Dark and Stormy Night

I just about fell out of my chair in the examining room when my doctor said ” oh, yes that’s very common.”   Before I tell you what is “so common”, let me give you some examples. of the weird phenomenon that impacts over half the Parkies population. 

Older woman watching little boys Artist: Vicki Hin

First, a poignant tale:  From my window, I see two little boys in the garden next door. The boys  are both dressed in white tops  and blue bottoms.  One of the boys walks away. his image shimmers (picture a 1950s TV transmittal breaking down)  and then disappears entirely.  The other boy also disappears, but not before I can see the top and bottom turn into an irrigation box with (you guessed it) a  white top and blue bottom.  My prosaic husband says the blue fabric is –a tarp.

I really can’t  tell you how long I’ve had encounters with these people–..three or four years maybe?   It’s difficult to communicate with people who don’t communicate with you.  My husband would be snorting right now that why would I want to communicate with entities who don’t exist. 

Here are my “rules” for dealing with this strange population:

–I call them the Quiet People because they are.  Not a word…not a scream, not a grunt, nada.

–It’s hard for me to believe that I’m the only person in the world that can see them.  I’m just not that creative!  When do my script residuals start flowing in?

–Like Dracula, these people hide themselves from the sun, or more accurately, humans.  If I approach them with a camera, Poof! they disappear. They disappear even faster when the camera is wielded by a “normal” human.

Many more notes  and warnings I could be writing but. will stop here for now.  The secret word referred  to in the first paragraph is — psychosis.

To my horror, over half of Parkies’ patients experience psychosis.

I am determined to get out more blog posts on a more timely basis, so I hope to have a follow-on blog soon. 

In the meantime, I am entertained by illusions most nights. I think my favorite illusions are the angels on snowmobiles.

Or…are they real?

A Smile of Satisfaction

The Satisfaction of A Job Well Done

 I was  wondering if I was going to see it…

and ….there….it …..was…

A lovely glow of a satisfied smile from  my optometrist. *

The optometrist was handling nothing dramatic like the Green Flash in the Tropics or the Northern  Lights in Fairbanks.  But she was wrestling with a hard problem: – keeping the steady visual lines of a prescription against  the roiling ocean s of visual data.  I am bobbing around so much with dystonia that I routinely sink below  the “Zoom frame”. The   prescription should also minimize double vision problems,  a common problem among  Parkies.(including me).

For more information about visual problems affecting Parkinson’s patients, see Laura’s favorite Parkinson’s advocacy group (MJFF, visual).

*As a general rule, medical professionals are not identified in these blogs.

image curtesy of Lucy Kennedy

Apology

On December 10th, 2022 of last year I published a blog post . The blog post was about my encounter – I guess you could call it that – with Minnie Mouse. And  then I didn’t publish a thing for months.  I am touched that several people contacted me and wondered  if I was giving up the blog.

Nope. Just had too much to do on other stuff. Lame excuse for seven months of tardiness, but that’s the truth. See the next blog post for description of an activity that took up a lot of our time.

Are you going to continue with the blog?

You bet!

Are you going to continue to procrastinate?

You bet!

(Hey guys – it’s just a blog.)

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A I E E E A I E E E !!!!

I  J U S T   R E A L I Z ED
A L L   M Y  W E B   S O F T W A R E   I S 
 O V E R   1 0   Y E A R S   O L D!!!!!

“I have not failed.”

Thomas Edison had it right when he talked about the 10,000 ways that won’t work. One of the most time-consuming exercises that Paul and I got into this last quarter was to act as Junior Researcher, and start researching the electrode setting and the pharmaceutical setting. Neither of us have been very diligent on logging the results, but we’re getting a picture of which setting causes the least damage. The particularly scary damage has been to my butt. I find myself regularly sliding down onto the floor as I crash. My wonderful neurologist remains faithful on trying to get a better condition for us from the electrodes… but I think we all now this is not going anywhere.

Minnie Mouse saves the day!

My last post abo1ut the DBS (Deep Brain Stimulation\) operation was somewhat pessimistic. No cloud of blue smoke, no space buzz from George Jetson, in short – No action. How could I believe this was all going to work? But now: …….

I believe!

What caused this epiphany? Minnie Mouse. Huh? Keep reading Io

rrWhen we were at the second “tuning” session, the neurologist was cranking away at “pulse width” and other electronic ephemera.
in mid-word, I started squeaking like Minnie Mouse, This was not as adorable as it might sound since my chest was also getting tight. The neurologist said “Well, I guess that’s your limit,” and cranked the setting back down. Immediate relief — and the confirmation that my brain controls my body (however imperfectly).

Now I am going through the tedious but necessary process to “try on” all these combinations — every couple days I try a new combo. Some make me very unsteady, some make me feel like I’ve just drunk seven cups of coffee, and some make me feel “calm and positive”. Gotta be ready by my 3rd -and last – tuning appointment .on January 18

May your New Year .be “calm and positive”.

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The Continuing Adventures Of ***Electrode Gal***

Yep, that’s me, Electrode Gal. Here’s what’s happening lately:

— Oct. 21: The neurosurgeon and his surgical team implanted two electrodes (one for each side) in my brain. Operation took 3 hours. Yes, the rumor is true – they really do wake you up in the middle of the operation to ask some questions. They reported my only response was “Ow!” Mercifully, I don’t remember a thing. I never realized the importance of the anesthesiologist in an operation.

Superheroines even get to have bad hair days.

–Oct. 28: The second procedure was to make a little flesh pocket in my .chest area, and place an electronic controller in it. You direct the controller by a Blue Tooth remote control. Again, I didn’t remember a thing. (Thank God.) But still, nothing was turned on.

–Nov. 10: At long last, it was time to turn the joy juice on! I’d be able to straighten up and walk normally – Yay! I tried to picture/ hear/ feel what this would be like — A big cloud of blue smoke?
A whine like an old fluorescent light fixture? A tremor through the complicated wiring?

Nope. I got nada, nothing.

I was instructed to gradually juice up the amplitude, which I did for several days with hope every morning that some thing would improve.

Nope. I got nada, nothing.

Actually, two things changed — Dyskinesia (Bozo doll bouncing) was longer and more violent, and my right hand tremored (normally very rare for me.

In frustration, I sent an email to my doctor asking what should I expect? He responded:

“It is far too soon to draw any conclusions about DBS. The effects on your Pisa syndrome are going to be very gradual over months..”

Oh. I guess this is the fine print.. My success with DBS is TBD. Stay tuned

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Thoughts Before The BIG “Procedure”

Random thoughts during this busy week before “Deep Brain Stimulaton”.

UPDATE, 10/22/2022: Laura has now safely gone through “the procedure”.

• The first question everyone has is “When?”
• I go in tomorrow (Tues, 10/18) to get a detailed MRI of my brain -this will be the roadmap for the surgery.
• Surgery #1 (electrodes into brain) is this Friday, October 21.
• Surgery #2 (controller into chest) is a week later: Friday, October 28 .

– I have deliberatedly used the word “surgery” just as a little tweak at the hospital. They have obviously done a fair amount of training with employees that instead of using “surgery” or “operation”, they use “procedure” instead. …….less scary sounding……..

• – My wonderful husband has been a prince all week : driving me to appts.,making my meal, washing the dishes, well, you get the idea.

• – More wonderfulness: When we learned we had a 6an call, Paul booked a roon at the Hotel Sorrento, a historic romantic hotel just a block from the hospital.

• – My wonderful friends also have been sooooo supportive. My walking group went so far as to throw a great party for me! I had asked folks to explore Goodwill and the back of their closet for beanies, caps, and the like so I could cover my bare head untl the hear grows out. I got stylish watch caps among other head coverings. One friend went
• (ahem) “high hat” and got me a fabulous red hat suitable for weddings, funerals, and Baptist Sunday services. So I’m set.

-I had a big wad of questions that were listed in the last blog post, but I didn't take very good notes when I talked with the chief neurosurgeon and a member of his surgical team. I could see they were calm and confident in their skills. And he had me with his response to my question : “What’s the one word I don’t want to hear from your team?”

-” Ooops” \

What if they hadn’t found the glass slipper?

What if the prince’s staff hadn’t found the glass slipper ? Cindarella could have stumbled and the shoe (s) ended up in the palace shrubbery. And Cindarella? – back to the janitorial business, I guess.

Cindarella is on my mind because part of me is feeling like a princess — I hope the surgeons doing the Deep Brain Stimulation (DBS) on me and will wave their magic wand and all my Parkinson’s symptoms will –Poof!–disappear!

Alas, life doesn’t work that way, so I am bracing for more physical theory and continuing to try to stand upright. I used to take for granted simple things like standing. No longer — Some days, you just can’t find that glass slipper.

An earlier blog has Q&A on the basics of DBS. Most of my remaining questions are specific to the surgeon and hospital doing the surgery (these days, they use the less scary sounding “procedure”.)

These questions include the following: (Feel free to send me additional questions, but I think I’ve only got a half hour with the surgeon.) I’ll update in another blog when I get answers.

What is hospital’s definition of “success” for this procedure?
“Success” would be that pain management for motor symptoms is more effective than through medication alone. [another entity’s definition – this is placeholder text.]

What is the percentage of successes for DBS surgery at this hospital for the last couple years?
[TBD]

My expectations – realistic?
I want to see improvement in my ability to stand up straight. and subsequent pain reduction in lower back. I hope I can minimize dystonia, dyskinesia, and “”Pisa”.

Briefly describe the procedure, especially the part where you wake me up during the surgery.
[TBD]

What is the likelihood of DBS having a permanent impact on my cognition or memory?

Equipment: The hospital usually uses Medtronix equipment. However, I wanted the rechargeable batteries because I don’t want to go thru another surgery in three years to replace the battery. BostonScientific has a new FDA-approved product (“Versice”) that is rechargeable. Medtronix’s rechargeable is still in the FDA approval pipeline.
Comments , Concerns? Have you worked with Boston Scientific products?

Why does being rechargeable enable patient to skip the three-year replacement surgery? Wouldn’t the product \get some serious wear and tear inside your body?

Visual Embroidery

Unlike Jimmy Stewart, I do not see any 6-foot white rabbits. (From the movie “Harvey” (1950)

Spiders! My house is full of spiders!

Fortunately, they all disappear when I approach.

What’s going on here?

Visual hallucinations. Turns out visual (and auditory) hallucinations are fairly common for Parkis: 20-30 % of Parkis, according to one source. I have softened this scary label to “visual embroidery” which is not only less scary but also more accurate (at least for me).

I’ll describe what this “embroidery” looks like in a moment, but first, let me assure my readers that this does not impact my driving in any way. I do not see 6-foot white rabbits or construct mythical children running across the street. My attention is focused on my driving.

I also know that my hallucinations are harmless and I can dismiss them easily. Can I stop them altogether? Not without a lot of work, and why would I want to? As one Parki said to me, ‘Hallucinations? That’s the fun part!”

So here are some embroidery descriptions:

–Spiders. We seem to have a number of little black pieces on the carpets, probably due to my husband’s predilection for black socks. I look at the black spot and it immediately sprouts legs and starts moving. The moving is so realistic that I frequently have to touch it to assure myself that it is just an inert piece.of lint. Complicating things is the fact that there actually are tiny spiders in this house.

–Fashion Design: I see someone (live or video). and their humdrum pants turn into a canvas for embroidery — rosettes or stripes (or both!) down the side of their pants. Doesn’t last very long.

–Dirty shadows — My husband came home from a hike and I was horrified to see a massive amount of dirt on his face. Then he turned his face and poof! the dirt vanished — it was the shadow in his laugh lines. Same thing with a bed sheet — it looked like the sheet was full of dirty smudges. Then I pulled the sheet tight and once again, poof! the smudges vanished.

–Reminder to clean up bathrooms: — This is kind of a variant from the dirty shadows category. Difference is instead of smudges I see a band of black scum dots that look like mildew. It’s not so easy to get rid of the phony scum. You can’t really move a toilet to get a better light that takes away the shadows.,

–Editing — Especially late at night as my eyes are getting tired, I start seeing editing on what I’m reading — Cross outs, words in red, that sort of thing.

NEWS FLASH

I have been scheduled for DBS surgery on October 21 – Yay!

Wheelchairs

My cousin passed away recently, and I was touched after reading her daughter’s beautiful letter that the first word the daughter used to describe her mother was “polite”. The chances of “polite” appearing in my obit are on par with, say, the chances of Congress passing meaningful gun control legislation.

Yes, I really have to watch myself how I respond to The Question without sounding rude. The Question is “Can I help you?” My standard response is to smile and say “No, but thanks for the offer.” I’d be curious how other Parkies handle this.

Lately, though, offers of help are sounding,……..well, helpful. Like yesterday, when I got tangled up in my sports bra (you had to be there). A lady in the locker room asked The Question and I responded positively. Problem solved .

Which brings us up to the title of this post: Wheelchairs. Last year, when we were departing from Iceland, the airport was crowded and chaotic, and several people suggested my getting a wheelchair assist. Oh no, not I ,was my reply. We were in the middle of the process and the middle of the mob, and getting a wheel chair just sounded like one more hassle. Plus, deep in my heart, I couldn’t bring myself to be “handicapped” or “disabled”.

But for the European trip this year, Paul insisted on a wheelchair assist. We only had an hour between planes at Charles de Gaulle , an airport approximately the size of Liechtenstein. Fortunately we got flights changed so we had a four hour layover at Amsterdam. But still, there were long corridors to walk, and lines to get through customs, security, etc. I can barely stagger down to my mailbox, much less navigate a huge international airport.

So, bring on the wheelchairs! I guess when you’re walking with your torso at a 90 degree angle, you are kinda disabled. I decided to apply to a museum my somewhat changed attitude about assistance . On this trip, we had a few hours to go thru the Rijksmuseum in Amsterdam. I inquired at their central desk and was quickly placed in a wheelchair, no questions, no charge.

If you are dubious about your movement-impaired body handling a trip involving large airports and/or museums, simply ask about wheelchair assist with the customer service line for your airline (or the museum). I would suggest you mention whether you are ambulatory enough to get out of the plane and handle steps and ramps on the jetway. Special equipment beyond a wheelchair would be needed for these areas.

Happy travels!