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

Parkinson’s Disease-An Insider’s Report

By Ken Gunston  

I believe most of what I have written in this paper is consistent with published Parkinson’s Disease self-help literature. Using that literature, I tried to write about how I experience Parkinson’s. Two sections in this document are not consistent with the literature. Instead, they are consistent with what I seem to experience in my body and what I think is going on. I tried to make these differences with the literature clear in the text of these sections.

These two sections should not be taken as truths, but instead as something I would like reviewed and discussed. These two sections are marked with asterisks in the Table of Contents page (over). If you, as either a professional or a Parkinson’s patient or caregiver, have the time to entertain such a discussion, please let me know what you think about what I have written in these sections.

Editor’s note: the author can be reached at kenneth.gunston@gmail.com       

Who Am I ?

I was diagnosed with Parkinson’s disease (PD) about ten years ago at the age of sixty-nine. I am writing this with the thought that I may be near the time when, due to this disease, I can no longer write or put my thoughts together in understandable sentences. My goal is to write down some of the feelings I have and mechanics I use to enjoy my days, possibly even extending them. I have only my own body to experiment with. If you have PD, I hope what I write will trigger your thoughts and that you will be so kind as to share them with me. I intend to write things out in perhaps too much detail, things you already know. If you can, please humor me on that. Engineers are trained to worry about every bolt, lest the bridge collapse.

My medical record would say I am a 79-year-old male with PD, about 150 pounds (was 170), badly stooped (was 6 ft.) with moderate dyskinesia (random movements), forgetful and sometimes confused. I have no other ailments. I am a husband, a father of four, a grandfather, ex-electronic engineer, ex-home handyman and now, a reporter from within this disease.

If, before birth, I was offered a life of 70 years, ending in a quick death, or alternatively, an extra 10 or 15 years to be spent dying of PD and whatever else I could do with those years, I would choose the latter. I think you would too. That thought is better than feeling sorry for myself that I caught PD. Approaching my 80th birthday, I am living that choice.

I am lucky to have a life partner, my wife Suzanne, who plans around my limits and somehow carries on. This is where the pain is, watching her burden. My sweetheart is my angel. She helps me every day, an hour-by-hour continuous gift from her heart. You can’t get this close to someone with PD without feeling grief, frustration, and  anger, at times.

Sometimes I feel low, but mostly I enjoy life and I hope to have some time before Suzanne and I need to go through whatever end of life bumps await us. I have seen the final days of others that have completely lost their reason and I do not want that for myself, nor for others to watch. I hope that my family will let me go without feeling guilty. I am not looking for and do not think in terms of a poison pill or a gun, but perhaps I will no longer want to take care of my body’s nutritional needs. Of course, no one knows what they will do until their time comes. I have made sure there is a DNR on the fridge door, so maybe God will make these, “how will I die”, decisions for me. My job for now is the same as everyone else’s, to enjoy life so those closest to me can see that I am doing that most of the time.

The Parkinson Progression

As everyone knows, PD progresses downhill, but my sense is that it does it in steps. I am familiar with this staircase because I went up it as a child, gaining skills and cognitive capabilities that I am now losing. When I step down from the step I am on, I know I will not visit this step again. So I try to do everything my body and mind will let me do on each step. Steps, as I am describing them here, are not something defined in the PD literature, but rather something I define for myself. I enjoy when I wake in the morning and see that things are pretty much the same as yesterday. I am on the same step.

The concept of PD declining in steps is also important to the way I manage my efforts. I do not step down a step willingly. I fight it. Stepping down is what happens when things that used to work, stop working. It is not unusual to have several things become difficult at once. When that happens, I need to determine how I can maintain myself on the new step. To me going from one step to the next is a process with a beginning, a middle and an end. At the end, I have adjusted to the new step and have maintained whatever functionality that I can, perhaps at the expense of effort required or speed.

Also, a step is not necessarily something going wrong and something going wrong is not necessarily a step. For example, last summer I broke my right hip and it took seven months to fully recover. After the walker, the rollator, the cane, finally I was walking free again! Suzanne and I went on two-mile hikes on uneven ground with confident balance. All that happened on the same step, just an accident and recovery.

Then, only four months later, one year after my fall, my PD advanced a big step. This time, PD introduced me to “freezing” (feels like my feet are glued to the floor) and a big loss of memory capability. At first these things seemed insurmountable. But then I determined what was possible and I found some success. That is what PD feels like to me. There is always a step down the life-staircase but there is, so far, always a next step to catch me, to pause at. I now use a cane and restrict my walking to fairly even ground, and I use a rollator for the first few minutes or so when I awaken. It was a big step down, but it was not a cliff.

My Understanding of PD

In PD as I understand it, the neurons in my brain where memories are stored and thinking takes place, are not dying as happens with Alzheimer’s. (Though there is no rule that says I cannot have both PD and Alzheimer’s disease.  I am thinking, hoping, just PD. PD is enough for now.) What is dying in the brains of people with PD are a particular kind of neuron (a cell) that is located in a part of the brain called the substantia nigra. The job of these cells is to make a substance called dopamine, which is a neurotransmitter. Neurotransmitters are chemicals used in the electro-chemical action that takes place in the synapses between neurons. Without enough dopamine, the neurons communicate more slowly which is called bradyphrenia[1] (slow thinking). Bradyphrenia is the cognitive equivalent of slow motor control, which is called bradykinesia (slowness of movement). 

Some of the cells in our body can be replaced. That is what happens when our skin heals after an injury. The dopamine producing cells in the substantia nigra are not replaced when they die. We are all born with about 400,000[2] of these dopamine producing cells. We lose about 2,000 each year as part of the normal ageing process, but with PD we lose about 5,000 to 20,000 each year. Movement disorders become evident when we are down to about 160,000 dopamine producing cells. I am apparently below that number. The carbidopa/levodopa I take four times a day replaces some of the dopamine I need. It helps, but not completely.

They call PD a movement disease with perhaps some cognitive loss in its later stages. I suspect that at least for me, it is instead a cognitive disease that was first diagnosed, by its impact on my ability to move. Everything else that is affected; slight changes in decision making ability, memory, even feelings, are not hidden, but are so subtle that the observer, the family, the neurologist, even the person affected does not recognize these as PD. These symptoms may have started years before the disease evidenced itself as a movement disorder.

No one wants to admit cognitive loss and I am no exception. But this admission to myself is crucial because it allows me to be more specific as to what my cognitive losses are. I use the simple idea that many of my motor and cognitive symptoms, can be explained as slow communication between neurons (or inappropriate synapses firing), because there is not enough natural dopamine in my brain. Then using that idea, I think about what can be done to minimize some of these deficits. In the rest of this paper, I will try to describe how I have addressed these challenges.

Some people reading this paper with its list of symptoms, and what I do about them, may find it depressing, but that is not what I feel. To me, finding solutions is uplifting and that is what I want to share with you. For the record, I take 6 ½ (25/100 Sinemet) tablets a day, spread over four intervals. I seem to be stable for beyond these intervals. My neurologist has tried to supplement this regimen with other PD medicines, but my body did not handle them well.

I split the list of symptoms into two parts, Cognitive Issues and Movement Issues. There are a few over-arching thoughts that apply to all things I do to address both Cognitive and Movement issues.

  1. When I say I do things a certain way, I don’t mean I am consistent, just that I try to be.
  2. I try to focus on one thing at a time. For example, if my goal is to walk across the room, I stop thinking about what I just did (get out of the chair), review why I want to walk, then focus on the details of my steps.
  3. I try to never, never give up. And then I try again and then again.
  4. I think, analyze and experiment. The experts are great and so are others who have PD but only you, only I, have this body. It is a source of valuable information that I cannot get anywhere else.
  5. My purpose in doing the things I am writing about is to keep myself functional so that I can be with, enjoy and possibly help the people I love. PD robs me of so much, as it does to people who help me, especially Suzanne. There is always a tradeoff between how much I work on my PD issues so I can live and how much I live, how much I take from others and how much I give.

Cognitive Issues and Bradyphrenia

Pre-diagnosis Issues

Some folks believe there is some relationship between PD and certain chemicals. For the record, in the summer of my 20th year, I worked for the mosquito control commission in Suffolk county New York. Sometimes I had a five-gallon tank strapped onto my back with a pump handle and a small hose. With a team of others, we walked through wooded areas spraying something that killed mosquitos, perhaps DDT. During that time, I suffered multiple one to two-inch diameter “boils” on the side and back of my head and neck, one, two or three at a time, new ones replacing the old. Each had to be lanced and drained. however, I am unaware of any lasting problem from this exposure.

I had a prostatectomy in my 57th year, a major operation. The operation took longer than predicted and I spent longer in the recovery room than expected, due to problems related to the anesthesia. I am not aware of any lasting effects from this but Suzanne is concerned that there may have been some cognitive loss, particularly in my sense of direction, something I was once good at. In any case there was definitely a loss in my sense of direction and my ability to retrace (remember) my steps when I was in my late 60s.

Before I had any idea, I had a named disease I found myself forgetting things that I did not realize I was forgetting, like promises and agreements, both at work and at home. It was embarrassing. I had a good reputation professionally but I was not renewing it. Because I enjoyed my work, I had expected that I would continue to work beyond age 65, but when my boss offered me a small bonus to retire at 64 ½, I realized no good would come from not accepting that offer. I was, at this point, not enjoying my work.

Staying in the Here and Now

As one person with PD told me, “I would give up a lot of movement dexterity for less cognitive loss”. That is not a choice we are given. It may not look like it from the outside but there is much that I can do to deal with cognitive loss and it is my responsibility to figure out what I can do and then do it. I owe that to myself, to Suzanne, and to my family. This is where I have to be.

It was about five years ago when Suzanne started telling me she has to make an assessment each time we discuss something as to whether she is talking to “Old Ken” or “New Ken” meaning rational or confused Ken. I need to make the same assessment on myself more often. Specifically, I need to think before I say something. Being slow is OK. Bradyphrenia (slow thinking) is not no thinking. The first comes with PD but the second does not have to. Being “stupid” is scary and Suzanne’s primary window on my sanity comes from listening to me. I need to do it as well as I can. It is OK for me to ask her to slow down, saying, for example, “You are ahead of me. What are you referring to?” to buy myself more time to think. Pauses in our conversation are good. If I ask her something, she has already told me, it helps to let her know I am now aware that I was asking her to repeat what she said.

I try to pay attention to what is going on. Avoid daydreaming. Keep track of plans, doctor appointments and such for both Suzanne and me. Suzanne does not need me to help on that but I need it to be useful in a conversation about plans. We keep a white board which I update regularly, so I can check it when needed. We make Suzanne’s datebook the master document so I just update the whiteboard from her datebook, two to four weeks ahead. Every once in a while, I notice some conflict or consequence (we need to do this before we do that) that helps Suzanne. Almost always, she is the one to notice, but I think she appreciates that I care about these little things so she is not alone, thinking for both of us.   

When we travel to a store or doctor or to just someplace nice, I make sure I remember our route or I take out the map and follow it.

I make it a point to always know what day of the week and date of the month this day is, every day. I am annoyed with myself if I catch myself unsure of the date and day.

Getting lost                                 

About three years after I was diagnosed as having PD, I experienced these confusing situations:

  • While driving (or Suzanne driving) arguing with Suzanne as to which exit to take from the highway to get to our destination.  Then realizing I was confused and that she was correct. That happened several times even though in the past I had a fairly good map in my head. Suzanne used to say I had a good sense of direction. Not anymore.
  • Going into a building and leaving by a different door without realizing I had done it. Then, not knowing why everything looked different and not knowing what happened to my car.
  • Route 1 between Bath and Brunswick is a limited access four-lane which I was driving when suddenly, I realized I had no idea where I was, even though I was 7 miles from my home on a routine errand and had driven this road once or twice a week for years. To me, this day, Route 1 looked like any other-four lane. I could have been in Ohio for all I knew. There was an off-ramp just ahead, so I took it. That off-ramp presented me with a familiar scene, so I could re-orient myself.

These were not simple mistakes, quickly recognized and corrected. They were confusing and, disconcerting and each took a minute or more to recognize before I could correct myself. Each occurred within a few months of each other and about three years after receiving the PD diagnosis.

But they did not keep happening. I thought this was something I could beat. I made progress by consciously keeping track of my movements. I am not lost if I know how I got here and why. I try to keep fewer things on my mind and focus on the “why” and “how” questions while I am moving. I practice this around the house so I will do it when I am out of the house. This does not come naturally, but I feel like I am having real success. With PD, confusion begets confusion and this kind of confusion, the kind that could once be considered acceptable, is no longer acceptable.  

Remembering to Remember

There is a common theme to most aspects of living with PD. What used to be handled automatically, subconsciously before I had PD, no longer works unless I do something about it. I am referring to things like “walking” and “standing from a chair”. The list of these things is long. In general, the solution for each involves moving what used to happen subconsciously to my conscious mind, including each and every detail. Doing that is difficult. It requires identifying each step of the action, learning the order that each of those steps need be done, and then doing them every time the action is needed.

Coping with loss of memory is like that except that, there is an emotional factor. Identifying the steps needed to “stand from a chair” does not sound like a cognitive problem. Everyone knows PD is a movement disease, right? I go to a neurologist who specializes in movement diseases and a physical therapist who shows me the steps I need to “stand from a chair”. No one is threatening my ego. No one is saying anything that could be interpreted as calling me incompetent. But there is no way cognitive loss can be dressed up to look like a movement disorder. Listening is something I learned to do at an early age. Not doing it well in old age is a cognitive limitation, but the good news is that I can do something that helps.

My thought on memory is that cognitive memory loss is exaggerated by not handling, the process of getting the thought into memory. When I don’t remember well, it is often a “failure to listen” or “failure to notice”. Of the two, “failure to notice” is more complicated because it requires making a decision about what is worth noticing. For that reason, I will focus on what I try to do to listen. These steps are perhaps, obvious, but not completing each, will cause me to fail to remember.

The process of “listening” includes “understanding” and “storing”. Storing has two parts, “storing what was said” and “storing the handles”.

 Suppose Suzanne tells me “I am going to the market”. Hearing that sentence involves my brain decoding the sounds into words and then recognizing the meaning of the sentence made of those words. My ability to understand is limited by my bradyphrenia. If I do not understand I will ask her to repeat the sentence. Suzanne often tries to help me to understand by using simple sentences, each containing a single fact, as in this example. She will not give me more information until she can see I have digested the first fact.  Then she might say “I need to get the birthday cake”.

Suzanne using single fact sentences is a big help in “understanding”, but it is my responsibility to be sure I have completed the step of “understanding” what was said.

The next step in “listening” is “storing” which is a two-part step. Storing something involves both sticking the thing I want to remember in my brain and “providing handles” to the thought so I can extract the information when I need it. Both the thing to be remembered (Suzanne going to the store to get the cake) and the handles must be stored in my memory. Storing takes place when I think about it and thinking about it takes place as I create the handles. Before I had PD, this second part (creating the handles) occurred almost automatically. Now I need to do it manually with my executive function, piece by piece. For example, I need to record that I now know where Suzanne will be for the next half hour, so I will not be looking for her. And I will need to connect the birthday cake to the event it is planned for and who will be a year older. I may also connect the thought that she is having to make a separate trip for this cake because the cake was not ready when she was at the market earlier. I might also notice where we were standing or what she was wearing when she said this; any facts I can connect to make the memory richer. You may think I am just adding to what needs to be remembered but that is not how it works for me. All these things form a single concept, complete with a touch of emotion (pleasure – I like her in what she is wearing and I like how the birthday person will feel). All those things form into a single image that is easier to remember. These things are the handles I will use to extract the information I just put into my memory. This is what I mean by remembering to remember, remembering to do this extra work.

Remembering takes time and often requires a patient talker to take the time to answer my questions and requests for repeating the sentence. However, that is much better than not bothering to understand and then seeing what goes wrong. It does not always require extra work by the speaker. Suzanne may say the sentence and then be putting her coat on while my mind is churning away, digesting the information in the sentence she said. It always requires me to go through each of the steps, methodically.

This is not as hard as it sounds. A person does not need to have PD to have experienced only partially hearing a key word of a sentence someone has spoken. The sound stays in your mind for a second while you try to match a word that would fit. When you get it, the sentence makes sense and the thought expressed by the sentence matches the expression on the speaker’s face. That is the step of “understanding”. It is only the process of “creating the handles” consciously, that is new to my listening job.

Avoiding Danger                        

With PD and bad memory, there is a risk of just doing something stupid resulting in catastrophe. I keep a list of these things. I do not depend on my judgement for the things listed below. I am especially careful to watch for them when I have just taken a step down my PD staircase, when I am most susceptible to making a mistake. 

  1. I never drive because I worry about dozing off while driving and I worry about not handling complex traffic situations well.
  2. Some winter days are deathly cold in Maine. I always make sure that at least one door to the house is unlocked when I step outside in winter. I encourage Suzanne to do the same. Not just unlatched. Unlocked, so that even if injured, even if the wind closed the door, we could get inside.
  3. During the winter months, not just on freezing days, I make it a habit to watch the dog while she is outside until I get her in. I do not do anything else while watching the dog, even on nice winter days, even if Suzanne is home, to keep my habit unbroken. Our dog is deaf and not likely to bark. In warmer months I can use electronic devices to remind me to bring the dog in, but that method is not sure proof for winter months.
  4. I do not put anything flammable on the glass top kitchen stove. I once put a potholder on the stove while the burner was on and did not notice it start to burn. Thankfully, Suzanne did. I have not let that happen since. 

Vision Issues, Hallucinations, and the Riddoch Twitch*

In my opinion, the eye-brain connection is surpassed in complexity only by the functions and internal connections between the parts of the brain itself. The eye-brain connection is a place where this disease can have real fun at my expense. It is also where my dysfunction and reality present themselves in full dress. Not all vision symptoms are subtle and some are just old age, helped along by PD. However, they are all mine to have and to hold so I will describe them here.

My eyes no longer present one image most of the time. I see two images, my eyes apparently not tracking together. I keep one eye closed while I am typing or reading.

I have blank places in my vision that seem to come and go. For example, I may have two pills in the palm of my hand but I only see one, the other comes and goes and comes back again. Staring at it, the image seems to settle down and I see both pills consistently.

I can no longer look down a piece of lumber from one end to see if it runs true or is slightly bent or twisted.

I am becoming color blind. I see blue and green as almost the same color and sometimes two things appear to be two distinctly different colors when they are not.

It takes me longer looking at something to discern what it is, at least in its details. That happens with many folks as they get older, with or without PD. I noticed with my parent’s generation and now with mine, a common type of automobile accident. At an intersection with a yield or stop sign, the driver stops, waiting to cross or to make a left turn. Most of the traffic is from the right. Finally, there is a break in that traffic. One quick check to the left, no cars, accelerate and bam, T-boned. The driver swears that they looked before proceeding and did not see the car. I suspect that they did not look long enough, not so much because they were careless or were hoping there would not be a car there, but because they had not yet accustomed themselves to old age and “slow vision”. They saw the scene but not the car in it. When young, it only takes a second to catch a detailed vision, but it takes longer when older and longer still for a person with PD. In low light, with PD, it may take several seconds.

One time, while looking at the wood floor, I saw a vertical wood door where there was none. This happened to me while using my rollator, walking to the bathroom, half asleep, in the middle of the night, in low light. I knew my brain had not made the correct interpretation of the image. When this happens, if I focus, in a short time I will see the scene correctly, a bit like a painting that appears to be one thing, but if you look at it longer you see something else.

I think that there is another vision issue that may be misdiagnosed as hallucinations, an early symptom of Parkinson’s psychosis. Notice this description[3] which was taken from a more complete description of hallucinations under the title “Symptoms of Parkinson’s Psychosis”.

“Typically, psychotic symptoms are subtle when they first start. In the evenings you may begin to see shadows fleeting by or hovering at the edge of your vision or a feeling that someone is standing behind you. Gradually objects at the corner of your vision start to look like something else, and the illusion goes away when you look straight towards it. Afterwards, the images at the edge of your vision may start to become vivid, distinct and stereotypical every time. For the most part in the beginning, you can distinguish these images from reality. These subtle symptoms can persist for months, or even a few years, but it is often unclear when these early symptoms get worse. Usually, an infection or anesthesia from a surgical procedure can worsen it.”

That quoted paragraph includes non-vision phenomenon, but it is the description of vision issues that concerns me.

At least from my experience with PD, a common attribute of the disease is that neurons or the synapses between them, fire inappropriately, spontaneously from time to time, perhaps as part of my dyskinesia, or from my long use of carbidopa/levodopa. For example, if I hold my fingers over this keyboard while I am thinking, there is a chance that a finger will type a key I don’t want typed. This occurs when a muscle in my hand twitches, I assume due to a spontaneous neuron synapse firing.  Or I may feel a pin prick (or several) on my foot or hand but on examination there are no pins. Again, I chalk this up to an inappropriate synapse firing.

If an inappropriate synapse firing were to occur in the neurons in my ocular nerve, that may be another kind of vision problem. The human eye has three primal functions that I am aware of, to recognize night from day (so we sleep), to image light (so we can see) and to detect motion (so we can avoid danger). The Riddoch phenomenon[4] describes a person who can see motion but is otherwise blind, named after George Riddoch, a neurologist who in 1917 wrote a paper describing brain injuries he had seen in soldiers. This phenomenon is rare but has received notice by researchers in recent years. One such person was able to catch a ball thrown at her but could not see the ball once caught, could see a hand coming to her but could not distinguish thumbs up from thumbs down. Although I can’t document it, I believe that I have read that about 10% of the neurons leave the ocular nerve and enter the brain separately from the other 90% of them. These may be the ones that detect motion in the vision field.

PD people do not experience the Riddoch phenomenon because like most everyone else, they have both image and motion sight. In fact, like everyone else, we do not  recognize that these are two different capabilities of our eyes. Our brains integrate these two inputs to form a single perception. You may notice that it is much easier to spot a pill or coin just dropped, if you see it while it is still rolling instead of after it stops.

I suspect others with PD like me, sometimes have spurious neurons firing in those neurons that detect observable motion. For lack of a name, I will call it a “Riddoch twitch”.

All my life, as with anyone, if I thought I saw something move off to one side, I would look directly at it to see what it was, the cat jumping onto a chair for instance. I was almost always rewarded with a recognition of what happened to make me look. However, with PD, if I think something moved off to the side and I look, I may see nothing there. Given the brain’s propensity to make images where there are none (my door example), after having this happen a few times, and if the light is low, there is a visualization, no shape (maybe it is round) and no color (maybe it is gray), but something. I can imagine it being described as a fleeting shadow as in the quoted paragraph above. When this occurs, but nothing is there, I am calling this a Riddoch twitch.

After experiencing this several times, I now get the same visualization every time, the “round gray thing”, even if I sensed a real thing, but didn’t see it. For example, one time in the car at night on a narrow dirt road, Suzanne driving, she said “do you see that?” She was seeing some deer in the woods ahead, just off the road on the edge of what the head lights illuminated. I said “yes” because I too saw something, but I did not see the deer. I didn’t get my eyes to the deer fast enough. They had run away. This was not a Riddoch twitch because it was a response to a real thing that moved, the deer. However, my brain, being accustomed to providing an image when there is motion detected but no image, I perceived the “round gray thing”.

The description in the quoted paragraph of early Parkinson’s psychosis is so much like what I experience with a Riddoch twitch. The “psychotic symptoms are subtle”, “in the beginning, you can distinguish these images from reality”, “the illusion goes away when you look straight towards it” (it was never there). It tends to be to the side (where it can’t be disputed by optical vision) and is “stereotypical every time”. I call this a Riddoch twitch and ignore it. It does not happen often and when it does it is usually in low light conditions. I think this is a physical phenomenon, not a psychological one.

I don’t know why we have motion vision. Its main function may be to alert us to things happening off to the side where our optical vision is greatly reduced and our motion vision may be stronger. That may be one reason why Riddoch twitches tend to be off to the side. Another may be that if they occur directly ahead where optical vision is strong, the brain may ignore them.  

I am not disputing Parkinson’s psychosis, just the interpretation of this symptom. I am concerned that I have not found references to the possible role this physical phenomenon can play in diagnosis of PD hallucinations.

Also, given the description in the published literature, it is reasonable to conclude that I am just experiencing early symptoms of psychosis. I don’t think that, but check on me later.

I am interested to know if you, having PD, have experienced what I am describing, and if you do, is it easy to ignore? I am concerned that for some, this thing I am calling a Riddoch twitch, may feel spooky. The definition of “hallucination” is “an imaginary sensation perceived without anything in the environment to provoke it, like seeing an imaginary dog in the corner of the room when there is nothing there”. I believe that what I am describing is not a hallucination because it is not imaginary. It is real and if I am even partially right, it is happening to people who are vulnerable, questioning their own sanity and possibly being told that they are hallucinating. Even if I am right, I don’t know how common this phenomenon is. It may be rare. My concern is that, given a wrong diagnosis, how many times does a person see nothing there before they put the dog in it?

Vivid dreams, known as REM Sleep Disorder

REM Sleep Disorder is a common symptom for people with PD. These vivid, even ferocious dreams where I am physically fighting some imagined creature, person or even a machine, are scary. Once it was a spinning top, bigger than me. What makes these dreams scary is that I am acting them out. In my mind I may think I am hitting a bad guy but in reality, I am hitting or kicking at the air. REM Sleep Disorder is what forces couples who have shared a bed all their married life, to move to separate rooms.

Unlike most PD symptoms, I do not think REM Sleep Disorder dreams are caused directly by lack of dopamine and they are not unique to PD. “Dreams express an individual’s core concerns, drawing on memories that are similar in emotional tone but different in subject matter. This contextualization is clear in post-traumatic nightmares.” says Tore Nielsen, Director of the Dream and Nightmare laboratory at the University of Montreal[5]. As I realize that PD is the real thing, not something I will recover from, I want to fight it back. I usually wake from the dream when I am about to be overwhelmed by my enemy. Suzanne says I am usually screaming.

Movement Issues and Bradykinesia  

Pre-diagnosis Movement Issues

I was losing my sense of smell many years before I was diagnosed with PD. I still enjoy the taste of good food and an occasional smell comes through. There are many things that cause loss of smell.  PD appears to be one of them.

Our two sons are almost 11 years apart in age, born in 1970 and 1980. Starting when the youngest was 4 or 5 years old until we were all grown men, getting together at family events, we used to form a triangle to throw a ball between us. The triangle was almost a straight line with the youngest in the middle the first year there were three of us. It grew to a big triangle for a few years, limited by how far we could throw the ball and then to a straight line again, now with me in the middle. I came to have as much trouble throwing the ball straight as throwing it far. That was 10 years before I was diagnosed with PD. Sometimes I just watched, enjoying seeing their strength.

I walked with my head bent down looking at the floor (the PD slouch) for at least five years before I was diagnosed with PD.

Another early indicator of PD was the “PD mask”, the loss of facial expression. That did not occur as early as the other early symptoms. Suzanne said she thought I often looked like I was angry. This may have just been three years before the PD diagnosis.

About three months before I was diagnosed with PD, one arm stopped swinging when I walked. This is what got me to the doctor who in turn referred me to a neurologist and the PD diagnosis.

Tremor   

After being diagnosed with PD, the tremor and arm swing problem were my only symptoms of PD. The tremor was mostly in my right arm, though I did have whole body tremor (violent shivering) when I was cold.

Once, when young, while trying to fix a machine, I had my head in a tight place between hard steel surfaces with 3” to spare front to back. Something startled me such that I bent forward quickly and banged my forehead causing me to pull my head back fast, which resulted in banging the back of my head, alternately forehead then back, continuously, painfully, until I got my head out of there. My neck muscles were powering the fun without consulting my brain. The Parkinson’s tremor is much like that but without the pain. I cannot stop it by willing the participating muscles to stop. In normal operation two muscles working in opposition allow precision movement, like an artist holding a small brush about to touch the canvas or a surgeon making a precision cut. Add a little of what engineers call “lag” to such a control loop and it will likely oscillate. That lag is the slow synapse, the missing dopamine. That is what I think is the Parkinson’s tremor.

So how can I minimize the tremor if I cannot remove the lag (cannot add dopamine to the specific synapse)? I have no way to get in there and take control but I might be able to reduce the available energy to the muscles. That must be what happens when I am dozing off. The tremor stops then.

I stumbled across an opportunity to experiment with a specific tremor. My right arm tremored often, but not always. I came up with a reliable way to start the right arm tremor and a somewhat reliable way to stop the right arm tremor. Stopping the tremor was done by relaxing the muscles involved. Starting the tremor was done by scrubbing our glass stove top with the other arm.

The tremor started quickly but it could take a long time to stop. When it did stop, I immediately started scrubbing again. I worked on this for a long time, months. I was encouraged by the fact that it was getting harder to start the tremor. At last, I could scrub the glass top stove with my left arm without causing my right arm to tremor.

I cannot tell you that what I did was responsible for removing the tremor from my list of symptoms. It may have disappeared anyway. But I can tell you my tremor does not occur often and eight years have passed. Now I routinely scrub the stove top with either arm, and experience no tremor.

I have not eliminated all tremor. For example, I still often tremor when I am trying to talk but cannot seem to get my message out, but I think I did something that was worth the effort.

Problems with Large Muscle Movements

I suspect that everyone with PD has spilled drinks and broken dishes. I do two things: purposeful movements, poorly controlled (put the glass down but miss the edge of the table) and random movements (knock the glass over while reaching for the butter). The former seems to come when I have not pushed hard enough to overcome the apparent rigidity in my arms. The second may be caused by dyskinesia. Both seem to occur when my PD has advanced another step down and I have not accustomed myself to this new step. I “fix” the first with practice and the second by slowing my movements.

Problems with Small Muscle Movements

By small muscles, I am thinking about fine motor skills like writing (micrographia), putting small things together including buttons, things with screw threads, keyboarding, eating, opening cereal boxes, etc.

I believe that if I want an occasional victory over this disease, I need to hone two personality traits; patience and stubbornness (though Suzanne might tell you that the latter of these two doesn’t need any honing). Some days I cannot put something together, for example, screw a lightbulb into a socket. It jams, cross threaded. I change the angle of the bulb and it jams again. The one thing I do not do is ask Suzanne to help. I am usually successful eventually. Some things are more important, like the screw threads on the container for the water filter in our domestic water supply. Until I get that together after changing the filter, we have no water. I do ask Suzanne for help but only after I have spent some time on it.  

My handwriting is not legible but I can slowly print neatly. I like lined paper. I use the lines to keep my writing horizontal. I also use the lines to keep the size of each letter the same. Lower case is usually ½  the height of the space between the lines. Upper case is ¾ the space between the lines. I hesitate after every letter to assess size and alignment. Very tedious! Terribly slow! I can print with unlined paper by imagining the lines but I am even slower. That skill is needed for addressing envelopes.

I was once a touch typist, meaning I did not need to look at the keyboard to use it and I used all my fingers. I now use just one finger and I often have trouble finding a letter. I keep the spell checker busy finding my typos (many on every line, usually extra or missing letters) and my misspellings. I use the touch screen only with a stylus to implement the touch. I cover the touch pad with a piece of cardboard, hinged with a piece of tape, so I can access it quickly. Worse, is accidently hitting the control keys. That can put me some place else in my document while I think I am in the middle of typing a word, or even inadvertently closing my document. But keyboarding is better than hand printing.

Gait Issues

When I first had trouble walking, I tried to correct my stride by thinking about each muscle group and what it should be doing or not doing. That was both frustrating and not productive. Then another PD patient told me how to simplify my gait (just 3 parts, stretch out forward leg, land it on the heel, push off with the back leg). To do that for each step took concentration, so I still could not walk and talk at the same time, but it improved my gait. My physical therapist told me he could still recognize my gait as Parkinson’s because I did not twist my torso when I walked. Too complicated, I thought and dropped the idea of adding another motion to my gait. Then one day, I tried it, the three parts to the step, the arm swing and the torso-twist, all together. What happened was unexpected, a complete surprise! Everything seemed to work as it did before I had PD. The torso twist seemed to tie everything together. I am sure I could not fool anyone into thinking I had a normal gait but for the first time in a while, I could carry on a conversation while walking. It was a victory the way you feel victorious as a child, that first home run, or just riding a bicycle around the block without falling. This surprise was a big deal because it hinted that there was much more to learn about how my brain worked that might help me cope with this disease.

Somewhere in our brain there is a place where we store muscle memories. Muscle memories tell us how to use muscles to do a thing with our body that we have previously learned to do. The list of stored muscle memories would be long but would include, how to walk, how to run, how to ride a bicycle, how to catch a baseball, how to bring an overfilled cup to the mouth without spilling, and how to put it down. In short, just about everything we ever practiced and learned to do. These muscle memory recordings are there so we do not have to think them out each time we do something. The muscle memory recordings are not static recordings but rather are modified as needed. I catch the ball differently depending on where the ball is coming relative to where I am standing. These muscle memory recordings remain in my nervous system even if they have not been used for a long time, as anyone who tries to ride a bicycle after not riding for years, finds out to their delight. I believe that with PD, these various muscle memories are still there. There may be a way to awaken some of them by practicing the original movements. And when I practice, if I do not get the feeling that I am getting help from an old muscle memory, at least this idea got me to practice something. No harm in doing that.

Failure of Gait Initiation, FoG (Freezing)*

I recently started having the experience they call Freezing or FoG. What a nasty experience it is! It took me a few weeks to begin to learn how to maintain function; that is, how to ambulate with confidence after experiencing FoG.

Generally, in the self-help literature, FoG is understood as an extension of other gait disorders, including short steps, shuffling and unsteadiness. The literature describes FoG as “failure of gait initiation” (feet stick to floor or will not move). According to what I read, gait disorders can be helped by addressing balance, strength and energy level. FoG can also be helped by addressing the environmental factors that cause it, such as clutter or poorly lit rooms or shiny floors[6].

There are a host of suggestions for coping with FoG, some of which are similar to what I do. For example, Dr. Lieberman[7] describes them as useful “tricks” which are used at the Muhammad Ali Parkinson Clinic. They include humming or playing a tune, snapping your fingers or your cane while chanting “Go, Go, Go”, stepping over real or imagined lines on the floor or spots made by a laser light that you hold.

I think about FoG differently. I think that when my gait fails in this way (FoG), particularly when it is failing for environmental reasons (like a doorway), I stop walking right away and use another way of ambulating until I get by the obstruction. My only goal in this situation is to maintain function, being able to move my body away from danger, or risk of falling, when I need to do that. In my opinion, removing those fears are paramount, before even working on non-fearful festination issues.

Consider this example of freezing. I was standing and decided to walk across the room. Normally it takes a little more than a second to form the thought and take the first step. But this time I did not start moving. Instead, both my heels lifted so that I was standing on just my fore-feet. Both knees started an unproductive rapid back and forth without moving my feet. I could not walk normally. I could not walk at all for several seconds. I almost fell. Gradually I realized that in my PD progression, this strange thing was happening and it was happening often. It was my notification that I was taking another step down the PD staircase.

The way a person walks is called their gait. Our gait changes as we grow, as our weight increases into adulthood and our muscles get stronger. A person’s gait is the most efficient way s/he has to move around. As we reach our later years, injuries and diseases like PD take their toll. Again, our gait changes as needed to accommodate the changes in our body. Like everyone else with PD, I never had to think about my gait until I got PD.  When this happened, when my feet felt glued to the floor, I was facing something I could not ignore. Clearly, execution of my gait muscle memory, which had once automated my walk, is failing to function well. Not being able to move can be fearful, and the fear feeds back to the attempt, degenerately.

What follows is my hypotheses of what I think may be going on in FoG and what I can do about it. Using this thinking, I was able to do something important. I regained the confidence, that if I needed to get out of the way of danger, like a car moving toward me in a parking lot. I could do it.

My contention is, that in FoG, my lower-level brain (the part of my brain which is trying to implement a gait, probably my cerebellum and/or basil ganglia), is being overloaded with more information than it can handle (low dopamine, bradyphrenia ). And, that this problem can be solved.

When my gait fails (FoG), particularly when it is failing for environmental reasons (like going through a doorway), I stop walking and pause for a second. The next movement I make, will not be to start walking again. Instead, it will be to move one foot out ahead and pause again.

I believe the pause does two important things.

  1. It relieves my “low level brain” from the responsibility of walking while leaving it with the responsibility of maintaining my balance.
  2. It allows my executive to take control of placing one foot out ahead.

Researchers have found the place in the brain where conscious thoughts take place, where the executive is located, in the cerebral cortex. After the pause, when I move one leg forward, I am using a different part of my brain. I am using my executive.

The idea of using two different parts of my brain in a cooperative effort to accomplish something that is normally done automatically by one part, is what I am suggesting. This is something we know how to do. Long before PD had taken hold of my body, I would have occasion to do something similar to what I am describing. For example, while walking on a trail through wooded terrain, I might come across a large rock in the trail with a tree alongside the rock. The trail beyond the rock is higher still. I might stop to assess the situation. Then, using the tree trunk for balance, I grab it and step up onto the rock and the higher ground beyond it before continuing my walk.

In FoG it may take more than one “executive” step, each time dragging my back foot up and then pausing. I have noticed that after I have been practicing this for some time, I can reduce the size of the pause. I think the key is to make sure the pause and the “put my leg there”, be accomplished by my executive. 

Just a note on maintaining balance when using my suggestion of avoiding problems with FoG. After stopping, when moving one foot out ahead, it is important to first rotate the foot that is not being moved so that it provides left and right support.   

I am struck by how beautiful, how graceful, this transfer of control between parts of my brain happened when I was young and walking that trail. I guess it took losing it for me to notice. 

Drooling

Not drooling is important socially, to save computer keyboards and for my own comfort. I do not think I have much to offer that you no doubt have already tried, but this is what I do.

Posture really helps. I try to keep my chin up, not looking down. “Try” is all I am saying.

I suckle my mouth often (almost continuously when I am with people or typing).

I have learned to sleep on my back and when I want to sleep on my side, I first wet my lips and then hold them together until they dry, using my dry saliva as glue. This works sometimes but mostly I give up and lie on my back.

Postural Stability

Refers to ability to balance as on one foot (static) and while moving (dynamic). For several years now I have not been able to stand on one foot. I used to practice that. As a morning exercise I put my pants and socks on while standing but touching (usually leaning against) the bed. Then I turn 180 and do the other leg. At the end of the day, I take these off while sitting.

As to dynamic abilities, I need to be careful not to make large movements quickly lest I fall. I can put on my shirt, sweater or jacket while standing but I am careful to have my feet both facing forward, wide apart and that no one is near that could bump me.

Walking is easier than standing, as long as I don’t walk too fast. That is because while walking there is always a foot in the air that can be placed were needed to keep me upright, the way a bicycle rider keeps the bike upright by steering the wheels to remain underneath.  Counterintuitively, I find standing still on a horizontal surface will eventually result in a fall, though feet apart and shifting my weight from one to the other, like a golfer, sometimes helps. For me, standing still on an inclined plane is dangerous.

Getting up from a Chair, Any Chair

For kitchen (hard) or folding chairs, I use the LSVT “stand from a chair” exercise which is, butt forward on the seat (or at least not too far back), feet back as far as possible, upper body forward, arms out in front, all to get my center of gravity (CoG) directly above my feet, and then straighten my legs to stand. For overstuffed chairs I have to do something more because my butt is so far back and low. So, I precede the hard chair technique with a strong push with my shoulders against the back of the overstuffed chair while pulling on the front of the chair arms with both hands to get my butt to the edge of the seat so I can use the hard chair technique.  When this does not work to get my butt forward enough, I try again with a stronger effort. I want my CoG as far forward as possible before I push off.

For a toilet I use the same technique as for a chair. However, the shape of the toilet provides another option to get my CoG over my feet. The base of the toilet is narrower than the legs of a chair which means I can get my feet back on each side of the toilet, under my CoG.

To repeat because it is important, in general, for all kinds of chairs, while getting up I am doing two things, (1) getting my CoG over my feet and (2) then straitening my legs to stand up. It is important to do them in that order or I will fall back into the chair.

Standing from a sofa is difficult because at best you have only one arm rest, possibly none. In that case I use the shoulder push technique to get my butt to the edge of the seat. Getting my arms strait out front and my upper body horizontal, balanced over my feet, sometimes works better for me than pushing off.

Soft voice

My voice is soft enough so that often people do not know I am trying to say something, particularly in group settings. “LSVT Loud” practice results in a sore throat and a softer yet voice. A speech therapist tried to tell me how to use my mouth cavity to resonate and amplify the sound and to get me to move the sound forward in my mouth when speaking, but I have to admit I did not understand all that she was trying to teach me. That effort was interrupted by the pandemic.

Boxing

No one hits a person or gets hit in PD boxing, but the idea is to develop speed and agility, something PD patients have trouble with. They train for boxing by wearing boxing gloves and hitting speed bags, big bags or trainer mitts held and moved by the trainer.  This is a popular activity particularly for people (men and women) whose PD is less advanced and still have good balance.  I never participated because I have REM sleep disorder. The last thing I want is to learn how to throw a better punch.

Last Thought

Those of us who have PD don’t normally talk about the issues I have described here in this kind of detail. For some of us, like me, the disease has taken away our ability to process spoken words quickly. Which is why I wrote this paper. My hope is that, it will serve as a conversation starter. I hope you find some parts of what I wrote to be helpful and possibly supportive of what you think. Again, I want to trigger discussion.

If some of the paper is understandable, you are seeing Suzanne’s hand. I could not have written this paper without her. For those parts that are not readable, that is when I didn’t listen to her.

References


[1] Every Victory Counts, article by Mark Mapstone, PhD, page 145

[2] 100 Questions and Answers About Parkinson’s Disease by Abraham Lieberman M.D. page 32

[3] Every Victory Counts, article by Cherian Karunapuzha, MD, page 104

[4] Scientific American, October 2018. Article by Bahar Gholipour, page 14

[5] Scientific American, Article by Tore Nielsen, page 30

[6] Every Victory Counts, article by Helen Bronte-Stewart, MD, MSE, Page 98

[7] 100 Questions and Answers About Parkinson’s Disease by Abraham Lieberman M.D. page 97

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.