Edie posted this on Facebook. Her husband Tommy and she are further along in their Parkinson journey. She also has a much stronger faith in the Almighty than I do. But like Parkinson’s disease everyone’s faith is different.
From: The Kynard House
Posts, Notes and Parkinson’s
Tommy is with us still.
He rallied for a few days.
He is alert at times.
Family and friends have been stopping by.
Hospice is a blessing.
It does not seem real.
I know the sentences above seem devoid of emotion, but at this point, I’m like a tire that’s “out of round”.
I’m on auto pilot.
I slip into the guest room to regroup.
I’ve vented when necessary…cried in bursts and then I get up and do what’s necessary.
God is with me and if there’s any sentence that says it all…I’ll say it again. God is with me.
In the very beginning when I joined this group, I asked the question,
“What is the one thing positive that Parkinson’s has caused in your lives?”
No one answered positively. All were negative responses. I couldn’t grasp that! Positive CAN balance the negative. I refuse to let the negative
outweigh the positive.
Because I’m an encourager, and empathic, I will add to my original post, because personal growth is always necessary.
This is what I have learned.
God is still with me. He is my rock even though I don’t take enough time to sit with Him.
As Tommy (my earthly rock and solid foundation) prepares to leave this world…I am addressing my soul, asking God to open my eyes to anything that I have closed them to…to open my eyes so that I can see my way through the maze of emotions.
Yes, Tommy is still with us and God is within me, all around me and beside me.
The positive?Edie Kynard
I now fully grasp, “Fill me up, Lord!”
I think that “the one single positive thing” for me is finding the love in our relationship and making me aware of it. Our love for each other has always been there, after 51 years it must be, but this debilitating disease makes it hard to remember what life once was and what it can be. I have learned to do things I never imagined that I would or could. This damnable disease has caused me to find an inner strength I didn’t know was there. It also has shown me that it’s okay to show emotion and not be embarrassed. Godspeed to you both on this phase of the journey. May the road rise to meet each step along the way. God’s love be with you, Edie.
Edie, like me, writes a lot about her journey. Tommy seems to be getting worse as time has gone on and although I do not know them personally, it seems that he is not resisting PD as he once was.
Nor is Cheryl. Last evening her hallucinational behavior was particularly disturbing for me. The hallucination is one that she often has. She sees two little girls. Last night she was very concerned that no one was coming to pick them up. she began to become frantic about that. She was going to go out and look for the parents.
I reached out to my daughter and my sister-in-law. If I could get one of them to call and bump Cheryl out of her virtual world our evening would be better and she would sleep. It was my hope. Anna called her mom.
Later we took a walk and talked about Anna’s phone call. She was very animated about the discussion with our daughter on the phone. Taking her evening meds gave her a little indigestion as often happens. The girls were gone. Indigestion and hallucination seem to be mutually exclusive.
Oh. About love. Sometimes you will go to great lengths to relieve pain or anxiety in someone that you care dearly for. Sometimes adding mild pain (indigestion) relieves other dilemmas. It was unintentional on my part but her gastric distress relieved her other stress.
A couple years ago Cheryl started a support group at our church. She noticed that in addition to herself several other members of our parish had PD this included the pastor. We (I am the Uber) met several time in the small parish chapel. Covid chased everything onto Zoom for awhile. As we all peeked out from behind our masks we started meeting again in person at Parkinson Community Fitness in the evening. Cheryl always has a meeting to organize the meeting the Saturday before. Today she asked me to organize that meeting for her. Slowly, ever so slowly, she is letting go of things that keep her interested in going on.
I did not push back. I think of this as her project. I merely did what she asked because I love her.
Carpe Diem but seize anything that helps.