Long Term Care

A Day …!

What a day that was 🙁

This post started its life as discussion about insomnia. So the post meanders along at a leisurely pace as I describe how we, Dr Burns and I, tend to approach things differently.

But it has nothing to do with the conclusion which is the critical decision at this point in time. Please feel free to jump ahead to the conclusion – and you can come back this gumph later at your leisure as it vital information for understanding a condition that nearly cost me my life!

I had two falls the day before but that has nothing to do with the day per se – it is just the preamble. Besides I didn’t break a ny thing except bruise my ego. This post started its life as discussion about insomnia. So the post meanders along at a leisurely pace as I describe how we , tend to approach things differently. I had two falls the day before but that has nothing to do with the day per se – it is just the preamble. Besides I didn’t break a ny thing except bruise my ego.

How It Started

One of my constant struggles is insomnia – sleepless in New Westminster is my name!

I go to bed early, I know, I know that is wrong sleep hygiene but I always went to bed early and I know I shouldn’t. I am usually dog tired already by early evening and can’t wait to get to bed. When I get to put my head on the pillow – oh what bliss! And I would fall asleep almost immediately.

It seems that that is all the rest my mind needs. Listen mind, we have only gotten to bed, we still have to rest eight hours, you know those cycles of dreaming, those rapid eye movement things that they talk about?

But my mind ignores my pleas to be reasonable. You leavw that to me, it seems to say, it is my job to reason, I was built for!

And then it just kicks in and starts working on the many issues that it is trying to find solutions for. There seems to no end to the number of issues to chose from!

Parkinson’s getting worse

I have been quite unwell for a while – it seems somehow my Parkinson’s meds were no longer effective. That happens when one has had Parkinson’s for a while so it is expected, I wrote a blog post about it.

I was feeling shaky and the dyskinesia had become so pronounced that I am practically unable to use my smartphone, my main means of communication until now. I can’t even log into my accounts, I make so many errors it invariably timed out.

Dr Burns had popped in as usual, out of the gray. One would normally say out of the blue but as it was already dark…

We chatted a bit. I said that it was good to see him, to break the ice and I WAS happy to see him. “It was not that long ago! visibly agitated. I assured him that I did mean that we never see him – well I never see him, for even if he came in to see a client in the blue book, I would not see him as I more or less stick to my room most of the time.

Then he changed tack and kicked off with: “You have not been sleeping much, have you?” I agreed with his gratuitous question, so that we can move on to what can we do about it!

We had gone over this before. I wanted to know what is causing my problem, was it a simple matter of training, like doing yoga or meditation rather than getting up and start working.

There are many obvious causes for my insomnia, my bed was uncomfortable – it is a vintage style ‘hospital bed’ designed to last forever and give the staff the minimum of work. The mattress is covered in a thick waterproof leatherette material, waterproof but with no give.

So my restless leg syndrome and neuropathy have more than enough opportunity and reason to wake me up prematurely. It is too hot in my room, the temperature is set centrally.

It is terribly noisy. The staff are required to check up on me. So many times, it seems like on the hour, the door swings wide open with hallway light and noise flooding in. I now usually just waves at them, yes, I’m OK.

Insomnia is invariably listed as a common non-motor symptom of PD and it is believed that it is caused by the motor symptoms not being properly controlled, especially RBD ( REM Behavior Disorder). Ironically the Michael J Fox foundation is recruiting people for a clinical trial to confirm that Insomnia is a biomarker for PD.

If you find your mind is too active when you want to sleep, the literature without fail would say it is a sign of anxiety. I certainly have enough reason to be anxious and that has been the focus of my self-diagnosis and search for treatment.

One has to know what is meant by anxiety so I have looked for a definition. I have certainly agonized over this definition: “Anxiety is an emotion characterized by feelings of tension, worried thoughts and physical changes like increased blood pressure“. That is but one of many definitions that I find difficult to use.

I know from experience that at this point my brain is in a flow state and its productivity is high and it comes up with totally new, innovative solutions to these problems.

I would rather have this level of creativity now, and pay for the ravages of sleep deprivation later!

But was there a limit to that? I understood I was in a bad way but was due to the progression of Parkinson’s and the ineffective medication regime, surely?

I tried to find an image to show what a really sleep-deprived with Parkinson’s looked like but the photos I found all used models and if I could look like that I would be happy!

I wanted an image that would show the intense fatigue, and the desperation to put my head down and sleep!

A Possible Solution
The doctor suggested I be given a sedative twice a week to help me sleep and recover my strength, if I agreed. It sounded like music to me, so I agreed, it made sense.

It turned out to be a catastrophe in my case. When I woke up with a need to go to the loo, I tried to get up and go as per usual. But the sedative left me disoriented and unbalanced. I did not have enough time as I usually would, and I remember not knowing where I was and what was going on.

I am used to going to the bathroom at night. I knew my way about in the room at night. A common symptom of Parkinson’s is nocturia or the need to go to toilet several times at night. Not only do have to go often, but when you do, you had better get there fast because you have very little bladder control. I do wear a pull-up diaper just in case but it is usually still dry in the morning.

I certainly had not foreseen that taking the sedative would have that much of an effect on what had clearly become a well established behavior for me. It turned out that I had two falls that night, I tried going again early in the morning and made it as far as the bathroom this time. Even with the pullups there always seems to be some leakage, probably caused by the movement and it does not take much to make the floors slippery.

Other than a nasty bash on the head and very bruised ego, I did not seem to have broken anything.

The Bad Day

The following day my situation worsened considerably. The Parkinson’s got really bad, I was in worse pain than ever, not helped by the falls I would imagine, and as it turned out we were experiencing a new Covid outbreak on top of everything.

To summarize a terrible day, I was feeling so awful I was fearing for my life!

“Heidi, you must stop working so hard and fighting everybody, you will kill yourself!” said one of the nurses.

I was used to fighting for things I believed in. But the amount of fighting that I have been experiencing is totally excessive and unexpected. I have been seeking guidance from people I trust. When I describe the fighting I have been doing, the advice has been unanimous: stop it!

I have heard the message!