Tuesday, November 9, 2010


"To sleep, perchance to dream-
ay, there's the rub."

Last night my partner and I went to another Vanderbilt Neurology presentation on Parkinson's.  This one included free dinner at the hotel where the presentation was given--a nice perk--and yet another chance to meet new Parkinsonians and hear their stories AND grill the doctor giving the talk to the point that the facilitator of the event had to stop the questioning.   This was one I especially wanted to dodge rush hour traffic to make. The physician was my neurologist, Dr. Fenna Phibbs of Vanderbilt, and the topic was 

I learned I wasn't alone as Dr. Phibbs went through her Power Point slides.  I saw other heads nod and people looking at their significant others when  she got to the "acts goofy at night and tries to kill spouse in bed" part came.  No matter what we do, we're not the only ones who do it, and it's not just PD that causes wild and crazy nights.  But we do share some significant problems, we're more apt to have certain symptoms, we generally take many of the same medications, and we all seemed to struggle with the big question: Is it the medication or the PD?  Empathetically, with great bedside manner and patience, Dr. Phibbs listened to whispered questions from those who have already lost their voices.  

Some Sleep Basics
  • As we get older, we need less sleep, BUT we still need 7 hours anyway.
  • We should ideally get our sleep in a continuous period--that is not getting up every 2 hours to clean the garage or save the world (my problem).
  • Reaching dream stage or REM sleep is critical.
  • There are 2 things we do in bed--sleep and have sex. Nothing else should go on there. She calls this good bedroom hygiene. I didn't ask about sleeping with a cat who takes up my entire pillow and gradually forces me down the bed.
  • She suggested satin sheets and pajamas to help us move around better in bed. That's for those of us who wake up needing to go to the bathroom, but we're stiff and almost immobile. 
  • She also suggested relaxation techniques and music designed for sleeping--not the TV.
  • She recommended a sleep study for those of us who have problems, including possible sleep apnea, because everything that happens to us is not necessarily PD.
Parkinson's problems:
  • Restless legs. Although people without PD have RLS, it's far more common in people with PD. Possibly 89% of us battle this insomnia-producing annoyance. 
  • We often wake up acting out our dreams. Acting out might include accidentally hitting our partners when we are really single-handedly fighting off Romulan attackers in the 24th Century.
  • Our meds might be wearing off about bedtime, and we wake up every 2 hours--and she used my words from my appointment the week before here--to take over the world. 
  • Our PD and/or the meds may and frequently do cause serious compulsive behavior.  I am the test canary on this one, so I will publicly embarrass myself on my blog as I did last night at the dinner. I spent 24 years on the Fire Department on 24-hour call as a fire and arson investigator. I am accustomed to "getting the alarm" and having to turn out (fire department jargon for getting dressed) without missing a beat. But I retired 8 years ago, yet I still lay my clothes out for rapid response to contemporary crises.  Once up, the compulsive behavior goes amuck. Typically that involves working on classes or this blog, rearranging some cabinet or vanity, and eating...and eating....and eating. 

Dr. Phibbs underscored several times the importance of telling your neurologist about everything. In some cases, the very meds that control our motor symptoms can cause other problems. If the trade off is decreasing our dopamine agonists, then we have to live with increased tremors and worse.  But there are hopeful steps we and our neurologists can work out:
  • Often a sleeping pill is prescribed, one that doesn't affect dopamine.  Even those, of course, have to be adjusted--often to lower doses--when sleepiness becomes a problem at the worst possible times during the day.
  • Those of us over 50 or 60 generally have other medical problems, and those medications also cause sleep problems. Whether it's depression, cardiovascular problems, arthritis, or diabetes, it is a good idea to get with those other specialists and determine if any other meds can be "tweaked"  or changed.
  • Consider a sleep study. Other factors interfere with sleep also.
  • Carry a list of medications with us at all times, especially to the ER if we ever need to go.
  • EXERCISE--it cures everything.
  • And, finally, my personal recommendation: sleep with a cat or cats.

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