Cheryl: Those women are all putting on their bathing suits. I’m not going to do that. Mine doesn’t fit anymore. I’m coming back to bed.
Me: Okay. You’re probably right. You’ve lost a lot of weight. I don’t think your bathing suit fits anymore.
Early morning conversations can often be odd with a parkie (PD patient).
God has a plan. This concept is a tenet of the major monotheist religions, I think. And based on that everything that happens has been preordained by God to happen.
It matters not whether we understand God’s reasoning. It matters not whether we like the outcome. It matters not that a disaster has occurred in our lives. It matters not whether a great benefit has occurred in our life. It matters not whether we achieve and others do not. It matters not that others receive something that we believe is ours. The plan exists and it is good because God is good, all-powerful, all-seeing, all-knowing, all-everything. It matters not if there is a belief in God.
All the bad stuff and all the good stuff is part of the plan. God’s plan. His plan. Even Parkinson’s disease is part of the plan. This part of the plan sucks. Acceptance of this part of his plan is heart breaking.
High order cognitive function impairment: She has changed. The changes are very subtle and if you have not lived with her for fifty years you might not notice the changes. I do not know if I can describe them well.
Cheryl has always been a strong and independent woman, now, she is often unsure of herself. From my perspective, this first appeared suddenly as she worked on a task she has performed through our entire married life. Suddenly after fifty years she was unable to balance the checkbook. But maybe, probably, this has been creeping up on her for a while.
That ability – to remember to jot down spendings, note the withdrawal of cash, perform the addition and subtractions – was suddenly confusing. Her notes made no sense or not as much sense to her. She panicked at first and spent long hours in her home office on the hunt for small amounts of money. She was scared.
So, we compromised. I matched the notes she made to the actual transactions that the bank recorded. I made no commentary about what things were for, just that they were there. Two transactions were recorded twice. One transaction not at all. The error was found.
Two evenings of confusion and lost sleep for $129.35. Parkinson’s sucks.
And now I’m in charge of the checkbook. Because I need to relieve the anxiety and worry that goes with once knowing and now not knowing. She is sleeping better most nights.
Logical procedures – Related to the whole checkbook fiasco are many other procedural tasks that are suddenly incomprehensible to Cheryl.
Cheryl spent a large part of her working career figuring out, manipulating, generating reports from, creating databases of various types. Our youngest son inherited the talent and makes his living at that type of work. This woman spent her early years in pursuit of a degree in mathematics. Raised our children and when they were out of the house taught school for a bit. Eventually became an independent contractor for law firms, labor unions, healthcare providers, and financial firms providing database design and support. Complicated tasks and procedures and precision coding where second nature.
And now, many of these are incomprehensible to her. This may be part of some incomprehensible plan but it is a maddeningly inane plan from this writers perspective.
Learning disabilities later in life — We all have them. “It is hard to teach an old dog new tricks.” We have heard this expression before. With Parkinson’s it is hard for an old dog to produce the same tricks. Maddeningly so.
Higher order thinking and organizational thought: The high order brain function does not recognize that lower order functions are disabled or incomplete. No longer can you trust implicitly what you perceive, see, hear and feel.
Anxiety about loss of function: This is mostly from me. Cheryl can sometimes detect that she is losing some cognitive function but she often refuses to believe it. On the other hand I have noticed some diminished capacity in her performance of some tasks but I am never confident in “helping” which can be interpreted as overbearance and interference. I want to do neither but I do want to help her get past her conundrum.
My part in all of this: Its my job to be there and be there with strength. Sometimes an overwhelming sadness appears and I tear up. Sometimes I feel real anger. I hate to be pushed into doing things or being responsible for things that are not my idea. I suppose that makes me human.
Taking care of Cheryl is my task but I had hoped we would be more companions rather than care-giver/receiver in our later years.
As I write this post and review and reflect on my thoughts and fears, I read a great deal. Perhaps too much. Recently I tripped over this quote from Scott Adams, the author of Dilbert, he wrote, “Facts don’t matter. What matters is how you feel.”
Where does one derive a belief system? In others separate from this writer, beliefs seem to arise from perceptions of authority and knowledge of a particular body of science.
For example, a doctor or doctors generally are accepted as having a greater knowledge of human bodily functions. They do , of course, but this perception can be tainted or dismissed by specialization. You may not wish to be seen by an OB-GYN for a problem with your sinuses. So, how do belief systems develop?
Marketing? Personal service? Religion? Advertising?
All of these in some way seem to be used to influence, introduce and develop belief systems within us.
Cheryl has been diagnosed with Parkinson’s disease. It is not a death sentence. It is, however, an annoying extra to be dealt with during daily life. In addition to the manifest reality of the slow deterioration of her nervous system, the drug treatment regimen can be complicated in the extreme.
At six distinct and critical times of each twenty-four hour period, several different chemical compounds must be ingested to combat the effects of Parkinson’s. And after they are ingested the associated side affects must be dealt with.
The initial side effect is nausea. This is dealt with initially by carbidopa which is added to the levodopa to relieve the reaction of the stomach to expel unwanted chemical content. Two saltine crackers also help and enough water to dilute the whole mess and get it to the small bowel where it can work its magic.
Because magic it is when the levodopa works. Levodopa is a dopamine precursor the human body turns it into dopamine which is a chemical the brain and nervous system needs to function. Dopamine deficiency is the proximate cause of Parkinson’s.
Dopamine (chemically – 3,4-dihydroxyphenethylamine) is a neurotransmitter and when you do not have enough of it your neuros (neurons) cannot transmit. Dopamine deficiency is linked to a whole host of crappy life problems.
This is from Wikipedia — In popular culture and media, dopamine is often seen as the main chemical of pleasure, but the current opinion in pharmacology is that dopamine instead confers motivational salience;[3][4][5] in other words, dopamine signals the perceived motivational prominence (i.e., the desirability or aversiveness) of an outcome, which in turn propels the organism’s behavior toward or away from achieving that outcome.[5][6]
Wow! The treatment for PD is a chemical that can push the brain around. An oversimplification but one that can help to understand the side effects of Sinemet and other commercial versions of Carbidopa/Levodopa compounds.
As one can imagine, hallucination, confusion, misconception, delusion and false perception can accompany ingestion of this substance. The lack of dopamine in the inner brain can cause some of the same. It is a delicate balance.
Recently, she had problems with the perception of urinary incontinence at night. Perception is used here because we base our belief structure on our perception of our surroundings by our senses. Touch, smell, sight, auditory, kinesthetic tell us where we are, too hot, too cold, too bright, too dark, not loud enough, too loud, is my arm up?; is it down?; is this wet?; or not. When that perception of the world based on one’s bodily sensors breaks down an anxiety can set in.
The caregiver was unable to convince her that she was not incontinent. No odor. No wetness. No evidence.
Not an expert. Not believable.
We recently went to visit with a urologist to check out that specific problem of urinary incontinence.
According to the expert, all is well. A part of the belief structure is still intact. The young urologist is also an excellent marketer and persuasive in her knowledge and bedside manner.
The first night afterward she slept comfortably all night. One or two get-ups to urinate but blissful sleep after returning to bed. A second night in a row was achieved.
The third night she slept straight through for seven hours.
A streak!
Huh? Can it be that easy? All that is necessary is to find the correct expert that can persuade the belief structure that the hallucination is not real? The one that can give the cognizant mind – still there even with PD – the ability to overcome the sensory mis-perception?
Parkinson’s sucks AND its a lot of work.
Wobble wobble
shuffle stop and sit
wobble limp stumble stop and lay
swallow gag swallow chew
two more pills
just two
another to improve the two
in three hours two more
And another
wobble wobble
shuffle stop, well shoot
repeat
The repetition is short and close together.
and more of one causes another
It's a struggle to find what works
a strain to ignore society's jerks
who can only understand that gray hair and a cane
signal help
who without these attributes cannot detect
their own short comings
Mini sicknesses and recoveries abound
five solutions a day are found
But often the fix exists
for merely one or two events
the frustration and stress come down
as the on time is fleeting
and defeating
Parkinson's disease sucks big time.
Parkinson's sucks small time.
it sucks anytime.
It, Parkinson's, gets in the way of life
IT gets in the way of eating
IT gets in the way of drinking
IT gets in the way of dancing
IT gets in the way of walking
IT gets in the way of driving
IT gets in the way of social relationships
THEY can be embarrassed by being friends of someone with a chronic condition
THEY can be embarrassed by being friends of someone with a ironic condition but rarely are.
THEY will always hold the door for gray hair
and a cane
but not for the companion
and the campaign
And politics does not matter
skin color does not matter
religion does not matter
gender does not matter
IT singles out no one
IT has no cure
IT is the gift that keeps on giving
IT gives more as age progresses
And then there is Lewy's bodies
but not always
are the bodies buried where they can be found
the recoveries abound
but do not always satisfy
Watching a PD advanced class of folks struggle with various disabling aspects of this disease.
It’s a combination of exercise and support group. Cheryl seems to be enjoying it. Her first time.
I can’t get the tears out of my eyes. The two leaders of the group Paige and Barb – so thoughtful and encouraging to all.
Ten activities all designed to stretch the brain and muscles of PD patients.
Around the world
Ball toss and multi-tasking.
Stretches
Cardio machine
Lunges
Walking and talking
The democrats say:
Let us beset the Donald, because he is obnoxious to us;
he sets himself against our doings,
reproaches us for his transgressions of the law
and charges us with violations of our training.
Let us see whether his words be true;
let us find out what will happen to him.
For if he is of the Right, the Right will defend him
and deliver him from the hand of his foes.
With revilement and torture let us put him to the test
that we may have proof of his gentleness
and try his patience.
Let us condemn him to a shameful defeat;
for according to his own words, his base will take care of him,
And keep him from injustice should he shoot someone on 5th avenue or unconsciously grab a pussy.
The republicans say:
Because a friend of mine is come off his rocker to me, is no reason to abandon his lead, and I have not what to set before him nor enable the smooth road.
And he from within should answer, and mightily tweet:
Trouble me not, the door is now shut, and my children are with me in bed, I have circled the wagons. I shall have builded walls. This is TREASONETH.
I cannot rise and give thee entrance unless thou hast useful merit.
Yet if they shall continue knocking, I say to you, although he will not rise and give him entry, because he is Giuliani, yet, because of his importunity,
he will rise, and give him as many as he needeth.
And I say to you,
Ask, and it shall be given you: seek, and you shall find: knock, and it shall be opened to you.
For every one that asketh, receiveth; and he that seeketh, findeth; and to him that knocketh, openeth, except democrats for that would be counterproductiveth.
Both golf and chocolate cake enableth me to vanquish the wicked, and seek justice within thy senate for the Mitch is with impunity instead of importunity
And therefore a lameness of duck besets him.
The independents say:
Importuning notwithstanding the jig is upeth! We have supported thee and yet thou has forsaken us. We have given thee leadership and thou hast taken favors. We have accepted tariffs and you have favored iPhones. We have raged at GM and you are but a banging gong, a clanging cymbal. We wish for infrastructure and you give us rants against four women of color unimpressed with your newyorkness. We are wondering if the swamp is actually republican in its essence and therefore undrainable. But mostly we are saddened by the mess.
There is a religiosity to the whole impeachment furor.
…we’ll see. That is the Donald’s go to comment. We’ll see.
A funny thing happened on the way to the funeral – going to attend a memorial service presents a business opportunity when directions are requested at the cemetery business office.
There is something inherently moving about a gravestone covered in leaves in the fall of the year.
Families and bitterness – someone will express displeasure with a jilted lover attending a service of dubious religiosity and unknown allegiance. So few attend to commemorate a wonderful life.
Families and loss – remembrance of those gone before and thoughts of how it could have been. Children scattered to the wind and over the mountain.
When people we know pass from this fragile existence, it reminds us of His plan if there is a plan and our own fragile existence.
Anxiety and worry — always worse in the early morning hours. What am I forgetting? What is important tomorrow, er, today? Many of us have struggled with these thoughts during our working careers. Retirement would take us away from all that or maybe not. With Parkinson’s disease retirement plans dissipate quickly. The caregiver’s role is a full time activity.
Things forgotten — Losing a name, hunting for the correct word, using a different word because right one is not there.
Perception of the physical world — From birth most of us have a sense of touch, a sense of smell, a sense of sight, a sense of hearing, a sense of taste, a kinesthetic sense (where we are in space) and from these we develop an awareness of our selves and our surroundings. What happens when one or two or three of these go awry? When numbness appears in your extremities it is hard to feel a keyboard and if you spent your life keying input into a computer keyboard, it creates a frustration that can only be understood by you. When smell goes away, it takes with it most of our sense of taste. And plants the seed of, “do I have body odor?” Parkinson’s patients have a diminished kinesthetic sense. This one is the feedback to the brain about movement and motion. Close your eyes and listen to this sense. See if you can touch your nose with your finger. Touch is specially important cold, hot, wet, dry, pressure, soft.
When you can’t believe your senses — your brain can run wildly to extremes.
Trust in others – fades.
Anger and frustration – appear in the place of trust
Convincing solutions – certainty of how to fix it coming from a confused and less cogent brain.
Commitment – we’ll see… But not strong commitment to any fleeting solution to whatever the current issue is.
Love and caring – from the partner (who is also losing sleep) that loves you so much and wishes deeply that this was not happening. But what is the actual cause of interrupted sleep or real insomnia? So here’s a list of stuff from info published by the Parkinson’s foundation.
Problems with Sleep at Night — There are several (only two in this article) problems that people with PD may experience during the night:
1) Sleep Apnea — Sleep apnea can be seen in up to 40 percent of people with PD. Common symptoms include: Loud snoring – Cheryl occasionally snores but typically not and when she does it is not loud or at least loud enough that I cannot sleep. To me, listening to her, it is comforting because she seems to be resting peacefully. | Restless sleep — sometimes but this seems to occur after she has been struggling after some computer snafu that has kept her thinking about an issue before going to bed. | Sleepiness during the daytime – occasionally but not anymore than me. | Pause in breathing during night sleep – I do not think so, but, admittedly I am not awake all night listening to her breathe.
So, I the not-medical person but the person closest to Cheryl who lives with her, worries for her health, loves her to an extreme and would go to the ends of the earth to find some solution to her difficulty, rejects the immediate diagnosis of sleep apnea. I could be wrong but I do not think she has this problem.
2) REM Sleep Behavioral Disorder — Rapid eye movement, or REM, sleep is a normal part of the sleep cycle when people dream. Usually the only part of the body that moves during REM is the eyes, thus the name. | People with rapid eye movement sleep behavior disorder (RBD) do not have the normal relaxation of the muscles during their dreams. Therefore, they act out their dreams during REM sleep. | People with RBD may shout, kick their bed partner or grind their teeth. Sometimes, in moderate to severe RBD, people may have aggressive, violent behaviors, like getting out of bed and attacking their bed partner. | About half of people with PD suffer from RBD. It may develop after or along with the disease, but in most cases, it precedes the PD diagnosis by five to 10 years.
Cheryl did not exhibit any acting-out of dreams before her diagnosis that I can recall, but , admittedly between job travel, three children, soccer games, other sports, vacation travel, and life in general I do not recall much. I think I was generally pretty tired when I went to bed so if she kicked me I probably thought it was because I was snoring too loud. But a few years ago, after her PD diagnosis and after she began seeing a different neurological doctor she started to occasionally awaken me by talking in her sleep. And occasionally poking me in her dream. I could awaken her and she had no recall of what she had done or what she was dreaming about.
So, I think this may be worsening. This morning she woke up in the recliner chair in the living room with no memory of getting there.
RBD Treatment (from PD Foundation article) — Consider making environmental adjustments to protect the person with RBD and bed partner from injury. This may include padding the floor, using bed rails or sleeping in separate rooms. — Cheryl has only poked me occasionally and refers to me as “Jan”. (When she was a child, she and her sister Janice used to sleep together in a double bed. I think she is dreaming and I am in it as Janice.) |More; Clonazepam has been shown in large case series to improve RBD in 80 to 90 percent of cases. The dose of clonazepam required is low, usually from 0.5 mg to 1.0 mg. The adverse effects of clonazepam include nocturnal confusion, daytime sedation, and exacerbation of obstructive sleep apnea, if present. It is in generic form and not expensive. | More; Talk to your doctor about the over-the-counter sleep aid Melatonin. Doses up to 12 mg at night one hour before can improve RBD. — Cheryl’s doctor has recommended Melatonin as a low key way to deal with a difficulty of getting to sleep. Perhaps it is time to develop a sleep routine and perhaps I need to be an active participant. https://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Sleep-Disorders
Some anecdotes – Cheryl has become almost obsessive about incontinence. Perhaps every woman worries about this later in life. Perhaps it is merely exacerbated by the PD component of our lives. Nevertheless, she goes to bed with this on her mind and treats it with a pair of disposable underwear lined with another absorbent pad.
After 3 – 4 hours of sleep she awakens in a dream or at least confused and is convinced that she has leaked onto the bed. After discussing the fact that no others are with us she will throw those away and get a new set. Sometimes I have been able to convince her that there is nothing wrong, damp or funny-smelling about the bed but for the past couple nights I was unable to convince her.
Early this morning (9/29/19) she merely changed her paper underwear and went to sleep in the recliner where she awakened several hours later. She reported to me that she had no memory of how she got into the recliner although she has a fuzzy memory of putting the blanket we keep in the living area in the recliner and sitting on it. I heard her shuffling around a couple times but she may have been going to and from the other bathroom. (It is concerning to me that I have convinced myself to listen but not react to her wanderings at night and I am worried about her leaving while she is waking around in her dream state.)
And then when you think you are the only one with this problem, some one walks by with one ten times worse and you are humbled by that.
Then the sun comes up, you are tired but all is well. Be grateful for the day!
Accept with grace anything that happens for good or not so good. – even if you are pretty sure that Parkinson’s disease sucks.
It’s still dark
Thumps and jostling in the weak light
Clank of cereal in the bowl
Blank looks.
She’s up. Not awake, up.
Pills, staring at nothing.
I never feel a thing is real
When I’m away from you
Out of your embrace
The world’s a temporary parking place
Mmm, mm, mm, mm
A bubble for a minute
Mmm, mm, mm, mm
You smile, the bubble has a rainbow in it
Say, its only a paper moon
Sailing over a cardboard sea
But it wouldn’t be make-believe
If you believed in me
Yes, it’s only a canvas sky
Hanging over a muslin tree
But it wouldn’t be make-believe
If you believed in me
Without your love
It’s a honky-tonk parade
Without your love
It’s a melody played in a penny arcade
It’s a Barnum and Bailey world
Just as phony as it can be
But it wouldn’t be make-believe
If you believed in me
Life is fleeting. Life is slow. Life is changing. Life is constant. Life is crazy. Life is sane. Life is odd. Life is normal. Life is happy. Life is sad. Life is busy. Life is peaceful. Mostly life is. And everyday is precious.
Adjunct_Wizard 