[News Today] ALS patients desperate for care support

[LEAD]
A disease that leaves the mind and senses untouched, while the body becomes completely paralyzed. That's why Lou Gehrig's disease is often called the cruelest in the world. Marking Global ALS Awareness Day, patients and their families took to the streets, demanding stronger support for caregiving.

[REPORT]
This woman in her 50s was diagnosed with Lou Gehrig's disease 16 years ago.

As she needs to be looked after 24/7, a caregiver is at her side during the day while her husband supports her at night after returning from work.

Oh Hae-yong / Husband of Lou Gehrig's disease patient
If you have this kind of patient, life can't be normal. Every day is painful.

Her husband is also a certified caregiver but cannot receive government pay if he looks after his own wife.

This is because care provided among family members is not recognized in this manner.

With this issue raising problems, the government since last November has been providing an hourly pay of about 5,000 won, or 3 dollars 60 cents, for interfamily care on a temporary basis only allowed for patients of serious ailments.

But families complain the system is still unrealistic.

If a family receives pay for looking after one of its own, they then cannot employ an outside caregiver.

Oh Hae-yong / Husband of Lou Gehrig's disease patient
My wife needs my care until she dies but I can't be here 24 hours a day. So I need professional support.

Families are demanding that pay for interfamily care and the use of outside professionals be allowed simultaneously.

Sung Jung-joon / Chair, Korean ALS Association
Current law demands we choose between family support or outside care. It will be so much better if we can do both and cater to specific patient needs.

The health ministry says that further social discussions are necessary in order to expand the interfamily care scheme and that a decision will be made after a trial operation.