The single most important thing for a Parkinson’s patient can do to improve their mood, movement, emotions, strength and well being is exercise. For a normal person this is a merely a scheduling activity. For a Parkinson’s patient it is difficult.
Complicated for someone who never did sports at all. A former sports person would be resolute in their efforts. They would have had that former experience in their life of exercise and training that keeps telling them that it will be useful. Perhaps they had to train to recover from an injury. Perhaps they wanted to hit more three-point shots in basketball. Perhaps they wanted to hit the ball a little straighter in golf. Perhaps they wanted to strike out that guy who hit it over the center field fence the last time they pitched to him.
For a parkie it is a matter of walking to the sink to get a glass of water.
LSVT Big is a therapy for getting Parkinson’s patients moving again and keeps them moving. The exercises seem simple to a person who has no difficulty with movement. After twelve or fifteen years of effort she is more resolute than ever to keep exercising.
But it requires organization and her mind refuses to cooperate.
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.
An update to the story — The bottom line of the puzzle has appeared out of the sorting process.
She has decided that she will work puzzles as a hobby and diversion. I bought her a 500 piece puzzle to do. To tell the tale properly I have to go back about two years. We were Christmas shopping for the grand kids. We had passed by some puzzles in Barnes & Noble. She remarked that there was a woman at Bridgeway Point a local assisted living facility where her mom had been living until she passed away the previous year. And that she would like to get one to try it. She thought it might be fun to do.
We bought a 500 piece puzzle with a busy image of cars and buildings and dark sky with stars. We brought it home and it sat in the corner where Santa stores stuff for wrapping. After Santa wrapped the presents for the grand kids the puzzle box remained there for two more years until this past covid infested January. The puzzle discussion came back. I knew exactly where it was because Santa had not moved it in two years of wrapping.
Oh good! There it is! Where can I do it? I remarked that she could do it on the dining room table. I did not think anyone would disturb it. Only we live here.
What if Zachary comes over? Well, I do not know.
Your cousin John had a special table to put his puzzles on. It folds up when he wants to put them away. I said I would look into it. Then I bought a special mat to puzzle on. It arrived about a week and a half ago. This is a slow motion activity. One day this past week I blew up the balloon that it rolls around while watching the birds attack the snow covered feeder.
It is useful and has outlines of various puzzle sizes. Never mind that her puzzle is 20 inches by 20 inches when complete and it does not have that size printed on it.
As she stared at the rectangles printed onto the mat we had long animated discussions about how to do it. She wanted to find the center most piece and build outward. I suggested that that would work but it will be easier to find the edge and corner pieces and work in but it was up to her. Whatever she thought was best for her to do, I said.
She has decided to initially separate the pieces into groups of her own design. Edge pieces in one pile, Red here in this pile, yellow in this pile and on. I need some plastic bowls with lids that fit. I tried to purge the kitchen cabinet of the leftover bowls that went through the dishwasher one to many times and were warped by the heat.
These are okay but the lids do not fit. I need the lids to fit.
The mat is supposed to roll everything up I said. Yes, she said but I need some bowls with lids that fit until I roll the mat up. I am in the midst of hunting on Amazon for bowls with lids that fit. Looks like I can get these preloaded with cookies. That would be a real bonus.
It is interesting how a parkie mind works or doesn’t work. I am still waiting to see how the puzzle gets started.
So far we have two bowls, a box and a zip lock bag. The mat is rolled up nicely by itself.
I have date dyslexia. There is no such thing! I hear you saying that. And maybe there is not a definitive malady called date dyslexia but I describe it thus. I know my wife’s birthday. It is May 10. On May first, I will think Cheryl’s birthday is coming, perhaps I should find a present or order some flowers and then I put that thought aside. On May second, I will think Cheryl’s birthday is coming, perhaps I should find a present or order some flowers and then I put that thought aside. On May third, I will think Cheryl’s birthday is coming, perhaps I should find a present or order some flowers and then I put that thought aside. At this point I am sure you can understand where this process is going. On May ninth, I will think Cheryl’s birthday is coming, perhaps I should find a present or order some flowers and then I put that thought aside with no more urgency than May first.
I know when her birthday is but I have no concept of whether that is a couple days away, a week away or a month away. Actually months are easy because they have different names. Over the years I have employed various devices to overcome this dilemma and I became quite good at fixing it in my business life and when Bill Gates and the boys invented Outlook, let’s just say, it was a dream solution. Now, however, I am retired and do not own Outlook on any home computer or computer-like device. We do have a wall calendar and I have a desk calendar given to me by our financial champions who manage our affairs. These two devices give a visual image of the map of the month and where activities lie within it. All that is necessary is to look at one or both calendars. If only it was that easy.
One of the symptoms of Cheryl’s Parkinson’s disease is confusion about time of day, day of the week, week of the month. Sometimes looking at a calendar – I think of the wall calendar as hers and the desk calendar as mine – specifically the wall calendar does not enable her to get her bearings about where we are in the months activities. This is bad news for me because she was the anchor of our family and social activities throughout our life. Countless times I have had to cancel plans made with my buddies after discovering that my golf game, beer bash or something was going to clash with another prior event scheduled on the calendar. No more! The guy with date dyslexia is left to manage the wall calendar events. Woe is us!
Winter in Ohio
It is winter in Ohio and in southern Ohio that means occasional visits with the white death of snow. Good news for the bakeries and dairy farmers. Bad news for the schedulers of doctor visits and for school administrators not as bad as it could be given the current stay at home covid climate.
What’s happening this week? – is the often asked question while she is staring at the calendar in the hallway. I responded with, “nothing today but tomorrow you will get your covid booster shot.” Spoken by the guy with date dyslexia. She responded with, “no it’s not.”
I had been concerned with the relentless weather reporting of inches and inches and maybe feet of snowfall predicted for the southwestern part of Ohio. I was worried about the second booster shot and making sure she was there to get it. I help out part time at a local community college and had already forewarned them that this booster appointment was going to affect my availability this week. As I walked up behind her to view the map of the month she and I both realized that she was tuned into the correct week after all and I had mentally moved her booster appointment up by a week.
I laughed at myself. Today she has both oars in the water. And my dyslexia was still active.
For me as a care giver to Cheryl, it is a stresser. Perhaps I need to lighten up and realize that I signed up for text message alerts about appointments. All would be well with the date dyslexic disability.
Sometimes with Parkinson’s the caregiver becomes the caregivee.
Some days are in fact slow days and if all goes well they stay that way. It is a good winter Saturday to look for a new chicken recipe.
From Campbell’s Soup:
1 can (10 1/2 ounces) Campbell’s® Condensed Cream of Mushroom Soup or 98% Fat Free Cream of Mushroom Soup
1 cup water
3/4 cup uncooked long grain white rice
1/4 teaspoon paprika
1/4 teaspoon ground black pepper
1 1/4 pounds skinless, boneless chicken breast halves
Hmm. In the comments – …made this dish for 25 years, I double the recipe, only I use 2c instant rice, 2 family size cans of Campbell’s Cream of Mushroom soup, and instead of paprika I use Lemon pepper. I also rub my chicken with the Lemon pepper. It’s a family favorite.
I am pretty sure I have lemon pepper. I am, however, unsure of the vintage.
From https://iowagirleats.com/one-pot-chicken-and-rice/ One-Pot Chicken and Rice is part soup, part risotto, and wholly comforting. Your family will ask for this easy yet irresistible gluten free dinner recipe again and again. Maybe so, but there are only two of us so I will see if it is modifiable.
4 – 6 Tablespoons butter or vegan butter, divided
1 heaping cup chopped carrots (from 1 cup baby carrots or 2 large carrots)
homemade seasoned salt and pepper (see notes)
2 scant cups long grain white rice (I like Lundberg White Jasmine Rice)
1 Tablespoon dried minced onion
1 teaspoon dried minced garlic
2 Tablespoons dried parsley flakes
8 cups gluten free chicken stock
2 small chicken breasts (14oz), cut into bite-sized pieces
1.5 Pounds Chicken Breasts, Cut into 1 inch pieces
4 Tablespoons Butter
1 Large onion, Diced
3 Cloves Garlic, Minced (3 Teaspoons)
2 Teaspoons Italian Seasoning
½ Teaspoon Pepper
1 Teaspoon Salt
2 ½ Cups Chicken Broth
1 Cup long grain white rice
½ Cup Heavy Cream
½ Cup Freshly Grated Parmesan Cheese
Parsley for serving, Optional
Heat the butter in a large skillet over medium high heat. Add the onion and cook for 2-3 minutes, until beginning to soften.
Add the diced chicken to the pan along with the Italian seasoning, pepper, and salt.
Cook and stir for 5 minutes until chicken is golden on all sides.
Add the garlic and cook for one more minute, stirring constantly.
Add the chicken broth and rice to the pan and stir.
Bring to a boil, then reduce the heat to medium low.
Cover with a lid and simmer for 17-20 minutes, until rice is completely tender.
Stir in the heavy cream and parmesan. Serve immediately topped with parsley if desired.
One half of a cup of heavy cream? None of that in the fridge, perhaps I will substitute sour cream and a couple tablespoons of milk. I will probably garnish with mozzarella cheese. For two I ended up with:
1 Chicken Breast (about 7 oz. – chickens are big these days.) cut into 1 inch pieces
2 Tablespoons olive oil
1/2 onion, diced
Garlic, minced (1 1/2 Teaspoons – I buy this in a jar which is really handy.)
1 teaspoon Italian Seasoning (or Herbes de Provinence)
1/4 teaspoon Pepper
1/2 teaspoon Salt
1 Cup Chicken Broth
1/2 Cup long grain white rice
1/4 Cup Sour cream
1/4 Cup Grated Parmesan Cheese
Garnish with shredded mozzarella
Or pea soup could be a substitute for all of this. I made pea soup with ham two days ago. We had some for dinner with an excellent dessert, blueberry pound cake and fruit. There are two more bowls of pea soup in the fridge waiting patiently to be eaten as left overs. Pea soup like lasagna only gets better with age in the fridge.
So maybe pea soup and sandwiches for dinner. Perhaps I should pick out a dessert first.
The best part about slow days is shopping for dessert and dinner. Parkinson’s disease can enable one to appreciate the small things.
A simple batter cake dessert will perk up any parkie’s day. The last few times that I have made dinner I have taken the time to make a dessert. If that is a cake or anything other than ice cream and cookies, I start it first. Today I suggested another pound cake. Last time I bought any pound cake box mixes I bought four of them. I probably bought them at Walmart or on line from Amazon. I do not remember but this time when I suggested that and was holding a can of cherries thinking about how to jazz up the dessert, she says – I could make the cobbler recipe.
In our early days of marriage I was a student at Miami University. Neither Cheryl nor I was much of a cook so the Betty Crocker Dinner for Two cookbook was a bible to her. At the time I was less interested in cooking but more interested in eating. (and beer if someone else was paying for it.) College life as a married student was great. In addition to Betty Crocker we gathered recipes from friends and other sources. Some were disasters.
There was a spaghetti and hot dog recipe out of a church recipe book which was particularly offensive. Made more so by the fact that it made a lot of stuff so we kept trying to dress it up and make it more palatable when we reheated it as left overs. It is a fond remembrance of a disaster. We were young and poor. We did not throw food out unless it fell in the dirt and was unrecoverable.
The easy cobbler recipe came from the wife of a fellow married student. There were few of us on campus. Looking back it is remarkable that we found each other. But we did and they invited us to dinner one evening. They had a house in a nearby town. Janet made this recipe for dessert and Cheryl liked it and asked for the recipe. That was fifty years ago and she has made it many times since. Over the years she typed it into some word processor and printed it out. The original hand written recipe is stapled to the back. It works with any canned pie filling but we usually make it with cherries – Cheryl’s favorite. (Except if our grandson Gavin is coming for dinner. See grandma’s note above.)
I am unenthusiastic about this particular dessert. I do not know why. It is not bad it merely does not excite me as it does Cheryl. But it is simple to execute. I should have taken a picture of it before it went into the oven but I did not. Find your favorite mixing bowl and put in all the dry ingredients. I used a whisk to mix the dry ingredients first. I then made a depression in the middle and added the melted butter (or margarine.) I poured a bit of the milk in and mixed it with a handheld mixer and added the rest of the milk as I went along to make a medium runny batter that poured easily into the greased (Crisco or lard) 8″ x 8″ aluminum cake pan. The pan in the picture is of the same vintage as the recipe. (smiley face here)
We are having this dessert with spaghetti and meatballs, except I substituted pasta shells for spaghetti. As you can see below right, some of us like whipped cream on our dessert. I can personally attest to the great improvement by the addition of whipped cream. Vanilla ice cream, however, is even better.
It is February in Ohio and the birds are really attacking the feeder. We are safe and warm inside with comfort food and her favorite dessert. What could be better?