health

Parkinson’s Help

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I had a long conversation with a member of our Parkinson’s support group today. She called mostly to talk about her husband who has Parkinson’s disease (PD). And the struggles she was having as a caregiver with Parkinson’s disease care management. We talked for a long, long time. Maybe half hour, 45 minutes she was on the phone. She was pretty forthcoming, with lots of things that she was dealing within her life, I was surprised by the call and I don’t know why but I am glad she reached out and I was able to give her an ear. Afterward it made me feel good. It made me feel sad for her.

It made me think…

Think a lot about Cheryl and how I dealt with helping her deal with her disease. She had a lot of the same issues Bev was talking about. Her stories were remarkably similar to my memories of that time in our life.
Bev is dealing with it (Parkinson’s in her husband) right now. With her husband her description is very, very similar to where Cheryl was maybe 2 years or so before the end of her life. The parallels are really striking. Bev was telling me that they moved into the condo that they are now living in about 5 years ago. (Same for us.) Mostly because it was getting harder and harder for her husband. He always, you know, mowed the lawn. And he did the maintenance kind of activities that you have with the house.

She went on and on to tell me lots of stories about things and I think I’ll have to think about them for a while. But the but the whole story line is so remarkably similar and so sad and well, maybe not sad, but but frustrating, you know, the disease just kind of consumes your whole relationship with with your spouse, they’ve been married a long time too.

They’ve been married about 35 years. They were together 3 or 4 years before that. Cheryl and I were married 53 years and we had been together for 4 years before that, it’s just incredible how similar the stories are.

Anyway, I needed to take time away from what I was doing here in my class management at the Mason campus of Sinclair College. I had to go have lunch somewhere where I could sit quietly and think about things and grade papers and take my mind off of that phone conversation and the memories it conjured. That was such a debilitating part of my life and Cheryl’s. It was so all-consuming. I think that’s what gets missed when people talk about care. Giving it is so all-consuming, slow moving, frustrating and then people will still say, “Well you’re blessed to have her or your blessed to have him. There’s no fucking blessed going on in that whole Parkinson’s/dementia thing.

Just.

Not.

Happening.

Bev did tell me one other useful thing. Her family doctor told her that she needs to go outside and take a walk everyday. No phones, no music, no nothing, you need to go out and listen to the birds, enjoy the sunshine. If there is no sunshine, enjoy the rain, if there is rain take an umbrella, but for 30 minutes a day, you got to just walk away from everything, get rid of the stress, let it go. That is absolutely the best advice I’ve ever heard anybody say to anybody else about this horrible disease of Parkinson’s. It truly is a horrible disease. I remarked to her that it was the best piece of advice I had ever heard. (I got away to ride my bike whenever I could.)

Not only does PD make it so that you can’t get around easily. It’s a brain disease, so lots of times the brain goes wacko. He or she becomes a whole different person. Bev was actually talking about that too.

She and I commiserated for a bit; they like us have been married a long time. All the early on things that they and we had. They had a really good life up until just a few years ago, when she thinks he really went downhill in a hurry. But that kind of story is just so common, and somehow doctors aren’t able to describe the signs to the care partner. It seems almost like you would need to have a psychiatric version of Parkinson’s doctor. PD is a movement disorder, so one seeks out a movement disorder specialist but probably one also needs a brain specialist or its psychiatric personality disorder specialist, in other words, a brain guy to to talk about some of these issues. The sad thing is the person with Parkinson’s disease doesn’t recognize what is actually going on. The person helping a person with a dementia issue, of course, is struggling to do the right thing to get the best care. Those around him or her (the family) without the lived experience, those that aren’t dealing with it on a day to day basis, they think that everything is generally okay, because the PD person the demented person is able to actually keep it together for an hour or 2 or whatever it takes to get through the party or the social activity, and so, those people, that part of the family who is not living there does not get to see the whole picture.

They think everything is fine or mostly fine.

Whoever it is, is obviously ill with PD and can’t move so good. Maybe they look old and got arthritis…

So many things are invisible. They cannot be seen. Or we choose to not see.

Carpe Diem

Exercise, Personality and Riding

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I suspect that few reading this will care much but I will tell you about it anyway. In a short little piece this morning on CBS, Tony talked about exercise and matching exercise to your personality. The researchers thought is that if you match your exercise to your personality trait(s) you are more likely to continue it whatever it is. In the Telegraph article that Tony was citing, they used the Big 5 model, a psychological framework, to find participants’ dominant personality traits.

I have been interested in psychology and personality for a long time. That interest was rekindled when I went for my M Ed. A few years ago. Hanging with Debbie has rekindled my interest again.

The Big Five model further divides each of the 5 into two as follows:

1) Conscientiousness – industriousness (a self-disciplined and efficient attitude) and orderliness (tidiness and a routine-based lifestyle). I make the bed every morning.

2) Extroversion – enthusiasm (friendly, sociable outlook) and assertiveness (an ambitious and socially dominant attitude) I greet total strangers with a smile.

3) Agreeableness – compassion (caring for and about others) and politeness. I care about how my kids are doing and I like to open the car door for Debbie.

4) Openness to experience – intellect (competence and quickness to understand) and general openness (a creative, imaginative and reflective outlook) Debbie and I have been to many different restaurants and are exploring various soft serve ice cream stands. We call them field trips.

5) Neuroticism – withdrawal (feeling discouraged and self-conscious) and volatility of mood. Sometimes in the afternoon I take a nap. Naps are healthy.

Two qualities, enthusiasm and positive thinking, in other words, scoring low on the withdrawal aspect of neuroticism were the key factors for happiness. The traits most strongly linked to numerous measures of well being include; life satisfaction, self-acceptance, and a sense of mastery and direction in life.

What’s this have to do with exercise? The study sample size was small. Less than 200 participated. In addition, only 70% or so of the initial group completed the follow up survey at the end. So proof! Any meaningful data dissipated rapidly but Tony talked about it anyway. His graphic showed a bicycle rider. The picture reminded me that it is my favorite exercise. I wondered if it fit my personality traits.

I became interested in this so I found the Frontiers in Psychology website and started looking for the article itself. I couldn’t really find the article but it was a very small study. I found this reference to it in the Guardian. I misheard Tony. It was a University College of London study of 132 folks who were invited to join in a survey. The article is humorous.

I still like to ride on the bike trail by myself. Others like to ride in groups. I listen to music or a book or a podcast or the birds while I ride along. I prefer the aloneness of riding. When I was caring for Cheryl it took me away from the heartache of that activity. The summer after she died, it took my heart to a different place much like meditation. This summer it is hot but it has developed into a hobby and an interest that simply gets me outdoors.

I do not think I am neurotic. (I hope the Guardian link works.)

Carpe Diem.

Toaster Ovens

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Far be it from me to criticize the American appliance industry but I often wonder what jumped into the engineering head of folks who decided a toaster oven was a much needed appliance.  Having a small oven is handy in its own way but why call it a toaster? Why temp us toast lovers with the ability to get warm morning toast when one actually gets the stale bread a week later.

Indeed toasted bread can be achieved in several different ways with one critical ingredient, great heat applied for a short or relatively short period of time. Toaster ovens are unable to do either. Generally they fit into the vast category of “Almost A Great Idea” or AAGI (aw-gee) for short. At one time in the past we owned a toaster oven which also had the ability to roast a chicken. It had a built in rotisserie gizmo to spear the chicken with and rotate through the meager heat source. (aw-gee) After much trial and error we determined that the timer needed to be able to set itself to much more than the 45 minutes on the dial. The heat source warm up is include in this time since it is not instant on. (Alas and aw-gee)

Many devices fit into AAGI. Instapots and Airfriers might be two more. But often it is fun and necessary to use a device with a small heat source that supplies invaluable cleaning expertise and practice.

Microwave ovens supply this valuable expertise as they are able to rapidly take water from liquid to gas in a rice-sized pocket spreading soup or any other suitable substance over the entire inner surface while keeping the rest of the bowl at the temperature of a standard refrigerator. They are remarkable devices. If you ever require rubberized eggs for any recipe, a low wattage microwave is just the perfect solution.

All of these thoughts came to over the past several days as I pondered another stale bread morning in my nephew’s beautiful, quaint and cute little bungalow in Port St. Joe, Florida. My sister and my girlfriend and I spent three wonderful days there this past week.

We drove in my car so we did not have the wonderful packing experience of making everything fit into one suitcase. We took our time. We stopped occasionally to look for best toilet facilities. We visited Bukee’s in Alabama. No soft serve ice cream at Bukee’s which is a sad state of affairs. (aw-gee) We stopped at the Shrimp Lady which claims to be restaurant-ish on Google Maps. It is not but we bought 2 pounds of shrimps as big as my thumb that came off the boat 20 – 30 minutes previously. Over the next couple of days we ate them as shrimp and cheesy grits, and shrimp with garlic, onion, green pepper and spaghetti with marinara and generous Parmesan cheese.

Did the two most important women in my life just bring me along to cook and drive the car? It was a great trip.

Back to the toaster oven. It is a fine device in its own way but entirely unsatisfactory for making toast in the morning. The Nespresso Virtuo, however, makes excellent coffee one cup at a time, every time, as long as the special pods and a water source are nearby. Foamy luxurious coffee.

We are back home in Ohio. The forsythia in the back is just opening itself. The daffodils are poking up and wondering what the forsythia can see that they cannot. The forest view through my window is greenish against the browns and grayness.

Daylight saving? Time is here. And as Debbie says, “the light is returning to the planet”

I am off to ponder a method of saving the daylight and fold the laundry from the trip.

Carpe Diem.

Be It Resolved

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This time of year many make resolutions for the new year. Me too, of course. My resolution to myself is to be a better me. And I have no idea what that means. Yet, the idea that I want to be a better me implies I know myself now and there are improvements that can be made for the better.

Do we ever really know ourselves? How old does one have to be before acceptance as is becomes the norm?

This past year as I passed through three quarters of a century and Cheryl did not, I began to emerge from a deep funk, a depression, the sadness of her death, the gladness of her death, half a decade of overwhelming anxiety about her care and looked toward an open road and at the new sunrise and wondered, what next?

A new person entered my life who knows me only as me, a man, single, a writer that exposes his emotions to the world, who tries to be of service to others around him, and maybe shares too much of himself. She does not seem to mind my nuances of self. Like everyone I have many of those nuances, sides, aspects. We seem to fit.

Another resolution, perhaps a better one is; stay in the moment. Being a better me is a look into the past and attempting to improve. Staying in the moment is not looking back. Nor is it planning for some future that may not come. For now fitting is enough.

These are thoughts that come to me as I think about a new relationship.

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

Thanks Max for reminding me about life.

Carpe Diem.

Habits, Routines, Small Adjustments, Change and Growth

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This morning I restarted my morning chair yoga exercise routine. This morning I restarted morning meditation. Two things I notice: I have a pleasant gentle ache in various muscles from the stretching exercise, I did not hear the tinnitus in my ears while focused on breathing. These came to me as I sat across the room to revisit that short experience and my sense of time passing so slowly dissipated while I did these activities. My timer seemed to announce completion after a mere ten milliseconds instead of minutes from when I started it.

Time compressed. Where am I going? What am I hunting for?

Good health and peace in my soul is my spontaneous answer to the second question. Does going mean physically moving and travel to somewhere? Or is it internal? Some of each? Neither?

When Cheryl was still alive and with me here at home, I began to worry that my own health and well being suffered because I was totally focused on her health, what she ate, how much she ate, her mobility, her balance, her attention, her memories, her perception, her moods, her bowel urges. I rejected concern for myself.

Much of that concern then is useful for me now. Now I am focused on my health, what I eat, how much I eat, my mobility, my balance, my attention, my memories, my perception, my moods, my bowel urges. I think older folks focus too much on bowel urges. At the same time it seems important to note what foods that used to be favorites no longer seem to be tolerated as well as they once were.

When Cheryl was still here I began and kept up for many months an early morning routine of chair yoga. I bought a book. (I am always hunting for the manual.) I found the book back this morning after I finished my ten minute scheme to start. The exercises are simple and directions have illustrations. (YouTube has plenty of these but as soon as one gets into the zen, the calm, the mood, some extra-volume political message appears and phffst, just like that zen is destroyed. For an unreasonable sum, YouTube is ad free.)

Facebook shows me advertisements for an app with some 90-something guy with great abs doing chair exercises too. Those are amusing and laughable and less obnoxious and quieter. Welcome to the world of zen and social media.

I am not hunting for perfect abs. I remain uninterested in protein shakes.

I am interested in losing a little weight because my pants would be a bit looser. Most of that weight is hiding out on the front of me. I see it every day in the mirror.

I like meat. Meat has protein and tastes much better than a protein shake. Peanuts, nuts, eggs, oats, seeds and wheat have protein and all of those taste better than a protein shake. If it isn’t broccoli or celery, there is some protein in it. Broccoli has better taste than a protein shake.

Where am I going? That remains to be seen and felt. I strive to find a deeper meaning within myself.

For most of the spring and summer months I found something in pedaling my bike along the bike paths around town. I found an inner peace. I learned to focus over time on the piece of the trail immediately in front of me. I looked far ahead only to anticipate obstacles and plan maneuvers around them.

I returned to our church. Cheryl was much better at religion than I am. I am more questioning. I returned to church not for the religiosity. I returned for the community. I sit in a different place. (Everyone seems to have their place in a church.) Cheryl had a place that she liked to sit and of course I sat with her. I sit in a different place now. Just me.

I am going toward the next thing. That thing is right in front of me. It is not way out in the distance.

“Winter is coming”, says the head knight staffing the wall in Game of Thrones. It is indeed. Prepare for it. Dress for it. Do not be anxious. Anxiety serves no purpose.

Carpe Diem.

Stuff Occurs

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Says the doctor says I can go home. No surgery.

Just wear this neck brace for a while and after 8 weeks or so all will be well. Hopefully after 8 weeks or so my face won’t look like it does now. Ill be back to my clean shaven,  handsome self. Not looking like I went through the windshield of a car. Anyway It’s not too bad.

I still feel kind of dumb, but Oh well. Stuff happens.

Carpe diem

Progress and Regress

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The whole of the Parkinson experience is measured in tiny little steps. Whether it progresses or regresses the steps are tiny.

This morning for the first time in several mornings Cheryl awakened with an alertness that I have not seen for weeks. I helped her from the bed to the toilet and then she walked herself into the kitchen for breakfast. The previous few days I had rolled he into the kitchen in the transfer chair I purchased for watching grandchildren’s graduations. It was marvelous. She did not move rapidly but she was moving by her own power.

Is that progress or regress?

Which side of the fence are you on?

Progress?

Today, this morning, her disease regressed a bit and she got up after a long night of sleep refreshed and able to move herself around.

Carpe Diem.

Clear and Calm

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Clear and Calm

The water is calm. The air is clear. It is a new day. Pizza Tuesday is here.

Every morning I spend a few minutes finding my center. Many call it prayer and I suppose it may be that for some but for me I think of it as centering.

Each day brings new experiences unlike the previous or the next. Starting in the center allows for movement in either or neither direction. One can go with the flow as the kids say.

This trip to the beach with family is centering me more than I originally thought that it could. Before we left I worried over small details and ultimately let go of some. Of course now that we are here I see a few details that should have occurred to me but did not.

Had I centered on Cheryl and her needs, I might have thought about some handy things that I have used to help her. I should have brought with us a couple more handicapped useful devices. I bought her transfer chair not realizing that her U-Step walker is just as important to her mobility. She needs her manicure kit to keep track of her finger and toenails daily. A handicapped toilet seat would have been a wonderful thing. (At home we have had seat height toilets installed. The toilet seat height is within an inch of the height of the transfer chair seat which is becoming more of the care partnering experience. )

But centering on her disease shifts the mood of the vacation holiday. It is a delicate balance between understanding and helping.

Centering myself at the beginning of each day provides a perspective and I deal things as they come up, not as how I want them to be or wished them to be.

Carpe Diem.

More Things Learned

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In my little book – The Hitchhiker’s Guide to Parkinson – I have a section where I note things that I have learned along the way as Cheryl and travel this road of Sam Parkinson.

Today it occurs to me that although I want Cheryl to get up and get going to exercise class because it appears to me that she actually likes this exercise class and although she got up late she still has time, suggestion is the only tool I have to motivate her. Any comments beyond – if you still want to go to exercise class you still have time – reminds her that it was her idea and answers her unspoken question of, is there still time? – are useless comments and could make her feel that I am being pushy.

If she senses that I am being pushy she will resist it every time.

Another technique that I use but often forget about is what I call bump and run. I can use the fact of her really poor short term memory to plant an idea.

This morning it occurred to me in addition to using suggestion as a way to get her thinking about getting up, if she did not I should just let go and not worry about it. I understand why it is good for parkies to exercise but she is not always interested. If she perceives it as her idea, she is in, if not, forget about it.

We made it

I realized that I can switch from encouragement to nag-o-ment if I do not pay attention.

Carpe science Diem.

Two New Arrows in the Quiver or Better Living through Chemistry

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Ondansetron for nausea and Quitiapen for a sleep aid. How are they working?

Ondansetron Hydrochloride

The drug for nausea – Ondansetron – seems to work very well. I have adjusted when Cheryl takes it a bit. The instructions merely say three times a day and at first I interpreted that to mean 7AM, 1PM and 7PM which are normal times for her to take meds. For the past couple days I have given her the evening pill at about 5PM which is 45 minutes to an hour before we would ordinarily eat dinner. It seems to be working for her. I have repeatedly asked her about stomach issues and she reports no issues with her stomach.

This report – no funny stomach – is very encouraging since it has been her main complaint for months. I can empathize. Over the past couple years she has lost approximately thirty-five pounds of weight. The dyskinesia puts her body in constant exercise but the combination of no sense of smell and a slightly uncomfortable stomach keeps her from eating much. (During this whole time she has not vomited but as she says, it is right there.)

Quetiapine Fumarate – 25mg

The drug used as a sleep aid – Quetiapine – might or might not be working as hoped. She is prescribed 1/4 of this little pill before bedtime (10PM). Shown above it is approximately 1/8 inch in diameter. We have a pill spliter but these are not scored for cutting in half as many pills are and certainly not scored for quarters.

The first night she took this she slept completely through the night. This was the first time in approximately two years. The second night she got up once. The third night she got up once and seemed restless for a bit when returning to bed. The fourth night was similar to nights before she started taking it. I am not convinced that she is getting the same dose each evening, so I will find a way to slit these tiny little pills as uniform as possible.

An update: Last night seemed better. She used the walking frame for stability. Only once.

Zofran — From Wikipedia —

Ondansetron, sold under the brand name Zofran among others, is a medication used to prevent nausea and vomiting caused by cancer chemotherapy, radiation therapy, or surgery.[2] It is also effective for treating gastroenteritis.[3][4] It is ineffective for treating vomiting caused by motion sickness.[5] It can be given by mouth or by injection into a muscle or into a vein.[2]

Common side effects include diarrhea, constipation, headache, sleepiness, and itchiness.[2] Serious side effects include QT prolongation and severe allergic reaction.[2] It appears to be safe during pregnancy but has not been well studied in this group.[2] It is a serotonin 5-HT3 receptor antagonist.[2] It does not have any effect on dopamine receptors or muscarinic receptors.[6]

Ondansetron was patented in 1984 and approved for medical use in 1990.[7] It is on the World Health Organization’s List of Essential Medicines.[8] It is available as a generic medication.[2] In 2017, it was the 83rd most commonly prescribed medication in the United States, with more than nine million prescriptions.[9][10]

Seraquel — From Wikipedia —

Quetiapine, sold under the brand name Seroquel among others, is an atypical antipsychotic medication used for the treatment of schizophrenia, bipolar disorder, and major depressive disorder.[6][7] Despite being widely used as a sleep aid due its sedating effect, the benefits of such use do not appear to generally outweigh the side effects.[8] It is taken by mouth.[6]

Common side effects include sleepiness, constipation, weight gain, and dry mouth.[6] Other side effects include low blood pressure with standing, seizures, a prolonged erection, high blood sugar, tardive dyskinesia, and neuroleptic malignant syndrome.[6] In older people with dementia, its use increases the risk of death.[6] Use in the third trimester of pregnancy may result in a movement disorder in the baby for some time after birth.[6] Quetiapine is believed to work by blocking a number of receptors including serotonin and dopamine.[6]

Quetiapine was developed in 1985 and approved for medical use in the United States in 1997.[6][9] It is available as a generic medication.[10] In the United States, the wholesale cost is about US$12 per month as of 2017.[11] In the United Kingdom, a month’s supply costs the NHS about £60 as of 2017.[10] In 2017, it was the 76th most commonly prescribed medication in the United States, with more than ten million prescriptions.[12][13]

This website Drugs.com has pictures and characteristics of everything.