Thoughts on the last night in Germany

Kairit's blue eyes filled with tears that fell on her cheeks. We were having dinner in the hotel restaurant on our last night in Duesseldorf. She talked about the impact ALS has had on her life. She was an artist who worked in a flower shop while honing her craft and searching for work. She studied theatre art and glass painting. Finally about five years ago the hobby that brought her joy turned into work that she loved and could live by.

She began illustrating children's books and greeting cards. For several years, Estonia's largest chocolate company, Kalev, hired her to design their Christmas packaging. She taught art classes at the Tartu Art Institute and found satisfaction in having students find their talents through her teaching. She was able to buy a small apartment in a rural area and life was good.

Estonia is known for its cultural activities and Kairit's favorite work was in the theatre where she painted masks and actors' faces. It's in a small regional theatre in the summer of 2008 where she met her partner, Anto Siimson. Anto, who works as a musician and furniture craftsman, was performing in a play. He has been by her side ever since - in the beginning when the struggle to get a diagnosis was so frustrating and painful, and since, acting as a caregiver against what could become insurmountable odds. He's loving, kind, thoughtful and strong, lifting her out of a chair, carrying her when she cannot climb stairs or get into a car. He's a helpmate at home, too, with cooking, cleaning, and whatever else he can do. Most important, he makes Kairit feel beautiful, and despite the muscles that have shrivelled and shrunk, that she, Kairit Krikk is the most wonderful woman in the world.

Kairit's medical experience has been good at Tartu University Hospital except for some confusion as to whether or not she has ALS or MMN (multifocal motor neuropathy, a non-fatal motor neuron disease.) Not all the doctors agreed on the diagnosis (not unusual in cases of difficult diseases in which the diagnosis results from the elimination of possibilities.) Kairit says when she had the IVIG treatment (Nov. 2009) usually prescribed for MMN she was doing better, able to climb stairs carefully and the muscle-wasting did not seem to progress. That benefit lasted until the end of January. However, her next appointment was not scheduled at Tartu until mid-April, and despite her many efforts to get it moved up, she could not.

The stem cell treatment, she thought, was the only option to try and hold off any further damage to her body. She is hopeful that it will help but it may take a few weeks to ascertain what, if any, improvement there is.

I was upset to hear Kairit's story about a Dr. Katrin Gross-Paju who is known as a top neurologist in Tallinn, Estonia's capital. She could use some sensitivity training. She's not unlike some doctors we have in Los Angeles who spend more time on their television careers than paying attention to their patients. I once waited in a well-known female ob-gyn's patient room for three hours...thinking she was dealing with an emergency...when she breezily walked in and said, "I'm so sorry. The front desk should have called you." Turned out the doctor had a last-minute TV appearance. I never saw her again.

Dr. Gross-Paju's office ordered a muscle biopsy done on April 7, 2009. When Kairit called repeatedly to get the results over a period of six months, she was told by the doctor that the results were not in and she needed to wait. Kairit did not know if such a long wait was normal. Kairit had no way of knowing that the lab had sent back the results by April 27 noting the muscle biopsy (a painful procedure) needed to be repeated because the arm tissue was not enough. It had to be done on the leg. It was only when Kairit's older sister emailed the laboratory that they found out the results had gone back to Dr. Gross-Paju's office six months earlier. Kairit then proceeded to have the second biopsy which indicated ALS.

Kairit's final appointment with Dr. Gross-Paju was demoralizing and difficult. When Kairit asked about her options she was told there were none. That's true, there aren't any.

When Kairit asked if she had any help to give, the doctor said, "I can get you a breathing machine."

Kairit: "But I don't have any problem with my breathing."
"You will, and then you will come back to me," says Dr. Gross-Paju.
Kairit: "But what can I do? What help can I get?"
"I can do nothing," says Dr. Gross-Paju, "You are going to die."

Here you have a young woman who has just been diagnosed with the most awful disease...in a country with no supportive ALS services...whose tests were delayed by six months...who had nowhere to turn, no knowledge of the death sentence that had just been pronounced. Some kindness would have been welcome, even in some gentle words, saying "I am sorry for your situation. I would like to help but to date there is no cure and no therapy. We will keep in touch and I will assist as the need arises."

Doesn't take away the shock but helps to cushion the blow.