It is worse at night

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.

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.

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