One Positive Thing

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.

9/12/2021 — Sunflower Day

Today was the day to walk or run or ride to raise money for the Sunflower Rev it up for Parkinson. Team SMILE made a good showing. The pictures say it all.

It is a magnificent day on the riverfront in Cincinnati, Ohio. And a large contingent of our family appeared to help Mom, Grandma, Aunt Cheryl and Cheryl raise money for sunflowerrev.org. The fund benefits Parkinson’s disease research here in Cincinnati. It also is a social event that promotes understanding of Parkinson’s and how it affects patients and their families.

Special thanks to Texas for helping out today.

Carpe Diem.

9/11/2001 – Wandering Indiana

Today is a sad day. Twenty years ago we were at Cliffty Inn in Indiana up the hill from Madison. We were on a spontaneous vacation trip.

The whole world seemed very quiet that day as we made our way to our eventual destination. I realized sometime later that morning that there were no planes in the sky. There were no contrails.

All brought on by a fairly well to do Saudi Arabian who somehow felt slighted by the U.S.A.

Well, Osamba bin Laden, you were evil incarnate. It is so very sad that you did not understand the Quran when you read it.

God is great but you did not understand that idea and believe.

51 Years Today

Today is our 51st wedding anniversary. I took as many of the kids and grand kids as could make it out to dinner yesterday evening to celebrate. It was a very nice meal. Cheryl told me she was grateful to everyone who was able to come and she had a great time. Later when it was time to go to bed she wished me a happy birthday. She said in all the confusion and celebration she had forgotten to do that. I thanked her.

Several weeks ago in early July she gave me this note. She was listing cards to buy at the time and she realized from her notes that our wedding anniversary was coming up in August. I remember on that evening a few weeks back that she was very proud of herself. Her math was still working. I just smiled and agreed with her and kept this note. I think I will always keep it.

We met 55 years ago on a blind date tomorrow. We were married 51 years ago today. It was as HOT day. It was August in Ohio.

Although life could be better if Cheryl did not have Parkinson’s disease, I would not have missed one day of our life together. Happy Anniversary to us!

Carpe Diem.

Every day is a winding road, enjoy the ride.

Last Night it was Bacall’s Cafe

Wednesday night dinner out was a favorite place Bacall’s Cafe. She had a half BLT and a salad. I had pot roast, mashed potatoes and vegetables which turned out to be sauteed zucchini. It was a regular night.

Cheryl spent a great deal of the time trying to get her right earring in. She never did. The waitress tried to help but was worried about hurting her ear. Many years ago when she had her ears pierced the incompetent piercer did not get the hole straight through. For many years she was able to make it work. These days her PD fidgety motion makes inserting the post or pin often unsuccessful.

Eventually I convinced her that no one cared and she should put it in her purse and try later. We talked about different things none of which stuck with me. She did not have any odd topics to talk about. It was a dinner conversation that lulled me into forgetting about her PD. We teased each other as old married people do.

I remarked that none of her family came to her family gathering at her cousin’s house. She replied that maybe since they had been at our niece’s wedding the previous weekend they were doing other things. Perhaps she right, as family gatherings go, the clans tend to stick together with not much intermingling.

We saw several old acquaintances at other tables and booths. It was Wednesday afternoon and the old folks were out having dinner and a drink or two. Talking about this and that. She was having a good day for the moment.

When we got home, I settled into my recliner to watch a bit of news and for Nature to come on our local PBS station. She went into her office to look at the clutter and maybe check email. About an hour or so later as I was starting to read my book and tigers of India were saved for now, she showed me some pictures that she thought were of my sister Laura and her family from a trip out west. (POOF) she was off in PD la la land.

The pictures have little to do with Laura although she is in some of them and nothing to do with any trip out west but Joyce and Rob, our family’s only westerners, are in them. The pictures are of two Christmas celebrations twenty-five or so (maybe thirty) years ago.

Oh well, Carpe Diem!

Dan is Coming

Cheryl particularly looks forward to visiting with family and friends. She also is close with several women from grade school. They refer to themselves as the Clementines. Lately they have been meeting via Zoom because several of them are taking care of folks that have immunodeficiency in some way. Cheryl really misses the face to face interaction they used to have in a restaurant somewhere.

Today her brother Dan brings lunch. They will sit and talk about family things.

A few days ago many of her siblings gathered at a restaurant to celebrate Dan’s birthday. I was there. I refer to myself as Cheryl’s personal Uber driver but lately I pay closer attention so that I can help her remember what was said and who is doing what to whom. It is not a task that I relish. It is what I do.

As a family group, their generation is beginning to die off. The second oldest died last year in the chronavirus pandemic. They seem to talk to each other more about their personal lives. Most of them are very quiet about that. The youngest talks often about what is happening in his life. He is a new grandfather and soon to be again. All of them live locally within an hour drive.

Our two families deal with grief and loss very differently. My sister and I talk on the phone more often than we did when Mom and Dad were still alive but even so, we might go weeks without doing so. Our older brother and the oldest sibling died last Spring. Our core group has been reduced to two. My sister and I are separated by two thousand miles and three time zones.


… And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be. And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.

from Desiderata by Max Ehrmann

Another favorite thought

Carpe Diem. July is almost completed.

Time after Time

A few minutes ago I went in to check to see how she was doing. She told me that Tari picked out some really cute birthday cards this time around. (Tari was not with us shopping for cards yesterday but that is not important.) She is working on the August birthday cards. She had just put on her favorite Rod Stewart CD on the player in her little office. This song came on. It happens to be one of my favorites. This disease of Parkinson is slowly taking her from me and I long for the old days.

What good are words I say to you?
They can’t convey to you what’s in my heart
If you could hear instead
The things I’ve left unsaid

Time after time
I tell myself that I’m
So lucky to be loving you

So lucky to be
The one you run to see
In the evening, when the day is through

I only know what I know
The passing years will show
You’ve kept my love so young, so new

And time after time
You’ll hear me say that I’m
So lucky to be loving you

I only know what I know
The passing years will show
You’ve kept my love so young, so new

And time after time
You’ll hear me say that I’m
So lucky to be loving you
Lucky to be loving you

An old standard by Rod Stewart

It is a lament of times passed and an optimism for the future. I often struggle with that last part when this disease of Parkinson appears in the middle of the night or I am researching incontinence products on various websites. On melancholy days I think about the preParkinson times. It helps to not look back with longing for those experiences. Time only moves forward. I am grateful to have had those experiences with her. I am grateful for the times we have yet to experience.

Do I wish she did not have Parkinson’s disease? You betcha.. Cyndi Lauper has a song that might be more familiar with a similar sentiment. Once in a while I get very nostalgic for our previous life. I let it roll over me in waves. It is helpful.

Tonight’s menu is Salisbury steak, rice, green beans and corn. I am baking a small cinnamon crumble cake for dessert. These are some of her favorite foods. I am following the Dinner for Two cookbook by Betty Crocker which is her favorite cookbook. She will compare her version before our kiddos came along to my version this evening.

Hopefully the hallucinatory little girls that often populate our home in the evening will not appear and we can rest later.

She is looking for earrings after she awoke from her nap.

Carpe Diem.

Pizza Tuesday

Several years ago we began going to a favorite local pizza store one night a week. We tried different days and over time we landed on Tuesday as the day we went out for pizza. It developed into a tradition as my youngest son would say. It became known as “Pizza Tuesday”. Sometimes in conversation a friend might say, “Can we get together tomorrow?” I might reply, “No. That’s Pizza Tuesday.” It became sacred. We did, however, invite others to our favorite pizza store to share. Occasionally one could see local celebrities such as one of the local colleges’ basketball coach there snarfing pizza like the rest of us fans.

When we sold our old house and moved to our condominium we invited our neighbor and friend Jane to our Tuesday dining adventure. It became a time to chat and catch up. Pizza Tuesday as a tradition became even more ingrained in our routine.

The pandemic pandemonium stopped much of that activity. At first we carried out (took away) our pizza from our favorite pizza store and moved our tradition home to our dinning room table. That worked well for a bit. Over a period of approximately fifteen months we experimented with pizza that was not only pepperoni. We added vegetables and fungus. We tried other sauces from the menu. We tried other pizza stores. We tried take away from other food emporiums. We expanded our flavors.

As the pandemonium eased Cheryl and I slowly began to visit restaurants with few or no utensils or menus. I learned how to use the square bar code thingy that restaurants pasted to their tables, walls and doors. A restaurant with paper menus became a favorite when previously it was not a favorite. Victoria, a young waitress at the favorite-not favorite, began to recognize us by sight. We came when she was working often. We began to look for her and tease her a bit about her constantly changing hairstyle. There was a reason to go there beyond pizza.

Socialization is a strong motivator. I worried a bit for Cheryl’s safety and health but I recognized that for her it was important to simply get out and see people other than me. Even in a pandemonium, one must live. Neighbor Jane who is immune-compromised remained isolated.

This past Tuesday evening we went back to Pizza Tuesday. The three of us went to yet a different pizza store. Perhaps, for us, THE PANDEMONIUM IS OVER! Prior to this event we made a list of various foods both home cooked and restaurant dishes that we would like to have. Jane aimed this discussion specifically at Cheryl. We will read the list and tick them off one by one. And I hope make a new list at the end of this list.

We are all three vaccinated. Not one of us has bought into the disinformation distribution on social media. Eating out and conversation provides all of Maslow’s hierarchy in one way or another. This chart is similar to one I saw many years ago.

An old psychology chart that I have not seen for awhile.

Godspeed and Carpe Diem.

Old Cars

I have never really been a car guy. The first car that I owned was a 1956 Chevrolet not a Bel-Air, the other one. Two tone white over blue. I bought it from my grandfather for $100 in 1968 or so. Mom insisted I pay grandpa for it. I am pretty sure he would have given it to me. I gave him $100 of my hard earned cash in cash from random jobs.

I loved that car. It had a steering wheel like you see in buses today. It was huge. A friend of mine and I rebuilt the engine. Replaced several of the valves. It was a good experience many kids today have not had. Spending your own money. Fixing something that you can use for yourself, some work that you can be proud of and show off. I was seventeen then. Life was good. I was living on Dad’s dime and gave my cash to grandpa.

When we got married, my wife had purchased a 1969 light blue VW beetle as her first and for many years of our marriage, our only car. I do not have a picture. I wish I did. I loved that car too. In its later years you had to lift your feet up if your went through a puddle. The floor pan was famous for rusting through on those neat old cars. We owned it until about 1985 or so. It is the only car other than the ’56 Chevrolet – not the Bel-Air, the other one – that I ever personally worked on.

This is the wrong color but it brought back memories. And it has been jazzed up more than ours was. A few weeks back I visited California to attend my nephew’s wedding and visit with my sister. Good memories of the trip and this picture of an old VW made it worthwhile.

Visit with Friends

We had a nice long visit with friends yesterday.

Life long friends.

High school friends — Paul and I met in high school. We met probably in homeroom of our freshman year. My memory is vague on that account. Nevertheless we spent a great deal of time together in class. His surname was one letter off of mine, so often we were seated side by side in the back of class. Occasionally we were seated so that I was behind him in class and in one instance with a teacher whose last name also began with W, we were side by side in the front row. Teachers like alphabetical.

Paul was always nearby. I could touch him if I needed to do that. Sitting behind him in class was a plus. I was tall and grew taller in high school. He was taller than me throughout our high school years. In that one class I could hide if I wanted. It did not last long.

Purcell High School

We were not competitive in high school just good friends. It is rare that a friendship develops and remains throughout two lives in which being apart is as though it was not when those friends meet. Their meeting may be often or seldom but when they meet once more it is as though no separation happened. Our friendship is like that.

Through life our worlds separated and re-connected in a celestial mystical dance. We went to different universities. We got married. Magically our wives like each other. Raised families. Followed our own life paths. Attended our kids marriages. And as the families grew and spread out, we met up every few years to vacation together.

Cheryl’s reaction to an adjustment in her Parkinson’s medication destroyed our last attempt to vacation together. The disease is adding an element of confusion, hallucination and dementia as it progresses within her.

In the fall of 2019 we successfully made a trip to Florida by car to visit with family. After the pandemonium of COVID, I hope to make the trip north to visit Paul and Cathy. Cheryl occasionally talks about that and before I get too old, I suppose we should try.

With wonderful friends we had a wonderful, peaceful visit yesterday. We had long conversations about totally random topics that included children, grand children, the stock market, parents, food, diets and onward. Thinking about it now after the fact, I do not recall each individual topic. Our conversation merely flowed from one thing to the next. Occasionally it stopped. We were comfortable with listening to the cicadas. It was a pleasant afternoon and Cheryl had a peaceful sleep filled night afterward.

There are no cicadas in Minnesota.

Carpe Diem.