Canadian woman with ALS protests lack of home care with hunger strike

From the Sudbury Star in Canada. Social work students will support Mina Mettinen-Kekalainen's quest for home care by staging a protest Jan. 23.

A desperately ill Sudbury woman heralded as a champion -- athletically and of human rights -- is entering the sixth day of a fast to end her suffering and her life.

Minna Mettinen- Kekalainen, 42, has fought for years to keep amyotrophic lateral sclerosis (ALS) from preventing her from doing the things she loves -- skydiving, rowing and raising two children.

But she no longer has it in her to fight a provincial organization she says is refusing to help her when she is at her weakest.

Mettinen-Kekalainen is alone, bedridden or confined to a wheelchair, unable to change her adult diapers or bathe herself, and in constant pain.

Her only source of nutrition is the feeding tube in her stomach, but she is refusing to let friends administer the four cans of supplement she should be receiving daily.

Once the subject of newspaper articles about her indomitable spirit in coping with ALS and a role model for people raising autistic children, Mettinen-Kekalainen (who also suffers from Asperger Syndrome, an autism spectrum disorder) is not receiving home care.

She says it's being denied by the North East Community Care Access Centre because she complained about nurses contracted by the organization whom she claimed were not following her doctor's orders.

The centre is unable to comment on Mettinen-Kekalainen's case specifically, but maintains it doesn't deny care to anyone who needs it -- provided the home environment in which it is offered is "safe." Safe, said executive director Richard Joly, includes being free from harassment and abuse.

Mettinen-Kekalainen told The Sudbury Star last week she threatened to report the nurses to the Ontario College of Nurses because they were not giving her the care her doctor ordered. She and friend Jason Bushie (pictured with her) say the nursing agency and the Community Care Access Centre have deemed that harassing behaviour.

The truth in the dispute may never be known. What is evident is that Mettinen-Kekalainen seems destined to spend her last days in living conditions that would be considered unfit if a dog were subjected to them.