and agreeing to see patients in conference rooms together, so that the patients' needs can be addressed at one go.
More recently, they were given dedicated clinic time and space to see patiets together, which is the approach practised in many developed countries in the world.
Need for a dedicated MND clinic
The three are hoping that their efforts towards this type of multi-disciplinary MND clinic will be recognised by the Ministry of Health as a centre of referral for MND patients.
Dr Nortina said based on global statistics and Malaysia’s population, there were probably about 2,000 people living with MND at any one time in the country, but UMMC was only seeing 60 patients.
The teaching hospital is also the only one with the full range of expertise, including physiotherapists, speech and language therapists and psychologists, to deal with such patients, she said, adding that often, MND patients may not be correctly diagnosed by other smaller hospitals which were not familiar with the disease.
She said that while now the hospital allows them to have clinic time and space to see MND patients, people are still unaware that UMMC has such a team for MND patients.
"Ideally, we want to be known as an MND centre and we need more resources, including a nurse coordinator, this way we can keep track of patients from all over the country.
"And we can give them assistance through the phone or via our colleagues in the different states who may not have the resources or time to spend managing MND patients.
”In the UK, every tertiary and neurology hospital has this set up. MND patients go to these clinics where there are specialised people in this field to deal with them," she said.
Dr Loh says in the long run, the Health Ministry stands to gain from supporting a full fledged MND centre in UMMC, adding that as they work together to guide and educate patients and caregivers, patients would not often be warded to hospitals as they would be able to avoid complications that arise from the disease.
"If we can offer better community support for MND patients, then hospitals will have more beds for acute patients of other illnesses that need immediate treatment such as dengue and stroke," she said.
They hope the government will direct funding for the establishment of a dedicated MND clinic in UMMC.
"We are happy to be the centre as the government hospitals would naturally be finding it tough to manage this group of patients given the other common chronic diseases they have to focus on,” Dr Nortina.
"We are here to raise the awareness and guide our colleagues in other states and districts. There is no need for the whole nation to manage MND, resources can be pooled," said Dr Lydia.
The three doctors have also mooted the formation of an MND society among patients and caregivers, in an effort to raise funds to buy equipment which are not on the government hospital supply list, such as the ventilators.
There will also be a public forum on MND at Dewan Sekapur Sirih, Level 1, Trauma and Emergency Building, UMMC from 9.30am on May 23.
- TMI

4 comments:

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  2. My husband was diagnosed with MND ALS (amyotrophic lateral sclerosis) when he was 69 years old 6 years ago. The Rilutek (riluzole) did very little to help him. The medical team did even less. His decline was rapid and devastating. The psychological support from the medical center was non-existent and if it were not for totalcureherbsfoundation .c om and the sensitive cure of their herbal formula he would have been not been alive today,there was significant improvement in the first 4 weeks of usage that gave us hope that he will be alive,His doctor put him on riluzole, letting us know there was no cure until we gave try on total cure herbal supplement that cure him totally from this disease after 15 weeks of his usage. There is nothing positive about cure ALS condition except for their herbal treatment .

    ReplyDelete
  3. My husband was diagnosed with MND ALS (amyotrophic lateral sclerosis) when he was 69 years old 6 years ago. The Rilutek (riluzole) did very little to help him. The medical team did even less. His decline was rapid and devastating. The psychological support from the medical center was non-existent and if it were not for totalcureherbsfoundation .c om and the sensitive cure of their herbal formula he would have been not been alive today,there was significant improvement in the first 4 weeks of usage that gave us hope that he will be alive,His doctor put him on riluzole, letting us know there was no cure until we gave try on total cure herbal supplement that cure him totally from this disease after 15 weeks of his usage. There is nothing positive about cure ALS condition except for their herbal treatment .

    ReplyDelete
  4. My husband was diagnosed with MND ALS (amyotrophic lateral sclerosis) when he was 69 years old 6 years ago. The Rilutek (riluzole) did very little to help him. The medical team did even less. His decline was rapid and devastating. The psychological support from the medical center was non-existent and if it were not for totalcureherbsfoundation .c om and the sensitive cure of their herbal formula he would have been not been alive today,there was significant improvement in the first 4 weeks of usage that gave us hope that he will be alive,His doctor put him on riluzole, letting us know there was no cure until we gave try on total cure herbal supplement that cure him totally from this disease after 15 weeks of his usage. There is nothing positive about cure ALS condition except for their herbal treatment .

    ReplyDelete

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