Something Sweet with Susan

The title would not be as inviting if it read Parkinson’s and Lack of Sleep, but that’s my experience in my life with PD.   Each appointment with my Neurologist includes this list of questions:

Do you act out your dreams?
Have you ever hurt or injured a sleep partner?
Do you talk in your sleep?
Do you sleepwalk?

No, no, yes and no.  I don’t ask, but I’m wondering if that is coming down the road?  I really don’t want to know.

It is estimated that two-thirds of those afflicted with Parkinson’s disease struggle to get quality sleep. Sleep problems are increasingly recognized as a potential early indicator of Parkinson’s disease.  I personally had sleep indicators 8-10 years before my tremors began.  I did not know at the time that there were any correlations between the two.  And quite frankly, it wouldn’t have changed anything had I known except to cause me more anxiety.  

Last year I was on a mission to find a way to sleep better.  It was not more quantity, but more quality sleep that was needed.  I was tired of waking up tired and needed to find a sleep specialist.  

The next step was an overnight sleep study where I was diagnosed with mild sleep apnea.  Just what I needed – another diagnosis.  Ok, I just want to know how to get better sleep.  I was fitted with a mouth appliance and after a couple of months it seemed to be more bothersome than helpful and I wanted a second opinion.  That’s when I learned about a sleep specialist who also has a background in Neurology.  And top it off – her office is two miles from my house.  Bingo!  

She agreed the mouth appliance was not a good fit for me.  We decided to try CPAP.  In the weeks before the device was delivered, there were a series of sicknesses that led my PCP to believe reflux could be a problem for me.  I had not talked to him about my sleep disturbances, but once I started the reflux treatment I started waking up feeling rested and energized.  My sleep specialist and I decided to put CPAP on hold for the time being.

Why do I share this information?  Sleep disturbance is very common in this life with PD.  Because each journey is so individualized it is easy to feel like you are alone on a deserted island.  You are not!  Though symptoms can be varied, sleep disturbance is one of the most commonalities with this diagnosis.  Sharing experiences is a way we can help each other.  As I’ve said before, staying silent helps no one – not even yourself.

This morning I woke up at 3:55 a.m. from a horrible nightmare.  If you have PD, you know we remember these dreams.  As I tried to go back to sleep I prayed for the individual in the dream.  After 30 minutes I knew I was not going back to sleep so I got up and started writing.  I haven’t yet found a way to help my REM sleep disturbances that are associated with PD.  

I am happy to say that overall my sleep quality has been better in the last month than it has been in several years.  If it changes, that’s when CPAP will be reconsidered.  My sleep will never be like it was as a teenager, but I’ll take this as long as it lasts.

Below are a couple of references you may find helpful regarding PD and sleep:

https://www.sleepfoundation.org/physical-health/parkinsons-disease-and-sleep

https://www.med.upenn.edu/pdmdc/assets/user-content/sleep-web.pdf

“The LORD is my shepherd; I have all that I need. He lets me rest in green meadows; he leads me beside peaceful streams. He renews my strength. He guides me along right paths, bringing honor to his name. Even when I walk through the darkest valley, I will not be afraid, for you are close beside me. Your rod and your staff protect and comfort me. You prepare a feast for me in the presence of my enemies. You honor me by anointing my head with oil. My cup overflows with blessings. Surely your goodness and unfailing love will pursue me all the days of my life, and I will live in the house of the LORD forever.”
Psalm 23:1–6