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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Filtering by Tag: non-motor symptoms

Parkinson's, Eating, and Cyborgs

Terri Reinhart

It's amazing how much we do during the day without thinking about it. Actually, it's a good thing we don't have to think about everything we do every day. If we did, we wouldn't have time for anything else. We'd need an entire crew to manage everything.

Captain:  Body - Report.

Data:  Heart - Currently at 74 beats per minute. Adjusting for emotional fluctuations and exercise levels, we should see an average of 69.327 beats per minute over the next 24 hrs. Blood pressure holding steady at 104 over 62. Lungs - respiration in the normal range.

Worf: Weapon systems operational, but only when startled. There seems to be some electrical malfunction. The limbs aren't receiving the proper signals. This indicates a weakness. Captain, are you sure this body is worth maintaining?

Captain: For now, yes. As long as critical operations hold, it's the only body we have until the 27th century. We need to keep it running. LaForge, what about the climate control?

Geordi:  There's something going on with the heating system; too many fluctuations. I'll see if I can make some adjustments.

I thought I was up on all the crazy symptoms of Parkinson's. I know we have to actually THINK about things like blinking, swinging our arms while walking, not looking and sounding like we are drunk when our meds wear off. I never thought I'd have to think about swallowing. 

I've been feeling sorry for myself since my neurologist and speech therapist agreed that I cannot eat unless there is someone close by who can do the Heimlich maneuver. This is when I learned about one more thing I do without thinking about it: eat. No more grabbing a few toasted almonds when I go through the kitchen. No meals when I'm alone. Makes me grumpy.

Scotty:  She canna take any more, Captain. She's gonna blow!

Until I remember some of my fellow Never Give Up Warriors who go through Gastroparesis. This is when one's stomach becomes paralyzed. I would try and explain, but I'd rather let Meg tell you herself. Meg Bernard is "Small Girl with Parkinson's".

In honour of Feeding tube awareness week, I'm reposting the story of when I got my feeding tube. I have moved on in my journey and now eat intravenously 'with my heart'; but my GJ tube is still a huge part of my world as I use the J portion for medication and the G portion to drain my stomach (yes, it's as nasty as it sounds). My central line, my GJ tube and my DBS are my miracles...AND they qualify me for the elite status of "Cyborg". You can't beat that!

                 It’s my Tube-iversary ~ Memories


~ Meg Bernard; Small Girl with Parkinson’s

Happy “tube-iversay” everyone!
November 28, 2015 marked the one year anniversary of the absence of all things swallowed; the insertion of my Jejunostomy feeding tube (it bypasses my stomach feeding directly into the second part of my small intestines). It feels like only weeks ago, yet also a lifetime ago.

To read the entire article.... which you should... click here.

As much publicity Parkinson's has received because of celebrities such as Michael J Fox and Mohammed Ali, we still often get asked the question, "Parkinson's? That's the one where you shake, right?" Ah, if only that was all it did, most of us would say; not that shaking all the time is a walk in the park. I've been fortunate. While my biggest challenges are dystonic storms and choking, I can still eat and drink. Gastroparesis is one of those possibilities we don't hear about.  And Meg is an inspiration to all of us, even those of us who aren't Cyborgs... yet. It's all about being alive and ready to keep learning and discovering.

Captain: Now, do you have course and speed laid in?

Wesley:  Yes, sir, they are.

Captain: Very well, Mr. Crusher. Engage





The PD We Don't See

Terri Reinhart

“Words are like nets - we hope they’ll cover what we mean, but we know they can’t possibly hold that much joy, or grief, or wonder.”
— Jodi Picoult

Tonight my dear husband, what's-his-name, made me sit down and watch a video about the non-motor symptoms of Parkinson's disease. I was going to watch it earlier this afternoon, but I suddenly had to lie down and take a nap. When I got up, I had more energy and decided to get lots of chores and errands done. This included a trip to the thrift shop where I picked up an old Victor Victrola cabinet on impulse. I have no idea where I will put it in our house, but it was too cool to pass up. When I got home, our son (John? Tom? Dave?... oh yeah, PATRICK) was there because it's Saturday and he won't pass up the chance to have a hot meal each week. He and his father helped haul the cabinet into the house.

Chris then asked what I was going to do with the chicken I had gotten out for dinner. “Cook it,” was my reply. Beyond that, I had no idea. Planning ahead isn't my forte. Eventually, dinner was made (curried chicken), Patrick left, Emma was working on her homework, and I sat down to learn about just how wonky I really am.

Here is the link to the video:

The PD You Don't See

It was humbling to watch this and recognize my own challenges with word retrieval, sleep, temperature regulation, too much saliva when I'm trying to talk, among other things. The doctor recommends we do all our important stuff in the mornings when we are functioning at our best, which is, of course, why I signed up for a 400/500 level college class that goes from 5:30 to 8:30 pm. Let's face it, by 5:00 my brain is saying “Thhhhhat's all ffffolks” and turning down the sheets, letting me go out into the cold without it.

Oddly enough, I do most of my writing in the evening. Hmm.

However discouraging these challenges can be, there is an upside to some of these strange symptoms:

Disordered autonomic nervous system – Hot flashes aren't just for women, men with PD get them, too. Saves on heating bills.

Word retrieval – I'm getting better at swearing. Those words I can always retrieve.

Impulsivity – Used sparingly and carefully, this can add a little fun into our lives. Besides, we really NEEDED an old Victrola cabinet in our house.

Vision problems – Hey, the world is just a little softer place now, that's all. And you'll always look good to me.

I'm not trying to brush off this stuff. It's important we parkies pay attentions to all this and make sure we eat right, exercise, get plenty of sleep, don't overdo it, get enough cognitive stimulation, and make sure we get out into the world. There's also some stuff I don't like to think about at all, like being more susceptible to things like strokes and melanoma. Pay attention, but don't dwell on that stuff. Make things fun.

Which is why I'm sticking to my college class, even when my brain has clocked out for the day.


The most wasted of all days is one without laughter.
— E. E. Cummings