Deep Brain Stimulation

“Know what you want to know.” — Marion Lewenstein

There you have it – the distillation of my Stanford education in six little words. Save all that expensive tuition and meditate on this quote instead.. Marion Lewenstein was my journalism instructor at Stanford- I had the pleasure of visiting her during a reunion in 2017. She died last year (2021) at 93.

But I digress. What do I want to know about Deep Brain Stimulation ?

Why am I investigating DBS?

I consider that there are three stages of therapy for PD:
1)Ignore it
2)Apply non-invasive therapies like drugs and physical therapy.
3) Surgery, specifically DBS. 

I was disagnosed 10 years ago. While I haven’t exhausted every drug in my neurologist’s bag of tricks, I’ve certainly sampled many.  So the surgery is  the next level to investigate.

What is DBS?

Deep Brain Simulation is a brain surgery to implant a device that sends electrical signals to brain areas responsible for body movement.  The most common targets are internal globus pallidus (GPi) or subthalamic nucleus (STN),. The exact mechanism by which DBS works is not completely known.

Who is appropriate to have the surgery?

The ideal candidate for DBS surgery is under 70 years old and is in good health.  The equipment  requires a fair  amoun of self-management, so patients slipping towards dementia are not good candidates.   Patients who fluctuate between “on” and “off” medication states are usually good surgical candidates, as are those who have dyskinesia.  (I haven’t detected an on-off pattern  of medication effectiveness, but I certainly I’ve got the dyskinesia.)    Patienets whose main complaints are non-motor   also  would be not good candidates.

Do they really saw your brain open with only local anesthetic?

In DBS surgery, the surgeon places thin wires called electrodes into one or both sides of the brain, in specific areas (either the subthalamic nucleus or the globus pallidus interna) that control movement. Usually you remain awake during surgery so you can answer questions and perform certain tasks to make sure the electrodes are positioned correctly

What’s the history and track record for DBS?

Around the world, more than 150,000 patients have had DBS for Parkinson’s or tremor with a success rate of 95%.  The operation was developed in France in 1987.

What is the definition of “success”?

While DBS does not halt disease progression in PD, it provides durable symptomatic relief .  “Success” would be that pain management for motor symptoms is more effective than through medication alone.  “Success” for DBS does not mean you can throw away all your pillboxes; most patients still require medication but (typically) not as much as before the surgery.

What symptoms does DBS help?

The surgery works best for motor symptoms (slowness, stiffness and tremor). It also may help some walking problems — especially those caused by slowness, dystonia (abnormal muscle cramping), or dyskinesia (involuntary movement).

What are the side effects and risks?

Check out  this link for a good summary of pros and cons. The biggest risk is of course:

Hey! this is brain surgery!!

DBS may worsen thinking or memory problems.  (Uh oh, my memory has suddenly  gotten much worse.  Couldn’t even remember my mother-in-law’s  first name!

Who makes the DBS equipment?

Abbot “Infinity”

Allows directional stimulation to guide electrical stimulation toward areas associated with symptoms and away from side effec.t  Non-rechargeable battery.

Medtronic “Activ`”

First DBS vendor (from 1997).  Choice of rechargeable or non-rechargeable batteries.

Medtronic “Precept”

Just approved in 2020.  First-of-its-kind device can sense and record an individual’s unique brain signals. This data could be used (in future) and “might eventually lead” to more precise DBS adjustments.  Curently has directional stimulaiton. (Hey kids!  More fun than Easter Egg hunts!  Take a look at the original source and count how many weasel words you find!)

Boston Scientific,”Vercise”

Vercise’s brain leads allow directional stimulation, albeit by a different technique than Abbott’s and Medtronic’s versions There are three different Vercise models. Some have rechargeable batteries. And some let the clinician visualize models of where leads are in your brain while finding or adjusting settings.

What are my expectations? Realistic?

My biggest need right now is to straighten out my posture, so I can stand and walk. I’d also like to get rid of the “Bozo-balloon bouncing” (dyskinesia).  I don’t know if this direct  electrical stimulation is an answer… I will pursue during my assessment day, June 2.

Dystonia vs. Dyskinesia

What do these $10 buck medical words mean? If you go back to the Greek origins, “dystonia” means “bad (muscle) tone” and “dyskinesia” means “bad movement”,

Doesn’t help much — I think the photo may be more meaningful, at least to illustrate “dystonia”. This (depressingly) has become my standard posture since my body went to crap last year. When Paul gives me a “hug massage”, the first thing he does is push my right hip very far to the left. Yes, it hurts. And the muscle has been in this posture for so long, that you can feel it go “boing” right back – as if I was bound up with bungee cords.

What about dyskinesia? If you’ve seen Michael J. Fox being interviewed and he’s bobbing around? Bingo, that’s dyskinesia. I call it my Bozo Doll bounce.

These further characterizations from the medical pros are helpful:

Dystonia

• Prolonged, involuntary muscle contractions
• Affects a specific muscle or group of muscles
• Causes abnormal posture or muscle spasm
• Contorts part of the body
• Causes pain (sometimes debilitating)
• Tends to occur when effects of PD medication dip

Dyskinesia

• Involuntary, continuous muscle movements
• Affects large muscle groups (arms, head, trunk, legs)
• Smooth, repetitive movement often described as a rolling or writing motion
• Can begin suddenly and stop after several minutes
• Not typically painful (I’d disagree with this one.)
• More likely to occur when PD medication effects are at their peak

So here’s the wackiest thing about dyskinesia: what causes it? Dyskinesia is considered to be a side effect of long-term use of dopamine replacement medications. Yet it frequently is part of the symptom management. It’s pretty hard to manage PD without fake dopamine (levodopa)..

Keep trying new things

Yes, that really is Laura on a stand-up paddle board. It looks like I am being carefully bolstered by the folks at either side of the board, but I recall there was a brief moment (18 seconds?) they took their hands off and ta-da! –I was standing on the board, all by myself. The second shot shows a fellow beachcomber celebrating my tiny victory while I continue to wobble on the board.

The occasion of this little adventure was an “Uncruise” tour of Baja California. (See the ship in the background). Paul and I are becoming stereotypical American retirees – lots of travel with much less effort — cruises. When I was younger, the idea of a cruise — or any group travel– was anathema to me– bunch of old geezers who never really travel in the country they are “visiting”. Now that I am an old geezer, with impaired walking, cruises look pretty good. All your lodging and food are taken care of, and there are shore expeditions with very knowledgeable guides to give you a tiny coastal taste of the country. I hasten to add that enormous 10-story cruise ships (e.g., Viking, Holland America) are still not for us. This cruise had 38 passengers (out of 60 capacity). The previous cruise was 101 out of 200, And the next cruise is full-up – but it only holds 12 paying customers.

Yes, I am still walking-impaired. If you look carefully at the two photos, you will notice I’m jutting out my right hip and leaning left. This is the posture issue I’ve been fighting since at least last summer when it turned from an occasional irritation to All-Pain-All-The-Time. I’m finally starting to grasp that I have both of the “dys kids” – dystonia (involuntary muscle contractions) and dyskinesia (involuntary shaking, twisting). More about the “dys kids” in a future column.

I’ve experimented with reducing some of the five medications I take three times a day. What finally worked was splitting the carbidopa/livodopa pill. I’ve also gone back to the physical trainer I’ve worked with before. And in June, I will spend all day at the hospital being evaluated for DBS surgery. So keep trying new things (or at least take a new look at old therapies).

YouTube extra: Cruises make me think of marines, which makes me think of….HMS Pinafore.. Here’s “I am the Monarch of the Seas“.

Still crazy after all these years

“You’re not crazy enough”, said the pleasant young man in the white lab coat.

Hmm….I wasn’t sure how to take this statement.

Insulted? Ya want crazy?? I can give you crazy!

Complimented? In some circles, crazy is a good thing.

Disappointed? I wasn’t going to get on the research project. But no worries, many more research projects out there.

I think what I really felt was irritated. I had driven across town on Seattle’s favorite highway, 405, and I believe they could have figured out I wasn’t demented enough via phone or Zoom call. (True confession: I can’t remember if Dr. White Labcoat said “crazy” or “demented” Either word makes for a good story, but “crazy” has cooler YouTube /extras.)

I am not naming the commercial company, which is not a drug manufacturer but rather a facility that specializes in Phase 2 testing. (Phase 1 testing establishes efficacy and safe dosage. Phase 2 is usually a much larger test(s) to identify side effects and efficacy over a wider population.) In this case, they were testing a drug that (cured? prevented? lowered risks for?) Parkinson’s dementia (different from Alzheimer’s).

This company struck me as pretty sloppy, especially for a company which specializes in Ph. 2 testing. They must pay their employees a bonus for every testing participant they are able to round up – I think I had 4 or 5 people from the company call or email me. Yet they didn’t seem to know much about the projects they were recruiting for. And when I asked for an “informed consent” package, they seemed to not know what I was talking about.

With other research projects I’ve been involved with, the informed consent is the first communication sent to potential testers, and the test managers usually don’t move a muscle until you send the signed form back. The informed consent typically includes a description of the symptom/disease the drug is supposed to affect, details about drug and testing, requirements and exclusions for testers, and description of side effects and other possible risks.

Despite this rather bizarre episode, I encourage you to volunteer for research. A good place to start is the PPMI project, which MJFF modestly describes as “The Study that Could Change Everything”. They are recruiting not just Parkies, but non-Parkies as well. Check it out .

YouTube extras: The only thing better than hearing Billie Holiday wrap her voice around “Crazy He Calls Me” is hearing Patsy Cline s-t-r-e-t-c-h every syllable in Willie Nelson’s “Crazy”. And then you can mellow out with Paul Simon‘s “Still Crazy After All these Years”

No More Mr. Nice Guy

Michael J. Fox, co-founder of Michael J. Fox Foundation

Would you lie to this man? How can you look at that baby-faced grin and still be not totally truthful on his surveys?

I recently filled out my 25th (!!) Fox Insight survey for Michael J. Fox Foundation (MJFF). This is a longitudinal (repeated over time) project to create a database of People with Parkinson’s over time . Every 90 days, MJFF sends you a link to the survey, which includes questions about drugs, motor symptoms, non-motor symptoms, and on and on. Inevitably you get to the questions on depression, something like

Have you experienced feeling sad, ‘low’ or ‘blue’ in the last month?
I answered the usual: “No”.
Truth: any Parkie who claims they do not experience sadness at least once a month is lying — especially when the month is the constant twilight of the Pacific Northwest in December. Yep, caught me, Michael.

and questions on cognition:
How much DIFFICULTY do you currently have doing more than one thing at a
time?
“A little”.
Truth: I like to think of myself as an imperturbable multi-tasker, I’m sure I previously answered this as “None”. But now I have to admit (at least to myself) I can’t multitask anymore. That’s why I had to give up skiing — too many decisions to make in an instant..

How much DIFFICULTY do you currently have learning to use new gadgets or
machines around the house?
“None”.
Truth: Still trying to figure out new toaster/oven – 25 minutes for toast – really? Maybe one day I’ll look at the manual.

I try to be positive in my management of Parkinson’s but after this survey and the challenges I’m having with my posture, I started thinking “No more Mr. Nice Guy — I’m going to be truthful. People are going to know I’m in pain.” Fortunately this attitude did not last very long. I found out being grumpy was too much work..

And I remain stymied as to what the right response is to “How are you?” I am most definitely not “fine” but no one wants to hear a long recital of what body part is in pain today. I tend to answer “I’m (pause) OK”. The even worse question is “How ARE you”, delivered in a funereal tone;, a few times it has been followed by a “You’re so brave” comment. Really freaks me out.. Just trying to play the hand I was dealt.

How do other Parkies handle the “How are you?” question?

Let me end this cranky column with this positive mantra from friend and fellow blogger, Carol Clupny.

I am at peace. I choose joy. I change my adversities into adventures.  I keep chanting my mantra of hope.  Each day I set out to have the best day of my life.”

Quackery

License: Creator: Hulton Archive | Credit: Getty Image

You think wearing masks is annoying now? Look what you might have been wearing in the old days -1656 –later than the medieval Bubonic Plague, but presumably during one of the many pandemics that impacted major cities in Europe. The beak symbolized a doctor who would probably do you more harm than good — what we might call a quack today.

The current pandemic has had its share of quackery.. There’s even a Wikipedia page for a “List of Unproven Methods for Covid-19” . My personal favorite is Trump’s suggestion of drinking bleach. I didn’t hear of widespread deaths after he made this astounding statement so I guess even his followers had sense enough to recognize this was an off-the-cuff remark, albeit a dangerous one. (I remain mystified why someone would consider Anthony Fauci (FDA) a tool of the devil, but believe whoever was the idiot who claimed that cow dewormer (Ivermectin} was a cure for Covid.)

I could use some magic powder right now, even if it turned out to be quackery (although I don’t think I’m down to dewormer yet). I continue to struggle with a drastically twisted posture, and I keep thinking I would do anything to solve this problem. But I realized I was lying to myself. I had sought out help from my physical therapist and personal trainer, but am really not incorporating these new exercises into my routine. As I type this blog, I keep falling over to the left as if attracted by a giant magnet. I can’t keep my feet flat on the floor (even using shoe boxes).

So I’ve contacted my trainer for another precious appointment. It just occurred to me that I should video the exercises. (duh) In the meantime, here are a few items that have caught my eye — are they useful or are they quackery?

New pill: Of course my neurologist prescribed a new pill. Doesn’t seem to help – if anything, I’m bopping around more. I guess I need to do some more experimentation on what is the right dosage.

Virtual gaming: Now this sounds like fun! Strap on your virtual reality goggles and get ready for the shark. James Thomas , PhD, a PT Professor at Virginia Commonwealth University, is heading a team developing VIGOR (Virtual Immersive Gaming to Optimize Recovery in Low Back Pain). The team is tailoring video games to Parkinson’s patients with “poor trunk control”. (That would be me – I literally can’t sit still as I type this.) An example of a game: scooping fish that leap from the water while dodging the attacking shark, who shows up every few seconds. Dr. Thomas said, “You feel like you’re playing a game, but….we’ve developed algorithms to tailor the game experience to the individual and encourage….better trunk control.”

ECT (Electro Convulsive Therapy) Just the name alone sounds repulsive. The explanation is even more horrific: “ECT is a brain stimulation treatment that sends controlled electric currents directly into your brain to intentionally trigger a mild generalized seizure in an effort to forcefully “reset” your brain.” Yes, this is the “electroshock” featured in so many 1950s B-Movies. ECT appears to be aimed primarily at severe psychiatric disorders. but I found it also being used for “treatment -refractory” Parkinson’s. (I love learning new buzz words! “Treatment-refractory” is a ten-buck word for “treatment resistant”,i.e., the drugs haven’t worked.)

And more…fecal transplant…. Fortunately it’s not indicated for Parkinson’s – I just can’t bring myself to describe it in, um, detail.

I can see…not too clearly now

Laura stares into the computer with her new “Harry Potter” reading glasses.

I was hoping there was some part of my body that was not affected by Parkinson’s. Let’ see… I think I’m still OK on my teeth, hair and hearing – no impact there. But vision – yep, that appears to be affected.

I caveat with “appears” for two reasons: 1) My neurology degree (or in this case, my neuro-ophthalmology degree) is still in the mail. 2) I’ve always had bad eyes. I inherited from my dad my sparkling wit, a big rectangular forehead, and very astigmatic Irish blue eyes.

I recently went to the eye doctor for the annual exam. Same pattern as last three years (even with two different docs): Prescription hasn’t changed significantly, but I report blurriness and double vision. The prescription already includes prisms for the double vision and she recommended separate reading glasses for blurriness. (This helps a little bit.)

The main problem with my eyes is simply age. I’ve been wearing progressives for over 20 years. The eye doc said I had cataracts before she even looked at my eyes with her magic light. How do you know, I asked. “You’re over 60.” (Yes, she needs to work on her bedside manner a bit.)

I think where Parkinson’s rears its ugly head is my perception that the eyes aren’t working efficiently together. This makes sense – you have eye muscles controlling the eye movement, and all my muscles are not communicating very well with my brain. The eyes not working well together would explain the double vision and contribute to the blurriness.

I checked out the Parkinson’s organizations’ websites (see links below) and found that eye movement and double vision can indeed be Parkinson’s related. Also, there exists a specialty of “neuro-opthamology” who “diagnose and treat the vision manifestations of neurological disease”. I haven’t run across one of those yet.

There are other potential vision problems for us Parkies, such as dry eyes, visual hallucinations, and -my personal favorite, fortunately very rare- “involuntary eye closure”. Links to vision pages:

• APDA
• Parkinson’s Foundation
• Michael J. Fox Foundation

YouTube extra: I Can See Clearly Now. I don’t know who first recorded this. This is Johnny Nash’s verison which I like a bit better than Bob Marley’s.

Protecting the community

Photo Credit: Seattle Times

There were a couple weeks – maybe three – of optimism in late June. After living in our pandemic caves, we all emerged blinking into the hopeful sunshine.

The optimism has vanished in the wake of yet another surge of corona virus. The US has the dubious distinction of having (cumulatively) the most cases (40 million) and the most deaths (nearly 650,000 – roughly the equivalent of wiping out Memphis, Tennessee) in the world. Yet 47 % of us – nearly half the country — are still not fully vaccinated.

The reasons given are many, and constantly changing. Let’s see:

• “My personal choice.” This excuse has come up with other Public Health campaigns such as seat belts, drunk driving, and indoor smoking. It’s your personal choice how many beers you drink, but once you get behind the wheel, it’s a DUI.
• “I don’t trust FDA, government, Fauci (etc.)” Who do you trust? Those charlatans who are pushing bleach and cow dewormers?
• “It’s not natural.” So you’d like a nice natural virus instead?
• “I’m waiting.” For what? It’s been 8 months since the vaccine has been out.
• “I’m nervous about side effects.” Millions of people have been vaccinated with no or minimal side effects (mild fever or headaches – normal signs that your body is building protection).
• “China and Bill Gates are in cahoots to sterilize the population.” What can I say?
• “No one can tell me what to do.” Not even your unprotected, under-12 third grader?

I find this vax refusal baffling and frustrating in the face of these undeniable facts :

• The vaccines are safe – millions of people have gotten their jabs without turning into zombies.
• The vaccines are effective – Well over 90% of the current surge’s cases and deaths are unvaccinated.
• The vaccines are really are our only weapon to tamp down this virus. Masks and social distancing help but are not the protection of a vaccine. Vaccines are how we protect ourselves and our community.

So I have some questions:

— Who are these people who deliberately spread lies on social media and why?

Some of them have been identified as supplement sellers offering a Covid “cure”, but is there really enough money in supplement sales to motivate making up wild stories about Zombies and sterilization?

–What need is being fulfilled for people who read these wild stories and believe them?

— If our marketing wizards can sell Chicken McNuggets, why can’t we “sell” vaccines? Where’s the marketing campaign?

And finally –

–What can we do to bring back a sense of caring for our communities?

Iceland

Laura at Dettifoss, the most powerful waterfall in Europe. I am attempting to stand straight.

“When a door closes, I don’t bang my head on it more than three times to make sure it is closed. I look for a new door to open.”

W. David Hoisington, Ph.D. Dr. Hoisington blogs under the pen name “Dr. C” for Parkinson’s News Today.

I have been blessed by many opportunities for foreign travel both before and after my PD diagnosis. During my post-PD travels, I have:

• Stumbled down the steps of the ruins of Machu Picchu
• Ogled cheeses at farmers’ markets across France
• Hiked across yodel-worthy Alpine meadows in the Dolomites
• Surveyed the fish markets and port distillers of Portugal
• Made the 12-mile Tongariro Alpine crossing in New Zealand in time (just) for the last bus
• Added to my tiny countries collection by visiting San Marino and Andorra
• Gotten berated by the instructor for not rolling my pasta thin enough in Bologna
• Been awakened by howler monkeys in Costa Rica
• Stepped around the crowds on the narrow boardwalks over Plitvice Lakes in Croatia

And….

• Walked 0.6 km to the largest waterfall in Iceland.

In some ways, the last listed adventure has been my biggest accomplishment. Certainly, it is bittersweet. Why? Because I walked twisted at nearly a 90 degree angle. The twisted posture that I have written about before had deteriorated alarmingly during July. But the Iceland cruise at the end of July had long been scheduled – a replacement for a Covid-cancelled trip last year.

I think this is the first trip in which PD has reared its ugly head and interfered with the trip. Suddenly, walking any distance became not realistic because of the constant pain in my lower back. The stress of the pain from the twisted posture just made things worse – more awkward gait, more twisting.

Suddenly the shore expeditions that included the word “hiking” in the description needed to be transferred to expeditions that included the words “bus tour”. The walking I forced myself to do was limited. I was so bent over that I started to get pitying looks from fellow tourists and worse yet, one of my shipmates gushed “Oh, you’re so brave! Such an inspiration!” Oh, puh-leeze…..What do I look like? A Hallmark card?

Airports are delightful, calm places these days….Keflavik Airport was no exception. Every cruise ship and tour in Iceland appeared to have ended their tour at exactly the same time, so the airport was packed. I had seriously considered arranging for a wheelchair (for the first time ever) but I thought it would be too much hassle — and anyway, I couldn’t quite bring myself to succumb to a wheelchair yet. It took about three hours to get through numerous lines and yes, I was stooped over the whole time. My wonderful husband carried my daypack most of the time in addition to shouldering his own daypack and a really heavy, large duffel bag.

“This too shall pass.” Hey, I got to go to Iceland! Referring to the quote at the beginning of this post, I’m not ready to admit that the door to travel is closed, much less start banging my head on the door. But I’m not ready to start planning the next trip until I can walk comfortably again. I’m working on it.

If you’d like to see our photos from Iceland, I put together a 10-minute slide show. To receive the magic YouTube link to the show, respond to this post with a comment.

Dyskinesia

What is dyskinesia? It’s a ten-buck medical word for wobbling around. – involuntary movement. Have you ever seen Michael J. Fox being interviewed? That head bobbing, body jerking and all those movements that make you squirm to watch is dyskinesia.

Dyskinesia can be a symptom of Parkinson’s and/or it can be a reaction to certain drugs, classically levodopa – what I call “fake dopamine”. Levodopa can have “on” and “off” periods. Dyskinesia varies a lot from patient to patient, but typically occurs during the peak period for the levedopa, dose, often with other PD symptoms well-controlled. The patient may not be aware of the dyskinesia – this unawareness is called anosognosia (another ten-buck word).

Dyskinesia is estimated to impact 30-90 percent of Parkies (an estimate so wide as to be useless). Here’s a slightly more precise estimate: “In a study, 70% of PD patients who developed onset of symptoms of PD between 40 and 49 years had dyskinesia after 5 years of treatment in comparison to 42% of PD patients who developed onset of symptom of PD between 50 and 59 years.” 

These tidbits are from a webinar I attended in May, delivered by Dr. Ryan Walsh, a movement disorder specialist from Barrow Neurological Institute/St. Joseph’s Hospital in Phoenix. This May the World Parkinson’s Coalition put on four days of virtual webinars, which was certainly cheaper than flying to Barcelona, where their 6th triennial conference will be held in 2023. If you wish to hear the webinar, contact me for the password. The webinar will only remain posted until August 20, 2021.

So what do you do about dyskinesia? The first thing is nothing, it’s really up to the individual Parkie how much this impacts quality of life. If you want to manage it, your doc may experiment with reducing your Sinemet (carbidopa/levidopa) and/or changing the timing and/or spreading out the Sinemet. Sinemet is normally taken every 4-5 hours, but there is a Sinemet ER (Extended Release) which spreads itself out over 6-8 hours. There’s also Duopa, the brand name for a product that uses a surgically implanted pump to steadily feed carbidopa/levidopa directly to the intestine.

My dyskinesia is very mild and not continuous (Thank God). I call it my “Bozo Doll” action because I feel like I’m bobbing around like one of those inflated toys you push over and it pops right back up. I first reported Bozo in 2018 (not coincidentally when I first started using Sinemet). I held off on doing anything about it until mid-2020, when I asked my doctor for a prescription for Amantadine. This drug is the only drug specifically approved for dyskinesia. Worked like a charm – no bobbing, no Bozo….for now. Yay! And another Yay! — Dr. Walsh reports that there are three world trials going on right now for new dyskinesia drugs.

YouTube extra: Bozo the Clown show from 1966. Remember watching cartoon shows like this after school? This one makes me cringe – if you weren’t afraid of clowns before, you will be after seeing Bozo.