Ch.27. Porch Bird Watching on the First Beautiful Spring Day of the Year.
Today, in mid-April, was the first 60 plus degree day this year here in north central Wisconsin. Pat and I sat on the porch this afternoon watching sparrows, blue jays, doves, nuthatches, cardinals, and finches dart to our feeders and seed-strewn ground to snatch up corn and birdseed, while we were listening to robins, crows, and even a pair of sandhill cranes in the distance. The sun was shining, a rarity after a winter of heavy snow and early spring rainstorms.
This season is special in all the usual ways – the wonder of a whole region of the world returning to life. But it’s also special in another way. This is the first anniversary of Pat’s Lewy Body diagnosis. When I look back at this year, I have many good thoughts. First off, Pat is functioning at a reasonably high level. This is partly due to the effectiveness of her medicine, a generic form of Aricept. This medicine prevents the breakdown of acetylcholine, a neurotransmitter essential for muscle movement, memory, mental alertness and concentration. Since Pat’s brain presumably produces too little acetylcholine it is important that what she does have gets used completely before it breaks down. That’s Aricept’s job.
However, I want to give Pat a major share of credit. I won’t just say she’s faced her disease courageously, although she has done that. More importantly, she’s let herself feel all her emotions – sadness, anger, fear, joy, loneliness, grief, melancholy, etc. – as they have emerged. Her emotional honesty has helped both of us engage our new reality. Lewy Body is not something you pretend isn’t happening. It is something you must own up to every day, with all your feelings.
We’ve had to restructure our lives this past year. Mostly we’ve simplified things. Fewer trips; more regular routines; more time together; more time “being” and less time “doing.” I’m personally surprised by how little I miss leading professional seminars. Much of what was very important in the pre-Lewy Body Era has become optional at best. I’m not saying it should never have been important, though. Every era in a person’s life, and apparently in a couple’s life, creates its own meaningful challenges. I loved doing what I did, alone and with Pat, but all that is a relatively lower priority today.
Here comes another year. What to hope for? Certainly, staying the same, maintenance, is a practical goal. Buying time for the new drugs being developed which are designed to reverse dementia to find their way to us. Also, peace of mind for both of us, sharing our feelings, facing the bad days with equanimity and experiencing the good ones with joy.
We are looking ahead to our 54th anniversary this July. Amazing!
Pat’s comments on Porch Bird Watching on the First Beautiful Spring Day of the Year.
Watching the birds and listening to them was wonderful. I went out on the porch and tweeted to them for awhile and they answered. They were very small in a high tree so I couldn’t tell what they were, but they answered me in the same language. I really enjoyed sitting with Ron in the breeze watching the birds. He could point out more kinds than me but still I could see the dove right away. It was a lot of fun and it was very nice being together and being relaxed that way. It felt like old times.
I love Ron. He is the love of my life and he makes everything more wonderful for me.
I’m hoping that I can do less wandering around in my early morning sleepy awake period, so I won’t upset Ron so much. Although I have a spottier memory, I do think I am continuing to improve. Some days are better than others and I look forward to the days that are best. I hope many of them will be in the future. I want to continue to grow. I don’t intend just to decay with Lewy Body.
What I miss most now is my freedom to go driving and walking and biking and to go places to be alone. I’ve always loved that. Perhaps I’ll get well enough that I will still be able to do some of that. Whatever, I’m very happy just being with Ron and I feel like I will continue to get better.