We Are Back to Stations

PCF classes involved moving from station to station before COVID. Stations are back today.

Godspeed Parkinson Community Fitness.

The stretching begins in a circle.

Start in a circle

And then move to station exercises. It was exhilarating. It was exhausting. Everyone got to get up and move.

PCF is back to almost normal. I had to get up and help.

God bless us all.

On Making Pies

Perhaps if one would choose, a bit more experience would precede making a pie for company.

About Thursday of last week, something she saw on television or read in the paper caused her to decide that she would make a pie for dessert on Sunday.

In her mind’s eye, it was no big deal. In her mind’s eye there is no Parkinson’s disease. In her mind’s eye she has plenty of stamina. On the way home from dinner at Through the Garden Restaurant on Friday evening we stopped at the grocery and bought some apples. On Saturday she cut up and peeled three of the four apples and had to sit down. I peeled and cut up the last one and another for just-in-case.

She took her meds and laid down for a bit. When she felt a little better, I made the crust under her tutelage. We (I) rolled it out and started over about a dozen times. I quit to put on shoes and gather my stuff for a trip to the store for a premade crust. On the way through the kitchen I stopped to try just once more with a twist.

My twist worked and we (I) assembled the pie.

Today we will take it to my son’s house to see how it turned out.

My other son’s wife is an expert pie maker. I probably should have subcontracted the pie to her and they live pretty close by. Maybe next time I will do this or maybe next time I will practice making crust.

Martha Stewart has a website full of ideas.

My pie – ready for transport

Carpe Diem!

Unsure of the Cause

In the middle of the night, very early morning, she gets up and becomes argumentative about staying up. Its about 3AM and I admit to being less than social at 3AM. Today for the first time she told me what was happening to her. She has severe leg cramps and partial immobility.

She has found that she can combat that feeling by struggling to get up and move around a bit.

I charged off on a search this morning with the internet of all knowledge and found this timely article at parkinsonsdisease.net [https://parkinsonsdisease.net/living/leg-pain].

…four types of leg pain in PD.

First type of leg pain is central pain

This pain is described as constant burning sensation with occasional burst of sharp pain. As it was in my case, this pain is commonly exacerbated by cold and by light touch. I could not stand the sheets to touch my skin and being in a cold room sent my pain through the roof. This type is usually bilateral but it may start on the side where other Parkinson’s symptoms begin. For me, it was the leg where my rest tremor began.

Second type of leg pain is caused by dystonia

When related to levodopa, it usually occurs as a wearing off but can also occur at peak dose. In most cases this leg pain is unilateral and has direct correlation to medication intake. When pain is due to dystonia, it is more common in early morning. This type of leg pain is usually accompanied by toes curling and foot abnormally posturing.

Third type of leg pain is musculoskeletal

Musculoskeletal pain occurs due to rigidity, abnormal posturing, and lack of mobility leading to pain in the legs. It may also affect the joint like the hip or knee. This pain is usually more pronounced on the more affected side. It can be localized or widespread and also can be sudden.

Fourth type of leg pain is radicular pain

In this case, the pain is caused by compression of nerves in lumbar area which results in weakness, numbness and tingling, and loss of reflexes from buttocks to foot in a distribution of a nerve. It can be acute or chronic, and can be worse with standing and sitting, or better with laying down. Of note: in my experience many patients including myself have these symptoms not because of physically herniated disc but rather by the stretching of a nerve in the canal as it exists due to severe musculoskeletal rigidity and abnormal posturing.

–Maria DeLeon


So there you are problem solved. 🙂 But – there is always a but – asked my wife of many years to read the referenced article and describe or discern as best she can the kind of pain she is feeling. Out comes a description of stabbing pain in her heals. In her words – like someone is stabbing pins into my foot.

So that sucks! Peripheral neuropathy can be related to Parkinson’s disease. Pardon my french but goddamn this disease. She often has numbness in her hands in the morning. It is hard for her some days to simply hold a spoon to put cereal in her mouth. I bought her four kangaroo cups (invented by a ten year old to help her grandpa) to help with her unsteadiness with the orange juice she has every morning. These work great and she likes them, so she uses them often.

Dealing with an ever changing range of symptoms, pains and degenerative cognition can wear one out.

Carpe Diem! I’m off to research different sorts of beds and mattresses, etc.

Double Red and Laura’s Legacy

Almost fifteen years ago this summer is the time that I found out that I was a match to my youngest sister Laura.  She had found out earlier in the year that she had Myelodysplastic syndrome.  Her body was turning on her.  She would die without treatment.  Then our whole family was still alive.

Mom and Dad still lived in their home in Madisonville.  My elder brother lived in Florida near Orlando with his wife.  My younger sister Joyce lived with her spouse in Portland Oregon.  Laura and her husband lived in south eastern Indiana and Cheryl and I lived in southwest Ohio in Cincinnati.  Now only Joyce and I are still alive.

I think of these things when I donate blood four times each year.   I ponder how long I can donate blood.  The only answer I get when I search for that information is, as long as you are healthy,  you can donate.

This started with Laura but I had donated blood before, just not on a regular basis. When I was in school at the University of Cincinnati in the last millennium an instructor whom many of us liked let slip some personal information about his family.  His son had been in an accident and needed blood donations.  Several of us went to Hoxworth to donate.  I was too young so permission had to be obtained from my parent. Looking back this detail seems odd. I was eighteen at the time.

With Laura’s diagnosis and need for blood stem cells all of us siblings were tested to see if any of us were a match. Only I was a match. I found this out from the nurse who called me as was driving back towards Boston from Cape Cod. We had gone there for a little vacation and to visit with friends. This was convenient for Laura and me as neither of us had to travel far to do this but I had to get home first.

The summer of 2007 was a long one for Laura and me. I cannot speak for Laura because she did not make it out the other side of the treatment process. I am changed forever.

The process takes several days. For me it involved a very thorough physical and several meetings with the medical folks at the end of which I was deemed healthy enough physically and mentally to go through the process. During one meeting with a nurse who also had background as a sociologist, I was made aware of the fact that there was a chance that during the implantation process my stem cells could take over her bone marrow and give rise to my immune system within her body and reject her. Not simply that it might not take and we would have a do over. My immune system would reject her. Seems like a bad thing to happen, to be rejected by your own immune system.

Blood stem cells are removed from the donor in two ways either directly from your hip or by apheresis . In Laura’s case they used apheresis to remove blood stem cells from me and gave them to her after killing off her bone marrow’s ability to produce blood cells. Over a period of several days – my memory tells me four – I was given an injection of some growth hormone that told my body to make way too many blasts (precursors of various blood cells). These leak out into the peripheral circulatory system and can be retrieved by an apheresis machine. It was a miserable four days. Not so much at first but they can give you the injection anywhere and I opted for my arm. I am pretty sure that this started on a Monday so we were ready to do the apheresis on Friday. The had to get the blasts out of me before my body reabsorbed them.

The apheresis process takes a bit of time also. I do not remember talking about the actual process at the beginning. I suspect that if the donors are given all the gruesome details at the start, some will back out. The process was generally described as similar to donating blood except that the stem cells would be removed and the rest of my blood would be given back to me.

An innocuous drawing

In this sketch you can see the general set up. Blood is removed from one arm and the returned processed blood is put into the other arm. Pick your nose, pee and fart before you get started because there is no moving around once the machine is running.

I asked the nurse technician who was monitoring the machine approximately how long it might take and she responded with eight to nine hours for the first session. She said sometimes they do not get enough the first time so they have to do it again to get more stem cells. I intermediately got up to find the men’s room and empty everything out and began to worry about how long my bladder would hold out. In the end it was not a concern. I suspect my kidneys did not understand what was happening so they elected to take a break for a few hours. I helped by not drinking anything of course but there was a bag of saline as a part of the process and some blood thinners to keep my blood from gumming up the pumps. Nine hours is a long time to sit.

Making conversation I asked how many cells they were trying to harvest. Ten to eleven million came the reply. I remember thinking that seems like a lot but I did not have any idea what they might need to do this. I was curious how they would figure out how many they had and she told me they would count them. It is amusing when you think about it. how else would you figure it out. Isolate a certain quantity of serum and under a microscope count the stem cells. Well, huh. Even an engineer can do that.

With all the needles and tubes in the correct position we started. I think the first session was about seven hours or so. There was a clock, one of those battery jobs, hanging on the wall opposite where I was sitting. What a poor place for an ineffective time keeper to hang. After five hours I was certain that it had slowed down. After six hours I was certain it had started running backwards ever so slowly. At the seven hour mark the stem cell bag which I estimated could easily hold a liter had a tiny amount of yellowish life saving liquid in it. The nurse pronounced it good and Cheryl took me home.

Oddly I was incredibly tired. I had not felt this exhausted before. I had not moved all day. But my blood did. It had been in and out of my body about ten times during the day. It was wore out. As I rested in my chair hovering between resting and sleep we got a call from the hospital, I needed to come back again for a second session. How many cells I asked. About four million was the answer. A disappointingly low number, I was certain that they would need two more times. I may have said shit out loud.

On the second day the procedure the was much faster. I spent approximately four hours in the chair with the stopped clock view. Often the donor’s body wakes up and puts more cells out there where the apheresis machine can find them. But that is not really why I am telling this story. There were several times during the next couple of weeks when I was called to go directly to Hoxworth to donate other bloods products to Laura. Platelets mostly as I recall. On a couple occasions I gave Laura platelets. I may have given her red blood cells also but I am unsure of that. She was busy staying alive and I was trying to help. All of these experiences got me used to the activity of donating blood.

I started doing this at the main Hoxworth Blood center near UC Hospital in Clifton and then later discovered that I could do this at another collection center in Blue Ash, Ohio. Once when I was there donating, the nurse technician asked me if I had ever considered giving a double red. After a discussion of what was entailed and other questions, I tried it.

This is Laura’s legacy. Her brother became so comfortable with donating he continues to do it fifteen years later.


I often think about Laura when I am sitting in the chair listening to the apheresis machine do its thing. There is no stupid clock to stare at. I know now how long it takes. It takes thirty to forty minutes. Sometimes it takes longer because the technician is often monitoring other donors. Most often I read a book on my tablet reader. Occasionally I listen to the patter of conversation around me.

Hoxworth is actively soliciting folks who have had SARS CoV2 disease because their blood contains substances that can help those who are recovering from that disease. These folks sit across from where I am donating.

Over the weekend the reward for donating was a free T-shirt. Free t-shirts were the give away today, Easter Monday also. I selected a St. Patrick’s Day themed shirt. It is in the picture.


Laura’s recovery was long and arduous and fraught with disaster. She spent about six weeks in a coma as doctors tried to discover the source of her liver inflammation. Veno-Occlusive disease was the suspected culprit.

Hepatic Veno-Occlusive Disease (VOD) AKA: Sinusoidal Obstruction Syndrome is a well recognized complication and leading cause of mortality in hematopoietic stem cell transplant resulting from severe hepatocellular necrosis and hepatic vascular congestion. — This is from a medical teaching website. Laura and I both read about it in a big white binder that she had gotten at the beginning of her process. I remember her looking at me that first afternoon with her yellowish face telling me that there was about a 3% recovery rate. Pretty crappy odds she said. She was a CPA and the controller of a small successful beverage distributor. She knew about numbers analysis and crappy odds.

It was not that. Eventually the doctors discovered that Laura was having a bad reaction to the antibiotics given to her as a prophylactic to infection while my stem cells were taking over. She did recover but six weeks asleep devastated her body. During a visit at the holidays she told me that my stem cells had populated her bone marrow and was doing fine. A few weeks later she succumbed to pneumonia that could not be treated in the conventional way because of her problems with antibiotics.

Laura died with a part of me in her. Part of me died when she passed out of existence in early 2008. Watching someone whom you worked so hard to save take their last breath is a profoundly life altering experience. I hope to never participate in an experience like that again.

How do you Pick Yourself Up? (2)

A birthday picnic is a great way to do that. So, I reserved the picnic shelter in the upper left of this aerial photo to celebrate Cheryl’s (Grandma’s) birthday this year. If I can get all of her kids and grand kids and step grand kids all in one spot, she will be satisfied and happy.

Cheryl’s birthday often coincides with Mother’s Day. That always comes up when I suggest that we have dinner, a picnic or some other thing to celebrate her birthday. “You know that’s Mother’s Day? Right?”, she will say. Actually I never think about Mother’s Day, Father’s Day, Sweetest Day, Valentine’s Day, Sibling’s Day, Cousin’s Day or any of those other made up holidays. A curmudgeonly attitude to be sure, but personally I blame date dyslexia.

This year we are going to celebrate Cheryl’s birthday regardless of whatever else may be going on around us.

Maybe some of those other folks that have their own day will stop by to celebrate Cheryl Day with us.

Parkinson’s disease slows everything down so that many activities are hard. Just bull your way through that and do it anyway. Carpe the damn Diem.

Some Days are just Slow

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

From https://thesaltymarshmallow.com/creamy-parmesan-one-pot-chicken-rice/ Creamy Parmesan One Pot Chicken and Rice is a creamy chicken and rice recipe made easy! The best chicken and rice full of juicy chicken and cheese! Could this be the winner?

  • 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.

Optimism about Things

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.

Contagious Optimism

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 a new day. — Emerson

Love Stories Make Me Cry

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.

It is the Little Things

Glasses piling up on the counter

Most little things are not important to care about.  Our niece, Natalie, who cleans for us once said you are neat people in response to a comment from Cheryl about how quick and efficient she is at cleaning our place.  She is right about that Cheryl and I are neat people generally.  Clutter of newspapers and magazines will appear during the week but by weekend they are in the recycle bin.  I get up and make the bed every day.  While I am cooking dinner which is something I find myself doing more and more often these days, I put things in the dishwasher as I complete a task. We put the dishes in the dishwasher right after using them. 

I’m not big on dusting  which is why I hired Natalie to do that for me but since she has been dusting and cleaning every couple weeks, I have spent time spiffing up my office.  Lately I have noticed a slight changes here and there with Cheryl’s behavior about neatness.  It seems to be another sign of the degradation of mind caused by the Parkinson’s disease.  Something else for the caregiver to do.

The inconsistency of PD is often confusing to me and always frustrating for Cheryl.  I have mentioned this before.  Paul McCartney  has a new album out and on it a song titled “Seize the Day”.  Absolutely one should seize the day but often with a parkie one must seize the moment.  Her day might be disconnected from reality one moment and acutely aware twenty minutes later.

Mail… junk mail

As one gets older the junk mail increases. At least that is my perception. Cheryl used to be able to discriminate junk mail advertising and new credit card offers without opening the envelope. These days each envelope is opened and ruminated over. I think that’s how the Readers Digest started to get delivered. She may have asked me in a weak moment – Do you like Readers Digest? The subscription has been renewed until 2025 or so. Oh well. It was cheap.

Perpetual Christmas card list

Finally it is the end of an excruciating three weeks of getting the Christmas card list in order and sending them out. Cheryl has been looking at printing out and re-looking at the list of addresses she has from 2018, 2019 and edits from this year. This is all made so much harder by the fact that the original list of addresses is kept in an Access database which makes little sense to me. The list itself is a couple names short of 100. Both Aunt Alberta the last of my father’s core family and Aunt Ruth the last of my mother’s core family have passed away in the past twelve or thirteen months. Cheryl’s sister Janice is also gone, as is my brother Bill. Things need to be adjusted.

This exercise is more than just making sure that the address list is accurate.  It is a time to think about those folks. Maybe a letter is needed for the card.  Maybe a phone call is needed to get current.  To me it’s about the list. To Cheryl it is more than that. The sewing machine becomes desk to finish off the last 30 or so cards that require extra thought. Lots of distractions jump in the way of sorting through these last cards.

Is this one of those “Aha” moments that a Facebook friend talks about? Aha! She is not able to focus her thoughts long enough to ask for help. When she asks for aid, it is very hard to understand when I must not push back when she wants to do it differently. I was not able to accept micromanagement in my working career either. This is frustrating. There are four more addresses to go.

We wrote a generic message to those who were left to go. We did this in the car riding to visit my son yesterday. Today when I asked her for the notes she took so I could write it up, she did not know what I was talking about. I had to be very specific in my discussion. But we got there. This is the note:


I have written this short note to everyone on my Christmas card list. My Parkinson’s disease is making typing and writing more difficult as time progresses. So, even though I would like to write a longer note, I cannot do it. I do want to find out how everyone is doing this year, so, if you are interested please send a text message to 5——–0 or email to me@Gmail.com and Paul will set up a Zoom meeting to keep in touch.

Thanks to you all and have a very Merry Christmas!

Cheryl

printed 6 to a page

I probably spend too much time trying to understand why I am angry (at myself) and frustrated (with myself) about a stupid list of addresses. I printed the labels – weeks ago. I just went in to check on the last four. She is handwriting an address for a fifth one to someone not on the list at all. Carpe Diem…

Questions

In a Facebook Parkinson’s disease caregiver’s group – a person asked in a posting if anyone else got driven crazy with questions.  I am not.  I wish I was.  Occasionally she will wander down a rabbit hole and come out the other side anxious about loosing a piece of information, email draft, telephone number or address.

What day is this? Is Scott going with us? What do you think Jan wants on her pizza? Are we staying here or can we go home? Did that guy bring my pills yet? … I do get these sorts of questions.

There is very little straight line activity in Cheryl’s world. Her world has many distractions along the way.

I have read and re-read this several times. I am whining but there it is – a couple weeks in the life of a PD caregiver. It certainly is an odd disease. And it sucks!

This particular image has nothing whatever to do with anything I have written here but amusement parks used to have photo booths in them. Remember photo booths?

Two Young People in Love OR We had Dark Hair Then

There is no value to looking backward in time. It is, however, enjoyable to reminisce about days gone by.