Cold Head, Warm Hearts

With the Ice Bucket Challenge still headlining the news and celebrities being either praised or reviled for their participation or otherwise, the very reason for this dumping of chilly water over the head is often lost in the hype. Most people know that the stunt was conceived to raise awareness of and funds for research into amyotrophic lateral sclerosis (ALS) but have little idea what this neurogenerative disease is or the consequences it inflicts on its sufferers.

Cold water challenges are nothing new in American charity drives though this time round, former Boston College baseball player Pete Frates, himself a victim of ALS, can be blamed for its going viral. He likens the effect of the head being doused in iced water to one of the symptoms of this neuron-killing disease. 

Among the big – and richest – names to have joined in so far are Microsoft’s Bill Gates and Facebook founder Mark Zuckerberg. Here in Thailand where soakings are commonplace as part of the Songkran rituals, the ice is also being replaced with holy water.

But just like in other countries, there is a need here too to raise awareness about ALS. For that reason, the Medical Council of Thailand has pushed the Prasat Neurological Institute – the country’s only neurological specialist hospital – to open a special ALS fund before the fad dies out. 

The fund, which was officially launched last Wednesday, aims to supplement the institute’s existing foundation, which helps underprivileged patients with medical costs, by raising sufficient money to buy ventilation machines for at least 10 patients who are desperately in need of them.

“As ALS affects the muscles in the neck and torso, patients eventually lose the ability to speak, swallow and breathe so feeding tubes and ventilators are vital to patients with advanced-stage ALS,” says Dr Tasanee Tanirittisak, head of the institute’s neurology department.

Each machine costs between Bt200,000 and Bt300,000 so Tasanee is hoping for lots of water crowning, especially as such other appliances as patient beds and wheelchairs are in short supply.

Tasanee says that most ALS patients have to be cared for at home as government hospitals are already overcrowded. The correct appliances are thus much needed by both the patients and their families particularly when the disease has progressed to the point when the sufferer is paralysed.

While the disease tends to affect more Caucasians than Asians and is rare among Thais, Tasanee says the institute currently has about 100 ALS patients under its care.

The cause of ALS is unknown but it occurs when the neurons in the motor cortex of the brain, the brain stem, and the spinal cord degenerate and die. Motor neurons reach from the brain to the muscles across the body and deliver the impulse to command voluntary movement. When the cells degenerate, the muscle can no longer receive the impulse and so the muscles weaken and die. 

Initial signs and symptoms include muscle weakness and a diminished ability to move the arms or legs but most people dismiss these signs, putting them down to being tired, exercising too much or too little or a herniated disc.

“Most of the time they don’t feel pain so they don’t want to go to hospital for a check-up. The positive side of the Bucket Challenge is that it brings the disease into the spotlight and educates people to be more watchful of symptoms both in themselves and in others,” says the doctor.

ALS most commonly develops in people between the ages of 40 and 70 though it can strike people in their 20s and 30s. The progression rate of ALS varies but the average life expectancy from the time of diagnosis is two to five years with some cases going on to survive 10 years or more. 

“In some people, the disease progresses so slowly or stops entirely that they live with nothing except a little weakness in their limbs,” Tasanee says. 

“The trouble is that ALS patients suffer a great deal because they are every bit as conscious as a non-afflicted person but they can’t control their bodies. When they can no longer talk, the only way they can communicate is by blinking. They need a great deal of care.”

The rate at which disease spreads throughout the body can be delayed to a degree. The only FDA-approved drug, Riluzole, is used for ALS patients with problems swallowing and breathing. 

“It’s not a cure but is does slow down the stage when the patient will need a feeding tube and ventilator by a few months,” Tasanee says.

Research on ALS and clinical trials for new drugs and therapies continue to be conducted in hopes of finding a cure.

The best-known ALS sufferer is British physicist, Stephen Hawking. Thailand’s first Olympics medallist Phayao Pooltharat died in 2006 after four years of struggling with ALS and the mother of singer actress Nat Myria Benedetti also suffers from the disease.

And many Thais wrongly associate ALS with multiple scelrosis (MS) or myasthenia gravis (MG).

MS also attacks the neurons in the brain and spine and causes muscle weakness. However, it is an inflammatory disease in which the insulating covers of nerve cells are damaged and the immune system mistakenly attacks normal, healthy parts of the body leading to the destruction of myelin – a protective sheath that coats the outside of the nerves.

“When the myelin is destroyed, it is like an electric wire that no longer has an insulated coat and causes s short circuit inside the body. Patients with MS are in more pain than those with ALS,” says Tasanee.

MG is also an autoimmune neuromuscular disease that leads to fluctuating muscle weakness and fatigue. Here, the muscle weakness is caused by circulating antibodies that block receptors at the neuromuscular junction. It is the mildest of the three diseases and can be cured. The most prominent Thai celebrity to suffer from MG is actress Pakjeera Wannasute. 

 CHILL AND GIVE

 n Take part in the Ice Bucket of Holy Water Challenge and donate directly to the Thai ALS Fund through Siam Commercial Bank account 026-430-952-1; Bangkok Bank account 909-712-6122; or support the Prasat Neurological Institute Foundation through Krungthai Bank account 020-1-33312-0

n For more information, call (02) 354 6118