Author: Bill Stamey, M.D.

A neurologist trained in movement disorders, Dr. Stamey has no relevant financial or nonfinancial relationships to disclose. His artistic rendering is by Emily Stamey. Maine PD News receives no outside funding. www.mainepdnews.org

Understanding Parkinson’s: Live Well Today

There will be an educational meeting for people with PD, caregivers, and community at the Hilton Garden Inn of Freeport, Maine from 9:30am to 2:30pm (lunch provided) April 28, 2024.

Speakers will include:

Sarah A Dodwell, MD
MaineHealth

Michael S Kleinman, DO
MaineHealth

Michele Delisle
Occupational Therapist, Back In Motion Physical Therapy

Aimee Reilly, LCSW
Behavioral Health Clinician III at MMP Neurology

Roople Unia, MD
MaineHealth

The meeting is free and open to the public but you are advised to register as soon as possible if you would like to attend as there is limited capacity.

To learn more please visit the announcement on the Parkinson’s Foundation website at Understanding Parkinson’s: Live Well Today | Parkinson’s Foundation www.https://www.parkinson.org/events/2024/Maine

Click the link to register near the top of that page, or click here: Parkinson’s Foundation (convio.net)

Midcoast Parkinson’s Support Group – Camden

Monthly meetings, free and open to anyone living with Parkinson disease, their family members, friends, and caregivers.

When: 2nd Monday of each month at 12 noon

Where: Anderson Inn at Quarry Hill, 30 Community Drive, Camden, Maine

Each meeting typically offers

-a one-hour guest presentation or full group discussion

-a second hour for separate break-out sessions for those with PD and their caregivers

-refreshments and socializing including frequent laughter

Questions or more information: Cassie Walters (207) 596-3978 or ckwalters66@gmail.com

Portland Area Atypical Parkinson’s Support Group 2024 Schedule

Corticobasal Degeneration (CBD), Frontotemporal Degeneration (FTD), Lewy Body Dementia (LBD), Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP), or other “parkinsonisms”

All meetings held virtually by Zoom 1-3pm, contact from Zoom registration link: Janet Edmundson (508) 308-4195 or janet@janetedmunson.com

Sunday April 14

Sunday June 9

Sunday Aug 11

Sunday October 13

Sunday December 1

The “Parkinson’s glove”

In the last couple weeks lots of people have asked me about the “Parkinson’s glove.” Many had seen a report on the Today Show that made some extraordinary claims about reversal of Parkinson disease (PD) symptoms, and some read a much more muted report about the glove via the Michael J Fox Foundation. Many asked whether I had read the studies, and asked where they could get the glove. Although this was news to me also, because so many have asked, because it generated so much excitement, I have been looking into this and am responding with this short article, despite the fact that I am not a researcher. I just try to keep my eye on PD and will act as a science reporter here.

First, what are we talking about? A Stanford Medicine team led by Peter Tass, MD, PhD, is trialing a “vibrotactile” glove intended to lessen or alleviate motor symptoms caused by Parkinson’s disease (PD).  Per the 12/14/2022 Research News article by the Fox Foundation “results from initial pilot studies in roughly a half-dozen participants suggest that it may ease tremors, slowness and stiffness… Participants wore a glove on each hand for several hours per day. The gloves deliver light vibration through the fingertips. Study researchers suggest that this stimulation can ‘reset’ abnormal electrical activity in the brain, which happens in Parkinson’s disease.” I will discuss the pilot studies below.

Before that however, and as interesting a concept as this is, let’s linger for a moment on the point that pilot studies are not adequate to make an assessment of how people will generally respond to some intervention. Pilot studies are typically small and preliminary, meant to see if a device or medication is feasible, and for example, to see if the design should be improved before launching into larger studies. Pilot studies occur before or at the beginning of the typical phase I-IV trials needed for FDA approval.  Even if results are remarkable, we need to see how considerably more than a handful of patients will respond before we can make generalizations.

It is also a good idea to take into consideration that the lay press often unintentionally distorts what is being presented, in part because the reporters might not understand the science (or the scientific method in many cases).  Much of what has been presented in lay press so far around this topic has been testimonial, not science.  A lot of hyperbolic discussion has taken place in these reports: words such as “miraculous” or “transformative” that raise red flags. And, it is often problematic to present incomplete information via the media and generally not a good idea to have media coverage prior to completion of studies.

One more aside. Please don’t mistake my statements about the media reports for a lack of interest in, or a dismissal of this topic. That is not the case. We just don’t have have all of the information yet, even if the videos seem amazing. Looking at this from a different angle, it is also often true that revolutionary innovation is mocked or heckled prior to being understood. That is not my position either.  I would guess a lot of big breakthroughs first suffered this way.  And, I can only assume it is almost a rite of passage for any genius to first be called crazy. Considering those points, and given that we don’t want to be among those Einstein called “mediocre minds,” it is also a good idea to recall the words of Carl Sagan: “extraordinary claims require extraordinary evidence.”  Let’s keep all of that in our thoughts as we evaluate this with our mental toolbox.   

The Today Show December 13, 2022 presented clips of Kanwar Bhutani, a 58-year-old man who was diagnosed with PD at age 39.  Mr. Bhutani was shown prior to treatment with the glove on a day in 2018.  In that scene he was stuck in a doorway with freezing of gait.  Per correspondent Jacob Soboroff, Mr. Bhutani had been “bound to a wheelchair and taking twenty-five medications to treat his symptoms.  But, after his very first session wearing the gloves for just four hours, Kanwar saw remarkable results.”  The monologue is superimposed over a video of the Mr. Bhutani walking upright with a seemingly normal pace and near-normal stride.  The subject verified that this was “day one…I was in disbelief…the good news today is I only take two medicines.”   Mr. Soboroff then said “You’ve gone from twenty-five to two.”  

Point of clarification:  It is likely that Mr. Bhutani was taking twenty-five tablets daily, not twenty-five different medicines for PD.  And, it is more likely that he is taking “two” different medications with different dosing times, than two tablets daily, but that is only conjecture.  The information is not given in the story.  Perhaps he was able to reduce medications, but the representation is likely media distortion number one.

Next, there was a clip of Bhutani reportedly finishing the New York City Marathon “just three months after his first treatment.”  To this day he was stated to have completed multiple 5K races. Mr. Bhutani said, “It has changed my life, totally transformed me.”  It seems remarkable.

On the same Today Show segment a man was shown with “stiff steps”, and in the next clip it appeared the same man was working with gymnasts’ bars.  Likewise, another man with a shuffling gait was shown performing “happy dances.” The Today Show stated that 20 patients were involved in the “first round of clinical trials…So far, they say everyone that’s used the gloves has seen some improvement…for Dr. Tass, and the team at Stanford Medicine, they say they’ve had thousands of people already apply for their next trial. They hope to have the gloves approved by the FDA and available for purchase in about two years.” 

There is a lot to unpack there.  We don’t know for example, whether these patients were examined (and filmed) on or off medications, which would of course make a huge difference for many people with PD. In the “on” state medications are working and movement is better. In the “off” state, medications are not working and movement is worse: stiffness of muscles, slowness of gait, for example. In the case of advanced PD fluctuation of symptoms throughout the day is common, whether or not medications have been taken. If you catch someone in an off fluctuation, they will look much worse than in an “on” state.  I’m sure you know that walking is very different from gymnastics or dancing, and it would have been better to show efforts at any activities before and after use of the glove for a one-to-one comparison: here he is walking before the glove, here he is walking in the same location after the glove. There are also are numerous reports of preserved motor function in one task or another despite severe PD gait impairment. In other words, some abilities may be normal, even in a person with advanced disease.  In 2010 for example, there was a widely distributed report of a man with severe gait impairment who appeared normal while riding a bicycle.  As for the before and after of Mr. Bhutani walking through a doorway versus walking on a straightaway, that is also an uneven comparison.  Doorways can be notoriously difficult for PD patients and a prime location for freezing of gait, even when gait may look relatively normal otherwise.  Finally, PD is a clinical diagnosis and there can be mimicking conditions.  We don’t have any information about these patients on the basis of this news report to know how the diagnosis was made. Certainly, other points could be made, but I will stop here. Suffice it to say, the program was not science, and if anything, leaned a little toward sensationalized reporting.  Let’s not get swept up in that.  This is not to say there is no science reporting on this topic, or that the efforts of the Dr. Tass team are not legitimate. There will be a little more on that below.  I would also say that Stanford is known for cutting edge investigation. Still, a person’s or an institution’s standing alone is not enough. We should still apply all of our tools of critical analysis.

Where did this idea come from? It turns out vibration therapy is not new. French neurologist Jean-Martin Charcot (1825-1893) first reported that vibrations from a train or carriage ride might transiently make patients with PD more comfortable and sleep better.  Charcot lectured multiple times about vibration therapy, and even developed an automated vibratory chair (fauteuil trépidant) to simulate the rhythm of train travel. I can say anecdotally that I have many times heard from caregivers or patients that gait has been better in the exam room than they expected after a long drive to my office.  Maybe this is the same effect.  However, I would also note that data has not been consistent in that area of investigation, and attempts to evaluate vibratory chairs have not always been positive. For example Christopher Goetz’s team at Rush University found no benefit in 2012. There have been many other investigations into vibration therapy, whether focal to a specific part, or whole body therapy.

Some patients have pointed me towards a 2022 Stanford Alumni presentation by Dr. Tass  in which he explained the gloves. This was not a scientific, but more of an informational presentation.  Nonetheless, he stated that he was relying on medicine, math, physics and “self-organization systems theories” that allow one to understand how complex systems generate order. Per Dr. Tass “the standard self-organization issue problem is synchronization.” Here he refers to synchronization of brain neurons.

I want to interject here to try to simplify this and say that the basic cell of the brain is the neuron.  When one neuron “fires”, it sends a message to another neuron. That is the basis of thinking, moving, and feeling in the brain.  When two or more neurons fire together, that is synchrony.  Sometimes synchrony is good, and sometimes synchrony is bad, depending on several factors.  Many diseases are known to have some degree of abnormal synchrony.  For example, a seizure is a “hypersynchronous discharge” of multiple neurons. Instead of the back-and-forth communication of millions or billions of neurons, some begin to fire together, disrupting the normal background, and a seizure occurs. You can imagine, other dysfunction might also be possible.

I realize thinking about how brains work is not something most people do.  Here is an analogy that might help to understand the synchrony issue. There is a crowded auditorium where you’ve gone to hear someone speak.  Pretend the auditorium is the brain, and people inside (including you) are the neurons.  Before the start of the evening there is a din of talk, laughter, and other sounds (the normal background activity).  There is no obvious synchrony on the level of the floor, or if it is present, it is not overriding.  Things change when the speaker walks on stage. First a few, then many, then the whole place begin to clap.  That is synchrony.  It is fine in short bursts but imagine if it did not stop. That would be a noisy evening and you probably would not be able to hear the speaker (abnormal synchrony). You would want to break up, or de-synchronize (ultimately stopping) the clapping so you could hear the speaker.  That is idea. 

Dr. Tass notes that where synchronization in the brain is concerned, “too much of it massively impairs brain functioning” because different neurons have to process different types of information. “If everybody does the same thing that’s not good and can cause massive impairment.” Thus, he states “we were able to design stimulation techniques that allow us to move systems from this pathological synchronized state to a better state, to physiological, desynchronized states…desynchronizing stimulation enables us to make networks unlearn the abnormal connectivity and hence make them unlearn to produce abnormal synchrony. ..that’s the core of what we are doing.” 

So, why a glove?  The fingertips have a huge cortical representation.  This means the fingertips are very sensitive, with many, many nerve endings and a large area of the brain is devoted to deciphering information from them.  The glove system reportedly uses what is called “coordinated reset,” which “means that if you have a large neuron population you do not stimulate everybody at the same time. What you do is you stimulate at different sites, different times, weakly.  These are weak vibratory bursts. …in this way we disrupt synchrony and cause therapeutic effects.”  

How does that work? The Stanford group uses vibrotactile coordinated reset (vCR) fingertip stimulation in hopes that it will affect neurons in the sensory cortex and thalamus of the brain, both of which are connected to the basal ganglia. Vibratory stimulation may affect brainwave rhythms which can be detected by EEG as well.

There are multiple scientific papers published in peer-reviewed journals by Dr. Tass and his team going back over several years.  This brings us to the above-mentioned pilot studies. In 2021 the team reported on two clinical feasibility studies involving a total of eight patients in the journal Frontiers in Physiology.  The article is free and can be read by anyone.  If you want to delve into the science of this, to read a great deal more about the proposed mechanism, and observe the study design and results, take a look.  The results of these trials were also published in the journal Neural Regeneration Research in July 2022. Briefly, in group one during the acute phase of treatment “five out of six patients showed a clinically significant acute reduction of MDS-UPDRS III scores.” The MDS-UPDRS III is a measure of motor function in PD. After three months of treatment “all patients showed a clinically significant cumulative reduction of MDS-UPDRS III scores.” I would point out that five of the six had only a 4 – 6 point change in the MDS-UPDRS III scores. This is not a big difference on a scale ranging from 0 – 137. In group two “all three patients showed sustained cumulative therapeutic effect as demonstrated by a significant linear decrease of the off medication MDS-UPDRS III scores as well as off medication tremor subscores.” The changes were overall more impressive than group one. Additionally, two of the three patients were able to lower dopaminergic medication use. The data is hopeful, but again, larger studies are needed.  Even among this small group of patients the results varied a fair amount.

To summarize, the premise is that groups of neurons in the brain may begin to fire together in a way that is harmful and may cause symptoms of disease, and that is not a new concept.  That is part of what deep brain stimulation intervenes upon. However, DBS does not typically improve gait or sense of smell; whereas these reports indicate the glove does. The hope is that by vCR with a glove that causes tiny vibrations in the fingertips, information will be carried to the brain, abnormally synchronized neurons will become desynchronized, and symptoms will improve. These are extraordinary claims, and the videos are compelling, but raise so many questions. It is potentially groundbreaking, but we need more evidence. I will be watching and waiting for publication of the clinical trials.  I encourage you to do so also if this is something that interests you.  As time goes on perhaps a trail will be available near you. That is what moves science forward.

URLs checked on date of publication, 12/31/2022

Boosters and Breakthroughs

All people age 5 and over are now eligible for vaccination in Maine.  And, any Mainer age 18 and over who is 2 months out from a single dose of the Johnson & Johnson COVID vaccine or 6 months out from the second dose of either the Moderna or the Pfizer vaccine is now eligible for a booster dose.  Maine CDC is advising everyone to be vaccinated, unless they have one of the very rare legitimate medical contraindications.  It is a critical time to get as many people vaccinated as possible because there are still enough unvaccinated people around to keep the pandemic going, and to run the risk of new variants forming. As I will discuss, unvaccinated people place everyone at risk, even those who are vaccinated.

At the latest weekly address on November 17, 2021, Dr. Nirav Shah, Maine CDC Director, noted that we were seeing the highest day of new cases in a 24 hour period, with 1042 new cases.  He reported that 280 Mainers were in the hospital that day (another record), and that five of them were under the age of 18.  This total was up from 212 people just two weeks prior.  On November 17 critical care (or ICU) beds with COVID cases in Maine totaled 77, two of whom were children, and 36 of whom were on a ventilator.  The seven-day positivity rate (the percentage of positive tests from all taken) had also hit a record at 8.9% (up from 5.9% two weeks prior).  In the prior two weeks the percentage of tests done daily in the state had increased by nearly 20%.

Looking at the number of cases overall, as of the data available today at the Maine CDC website, in our state we have seen 115,857 confirmed cases of COVID-19, and 1,271 deaths since testing began in early 2020.  This amounts to a current case fatality rate of about 1.1%.  The highest case rates are currently seen in Androscoggin, Oxford, and Somerset counties, and all Maine counties are reporting significant numbers of cases.  Nonetheless, as discussed last week by Dr. Dora Mills, Chief Health Improvement Officer of MaineHealth, and Dr. James Jarvis of Northern Light Health on the Maine Public radio program Maine Calling, the current surge of cases is being driven by unvaccinated people from primarily rural areas that had been largely spared from prior surges.  These areas contain reservoirs of people who have no immunity from either prior infection or vaccination.

On November 17, Dr. Shah noted 71.6% of the entire population of Maine was “fully vaccinated,” meaning they had received a single dose of the Johnson and Johnson, or two doses of the Moderna or Pfizer vaccines, and 79.5% had received at least one dose of a vaccine. This also means that nearly 270,000 Mainers are not vaccinated.  Statewide, about 8,800 doses were being administered daily (including first, second, booster, and pediatric doses), an increase of 21% in the prior week.  As of that that day 14,209 kids in the age 5-11 group had gotten their first shot (about 14% of the kids in that group).

So, looking at those numbers, in a state of about 1.34 million people, we can calculate that 71.6% full vaccination would come to 959,440 people. Maine CDC states that there have been 12,681 breakthrough cases (COVID infections in fully, not partially vaccinated people, at least two weeks out from vaccine completion).  This comes to a breakthrough rate of about 1.3% among fully vaccinated people.  That is not bad, but we should keep in mind all of these numbers might miss people who have tested at home (or not tested at all), and not reported illness to the state.  So, it is almost certainly an underestimate.   

Last week on the Osterholm Update from CIDRAP (the Center for Infectious Disease Research and Policy), Director and epidemiologist Michael Osterholm, Ph.D., made several important points.  He noted that there is some loss of protection from the vaccines starting at 6-8 months after a full vaccination, and that there is some initial data that the third dose may be effective for at least 9-10 months.   He discussed the point that some people have thought the presence of increasing percentages of breakthrough infections was evidence that vaccines do no good.  I have heard the same thing from patients.  In this case, the opposite is actually true.

Breakthrough infections around the country are relatively rare (as we just calculated for Maine above), but the proportion of them will rise as more people are vaccinated, which is confusing to some.  This is because, while the vaccines are good tools, they are not perfect, and don’t work 100% of the time.  The percentage of breakthrough infections increases with the number of vaccines given because more and more people are vaccinated (and fewer and fewer people are unvaccinated).  It is a proportion problem.

Think about it this way (and bear in mind I am not really using statistics to calculate this, but am going to keep it sort of simple to show the point).  If there were an imaginary city with 1,000,000 people, and the overall risk of becoming infected were 5%, you would expect 50,000 people to become infected over some period of time.  If a vaccine came along that was very effective, but still allowed breakthrough cases in 2% of the population, then then only 20,000 people would be infected.  To understand the percentage of breakthrough cases going up, consider this. Without vaccines in our imaginary city 5%, or five out of every 100 people would become infected-and there would be 0% breakthrough cases because there would be no vaccination. With a vaccine 2%, or two out of every 100 people vaccinated would become infected. Then we could start to figure out if breakthrough case percentages going up are a good or a bad thing.  If you vaccinated half the population 500,000 people would get the vaccine and 500,000 wouldn’t.  You would still expect 5% of the unvaccinated people to become ill, which would come out to 25,000 cases. With the 500,000 vaccinated people there would be 2% breakthrough (10,000 cases). If you add the cases up, you have a total now of 35,000 cases, and 40% are breakthrough cases.  We just went from 0% breakthrough before the vaccine, to 40% after.  It’s going up, right?  If that was your take-home message, take a look at the total number of cases. They just dropped from 50,000 before a vaccine to 35,000 when half the population was vaccinated.  The percentage of breakthroughs went up, but the total number of cases went down. If you had vaccinated the entire population of 1,000,000, you would expect 2% breakthrough, or 20,000 cases.  Because everyone was vaccinated in this scenario the unvaccinated infections were 0%, and vaccinated breakthrough infections 100%. The total number of cases dropped from 50,000 without a vaccine to 20,000 with a vaccine.   That is what we want with a vaccine that has a 2% breakthrough rate.  

So where am I going with all of this?  If you have not been vaccinated yet, please do get the vaccine. If you are eligible for a booster, now is the time. Holidays and indoor gatherings are coming. We will will almost certainly see case numbers rise. The vaccine is an important tool to avoid illness. Keep mind of course, that no vaccine is 100% effective.  Minimize your risk of having a breakthrough infection in every way that you can.  Avoid dicey situations. If you must attend some indoor event or holiday gathering, make it one where everyone is vaccinated.  Your risk of catching COVID-19 when you and everyone around you is vaccinated is exceedingly low.  However, if you are inside with a sick or pre-symptomatic person who is exhaling air filled with virus, you are at risk, as I have discussed in several other posts.  Because of that I don’t think it is wrong to tell unvaccinated people that you cannot see them at gatherings.  It has been reported again and again that unvaccinated family members have spread disease when they have come into contact with family and friends.  Those people raise the risk of infection for everyone around them, even vaccinated people, especially those with underlying risk factors.  And, if you are eating with others it is still a good idea to spread out the seating during the meal.  Let’s do what we can to avoid spreading or catching COVID-19.  Finally, please also get the flu and pneumoccal vaccines.

The COVID-19 vaccine and you

COVID-19 cases continue to rise in Maine. Per data supplied by the Maine CDC, the current 7-day average number of new cases daily is 485. Hospitalizations across the state are going up also, with 76 patients in critical care and 34 on a ventilator as of today. The numbers we are seeing are as bad or worse than numbers we saw in January of this year.  And, we are lately seeing so many young people with COVID cases in people under 20 years of age now represent the biggest subset, at 20% of cumulative cases (since the beginning of the pandemic).  People in their 20s represent 18% of cases. Across the decades the percentages are approximately as follows:  the 30s: 15%, the 40s: 13%, the 50s: 14%, the 60s: 10%, the 70s: 5%, and the 80s: 3%.  So far, 981 people have died from, and 2,404 have been hospitalized with COVID in Maine. Many of those that survive will have long term problems from the infection.   A major means of spread is likely to be children in the coming months, as their numbers are rising.   According to the Portland Press Herald, in the last 30 days there have been 1390 COVID-19 cases in schools and 52 active outbreaks.

The main reason for this surge in cases is the Delta variant. It is much more contagious than the prior variants we have encountered.  That is why if you have not already, it is time to get vaccinated against COVID-19. 

Every day in the clinic I talk with people about this.  Every time I am on-call I see or hear about hospitalized patients with COVID who are unvaccinated.  It is terrifying to see.  As bad as the situation is, there are still people who refuse to get vaccinated.

Let’s discuss a few of the reasons I’ve heard.

“They made it political.”  Whether or not politicians have an opinion or want you to be vaccinated is not really relevant to your risk, and you will not be protected from the virus because a politician offends you.  Not getting vaccinated because of politicians is akin to cutting off your nose to spite your face.

“Vaccines force the virus to mutate.”  False.  Viruses mutate anyway. That is what they do, and they tend to do it a predictable rate.  Thus, the more people they infect, the more they get a chance to mutate.  Vaccines lower overall replication because they lower the number of people who will get infected.  It is that simple. 

“Vaccinated people are getting infected too, so what’s the point?” There has been a small percentage of breakthrough cases (about 0.25% of vaccinated Mainers). COVID is primarily spreading among unvaccinated people.

“I’m worried about women’s reproductive health.”  There is no legitimate connection between women’s health and the COVID-19 vaccines. That is a myth spread by people who ignore or don’t understand the data.

“I’m worried about long term side effects.”   The only long term side effect from COVID vaccination is immunity to the virus that causes COVID.  

“I’m worried it hasn’t been tested enough.” Before the Pfizer and Moderna vaccines were available over 60,000 people were injected in trials. Now, over 180,000,000 Americans have been fully vaccinated. There is far more data than we need.

“It’s going to change my DNA.”  That is not possible. Whoever told you this didn’t understand what they were talking about, and they certainly did not understand basic genetics. Messenger RNA does not go into the nucleus where DNA is in the cell.

“I’m worried about side effects when I get the vaccine.”  It is true that most people will feel soreness at the injection site for a day or two, and many people will have mild flu-like symptoms briefly.  That is the immune system working.  It is a good, not a bad thing.  A very small percentage of people will have more serious side effects when they get the vaccine, such as an allergic reaction.  Most people with allergies are will be fine. However, anaphylaxis, a severe reaction, has rarely been reported. If you have ever had a serious reaction to a vaccine, or are concerned, talk with your doctor about risk, and have your vaccine at a facility staffed by trained medical professionals, so that if something happens they will be there to help you.  Before you are vaccinated you should be screened and asked questions that will help vaccinators assess your risk. 

“It’s a medical freedom issue.”  You might see it that way, but since some people can spread the virus asymptomatically, and almost all will spread it pre-symptomatically (before they have symptoms of the infection), unvaccinated people place others at risk, and that is where expression of freedom becomes a problem.  This is why we require vaccinations with young children. This is why all of my med school classmates and I were required to be fully vaccinated, why people take vaccines prior to certain travel. The list of precedent goes on and on. Asking people to be vaccinated is nothing new. It is the right thing to do.

“I’d rather let my immune system fight it off.”   Nearly a 1000 Mainers and close to 700,000 Americans have shown by dying from COVID that this is not a great idea.  In fact, between 1-2% of Americans with COVID have died.   Of the millions infected who survived many will have long term symptoms of disease from lung damage, blood clots, and other issues.  The virus is many times more likely to harm you than the vaccine. 

“I already had COVID. I don’t need it.” The CDC recommends you still get the vaccine in order to have protection against other variants. In fact, studies have shown that people who have been infected and later vaccinated have some of the best immunity against the virus that causes COVID.

The vaccine is our way out of this. Please get vaccinated and encourage others to do so. And remember, mask in public, wear some kind of eye protection, physically distance, ventilate closed spaces. Be smart about this, and don’t let down your guard yet.

Janet Edmuson free webinar: How to Stop Worrying

October 26, 2021

How to Stop Worrying

by Janet Edmunson, M.Ed.

For family and professional caregivers

Tuesday, October 26, 2021

(The webinar also will be recorded for viewing later)

7:00 p.m. (Eastern)

6:00 p.m. (Central)

5:00 p.m. (Mountain)

4:00 p.m. (Pacific)

Webinar will be approximately 30-40 minutes in length.

Register online today by clicking the link below.  Or paste the link into your browser.

Registration Link: 

Register in advance for this webinar:

https://us02web.zoom.us/meeting/register/tZUvceqrqDspHtP_uH5lf4iI8Ao4cFAbvXyy

After registering, you will receive a confirmation email containing information about joining the meeting.

Webinar Description:  It is perfectly normal to worry as a caregiver.  We might worry over the little things that happen day-to-day such as “How are we going to get everything done tomorrow before the doctor appointment?”  Or we might be worrying over the big things…like “When will my loved-one need total care?” or “Will I have PTSD once my loved-one dies?”   In this webinar, we’ll explore why we worry, how it could impact our health and wellbeing, and what we can do to minimize it. 

About Janet:  Janet has over 30 years’ experience in the health promotion field.  She retired in May 2007 as Director of the Prevention & Wellness at Blue Cross Blue Shield of Massachusetts.  Since retirement, as President of JME Insights, she is a motivational speaker, consultant and trainer.  While working full-time, Janet took care of her husband, Charles, during the five years he fought a movement disorder with dementia which she wrote in her book, Finding Meaning with Charles.  Janet has a Master’s degree from Georgia State University. www.AffirmYourself.com.

If You Can’t Attend on the Webinar Date:  The webinar will be recorded.  If you register for the webinar, you will receive a notice with the link to view the recorded webinar within a week after the webinar. 

Once you register, you will receive an email from Janet Edmunson confirming your registration with information you need to join the webinar.

Space is limited and registrations are taken on a first come first serve basis.

For Additional Information: You can contact Janet at janet@janetedmunson.com with any questions you have about participating.

Wear a mask in public

Even if you are vaccinated, you should wear a mask if you are in a public place indoors, a crowded place outdoors, or around someone who is not in your close contacts.  This is because the Delta variant of COVID-19 is much more contagious than the variants we saw around the country last year.  Over 95% of confirmed cases in Maine (and around the country) are Delta variant (footnote 1), and ICUs around the state are filling up with them. It is also infecting people of all ages a lot more. Make no mistake, we are in another surge, and you are at risk. Consider how things have changed in a short time. On July 18 the seven day average of new daily COVID cases in Maine was about 15, there were only 4 people with COVID on a ventilator, and 11 in critical care. It seemed like we had really turned a corner.  But then the Delta variant started to show up in Maine.  Our current 7-day average is 348 confirmed cases daily. We have 36 people with COVID on ventilators today, and 67 in critical care according the Maine CDC. Most of these people are unvaccinated.

So, you might conclude that your vaccine will protect you, and that you don’t need to wear a mask.  I am sorry to say that you would be wrong.   We should talk about vaccines to understand why we still need masks.

No vaccine is perfect.  We knew from the beginning we would not have 100% success with these vaccines.  And, we knew from the beginning that if we lagged in getting everyone vaccinated we would just give the virus more of a chance to mutate into something worse.  Many people did, and it has.  While the vaccines are still excellent tools, and while I wholeheartedly advise vaccination, protection from the Delta variant with the available vaccines is less than it had been for other variants.  It has been estimated that with Delta the Moderna, Pfizer, and Johnson & Johnson vaccines well over 70% protection against infection at any level of severity, and well over 90% effective against severe infection or death.  It sounds good, but what this means is that even with vaccination you are still at risk. However, risk drops as more and more people are vaccinated. More than ever we need as many people as possible to be vaccinated for the math to work.  If everyone is vaccinated the likelihood of getting an infection drops dramatically, though other steps help too, as outlined below.

As for individual protection with the vaccine, I have heard Dr. Michael Osterholm of the Center for infectious Disease Research and Policy (CIDRAP) compare the vaccine to a fire suit.  A firefighter would of course wear a fire suit to protect her from injury.  It is a great tool, even a life saving device if used properly, but if the firefighter walks directly into the inferno she will die.  The vaccine is very much like that.  It does help.  It reduces greatly the risk that you will become infected, and if you do become infected it dramatically reduces the risk that you will have a severe or life-threatening illness.  But, it is not perfect.  If you are vaccinated, but still choose to expose yourself unnecessarily by going unmasked into public places, then you still place yourself at risk.  If you breathe in the air around someone who is asymptomatically or pre-symptomatically shedding virus-especially indoors, it is like walking into the inferno.   Don’t do it. What we are talking about here is breakthrough cases, infections in the fully vaccinated (people who are at least 14 days out from the final dose of a COVID vaccine).  The total number of vaccine breakthrough cases in Maine as of today is 2,258 (out of around 890,000 people fully vaccinated, or about 0.25% of vaccinated people).   Among those breakthrough cases 109 were hospitalized “associated with COVID” (footnote 2).

Since we started testing for COVID-19 2,371 people have been hospitalized with COVID.  There have been 993 COVID-19 associated hospitalizations since the first date Maine residents could be fully vaccinated.  Because the number of people getting vaccinated over time keeps increasing, we cannot simply calculate the number, but know that at least 90% of the people admitted to the hospital with COVID-19 even now are unvaccinated.

So let’s close by talking a little more about masks. 

-The best mask is the N95 respirator.  If everyone wore them properly (fit-tested, handled and stored correctly, etc.), the pandemic would be over. N95s should fit tightly against the skin, and do not work if placed over facial hair, or if they are wet for example.   N95s are the safest respiratory protection the average person can buy in a store, and protect you from both aerosol and droplet spread.  N95 is one of the respirators doctors and nurses may wear when we see patients with COVID in the ICU (along with eye protection, gloves, and a gown).  We are also fastidious about hand washing and sanitizing.  Note that an N95 with a vent is a poor substitute because it vents unfiltered air to others, and if you are carrying the virus that causes COVID-19, you are placing those around you at risk. At any rate, you are sending a message to others that you do not care about them, that this mask is only for your protection, and that is not the way to win friends or end a pandemic.

-The paper surgical mask if worn properly (colored side out, fit tightly against the skin over the nose and mouth, wire bent tightly over the bridge of the nose) is still very helpful in preventing the spread of droplets.  Studies have shown a reduction in risk of catching COVID-19 when people wear them (especially when everyone is wearing them).  They should be combined with limited exposure to potential risk.  In other words, get in and get out of the store, don’t linger. Have your conversations outside.

Cloth facial coverings tend to offer less protection than the paper surgical mask. If you wear one it should be several layers thick. A single layer of fabric is probably better than nothing, but only a little better.

Face shields alone offer very little protection, but if combined with a mask they can be very helpful, except for those tiny clear chin guards some people wear. Those do nothing.

Finally, if you are not vaccinated, HOLY COW, GET VACCINATED! COVID kills people, and unvaccinated people are keeping the pandemic going, and exposing those who care for them in the hospital to unnecessary life-threatening risk.

——————————

Please note the links to URLs are verified today, 9/12/21, but may change as websites update.

Footnote 1: We know the cases are Delta variant because the Maine CDC runs genetic tests on all positive test samples, whether or not the patients are hospitalized.  

Footnote 2: A COVID-19 associated hospitalization or death is defined by the Maine CDC as resulting from an illness that is clinically compatible with COVID-19 that is confirmed by an appropriate laboratory test. It is not necessary that COVID-19 be the primary cause of death or hospitalization.

What to expect in later PD

I am asked frequently by people who have had parkinsonism for several years what to expect going forward.  This question is usually brought on by some change in the condition of the person: maybe meds have not been lasting as long, or balance has gotten worse.  It could be any number of things, but the change has usually raised concern for what is coming next.  This question is really about prognosis: the likely course a disease will take.   Knowing about prognosis can help you plan your life, and alert those that care for you that this is not a static condition, there will be changes.  Given that Parkinson disease (PD) is progressive, it is a good idea to figure out what your resources are, and who will be with you as you navigate this illness.

There is another benefit to being armed with knowledge.  This will allow you to be unsurprised by the progression of disease, and to react appropriately if and when things do change.  I find that people who take this approach have better quality of life and better outcomes.  They know what to expect because they discuss PD issues with their doctor at appointments.  They are actively engaged in managing the problem. The opposite way is to the take the head in the sand approach, and simply learn about the disease as it happens to you.  In advanced disease this can lead to bad outcomes.  I informally categorize the sometimes numerous and urgent phone calls from these patients, who have waited until some symptom is out of control, as an unnecessary form of disaster management, a crisis line type call.  Nobody wants that, not you, not me. 

Things can seem like they are falling apart, and it is better to be in front of the situation if you can.  It will also help you to be more confident and secure about what is going on if you keep up with the disease, keep up with your doctor’s appointments (on time please!*), and follow medical advice.   That is the best control you can have.   And, it helps to have an ally, a person who is with you for this, a person who comes with you to appointments and keeps up with how things are going.   

Having said all that, keep in mind still that PD tends to be a very slow-moving problem, and the past tends to predict the future in terms of rate of progression.  For most people, after several years of PD the course unfortunately tends toward a less predictable response to medication, and to fluctuations in motor function.  Bearing in mind that no two people with PD are the same, there may be a variety of other signs or symptoms of disease as discussed below.  Some issues have more bearing on prognosis than others.  Trying to make sense of all of this and figure out what the future will hold in a moderate to advanced patient is thus difficult.  There have been several studies looking at these questions however, and I tried here to summarize some of that information in a way that I hope will be helpful.  This post is not meant to be exhaustive, but a brief survey of some relevant topics.  I am hopeful that you will use it to check out certain issues and hopefully feel a sense of familiarity with what is going on.  I am hopeful that it will help.  

Cognition

Many people with PD complain that cognitive function is not what it used to be, and this is for a variety of reasons, mostly to do with reduced levels of dopamine and other “neurotransmitters” such as acetylcholine and serotonin. The typical cognitive profile of PD is one in which thinking speed feels a little slower than it used to, short term memory is not quite as sharp, and multitasking is not as easy.  If a gradual decline that still does not interfere with functional independence is noted, and the person meets certain neuropsychological criteria, the person is said to have mild cognitive impairment in PD (PD-MCI). (1)  The prevalence of PD-MCI is about 27%, but increases with age, disease duration, and motor severity.   PD-MCI may lead to dementia in Parkinson’s disease (PDD), and studies vary in reporting of incidence, ranging from 30 to 40% in many papers on this topic (2) to 80% in at least one population study. (3)

One study in Norway followed a sample of 224 PD patients with an average age of 73, and duration of disease 10 years when the study started.  At baseline 22% of the patients had dementia.  However, after 8 years, when the average age in the group had reached 81, and disease duration had reached 18 years, prevalence of dementia was 78%. (4)

In the Sydney Multicenter Study 149 people with PD across Australia were followed.  At 15 years 48% of the sample group developed PDD, 36% MCI, and 15% had no cognitive impairment.  Cognitive decline was more common in older individuals. (5)

Predictors of PDD in patients with PD-MCI include semantic disfluency (a problem with fluency of language), or a type of visuospatial dysfunction (complicated, but this is why cognitive tests often include a drawing portion).

Risk factors for PDD generally include older age overall, older age of disease at onset, overall duration of disease, severity of disease, absence of tremor, male gender, lower baseline education, the presence of hallucinations, depression, or PD-MCI.

What can you do about it? Sleep well.  Don’t drink excessive amounts of alcohol.  Stay away from high blood pressure and other chronic illnesses-or control them with precision.  Stay physically, emotionally, and mentally healthy and active.  Keep up with interests, have hobbies, be engaged.  Finally, a medication may be prescribed for this.

Hallucinations

Hallucinations are known to be common in PD and are often benign.  Some patients will have what are known as passage hallucinations, fleeting images in the periphery which are typically thought of more as misinterpretations by the brain than something worrisome.  We can all have them, but they seem to be more common in older people with PD or Lewy body dementia (LBD).  However, formed visual hallucinations, in which a person clearly sees, and can describe something that is not there, are more concerning.  Sometimes these hallucinations are benign, sometimes not.  In the Sidney Multicenter Study formed visual hallucinations at some time were seen in half of patients by 15 years of disease.  It was recognized that some of the medications that improve the motor symptoms of PD might also exacerbate hallucinations.  When medication adjustments were made hallucinations dropped to 21%.  Only 6% required an atypical antipsychotic medication to control the hallucinations.  The average time to the onset of hallucinations was close to 11 years since time of diagnosis.  If you have them, tell your neurologist.

Unified Parkinson’s Disease Rating Scale

Doctors tend to use tools such as the Unified Parkinson’s Disease Rating Scale (UPDRS) to measure the advance of PD or the severity of signs and symptoms.  When looking at just the motor subscore of the UPDRS, a change of 3.5 % per year is typical.

Predictors of impairment of motor function or disability include age of the patient overall, age at onset of PD, overall disease duration, excessive daytime sleepiness at baseline, or cognitive impairment at baseline. (6, 7)   

Advance of motor dysfunction usually includes dyskinesia: the presence of excess movement that is not tremor.  Medication adjustments in the form of smaller, more frequent doses or the addition of amantadine may make a positive difference.   Other patients may experience motor fluctuations in the form of medication failure or unpredictable off time.  When these events occur sometimes an extra half tab of immediate release carbidopa/levodopa is helpful, but may take 30 minutes or longer to kick in.  Rescue drugs act much more quickly, in typically just a few minutes.  These include inhaled levodopa and sublingual apomorphine hydrochloride (sounds like a narcotic, but it is not).  

Sometimes patients go to the ER for motor fluctuations, but this is not usually a helpful move.  ER doctors don’t tend to have a great deal of expertise in dealing with advanced movement disorders, and while a neurologist might be on-call covering the ER, that person is not usually the neurologist who is familiar with you, and usually would not consider this an emergency.  

A medically appropriate strategy would be to keep regular appointments with a neurologist, make drug changes appropriate to the advance of your disease, and plan for change in the future.    If you can’t manage symptoms between appointments, call your neurologist’s office.

Age

Older age itself as a risk factor has been evaluated.  One meta-analysis of 45 studies, including 27,458 patients with PD, showed typically the duration from onset of disease to death ranged from 7 to 14 years, though a great variety of reasons for death and disability were listed, and the range of lifespan was considerable.  Older age at onset of disease and the presence of dementia were the most consistently found predictors of death. (8)   Bear in mind also that people in their 70s and 80s tend to die from many different causes, such as heart or lung disease. See the section on survival below.

Older age at onset of PD is not all bad either.  Studies have shown that disease onset in older age is associated with better quality of life, lower rates of depression, and a better sense of wellbeing compared with those who had the average age of onset of PD. 

Psychosis

Psychosis, which may include hallucinations and delusions, occurs in upwards of 30% of PD patients.  Onset tends to be beyond 10 years since the time of diagnosis, and the impact on quality of life is negative for both the patient and caregiver.  Psychosis increases the odds of emergency room visits, hospitalizations, and placement in nursing homes.  

In a study of 230 people with PD followed over 12 years it was found that psychosis was most likely with older age of onset, higher dose of dopaminergic drugs, or significant REM sleep behavior disorder. Lowering the dose of dopaminergic medications can sometimes reduce psychosis. (9)

Nursing Home Placement

The most common cause of nursing home placement in PD is hallucination.  Other causes include older age, advanced PD with more severe motor symptoms resulting in impairment of activities of daily living, falls, cognitive impairment, and living alone. (10) 

Disability

Risk factors for increased disability with PD include psychosis, depressive disorder, severity of depression, apathy, sleepiness, motor impairment, and percentage of time with dyskinesia. (11)

Survival

Multiple studies have shown that some factors are associated with a shorter survival.  Risk factors for shorter survival include non-tremor dominant type of PD, PDD, or early autonomic dysfunction, such as early severe orthostatic hypotension.  (12-14)

A study of 230 community patients in Norway followed from 1993-2005 showed the average survival time from motor onset of disease was close to 16 years, though the range was from 2 to 36 years. (15)  Bear in mind this placed the average patient at mid to high 70s, typical lifespan.

Overall, normal cognitive function at onset of parkinsonism is associated with a normal life span.  In a Swedish study in which patients had an average age of 71 years at baseline entry to the study, patients without MCI survived another 12 years, and those with MCI another 8 years.  Causes of death overall included pneumonia (19.5%), dementia (15.6%), unknown (11.7%), heart attack (9.1%), all types of cancer (7.8%), heart failure (5.2%), and other causes (31.2%). (16) 

Generally speaking, better prognosis is also associated with good diet, regular exercise, regular engagement in life and interests, and healthy relationships with others.  In moderate to advanced disease it is important to establish a caregiver, whether that person is a loved one or a professional.  There may be a team involved, such as that caregiver, a therapist, a home health nurse, spiritual support, a neurologist, and a palliative care specialist.  I would recommend palliative care for any adult with a chronic illness in order to specify goals of care and to improve quality of life for both the patient and the family.

I hope these facts have been useful.  They are offered in the spirit of understanding this illness and trying to plan for the future.  

Footnote*A strange phenomenon I have noticed from time to time is that the more complicated the problem, the less prepared for the appointment the patient tends to be, and the more likely that they will show up late for the appointment.  Often this happens at a scheduled follow up, and the patient wants to discuss some new urgent issue.  This places doctors and nurses at a huge disadvantage that is in turn a disadvantage for the patient. It is counterproductive for you. Advice: bring relevant records such as images (not just reports) of your brain that were taken while you were at some other emergency room last week.  Don’t assume “it’s all in the computer.”  And, please do not use the sentence “You can get my records.”  All of that should have been present before you were to be seen by a health care provider.  It is a great policy to call ahead and tell the nurse if you want to discuss some urgent issue at your upcoming appointment, and to make sure records are in order if you don’t have them.  Don’t blindside your doctor, let them be prepared.   I feel like a quote is order here: “Help me, help you.” Jerry McGuire.

REFERENCES

1.            Cammisuli, et al.  Front Aging Neurosci.  2019;11:303.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6856711/#B69

2.            Emre. Lancet Neurol 2003; 2: 229–37

3.            Litvan et al. Movement Disorders  2011 :26;1814-1824

4.            Aarsland et al. Arch Neurol. 2003;60:387-392

5.            Emre. Lancet Neurol 2003; 2: 229–37

6.            Jankovic, et al.  Arch Neurol. 2001;58(10):1611-5

7.            Alves, et al.  Neurology. 2005;65(9):1436-41

8.            Knipe, et al.  Mov Disord. 2011 Sep;26(11):2011-8

9.            Rabey, et al.  Parkinsonism Relat Disord. 2009, Suppl 4:S105-10. 

10.          Aarsland, et al.  J Am Geriatr Soc. 2000 Aug;48(8):938-42

11.          Weintraub, et al.   J Am Geriatr Soc. 2004 May;52(5):784-8

12.          Macleod, et al.   Mov Disord 2014;29:1615–1622

13.          Levy, et al.  Neurology 2002;59:1708–1713

14.          De Pablo-Fernandez, et al.  JAMA Neurol 2017;74:970–976

15.          Forsaa, et al.  Neurology. 2010;75(14):1270-6

18.          Bäckström, et al.  Neurology Oct 2018,  00:e1-e12. doi:10.1212/WNL.0000000000006576