PD caregiver helping her husband with a dystonia leg cramp caused by his medication wearing off at night

Can We Talk?...Again! (Part Two)

Last updated: September 2019

Read part one here.

It is 3:16 a.m.; are YOU awake, again, too? Wait, don’t tell me! Does the love of your life have Parkinson’s disease also? So does mine! You must be a fellow Parkinson’s disease care partner! Now, tell me. What happened at your house? Why are you awake this time?

Let's chat!

Was it a cramp? Or, maybe a nightmare? Over here in our dark house on Hott Mountain, WV, the peaceful night complete with the quiet ticking of the hall clock and soft shadows from the stair light was interrupted as it regularly is; just about the time my Hott-hubby’s meds wear off.

From one who normally (if you can call it normal) moves at a sloth’s pace during the day and sleeps still for portions of the night, a PD med-free cramp will dart him out of bed faster than our dog Zoe chases the UPS truck out the driveway. I am reminded of an Emergency Room doctor who once explained that dystonia cramping is much like your muscle suddenly twisting and twisting itself like a big rubber band. Ouch! Dystonia is a terrible symptom of Parkinson’s disease!

PD "MEDtime," or BEDtime changes

From what I understand, as the Parkinson’s meds wear off during the night while he is sleeping, symptoms creep in as the time released levodopa wears off. Combined with immobile muscles at "bedtime", the need for "medtime" is announced by an interruption of precious sleep to a sudden jolt of pain. And, in his effort to keep quiet as not to wake me because he knows that there will be 400 elementary school students waiting for me at school bright and early, we concede once again to this cruel chronic neurological disease called Parkinson’s.

Pain doesn’t always bring out the brightest side to people; no matter what time of day or night the situation arises. As I watch him groan, I get angry. Not at him, because I am awake; but at Parkinson’s disease because it is just so stinking mean.

PD makes sleep difficult with a whole boatload of issues, but it is just mean to wake up a guy just as he finally is able to get some rest!

So, what do I do?

I’m the care partner, right?! Honestly, it is really, really hard to watch him suffer. And often the answer to this question is: nothing

I hate that. I hate feeling like, although I can offer to massage the muscle, arrange pillows and blankets for comfort, grab another round of medication from the medicine cabinet, or run to the kitchen for water, there is still not a damn thing I can do to stop the night time cramps. And that sucks.

The only alternative is to offer him kindness, understanding, and love. And ya' know what?...a little deep tissue massage in the wee hours can be pretty cool too! ;-) It won’t make the cramps go away tomorrow night; but for what little this care partner can now do, it is just about everything.

Good night, again, fellow care partner! I'm off to deliver a little "medtime" massage!

Read part three here.

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