Kairit looks beautiful on skype. We talked about her recent ten-day stay at the hospital for neurologic care in Haapsalu where she thought she would receive daily physical therapy. That proved false. She did have one 45-minute session but it seems that was merely to test the strength of her muscles. I was not there so I cannot attest to Kairit's impression that the process at the hospital was merely paying lip service to her condition. She feels that given the death sentence of ALS there is no real desire to improve the quality of her life. I argue that I am sure she is mistaken -- that often nurses and even doctors feel impotent in dealing with a disease where there is yet no treatment nor cure....and its very beginnings are not yet understood. Here in the United States there are clinics for people with ALS where they can get help to continue their daily lives. Often these resources are provided free-of-charge. The ALS Association is a valuable helpmate.
I asked Kairit's mother, Aino (my half-sister), who is 70 years old, how she is holding up. She is tired but determined to help as long as possible. She and Kairit's sister, Hurmi, who was visiting from Tallinn, received instructions at the hospital on how to lift Kairit in and out of a wheelchair. Kairit is finally coming around to the idea that she should have one so she can at least get out of her one-room environment. The goal is to get one by the time spring arrives and install a wheelchair ramp at Kairit's back door stairs so she can be transported to the sidewalk. Fortunately, her apartment home is on the first level of the building and located not far from the town center. She'll be able to visit with friends and enjoy a cafe meal. We all hope that the change of scenery will enliven Kairit's spirits....but we forgive her the bad days. Think about it -- how do you feel when a bad headache or a cold ruins your day? Imagine a day when your muscles are not working -- when you can't walk, or sit up in bed, or use your hands, or swallow -- and never will again. Tough deal...
We caught up on other family news and then agreed to speak again in a few days.
I did not tell Kairit that the Canadian attorney with ALS who we met at the stem cell clinic in Dusseldorf died this past week. Rest in peace, David. You will be missed...
