Parkinson's: Nurse Practitioners are a Blessing

 

 Journey into Parkinson's with Nancy Mellon

Coordinated by Corrine Bayraktaroglu

Nurse Practitioners are a Blessing

Parts in red are about what I tried  for sleeping-feel free to skip

It's funny how a different day, or a different person can make life feel doable. I was bummed. I hadn't slept enough for too many nights. And the choices, I had been given by my neurologist to help me were ones I was not happy with.  The major one was - she wanted me to try a medicine that was addictive.  When I asked “for how long?”  She said: “For the rest of your life.”

She had just pushed a major fear button for me.

She gave me a prescription for 5 pills, to try it out. She said I could try a half a pill, and seeing the look on my face she added “Try a fourth of a pill, you can do that?” 

•      So... 10 fragmented, little-sleep nights later... I gave in and decided to take a 4rth of a pill. 

•      At 12:20 am, I was awake, and struggling to open the tin foil type packaging around one of the evil little things.  (I was not feeling charitable, or positive about this.) 

•      It sounds easy- it was not. I tried jabbing my finger into the tin foil part to pop it open. Nope. I tried tearing it apart.

•      In my darkened, night time hallway, hunched over and bleary eyed, I saw it! AH HA! A tiny arrow, on the corner of the pill packaging to mark where to pull down the paper part from the tin foil side. It turned out to be easy to open.

•      Wow, I stared- totally befuddled (love that word!)- it was incredibly tiny.

•       How does it snap apart? I turned it over and peered at it- “shit”-no line.

•      Well, they sort of mush apart- they are very soft. They are supposed to melt on your tongue.

•      Snapping the minuscule mushed half into a 4rth - didn't work.  They crumble.

•      I eyed the sizes of the chunks and decided on the smaller crumble and hesitantly put it on my tongue. 

•      Twenty minutes later, I was asleep.

OK, I know that was ludicrous, but that's what you get when you feel forced into doing what you really don't want to do.

That was the night before my neurologist scheduled me to have a Zoom, follow up visit with a Nurse Practitioner to see how things were going. (Yep, I had waited until the last night before to try a ¼ of a pill.  I was not feeling hopeful that anything helpful would come out of this meeting.)

Enter the Magnificent NP. This is  the great part of the story!  She listened, (so did my neurologist.) But she also seemed to have heard me. And she agreed with me! She said that medicine was always her last choice of what to use, “we have lots of other choices.”  She asked me what I had already tried, which you probably know from my posts, has been a lot of different things – from reading a ton of sleep manuals. 

I've tried Sleep Hygiene:

•      go to bed and get up at the same time every day,

•      keep room dark and cool, turn clocks away,

•      no computers or phones for 2 hours before sleeping,

•      do not use bedroom for anything but sleep and sex, 

•      After awhile of not being able to get to sleep, go into another room and read something dull.

 Then there was:

•      Hot baths with mineral salts

•      Hot milk and toast in the middle of the night

•      Massage

•      Acupuncture 

•      Homeopathic remedy for insomnia

•      Homeopathic remedy for restless legs (which did work, thank you for the tip Jill!)

•      Slow deep breathing

•      Bedtime Stories for adults to help you to sleep

•      Curling my toes 100 times

•      lavender oil on the bottom  of  my feet

•      10 drops of CBD oil

•      CBD Sleep Gummies

•      Melatonin, at 5 mg, (when that didn't work my neurologist upped my Melatonin to 10 mg, I tried that, it didn't help.  She said I could go to 15mg. But I didn't want to.)

•      She also had me try a carbidopa/levodopa cr pill that lasted for longer to use at bedtime.

Some things I tried, worked, sort of, for a couple of nights but by the 3^rd night didn't. But I want  you to know that all these things work for different people. So if you are having trouble sleeping, try them.  And thank you to all the people who have made a sleep suggestion to me!

 This is the tricky one:

I had read in “The New Parkinson's Disease Treatment” book by J. Eric Ahlskog, PhD, MD. that my leg pain and insomnia were signs of being under dosed.  He has  30 years of working with Parkinson's patients as a Mayo Clinic Dr.

•      In his book is a chart with a dosing scheme- you start with a beginning tablet of 25/100 immediate release carbidopa/levodopa 3 times a day – then up it by ½ a pill.  His chart goes-

•      2^nd week: 1 ½ pills, 3 times a day,

•       3^rd week: 2 pills, 3 times a day

•      4rth week 2 ½ pills, 3 times a day

The goal is to restore normal functioning.  When you hit that goal you know you are at enough.

In desperation, as “the Captain of my ship,” I upped it once without asking my neurologist first.  But I now needed to get her to buy into this idea.  (I needed a Dr.'s prescription to have enough pills for this to work.)

Which she didn't.  I sent a MyChart message to her the day before our teleconference to tell her that I had stopped taking the long acting one she had prescribed for me.  It wasn't doing the job. I woke up after 3 hours and stayed up.  That, I had upped my dose by 1/2 a pill and added a bedtime pill (not long acting) to help me get to sleep and one when I woke up at night. (Which Dr. Ahlskog had also suggested in a chapter on insomnia.)   I always made sure they were 3-4 hours a part.

She said OhhKaaay.  But don't take any more.

I added that my leg pain since I started the dose change 3 days ago, had been getting much better.

(And Halleluia! it stopped completely, 3 days after I talked to my neurologist. One week after starting the new dose.)

So why was I so happy after talking to my NP- Stephanie?  It starts with a name.  I called her by her name-Stephanie.  My Dr. (as nice a she is, and she is nice!) is a title and a last name. It divides us into the one who knows the answers and the one who needs their answers.  Calling someone by their first name puts us on the same footing. It says, lets work this out together.  Then Stephanie, listened to me with empathy, I felt I could tell her everything, She asked me what I had  already tried. She had me totally by the time she agreed with me about the addictive medicine I had been prescribed. She said it was always her last option to use and said we have many other choices.

She agreed that CBT (Cognitive Behavior Therapy) would be a great idea to try, she said a lot of studies felt it was very helpful. (Sounds like she 's reading the same studies I am!)  (My Dr. expressed no interest in my idea of trying CBT, she said maybe down the line but it took too long, the medicine would work faster.) Stephanie worked out a whole different dosing schedule to try and said don't get discouraged, it might take a few tries, but we can do this.

 

Last report, I'm 4 days into the new dosing schedule and taking a sleep aid at night.

It definitely needs some tweeks.  But I know I can contact my NP and she will help me get it right.

 

Blessings on us all,

Nancy and the Snark