A friend of mine put this on Facebook. I am certain that he put it there as bait and I bit. COVID is of course short for CO(rona) VI(rus) D(isease). The nineteen typically tacked on to the end is to demark 2019 as the year when the virus was first noted in Wuhan, China. The individual who first started the game apparently is displeased with the poor initial discussion of masks, personal hygiene, and vaccines.
This posting on Facebook is intended to rile folks up. I feel the pain myself. Having finished with my second booster shot of the Pfizer vaccine a week ago, I am elated. The previous leader of the free world could have celebrated his and his wife’s vaccination before they left the White House. He did not. The event was so low key that it was only reported after he flew to Miralago to resume the life of the rich and famous guy that he is.
I used to play this game when I was still working full time and some one would use an acronym with out first explaining what the term stood for. The implication being that if you did not understand the term you were not on the inside. I always made me laugh. If it showed up in an email I might ask an innocent question using my made up acronym. My favorite is SMART (Simply Magnificent And Recognizable Talent) goals. I think timely is a cop out. What does timely mean?
Think about it. Try UNSMART. (Uninformed New Sheep Mainly Are Really Trumpublicans) (political division)
Today I was working on material for school and as I often do I ask Alexa to play the first artist’s music that jumps into my head. Today Phil Collins and his old band Genesis jumped into my head. I asked for Phil Collins by name and found myself listening to a bunch of Disney tunes. “You’ll be in my heart” (Tarzan) just got to me emotionally and tears came to my eyes.
I suppose it is hard for men to come to grips with how they feel about someone or something if it involves emotion. Many of us are embarrassed by our emotions. I know I am. But I have come to grips with the fact that it is a good idea to let those emotions pour out without embarrassment. I try to do it in private if I can find privacy. I have no worries if I cannot.
As the Parkinson’s disease continues, I get a sort of slow motion grief feeling that takes all of my effort to recover from. This feeling is occasionally overwhelming. Music can bring the emotional response to this feeling spontaneously. I my case, I usually do not recognize that I was feeling this way in the background. Words to song or a melody will bring it to the surface. Earlier this morning I spontaneously began to cry. I waited for a bit and felt better. I suppose it released something in me because I feel better about life today.
Cheryl seems pretty good today also. Let’s have lunch out somewhere after exercise class. Okay, she said.
It is a rainy almost Spring day in Ohio and for now Parkinson’s is in the background.
I often find a song or melody that intrigues me at that moment. Kroger has been playing “Low” in some of their commercial advertisements lately here in Cincinnati.
Before that ad I had not heard the song before. It is a rap song. I have very few rap songs in my list of songs that I like. I do not have the same experience that many rap artists have, so, many of the popular songs with spontaneous rhyme and rhythmic lyrics do not connect with my old brain. “Low” does for some reason.
I told Alexa to play rap music. It selected a Hip Hop station that “you might like”. Perhaps I will listen later longer. Rap lyrics remind me of beat poetry. Recently Lawrence Ferlinghetti died. For some reason, in my younger years, his style of poetry interested me. I had his book of poetry – “A Coney Island of the Mind”. I have not seen it for years.
I vaguely recall that I had lent it to someone long in the past. Today I scrambled around to find a copy of a book of poetry that has probably been out of print for maybe sixty years. Amazon is a wonderful thing no matter what Donald Trump thinks.
I switched Alexa from Hip Hop to disco. “Staying Alive” is playing right now.
What do I do to pick myself up? Usually several things at once. Music certainly helps pick me up.
Music is very personal. Long ago I worked for a private company. One of the partners read a book somewhere that convinced him that music played over the PA system would lighten the mood and make everyone happy in their jobs. What a load of crap that book was. The music selected was what ever the office was using as hold music. MUZAK was a special broadcast on a side band of one of the local FM stations. It was perpetual elevator music. It was excruciating to rock fans like me. Christmas holidays brought a five hour loop tape of Christmas carols and other crap over the office PA system. On the second rendition of Mitch Miller’s jingle bells it was time to go home. Some were up-sot!
“Toes” is playing now. I told Alexa to play — life is good today. I need to get my toes in the water and my ass in the sand as soon as I can, pandemonium or not.
A nifty song by REM playing on Pandora or something when I took Cheryl to a physical therapy session with a nice young man from U.C. Health in Cincinnati. I wondered in my head, is it?
It’s the end of the world as we know it (time I had some time alone) It’s the end of the world as we know it (time I had some time alone) It’s the end of the world as we know it and I feel fine (time I had some time alone)
The lyrics are kind of stream of conscience similar to “We didn’t start the Fire” by Billy Joel. It made me think, is this a new way we are going to operate from now on? Mr. Joel’s song is an earlier history of an earlier century. But then he is about my age.
So, is it the end of the world as we know it? Is it the new normal? What is normal? My normal is probably not your normal and why do I hate that comment about it is the new normal. Simply put, what is IT? For a Parkinson’s patient abnormal physical difficulty is common. The part of the disease that is hidden, mental confusion, memory loss, delusion and sometimes hallucination is also normal.
Today for the first time I thought seriously about quitting the little part time job I have with a local community college because it takes me away from Cheryl. And yet, I need time away from her and the care giving. But I believe I need the time away to be on my own terms.
Perhaps I want to take a walk in the park by myself in which I am not part of her support structure. Perhaps I want to walk at my own speed which is much greater than hers but did not used to be. Perhaps I want to take a walk were I do not have to slow to a pace less than a stroll to allow her to stay with me. There are times when we creep around the circuit and I try to get her to take full steps. Perhaps this Parkinson’s has gotten into my head far enough for me to ignore my own needs.
Cheryl really likes to walk but it is a struggle for her. She really likes to play Scrabble but it is a struggle for her. She likes to think about and organize her support group for Parkinson’s folks but it is really a struggle for her. Lately she has decided to do puzzles, well one puzzle so far, as a hobby but it is a struggle for her.
This is normal. There is nothing new about it. It is not the end of the world as we know it. It simply is the world we have.
Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.
– Max Ehrmann Desiderata
Desiderata by Max Ehrmann has become for me a meditation. I try to not distress myself with dark imaginings but on some days that requires drawing strength from a reserve that is depleted.
Michael is right. Parkinson’s sucks. Stay calm. Keep moving forward.
We were driving to get Cheryl’s second dose of the Pfizer Covid-19 vaccine so that we could, half of us anyway, become part of the herd immunity process to tamp down the CoVSARS pandemic pandemonium. I had stopped at a traffic light and looked to the side of the road to notice a road sign post with only the sign at the top. Someone had removed the Ohio Route 561 sign from the post immediately below the JCT sign. It was a naked looking post and my dad’s words. “vandals had removed the sign” jumped into my head. I could actually hear his voice.
Weird, I thought.
When I was first driving, some friends and I were tooling around Fairfax, Ohio heading to the Frisch’s on U. S. route 52 that ran through the sort of village center. We were still traveling on the residential streets. I was still learning that although you may have the right-of-way it is a prudent driver who looks to see if the other driver believes that to also be the case. On this particular day a teaching moment happened.
Another teenage driver, female but that fact is of no consequence, suddenly appeared in front of me in an intersection with which I was familiar and which I knew to be the main street. She had a stop sign which she had ignored. Boom, bam, bang, tinkle tinkle. I hit her hard enough that the car she was driving raised up off the ground, slid a little and slammed back down on the pavement. I was driving Dad’s 1960 Chevrolet Impala. She was driving some littler beige car. Her door was dented. Dad’s bumper was dinged a little and the fender had a scratch in the white paint. I was impressed with how little damage there was to Dad’s car and how poopy her car looked. But cars had bumpers then and frames to mount them onto. I had slammed on the brakes so the car had nosed down and lifted hers up. No one was injured.
Police were called by some neighbors. The policeman gave the girl a ticket. She complained that there was no stop sign for her. He pointed at the post and said it really did not matter for even though vandals had stolen the stop sign, I had the right-of-way.
When Dad helped me to right the accident report to the insurance company and file my version of the event with the State of Ohio, he said I should write that she did not stop because, “vandals had removed the sign.”
Today that jumped into my head. I had not heard Dad’s voice for awhile.
This cartoon is a double entendre. Double entendre is open for misinterpretation. Usually one interpretation is risque or at least rude in some fashion. One interpretation may be metaphorically a dog whistle. Clear communication uses none of these but as the cartoon below describes how jokes employ all of these techniques. And from Shakespeare, “Jesters do oft prove prophets,” in King Lear.
Language is nuanced. Idioms and usage depend upon the speaker’s and listener’s background and environment. As Parkinson’s disease develops it often robs the brain of the ability to detect the nuance and subtly of language and more succinctly the difference between truth and tease.
When people do not say what they mean, the listener is left with an unwanted task of interpretation and analysis without complete information. In conversation the listener may respond with, “To be clear… (the uncertainty)?” in order to understand the speaker. This is a fair question. It is not a challenge. It is a clarification. Questions left unsaid answered only by the listener may not be the intended thought of the speaker.
Direct speech can be interpreted as rude. Many speakers talk around a thought in hopes the the listener will hear that which was left unsaid and be less offended. Direct speech can be interpreted as confrontational but direct speech cuts through the Parkinson’s fog. Parkinson’s is not subtle.
It is hard to do each day with a Parkinson’s patient but if you allow yourself some time you can find optimism in the days ahead. This cartoon – published Jan 17 in the Cincinnati Enquirer – struck a cord in me.
Stephan Pastis and his “Pearls before Swine” is a favorite comic strip of mine. I have not seen the alligators and neighbor Bob for awhile but the sarcastic rat and the naive pig are also favorites. In the gloom and doom of care-taking the characters provide both laughter and insight.
Enthusiasm, Optimism and Fear
Enthusiasm for life and all that it brings may be dismissed as naivete by some. Much like laughter it can be contagious. When I first retired from what I think of as my real career – earning a living – I had very little to accomplish with my day. I began to walk around the neighborhood. At the time we had a house in the Cincinnati urban area known as Pleasant Ridge. We were located on top of the hill very near where the topography starts to rise into the next neighborhood Kennedy Heights. P-Ridge is a very walkable neighborhood in Cincinnati proper with few people walking in it but as I walked more and developed several routes, all intended to remain on the top of the hill, I discovered in myself an enthusiasm for walking the neighborhood to enjoy other folks gardening efforts, the fresh air, the sunshine and simply being out.
I spent the first summer of retirement walking about three days a week. My walks became longer as I got more fit merely by walking. My favorite route took me through four city parks at a length of just over five miles. Occasionally I would chat with the guys mowing when they were taking a lunch break. (A handy feature of walking through a park is there are many picnic tables to sit at and simply enjoy nature.)
When I visited my family doctor during one of my twice yearly visits, he did not say hello, he blurted out – you have lost ten pounds! Huh! His optimism was contagious. We continued our conversation with various medical topics but at the end he encouraged me to keep it up. I have since discovered that I am a fair weather walker but I have not lost my enthusiasm. These days I am still hunting for a good route in our new neighborhood.
Enthusiasm breeds optimism. Optimism for one aspect of life spills over into others. Cheryl has some adjustments to her meds which seem to be helping her. Reduction in one. A slight increase in another. The result is that we are both sleeping better. It seems that things are looking up. Optimism.
There is a prayer — God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference. This could as easily read; Lord, you know all things, instill in me the optimism to accept those things over which I have no control; the enthusiasm to change those things over which I have control; the ability to discern those things. In many ways optimism about life is an acceptance of one’s life situation. What is in front of us is unknown. What is behind us is nostalgia. What is here and now is what we have to deal with and understand and make the best of. It is exciting to do that every day. Optimism.
Optimism gives us the courage to do what is necessary to finish the job. There is no manipulation in us by another force. Self reliance and optimism drive us to succeed. Failure is merely a lesson. Fear and pessimism are a capitulation.
Next time you’re found, With your chin on the ground There a lot to be learned… So look around
Just what makes that little old ant Think he’ll move that rubber tree plant Anyone knows an ant, can’t Move a rubber tree plant
But he’s got high hopes He’s got high hopes He’s got high apple pie In the sky hopes
So any time your gettin’ low; ‘Stead of lettin’ go Just remember that ant! Oops, there goes another rubber tree plant Oops, there goes another rubber tree plant Oops, there goes another rubber tree plant
Oops, there goes another problem kerplop
lyrics from the internet of all knowledge…
… An old song by Frank Sinatra — optimism and tenacity
Along with optimism for the outcome, one must be tenacious and follow through. Each day, take another step.
Giving care to a loved one provides one with the opportunity to show grace and grow grace within oneself. I believe this and each new day is a chance to help Cheryl and understand the gift that God has granted to me. That understanding is still and may always be a work in progress for me. Many of her recent and current symptoms include rapid switching between emotions. This journey is delicate and the stepping stones available have little illumination. Those steps have no outline. Nothing to make them stand out as the way to proceed. Moving forward step by step is tenuous and delicate. Feeling for lose stones takes time.
I tell myself, do not fear what comes today but be aware of what may come today. Do your best and remember God is in everyone.
Finish each day and be done with it. You have done what you could. Some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is anewday. — Emerson
I don’t know why that is. They just do. They are not sad but some are. Life long love is precious. Some say that it is rare. Perhaps what makes me tear up is the fact that many people do not find love that lasts for a lifetime. Perhaps an inner joy in me appears when I discover a story like ours. Perhaps my tears are tears of joy for, I cry at weddings and births too.
In the Fall/Winter Miamian (The magazine of Miami University) is a wonderful love story. Many Miami University grads met their life partners there while in school Oxford, Ohio. I imagine this is true of many university campuses but at Miami it is legendary. The story is about two people who met at a basketball game but did not know each other. They were set up by friends and began to date. During this time she noted that they could get a one hour PE credit for taking a social dance class. He did not want to do that but she insisted with, “If you’re going to date me, we will do this.” Later as they found out that they were in different sections of the class, she wanted to drop the class because it was not what she wanted it to be. He responded with, “If you’re going to date me, you are going to take this class.” The woman teaching the class allowed them to take their final exam together. It was a waltz. It was a metaphor for the rest of their lives.
Today she is suffering with Alzheimer’s disease. And he is her caregiver. As time progressed she needed more care than he was capable. As he was moving her into a facility to care for her better the pandemic struck the U.S. The facility was about to lock the doors to curtail the spread of the virus to their residents. Could he move in with her? Yes. He has moved in with her to the assisted living facility to be with her throughout this Covid-19 pandemic. They locked the doors to the facility to stop the spread. True love.
I wonder about our future with Parkinson’s disease. As time progresses I notice that my life partner struggles with many of the simple organizational tasks associated with day to day living. I have taken over many of these, most of which fall into the category of chores – laundry, cleaning, cooking and the like. I wonder if it might have been better for me to not assume some of these tasks. It is not that I mind doing them but I have taken many of the daily routine tasks away from Cheryl and she has little of the daily routine chores to help her organize time during the day.
As it is, I am able to keep up with daily living chores. But I cannot resist looking towards the future and wondering about what is next.
In addition to being a movement disorder, Parkinson’s seems to destroy in some people the ability to perform parallel tasks. Cheryl has filled her days that I have removed the chores from with a task that her mother used to perform for the family. Elaine used to keep track of and send an appropriate card to children and couples on the recognition of their birthdays and anniversaries. Intermingled with this was additional well wishes for illness, deaths and other life events. It is somewhat unique in her extended family as I have noticed no one else doing this. Facebook has the unintended consequence of reducing within a family notes, cards, phone calls and other intimate connections. (Perhaps a good new year resolution is to get off Facebook and onto the phone or email or snail mail to reconnect.)
I have digressed. The simple act of keeping an address list up-to-date and maintaining a calendar with birthdays, anniversaries, deaths or other dates is confusing to one who is loosing her ability to remember which pocket of her purse holds the chap stick she put in there moments before. I help her and have helped her a bit around the fringes but I am resistant to take over this task in its entirety. It is something she wants to do. It seems to be something she likes to do. It is something that frustrates her greatly upon occasion. It is something that derails her objective when she discovers an incorrect address or thinks she has discovered an incorrect address because she has remembered an address from “auld lang syne”. When this happens one must stop and wait for the correct address to appear from the email inbox – or text message stream which is a variety of the same thing.
This is merely an example of a deteriorating brain and I wonder if I will be able to keep up with her needs into the future. The husband of the couple interviewed in the Miamian recognized that he was unable to tend to her needs completely and decided assisted living was the answer. His wife has Alzheimer’s which is by my perception much more debilitating than the slow progression of Parkinson’s disease dementia but will I recognize when I am unable to take care of her on my own?
Our love is here to stay. Their love is also. I will always cry when I find a love story of two people devoted to each other for life.
Parkinson’s disease sucks. I hope I can recognize where it is sucking us toward.
Do all you can while you can. Life is a one time deal.
Carpe Diem — longing for the old days is wasteful. While it is fun to reminisce about previous experiences today is here. Stay tuned into your surroundings.
I wish to resolve to do this care giving thing better:
my attitude to be positive, my hands to be gentle when administering help and my heart to be full of compassion. [What she sees, hears, feels and tastes is real to her no matter what time of day.]
Understanding and education of symptoms and what can cause those symptoms. Keep educating myself and make no assumptions about cause and effect. [This can help me to understand that I do not know all the answers, that only she knows how and what she is feeling.]
Be supportive when necessary, explain if asked, and lead if called upon. [It will be tempting to know the right answer but to find the patience and empathy to determine what is called for at any particular time is wisdom to be sought after.]
When walking with Cheryl, stroll. She moves slower than she once did.
Do not tune out the surrounding world and merely wait for the next event. Seize down time for exercise, education and entertainment but do not regard the environment as an intrusion of self.
Be more upbeat! (That is not specific. (smiley face here)) Look for the gold in every day. Leave the tarnish for yesterday.
Parkinson’s still sucks. Let’s make the best of it in 2021.
Today is Bob Torbeck’s birthday – my deceased father-in-law. As Cheryl remarked that today is Dad’s birthday I thought about posting “Happy Birthday, Bob!” on Facebook to see how many of the family might respond with thoughts and remembrances. When I woke up Facebook I found this from Ken my brother-in-law at the top of my “news feed”. It is a good remembrance.
Memory Lane is open and BUSY this weekend. Christmas is often a reflective time for me. The images from my childhood have filled my heart all weekend.
Today is my Dad’s 98th birthday. It’s the 43rd time that we’ve celebrated/ acknowledged it without him. Dad and Christmas memories are synonymous in many ways (for me). As a young(est) child our Santa came on Christmas Eve. I am quite certain that I was totally geeked out waiting for Dad to close up the gas station, come home, eat dinner, have a cigarette, more coffee, another cigarette, tease about what’s for dessert……finally slipping behind the heavy drapery that entombed our living room (seemed like for months), to THANK Santa for being so generous to us Torbeck’s. Once Santa noisily took off from our roof the wrapping paper was flying. And I remember Dad seated in the corner grinning ear to ear with tears in his eyes? Were they joyful tears bc we kids were SO happy? Tears of pride bc he worked crazy hours to beable to create such joy for our family of 8? Or was Dad sad that he couldn’t do more? Some combination? As a dad I have memories of crying for each of those reasons over the years.
Another Dad and Christmas memory is the Open House / Lunch at the gas station on Christmas Eve (afternoon). A huge spread of deli meats, cheeses and all the fixings from Ron and Angela Stafford ‘s grocery store. Pkgs of cookies and candies from Dad and Daniel Torbeck ‘s customers. All washed down with Seagram’s 7, Canadian Club and or Hudepol beer. Friends, neighbors and customers typically all in one! As I mentioned Dad and Christmas memories are often the same thing.
A trip to Oldenburg for lunch yesterday opened this flash flood of images and memories. As we drove through the town I wanted Jill Semple Torbeck to drive, in reverse to achieve the FULL rear facing, 3rd row seat, smooshed against the window experience of a trip to visit Cheryl Paul J Weisgerber at school 😎. (Pre I 74). Anyways HAPPY BIRTHDAY Dad! Merry Christmas Dad, Mom and Janice Torbeck Farmer ! Thanks for the memories! I miss you all. Hopefully you and Mom are getting caught up on your Jitterbuging.
Wow! Beautifully said!! Thanks for sharing your memories…. I only remember a few of the ones that you mentioned 🙄 I am always GRATEFUL to hear my family’s memories (my sibling’s and my children’s) bc I have so few 🙄 Love YOU and LOVE that you are so tender hearted, like our Dad was 😘❤️💚 I THINK that we had to sing too before the blanket came down 🤔☺️
Yes WOW is correct !!! Thanks for sharing those memories and reminding all of your siblings what a great life we experienced when that was all we knew. We did not realize how hard Dad worked until we were responsible for our own Families. I miss him every day that I go to work continuing the traditions that he taught me so many years ago. Thanks for sharing your Heart and Soul with all of us. Well Said Youngist Sibling. Merry Christmas to All and to All a Good Night !!! ❤️❤️❤️❤️❤️❤️❤️
Oh My Goodness! Thank you for sharing your heart felt childhood memories. You expressed them perfectly! I’m feeling all of the same thoughts and emotions! So grateful for all of our families many blessings! ❤️💝
Happy Birthday to you, Bob. Thanks for letting me drive the wagon. Thanks for not staying mad about no bumper guards on the VW. Thanks for the opportunity to clean the men’s room. Thanks for letting me earn a few bucks on the weekend. But most importantly thanks for bringing Cheryl into the world. Many times through life I have often wondered what was the purpose of it all and more importantly what was my purpose. The answer to that question recently has been made very clear to me. Thanks to you and Elaine for producing Cheryl as a product of your love. She consumes all of my love and life purpose now as you know, so, thanks Bob. As Ken said, I hope you are able to jitterbug into eternity and Happy Birthday to you!
Every time members of our family gets together, we have lots of fun. We don’t need board games or card games. We remember lots of events, and those memories breed more memories. Most of the time, the memories are triggered by a long-lost photo that we find when getting out the Christmas decorations. For instance, there is a memory I have that I have told many times over the years– it’s a good memory. I was probably 4 years old and Jan was probably 2 years old, and she had curly blond hair. I had straight brown hair. Mom wanted me to have curly hair. It was Christmas eve. Jan and I were supposed to take a nap. Mom used some metal curlers to curl my hair for the occasion. Then she put Jan and me to bed in Mom and Dad’s bed. At the time, their bedroom was separated from the living room by a set of sliding pocket doors. So Jan and I were told to go to sleep. Jan went to sleep almost right away, while I tossed and turned…wide awake! In the pocket doors there were a couple of key holes that were just high enough in the doors for me to look through. So, of course I peeked in, and there, across from the door, was a doll-size table and chairs, with a baby doll sitting on each chair! I just stood there staring at my new toys. Then suddenly Mom opened the door right in front of me. Then Mom gently scolded me, and told me to get back in bed. She said that Santa was in the kitchen, and he wouldn’t be happy if he saw that I was awake. I went right back to bed and kept quiet until it was time for supper. This is one of my fondest Christmas memories.
All of our memories are precious. We preserve people we love by remembering them. Sometimes the memories are so powerful they cloud reality. When I look at Cheryl I see a younger version of her.
Thanks Ken for your remembrance of your dad. Thanks for reminding me of those trips to Oldenburg. I am at peace today with everything.