Care Partners Unite to “SHUSH” Parkinson’s

Care Partners Unite to “SHUSH” Parkinson’s

The strangest thing happened.  Again.  What is a Parkinson’s Disease care partner to do when an unwanted visitor returns night after night and hides in the dark shadows of her bedroom quietly waiting to attack the love of her life in his sleep?  When instead of friendly neighbors and family, your house guest becomes none other than a lurking Freddy Krueger, first stirring you awake with his dystonia, mumbles eventually erupting into violent curses, until finally you fall victim to a deadly attack like just another Nightmare on Parkinson’s Street! So, again I ask: What does this care partner do?  Well,… after waking up (again), perching on the precipice of our large king size bed (again), I roll over facing my PD “Freddy” hubby, and do the only thing that is safe and prevents me from being captured in his conflict.

I let out one big “shush!”

And it works! Much like a two-year-old making a racket in church, a simple “Shush!” and instantly the physical struggle stops, his cursing transforms into a quiet sigh, and gently he falls back to sleep. How crazy is that?!?  “SHUSH!”

In the dark of the night

Initially, I felt pretty alone in the night.  Awake again after another one of Freddy’s visits to our house on Hott Mountain.  Frankly, it also feels pretty lonely the next day too.  Trying to cope with work and kids after you drudge your way through the day with interrupted nights of, well,… nightmares.  Harder still for your care partner as he struggles with less than an effective regime of medications which seem to barely help when he can not rest.  Not the safest formula for a fella with Parkinson’s Disease.

The last month has been especially difficult, and frustrating.  (Frankly, it pisses me off.)  You see, the Veteran’s Administration screwed up his meds at his last visit which delayed the delivery of the very drug therapy which helps him sleep:  clonazepam.  His doctor prescribes this to help with the sleep problems related to Parkinson’s Disease.  Without his nightly dose, the nightmares regularly returned, until the prescription finally arrived.

And just like the “SHUSH” dispelling another crazy dream, when the clonazepam returned, the nightmares stopped.

Little humans and big humans

Honestly, I haven’t a clue why a simple “shush” worked to bring my husband back to a peaceful bedroom.  I was merely searching for a physical free interruption.  Maybe raising four babies, I just had plenty of practice “shushing” tiny humans. Funny a “shush” works on my big human too.
Care Partners, let’s unite!  Maybe a “shush” will work for your big human too!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (5)
  • susanne
    3 months ago

    This is for Angie, wow you are a great writer! You can hear me online Susanne Shapiro Harpsichord (I think) but my other profession is that of a court-qualified Graphologist, and I want to start a Graphotherapy movement, remember that handwriting is ‘ brain writing’, and I knew there was something wrong at least 2 years ago. What is your take – anybody? Susanne

  • susanne
    3 months ago

    I loved the “shushing” …. I am a newbie Parkie, live alone with Fritzi my cat and was diagnosed 4 months ago but had weird symptoms (felt like I was a different person) for at least 2 years. I am 91 and look and think much younger, but my brain cannot get through to my ‘activities center’, meaning that my practising (am a professional harpsichordist, no, not harp!) does not produce the results I want to hear. One side-effect that I have not seen written about is, that I hear odd sounds, sometimes they are louder that my instrument. Does anybody have these symptoms? Susanne

  • Angie Hott author
    3 months ago

    @susanne Hi Susanne! And, welcome “newbie Parkie”! Fritzi is one lucky cat to get to accompany your practicing on the harpsichord. Such a beautiful instrument. With two teenage boys still at home here, we have a house full of music too. Here, it is trombones, guitars, ukeleles, piano, and drums. Add my saxophone, and it can get crazy…lol! I am not familiar with hearing odd sounds as a symptom my husband experiences. Thank your for talking about it. Please keep me posted about what your Dr Kirsch has to say. It must be frustrating. I love hearing that you play music. I feel that our house full of music is great for us all. How old were you when you began and do you play other keyboards? Also, thank you so much for reaching out. love, a

  • chris.hall moderator
    3 months ago

    Harpsichord! Very cool. Thanks for commenting, @susanne. Have you spoken to your doctor about the odd sounds you’re hearing? Some people with Parkinson’s may experience auditory hallucinations. We have more information about that here: https://parkinsonsdisease.net/clinical/hallucinations-delusions/. Keep us updated! – Chris, ParkinsonsDisease.net Team

  • susanne
    3 months ago

    Chris I cannot tell you how wonderful and important your replies are. My Dr means well but no, he keeps wanting me to take a sleep apnea test for some of my symptoms, duh. But I will run it by my terrific audiology person Dr kirsch who had been helping me but thinks that my additional problems are neurological. (Before my PD was diagnosed)Will let you know. Susanne

  • Poll