We went to the Young Onset Parkinson's Support Group, for Care Partners and those who have YOPD. It was one of the best things that could have happened. Aside from hearing a broadcast of an authority on Sleep Disturbance in Parkinson's we were able to compare notes with other couples who have had very similar experiences.
My first conclusion was that I was minimizing the effect my sleep disturbance had on my spouse, even if he has always been a light sleeper. The second was that I had long ago accepted his reticence when faced with challenges. But he is present and accounted for, unlike others who completely flee. So I have to love the other things he does, like fixing the fence, in fact, fixing the nearly everything that comes apart, shakes loose, or just ages itself out of working right.
He was grateful to be able to find others like himself who were trudging along and supporting their partners through the constant change that is Parkinson's. After seeing him smile, laugh, and share his own experiences among them I felt relieved. It wasn't all hardship for him. He could take it in stride.
So I see that for me it is largely how I take it. What are my choices, and how do I respond to having to work through changes, often for the worse? This is the long ride home of my life. Am I going to spend it as a Parkinson's Patient or a Person who loves and does a lot of things and experiences the big and little joys of life, who also has Parkinson's.
Deliver me, Oh Lord, from being a Patient. Let me act for myself, appreciate whatever help others can give when I can't do for myself, and get and keep a smile on my face, once and for all.
1 comment:
Amen!
I am slowly coming to some of the same conclusions. The perspective we choose will be a huge contributor to how we handle this trial.
It sounds like you had a very successful trip. I need to look into some groups in my area. That is as soon as I come back from denial land, which may not be soon. lol
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