Notes following an ALS Association event last week

I went to the ALS Association Los Angeles Chapter event at the Skirball Center last Thursday night (Feb. 25). Billed as a "Decade to Remember," it highlighted the many achievements of the organization since it's early days, including legislation establishing a standard of care for patients, including those in the military. It seems those who serve our country are especially susceptible to ALS. Why is that? I want to know what causes this terrible disease.

My niece is the second loved one in my family to be diagnosed with Lou Gehrig's disease but the two relatives are not related. In the mid-1980's my Aunt Geri in Toronto was given the grim news. She was my mother's younger sister. I was working at KTLA News at the time so I wasn't able to get back to my hometown as often as I would have liked. I saw her at the beginning when she had trouble walking and used a cane. I visited a few times after that but she went downhill rather quickly, falling into a depression, and losing her will to live. The last time I saw her before she passed just after turning the corner on age 60, she was lying in a hospital bed, unable to move, refusing a feeding tube and the ventilator. I really had so little knowledge about the disease but I do recall being upset to know there was no therapy, no drugs, nothing available to stop or cure the problem.

I Skype with Kairit regularly so even though she is thousands of miles away, I feel closer to her than I did with my aunt. I also have searched the internet so I have a lot more information about ALS. Kairit is the youngest daughter of my half-sister on my father's side of the family. This is not a genetic link, merely bad luck to have this terrible illness strike twice.

One of the wonderful case workers, Jackie Neff, who is now retiring but has long been associated with the L.A. Chapter of the ALS Association was honored for her service at the Skirball event. She would go out of her way to do or get whatever it was that her patients and their families needed. Jackie exemplified the true meaning of a "Social Worker." I am glad that ALS patients in California have a caring and supportive network available to assist them. Many of the services are provided free by the ALS Association. I wish there were something like this in Estonia where Kairit lives. There is not. Even her doctor in Tallinn was insensitive to the diagnosis and what it meant. When Kairit asked her whether or not she should try stem cell treatment or the drug, rilutek, assuming she could get it, her doctor said, "I don't care what you do. You are going to die. Do what you want." I couldn't believe that a doctor could be so heartless! The patient and her family is left on their own.

Despite some moments of anger (why me?, why now?) and discouragement at the lack of therapy or a cure, Kairit has a positive attitude now. She has followed a healthy diet with lots of vitamins and minerals to boost her immune system. She has tried to detoxify as much as possible. Could it be there was some lead or other toxic substance in the paints she used to use for her work? She says she always bought the best paints, the most expensive ones...but who knows what unscrupulous manufacturers may have put in them? My aunt worked in the offices of the Reliable Toy Company. What toxins were there? Toys were made there...plastics, metals, rubber, and lots of other materials in an era when we did not know as much as we do today about air quality. Did whatever toxins there were cause the motor neurons to start failing? Is ALS cause by a virus or a bacterial infection? We don't know yet.

I want more answers. There is so much data that needs to be sifted through by those scientists who know about cause and effect...who can make educated guesses and hopefully find the answers we seek. That's why I want to raise the necessary funds to get them working together and trying something new. I want a cure for Kairit and all the other patients who have no hope at the moment.

A philanthropist who underwrites a baseball tournament that benefits the ALS Association and a family who raised $60,000 for the fight against ALS were honored at the Skirball as well. I left that evening encouraged by the warmth and commitment of the people in the ALS Association, content with the knowledge that even in today's economy, there are those whose hearts are huge. ALS kills but money for research can hopefully stop it in its tracks.