Tiny Things Change from Day to Day

There are some really minute things that change with Parkinson’s disease. Many are really small and when those show up my immediate thought is, when did that become different.

Wash cloths in the shower, for example, have changed in number. In our old house after the kiddos moved out and started their lives and families, after we became empty nesters, we each had our own bathroom that we used. Upstairs is for her. Downstairs is for him and visitors. (How come I had to share my bathroom? — different question.)

There are some funny aspects to this. Cheryl has her mother’s knees and they were starting to give out along life’s way. The doctor told her that if you have a choice of stairs or the elevator pick the elevator or escalator. No kneeling in church either. Cheryl told the doctor, our bedroom is upstairs. He replied when you come down for the day stay down.

Over time I moved the guest bedroom upstairs to what was the boys bedroom. The guest bedroom downstairs I converted into her office and sewing room. I took over her old office area as mine upstairs adjacent to the upstairs bathroom far from the coffee but what the heck I didn’t used to have an office. I was a basement guy. In my male mind all was well. But her bathroom was upstairs. (smiley face) And although she spent a lot of time in her office sewing room she would go upstairs to the bathroom when that need arose. She rarely used the downstairs bathroom.

Cheryl and I have been married for more than fifty years and although I cannot point to the specific date when we started some particular habit, we started it somewhere in our lives. Thinking back we have known each other longer and I have lived with her longer than anyone else in our sphere and that includes her family and mine. A lot of habits and some traditions have been started and rejected along the way. Several years ago we mutually decided that it was time for a smaller flatter place. Between her knees and the parkieness our life was changing. We bought a condominium all on the same level. It has two bathrooms but the one next to the big bedroom has a swell walk-in shower. She hung one washcloth for her and one for me in the shower area. Done. We are moved in.

Why am I stuck on washcloths? I really do not know but there it is this morning while I am taking my shower; there are now three washcloths hanging in the shower. When did that change?

I get the red one.

Sometimes I want to become angry. Sometimes I want to laugh. Sometimes I want to cry.

Parkinson’s disease and PD with the added feature of Lewy body dementia is puzzling and it consumes a lot of hours for the care partner.

The washcloth thing is merely one of many.

Carpe Diem.

Not in a Long Time

Sometime ago about two years ago Cheryl struggled with fainting.  The neurologist blamed it on orthostatic hypotension and she does have some of that.  It is  measurable.  Her standing,  sitting and laying blood pressures are all different.  But two years or so she had fainting spells sitting at breakfast table after eating while working the puzzles in the newspaper. I got so used to it that I parked a pillow from the couch one one of kitchen chairs to be handy when I laid her on the floor.

Today we got up later than normal after Cheryl got meds on her 7AM schedule.  She washed her face, brushed her teeth and we had the church funeral discussion.  I made blueberry pancakes.  Her alarm went off for her 10AM Sinemet and Entacapon so she ate them with her vitamins and pancakes.

After eating I got cleaned up myself , sorted the laundry and dressed the bed. It is Friday (laundry and checkbook day). I got the washer started on the first load and staged the rest in the utility room near the washer. As I came back into the living area I noticed Cheryl seemed to be asleep in the chair by the kitchen table. She had fainted midmotion while removing the snap top of a container of crunchy snacks she intended to munch on while doing the puzzles. She was seated stiffly in the chair.

I got a pillow from the couch and laid it on floor and laid Cheryl down. She was stiff. I put her feet up on the chair. In the past she would wake up immediately after I laid her on the floor. She did not today.

This morning she laid there for awhile still out of it. It was unusual from a couple years ago. The stiffness was also unusual. Previously she was very limp. Eventually I was able to get her up off the floor and into a chair again. I got her walking frame but she was unable to pick it up off the floor. Tried to help but she kept pushing down instead of lifting up. It was as though her brain had the directions reversed. I got her to sit again and I got her transfer chair from the garage and with that I moved into the bedroom and got her to lie down.

She had very low blood pressure. We have meds for that. I gave her the 1PM dose of BP medicine at about 11AM and coaxed her to drink more water. I nagged and hounded her to drink more water, orange juice, tea, coke, whatever she wanted. There is a background theme of anxiety about incontinence at work here.

Eventually she came back and realized we had missed the mammogram appointment. We also missed chair yoga. We made it to the finger exercise class. The checkbook balanced and the laundry got done. All was well again. A few more steps down the road were behind us.

Carpe Diem.

Don’t Think, Just Do

Words from the Karate Kid and advice given to Drew on B-Positive tonight.

It is always possible the think and over think one’s situation and find a reason to not do something which could easily be very beneficial to one’s own well being. I discover this often with care giving to Cheryl.

Today Cheryl’s cousin-in-law (a relationship I just made up) made a very kind offer to me. Let me back up a bit, her CPAP machine bit the dust. She thought it was merely the cord but as it turned out it was dying long before it bit the dust completely. I brought it home to try to figure it out. Alas I could not. I do not have a manual or even know how it is supposed to operate.

She came to pick it up this morning and as she had never been to our home I showed her around and we chatted for a bit. I mentioned that I was taking Cheryl to her exercise class in about an hour. As she left I walked out to her car and she said that she did not live very far and if I needed someone to sit with Cheryl while I did something or wanted to ride my bike for exercise, she would do that.

I choked me up for a second. A kind and very generous offer of help, freely given, not requested, completely out of the blue. I sent her a text a while later and asked how much warning she might need to do that for me. She only needed a day or so warning and even suggested which days might be best. I thanked her profusely.

I do not ask for help with Cheryl, probably because my maleness gets in the way of that. I am planning, not thinking.

Some days the road seems smoother and less treacherous when you are not focused on the potholes coming up.

Carpe Diem.

Dinner with Friends

Yesterday evening we had dinner with friends.

Menu – Salad; White Bean and Whole Grain pasta soup from the MIND Diet (p. 208); homemade honey wheat bread; pumpkin bread for dessert

These days I get salad in a bag and cherry tomatoes in a package.  Using two varieties from Del Monte – fresh spring mix and garden mix, I put that together with a fresh cucumber and some sliced onion arranged nicely on top with a sprinkle of Tillamook sharp cheddar cheese.

The MIND Diet cookbook has some very good recipes.  I usually do not try new things out on guests but this recipe I had been wanting to try for sometime.  As with all soup recipes it makes more than Cheryl and I could eat at one or two meals so I selected our dinner guests as guinea pigs.  I wrote their comments in the cookbook pages above along with my modifications.

I do not have vegetable broth hanging out in my pantry.  I usually use chicken or beef broth alone or in combination in various soups and stews.  I do not know what rice consistency means so I took that to mean little pieces.  I chopped it into very small pieces with my favorite knife.

I decided that this soup would go well with my own version of honey wheat bread.  This bread I have made many times since I started baking in the late 1980’s.  This is the general ingredient list that I have settled on over time:

  • 2 cups of whole wheat flour
  • 1/2 cup of honey
  • 1/2 cup of unsalted butter
  • 2 teaspoons of salt (I use sea salt)
  • 2 cups of warm water
  • 4 1/2 teaspoons of dry yeast (I use yeast in a jar.)
  • enough bread flour to turn it into dough — typically 4 – 5 cups

Making bread for me is meditation.  It matters little what is going on around me, I am focused on the bread.  If anyone reading this has celiac disease, my heart goes out to you.  I my mind there is nothing better than fresh bread, slightly warm, from the oven.  And for me personally there is no more relaxing activity than making and baking bread.

I use a wonderful older model of KitchenAid mixer that I have had since 1980-something. It has a big stainless steel bowl and one cup of the whole wheat flour, the yeast and about 1/2 to 3/4 cup of water goes in the bowl first and is mixed.  I let this rest and the yeast grow for about fifteen to twenty minutes.  Bring a book.  You will have time to get into the story.  I put the butter, salt and the honey together with the rest of the water into the microwave for a bit to soften the butter.  Do not let it get too hot (less than 120F).

After it looks fluffy in the bowl I used a paddle mixer to mix the rest until the paddle no longer works.  I switch to a dough hook for the last mix.  Dump in the rest of the whole wheat flour and the water-honey-butter-salt solution into the bowl with the mixer running on low.  Add the white flour a cup or so at a time until the paddle is substituted for the dough hook.  The dough will hang onto the hook and wipe the inside of the bowl clean.  Stop adding flour and let the mixer run on two (2) for five more minutes.

Dump the dough out into a greased bowl. (I use lard but butter or Crisco will work.)  Cover the bowl with plastic wrap and set in a warm place to rise until doubled. (I use my oven with the light on.)  This takes about an hour.  Afterward punch the dough down and turn it over in the bowl.  Recover it and let it rise again.  It will be faster this time about 20 – 30 minutes.  After the second rise, dump it out onto the counter and split in two loaves.  Put each into a greased bread pan (5×9 inch) and let rise again for ten minutes or so. 

Preheat the oven to 375F.  Bake the loaves 15 minutes at 375 and then change the temperature to 350F.  Let bake for another 20 to 30 minutes until you like the color.  I usually take the loaves out of the pans in the oven and let bake without a pan for the last five minutes or so.  Let the loaves cool for about an hour before cutting.  Heaven.

From the Del Monte can

I have noticed that over time pumpkin is put into a 15.5 ounce can.  No matter the recipe still works.  She follows this recipe exactly. I had to make a special trip to the store for allspice. When I make pumpkin pie I do not use pumpkin pie spice. I used a combination of cinnamon, cloves and ginger I found in another cookbook, so, I did not know we were out.

Cheryl always makes a buttercream frosting for this before serving.  And since we can we put whipped cream on top. Yum.


Our friends came over because Bill was recently diagnosed with Parkinson’s disease.  It got me thinking about our situation and how lonely it felt at first when we started down this road.  We met Bill and his wife at an informational lecture at Parkinson Community Fitness. I decided to take it upon myself to intrude upon Bill’s life and talk about it.  I invited him and his wife to dinner.

It was a great time… but the conversation never drifted far from PD.

Carpe Diem.

Special – or not – Spaghetti Sauce

Every once in a while I get creative with the refrigerator contents.  Last evening I had some frozen butternut squash I had cut up and cubed a couple days previous.  Usually I roast this in a 400 degree oven with a little salt and pepper and olive oil for about  15-20 minutes but I decided to try something different.

I had also a 1/2 pound of ground beef. And I had a half jar of Barillo (12oz.) tomato basil sauce.  I took about a cup of butternut squash and simmered it in about a cup of water for about 15 minutes on top of the range.

When it was soft I poured off the water and smashed it into a pulp and dumped in the Barillo sauce. When I recover unused commercial sauce like this I often put a couple tablespoons of water in the jar to rinse the bottom, I poured this in as well. I added a pinch to a quarter teaspoon of red pepper.

I sauteed the ground beef with a little olive oil and rinsed it in a colander when it was browned. This removed some of the grease left from the saute. Cheryl has a hard time with any sort of greasy food. She likes it but about an hour later it gives her a lot of indigestion.

I added this to the sauce and let it simmer gently with the lid on for about 20 minutes.

While that was happening I got the water going for 4 ounces of spaghetti. When that was ready I plated it up.

I sprinkled a bit of grated Parmesan cheese on top.

She pronounced it good.

The picture at the top is not mine. It is from fitmencook.org. How cool is that? Perhaps I am a closet fit man. (smiley face here)

Carpe Diem.

Let’s Not be sad During Holidays

In a conversation tonight at dinner, Cheryl became very sad and longing for the past as we started to talk about the holidays coming up.  When we were younger we had this huge five bedroom house.  Everyone was welcome.  My mother and father were still alive.  Cheryl’s mother and her gentleman friend, Bob were still alive.  Dinners and holidays were loud and raucous with kids coming and going.  There was beer and wine.  My mother enjoyed gin and tonic.  I still order that in a restaurant as a tribute to Mom.  We longed for those days.  Cheryl became sad in remembrance of those times.

I suppose in a way I did too.

The only constant in life is change.  I do not remember if that comes from the Hindu or Buddhist religion but everything is in motion.  Embrace the change.  Make new memories.

If you let it over take you nostalgia can distract you from the present in much the same way that anxiety about the future does.  Most of us have little prescience of what comes next, so anxiety and worry is unwarranted.  Our personal history has been lived.  Focus on the now.

Many years ago I had a conversation with my father.   We had traveled to a local state park near a lake.  The idea was to let the kids run around and have a picnic.  We were at the little beach area alongside of the lake.  The kids were running around having a good time and after a few ounces of refreshments I needed the facilities as did Dad.  While standing and staring at the wall inside, my dad remarked that he wished he was a young man again.  I think he may have said, “I wish I was eighteen again.”  He was making reference to the young girls in their bikinis and his nostalgic memory of youth. 

I responded with, “Me, too! But probably for a different reason than you are thinking.”

“When I was eighteen I was still living in your house on your dime.  You used to give me money for gas.”, I told him. 

“Now I have a wife and three kids to take care of and support. I don’t regret any of that but it was a lot easier when you were taking care of me.” I said.

That is not the exact conversation but merely how I remember it. Dad smiled and remarked that he was not thinking about it that way. Everyone’s nostalgia is different. I had many life conversations with Dad.

Looking back occasionally gives perspective. I realized then that, although ten or fifteen years earlier my life was easier from my perspective, I would not change a thing that was happening now. My now was a wonderful wife, great kids, a wonderful family and a great outing with my children’s grandparents.

It is much the same now. Parkinson’s disease takes a lot of time and although I wish it was not. It is. I am constantly provided with opportunities to be a better husband. Do I want those opportunities? No, I do not but that does not change the fact that with a little bit of attitude change, a little change in perspective I am better at life with my care partner. This is a mutual effort.

So let’s not linger in nostalgic times. They were good times. They are not now times. They are past.

Carpe Diem