From Caregiver to Caree in Just a Few Hours


From Caregiver to Caree in Just a Few Hours

red all their meds to the nurse at their facility, and visited with my folks for awhile. I knew I was on the edge because my Parkinson's meds hadn't been working well for me for a couple of days and I had woken up with a bit of a headache. But, the medicines needed to be picked up and delivered.

By the time I got home at 2 p.m., my head was pounding and I was a little queasy. So, no lunch for me. I made some chamomile tea and sipped it. It just made me more queasy. I went to bed but couldn't get comfortable. There was no way I could take my Parkinson's meds when I was having to trot back and forth between bathroom and bedroom all day. About 5 p.m., my dystonia took over and by 8, the pain of the headache and queasiness combined with total body dystonia was more than I could handle. We were off to the ER. By the time we got there, my arms were twisted and pinned to my chest with muscle spasms and my legs were twisted and crossed and my feet were curled up with painful cramping. I was hyperventilating and dehydrated and in full dystonic storm. It took two men to pick me up and put me on the bed.

Long story, much shortened (8 hours in ER), I was pumped full of various drugs, the combination of which caused me to suddenly have severe restless, jumpy legs. More drugs. Finally started to settle down and we got home at 3:30 a.m. By then I could walk, though I was very shaky and dizzy from the meds and from my involuntary triathlon -- headache, diarrhea, and dystonia. At least I got a fairly decent involuntary abs workout.

I'm still shaky today and so, so grateful for my husband, who put on his caregiver hat and took care of me all night.

As a funny side note, the medical report must have been transcribed by some automatic voice to text program. It told me to "follow up with irregular doctor injured neurologist". It took me a few minutes to figure out what it meant!

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Leslie, The Visionary Passage

Oh Goldie.....My heart just aches for what you went through. The discomfort of ONE of your issues would be were dealing with SO much all at once. Ugh. Gosh did I laugh at the doctor's notes for release! I love that you are able to see the funny through all the pain. For me, I was intrigued to read about dystonia. It's a very long story that I won't go into, but my Great Aunt was clearly suffering from bouts of dystonia quite a few years ago when I was serving as an EMT on my neighborhood Fire Department. At the time it was disturbing to say the least to witness these spells but no one ever gave us the diagnosis of what she was suffering from. Do you think the storms are more frequent due to the stress of being a caregiver? I've read recently about the benefits of cycling for Parkinson's symptoms.....would there perhaps be a correlation with dystonic storms as well? I hope the rest of your week is much less dramatic.


Your story is simply hair raising! And yet you you can still show a sense of humor. I salute you!