Spirituality

One Positive Thing

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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”.
It wobbles.

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?
I now fully grasp, “Fill me up, Lord!”

Edie Kynard
My reply

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.

Emotion is often Close to the Surface

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Cheryl carries her emotions close to the surface. It seems more so lately. When we received this thank you card today from a great-niece, she was very excited to hear from her. Ally thank you for being so considerate of your great Aunt Cheryl. I responded to her.

Dear Ally,

Thank you so much for the thank you note and response to our graduation gift. We wish you well in your new career. Can you tell us a little bit about that? What took you to Austin?

As for your questions, the Covid crisis (I prefer pandemonium) in many ways has passed us by. We were vaccinated in January and February at U. C. Health here in Cincinnati. They made it very easy by creating a drive through clinic in the garage of the building that houses Cheryl’s neurologist. In Cheryl’s case they sent her an email notifying her her upcoming appointment with her neurology group and she should make an appointment to get the vaccine by July – and oh by the way here’s a button to click on to set that up. 🙂 She was fully inoculated with the Pfizer vaccine before the end of January. It took me a few weeks longer because I had to set up being a patient at U. C. Health first and then had to wait for a slot to open up but I got both doses by mid-February.

Parkinson’s disease is great practice for staying isolated. Often Cheryl really does not want to do anything. Sometimes I have to push her to get going. She has an exercise class on both Tuesday and Thursday that is oriented towards Parkinson’s patients.

I do not know how much you know about Parkinson’s but it is more than just the jiggly motion with which you may be familiar. Michael J. Fox and his foundation provides a great deal of information and a great deal of money for research. Unfortunately there is no cure (yet) and the disease itself is degenerative. It affects everyone differently. Cheryl’s mobility is generally good with medication but in her case the disease is affecting her cognition and memory. She used to be a whiz at computer databases but now struggles with opening email. 😦

With your graduation card, I suspect she sent it to your grand mother. Cheryl often mistakes who is living with whom and who belongs to which family. I often have found myself correcting that information but it is a never ending task. It is tricky to keep track of your own stuff and someone else’s stuff too. 🙂

If you are interested I whine a bit and muse about things as they are in my life on my little WordPress blog [ www.adjunctwizard.com]. I have discovered over time that your grandfather and I think a lot alike. I did not realize that until a few months before he passed away. I am glad I was able to visit him before that happened. Sometimes I wish that we had been closer when he was alive.

Cheryl’s sister Janice who also lived in Florida passed away from Covid in August of last year. So, the pandemonium has touched our family closely.

We wish you well in your new life. Keep in touch and stay safe.

Best Regards and Godspeed,

Stay safe and be well Ally. May the road always rise up to meet your feet, May the wind always be at your back. Godspeed, young one.

Carpe Diem.

Poignant

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My cousin called my writing poignant.  It is a word of which I do not have a clear meaning.  He called to wish me a happy birthday a few days ago.  Instead he caused me to think about my list of childhood memories some more. The list is something that I work on occasionally as the mood suits me.

Poignant to me means personal, important and a little bit sad. So, I suppose this little blog of mine is poignant. It does come from my heart.

But more to the point why do I find anger in myself when I am attempting to be phlegmatic and calm and loving? Cheryl is often unable to help herself and unable to ask for help with certain things. It is not her that finds this behavior satisfying. It is simply her disease. I tell my inner self this over and over but it does not always last.

Let’s try earrings, for example. She loses them. She cannot get the little clip on that holds them to her earlobes. She loses the little keeper. I bought a box of assorted earring backs on Amazon. A thousand of them for $6. Often I find myself searching for something that requires the sight of a twenty year old person. Can you detect the creeping anger? (smiley face here)

Cheryl did not have her ears pierced until after we were married. Whoever pierced them was perhaps nervous about causing pain in another human being. Whether or not that is the truth, she flinched when poking the hole in her right ear at least. This has made it hazardous to get that earring inserted properly throughout her life. Her Parkinson’s wiggly motion makes inserting the post worse. Her occasional numbness in her fingers makes it virtually impossible and for some reason this drives me crazy. (smiley – sad face). Part of that might be because I want to find the beautician who did this originally and get her money back.

I know not why I focus on earrings for my anger. I was stuck there for a bit last evening when we went to church.

The opening hymn : Healing River of the Spirit

Healing river of the Spirit, bathe the wounds that living brings. 
Plunge our pain, our sin, our sadness deep beneath your sacred springs.
Weary from the restless searching that has lured us from your side.
We discover in Your presence peace the world cannot provide.

Wellspring of the healing Spirit, stream the the flows to bring release.
As we gain ourselves, our senses may our lives reflect your peace.
Grateful for the flood that heals us, may your church enact your grace.
As we meet both friend and stranger, may we see our Savior's face.

Living stream that heals the nations, make us channels of your power.
All the world is torn by conflict; wars are raging at this hour.
Saving Spirit move among us, guide our winding human course.
Until we find our way together, flowing homeward to our Source.

I take Cheryl to church as long as she is feeling up to it. I have little interest in church and religion but she does. I do however sing hymns that I know and am comfortable singing. (It is one of the things on my list that I referred to above.) Sometimes hymns touch me in an inexplicable way. This is one. My inner anger melted away.

After the service we walked through the parking area which was covered up with booths getting ready for the last day of the festival at our church. We ran into some friends and Cheryl began talking to Kay. I rudely interrupted to ask my wife if she knew to whom she was talking. She told me her name was Kay. I was rude. I suppose I was worried she did not know Kay’s name. I was wrong about that. It was not necessary to be rude. I apologized and explained to Kay.

I suppose church had gotten Cheryl out of her previous couple of days where she did not know who I am and where she lives. I was unaware and over protective.

Every day is a winding road. Reread the last two lines of the hymn. (smiley face)

Carpe Diem.