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What to expect in later PD

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

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

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

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

Cognition

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

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

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

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

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

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

Hallucinations

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

Unified Parkinson’s Disease Rating Scale

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

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

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

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

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

Age

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

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

Psychosis

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

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

Nursing Home Placement

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

Disability

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

Survival

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

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

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

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

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

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

REFERENCES

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Online this week: Understanding Parkinson’s Disease For the Newly Diagnosed

To learn more about your diagnosis, the options available and the services we offer at MCH, join the following speakers online:
• William Stamey, MD
• Grace Plummer, LCSW
• Tina Phillips, PT
• Lisa Clark, MS, OTR, CLT

Wednesday, June 9, 2021, 3-5p.m.
Registration at www.midcoasthealth.com/understanding-pd

TOPICS INCLUDE:
• Parkinson’s diagnosis
• Medications
• Emotional issues
• Quality of life
• Caregiver concerns
• Movement and assistance
• Programs and resources

For more information about these programs, call (207) 373-6585
www.midcoasthealth.com/wellness

Please get the COVID-19 vaccine

Some public health experts anticipate that no more than 50% of eligible Americans will be fully vaccinated against COVID-19.  That is a dispiriting thought when you consider that in the early days of the pandemic it was estimated that somewhere between 70 and 80% of Americans would need to be vaccinated in order to reach herd immunity.  However, with the arrival of new variants such as B.1.1.7., which is estimated to be at least 50 times more contagious that the variants that circulated around the US last year, it is quite possible that we may never reach herd immunity, and instead we might wind up with  endemic COVID: ongoing disease in our communities and our country.

In the first 100 days of the Biden administration around 220 million doses of vaccine were given.  We had reached an average of 3-4 million doses vaccine per day in this country, but have lately seen a decline to fewer than 3 million doses per day.  Vaccinations have been opened to younger people and we should have been able to keep the number of vaccinations at a high rate.  The main reason that we are seeing the numbers trail off is because of hesitancy among those who have not gotten the vaccine.  This is a problem because the B.1.1.7. variant is circulating among young people.  Many of them have very serious complications and are being hospitalized.  In fact, we learned last week on Maine Public’s program “Maine Calling” (from Drs. Jim Jarvish and Dora Mills) that among hospitalized cases of COVID-19 in the state, over half are winding up in the ICU, and most on ventilators (a year ago 20% were in the ICU, and 5-10% on vents).  This is a more aggressive variant, and there are others-some of which don’t look good at all. In Maine hospitalized patients with COVID-19 are sicker, younger, and coming in from more rural areas.  At the time of the show 135 Mainers were hospitalized with COVID-19, average age in the 40s! The 40s! A year ago the average age was in the 70s.  Finally, we learned that none of these people were fully vaccinated, meaning they have either not had the vaccine at all, or have not made it 14 days past the final dose (dose 1 of Johnson & Johnson, or dose 2 from Moderna or Pfizer).  The good news is that more than 80% of Mainers over 60 have been vaccinated.   

It is time for trusted messengers to emphasize the need for vaccine among hesitant people.  If you have a family member, friend, or caregiver who has not been vaccinated, please encourage them to get the COVID-19 vaccine.  I know that they might have a lot of reasons why they feel concerned about this, mostly to do with safety.  There are a few key points that you could stress.

First, the vaccine is far safer than a COVID-19 infection.  When people have side effects to the vaccine, they are usually because the person’s immune system is working.  Flu-like symptoms are a good sign after the vaccine, and do not mean a person is infected.  And, there is no truth at all to rumors that the vaccine will contain a tracking device or alter your cell’s DNA-absurd inexcusable lies like that have been circulated by public figures.  I always advise people to stop listening to these people, and to get information about COVID-19 from credible medical sources.  Talk show hosts, radio personalities, commentators, politicians, and conspiracy theorists are not good sources of information regarding medical facts around the pandemic.  If your loved ones still have questions they should ask their medical doctor, and know that 95% of medical doctors got the vaccine as soon as they could. My most significant side effects after the vaccine were senses of relief and joy. 

Second, although COVID-19 infection of unvaccinated people might be mild or asymptomatic in many, those people might spread the virus to others for whom it could be deadly.  For more on that see prior articles in MPDN on asymptomatic carriers. We should recall that a year ago asymptomatic spread accounted for 40% of infections. I worry that now the number may be higher.  We are still seeing numbers of new cases in the hundreds daily in Maine. 

Third, when viruses reproduce inside of people they have the chance to mutate and form new variants.  The risk in a scenario like that is that a much more deadly variant might arise.  That is what happened during the third wave of the 1918-1919 influenza pandemic.  People were fatigued and tired of physical distancing and mask wearing. They wanted to open things back up, to gather, to go on with normal life.  Along came a more deadly wave of influenza.  In total, that pandemic killed over 50 million people across the globe, more people than bullets in World War I (1914-1918).  This was at a time when the world population was estimated to be less about 1/4 of what it is now.  Viruses kill, especially if allowed to infect as many people as possible.  We are lucky we haven’t seen a variant as deadly this time.

So please, if there is no legitimate medical reason to avoid it, get the vaccine.  Alternatively, if you think you can do it, be a trusted messenger to someone who has not been vaccinated.  Tell your loved ones that they need the vaccine too. 

Dr. Unia Joins Mid Coast Medical Group Neurology

Roople K Unia, MD

Dear Readers,

I am a Movement Disorders Neurologist, yoga teacher and outdoor enthusiast.  I was born and raised in Halifax, Nova Scotia but am of East Indian descent.  I attended Dalhousie University in Halifax for my undergraduate degree in Neuroscience and completed my medical school training in Krakow, Poland (in English). I did my Neurology Residency as well as Vascular Neurology Fellowship at the University of Rochester Medical Center in Rochester, NY.  I then completed my Movement Disorders fellowship at New York University in New York, NY.  I was at Northern Light Neurology before moving to beautiful Southern Maine. It has been my pleasure to serve the Maine Parkinson’s community in Bangor since 2015, and will continue to do so in Brunswick as of 2021.  I am delighted to join Mid Coast Medical Group Neurology and am welcoming new patients. 

When I’m not in the office I can be found walking my dog, mountain biking or rock climbing with my partner. I look forward to meeting you!

Rock Steady Boxing

The Mid Coast  Rock Steady program has gone virtual. We are hosting classes on Tuesday and Thursday afternoons from 1:30pm until 3pm. If COVID is preventing you from hitting the gym and  you want a great work out safe at home feel free to join the fun. The classes are held on zoom so all you need is a computer/tablet, space to move, and maybe a chair to help with balance or to do an exercise seated. During these hard times while the class is being held on zoom the program is free and all are welcome. If you are interested please email Zachary Hartman at zhartman@midcoasthealth.com . At that point your name will be added to the email list to receive the zoom invites. The zoom classes are opened at 1:00pm for those that just want to come socialize for 30 minutes before class starts at 1:30.

Thanks, Zach

Zachary Hartman
Clinical Exercise Physiologist
Midcoast-Parkview Health
Cardiac and Pulmonary Rehab
Running Start
Rock Steady Boxing

Why herd immunity without a vaccine is a bad idea

There have been recent reports that Trump appointee Paul Alexander, Health and Human Services aide to Assistant Press Secretary Michael Caputo, advocated for herd immunity over the summer, even as cases were rising and people were dying.  He wrote in an email “Allow the nation to develop antibodies. Infants, kids, teens, young people, young adults, middle aged with no conditions etc. have zero to little risk… So we use them to develop herd… we want them infected.”    (1)

Normally, I would not discuss the ramblings of an unqualified person with no training in the area under discussion. In this case it matters because that person was involved at the federal level, and apparently, many others felt the same way. I have also heard from several patients in my office who stated that they would prefer “natural” or herd immunity without the vaccine.  

Herd immunity occurs when a high proportion of the population has had either prior infection or vaccination.    The 1918 influenza pandemic, which killed at least 50 million people is an example of “natural” herd immunity.  There was no vaccine.  The Black Death, which killed up to half of Europe over a three year period of the 14th century is another example. (2)

Another reason to discuss this is that outgoing POTUS as late as September signaled positively about “herd mentality” (misnomer, he likely meant herd immunity). (3) Whatever he meant by that, the lack of CDC protocol at White House meetings and the massive in-person campaign rallies (including a “surprise” rally in Maine) (4) we saw before the presidential election, and his other misstatements about herd immunity and how to gain it fit into the playbook of intentional infection.  It appears that has been the plan. The problems with this, and Alexander’s thoughts are several. 

First, young adults and children are not immune to COVID-19.  They may be less likely to develop serious illness, but some do get very ill, and some have died from the illness. (5)  People under 30 have represented over 20% of COVID-19 cases in the U.S., and may spread the virus more easily than people in older age groups.   In one study of over 3000 people between the ages of 18-34 who had COVID-19, 21% wound up in intensive care, 10% on a ventilator, and nearly 3% died.  (6)  There are also many reports of young children with severe cases. (7)  It is not a no-risk situation.   And don’t we care about young people (or any people for that matter) with underlying conditions making them at very high risk?  Making everyone around them sick and infectious is a dangerous thing to do.  The virus that causes COVID-19 is an invisible threat that spreads very effectively from asymptomatic and pre-symptomatic carriers. (8)

Second, anyone with the virus can spread it.  Alexander’s proposed strategy to infect as many young people as possible in order to develop herd immunity shows how little he understood about viral infection.  Having young people infected would not stop those young people from spreading COVID-19 to parents, grandparents, coworkers, neighbors, and so-on. Mass infection of young people would kill more people overall, and it would overwhelm hospitals, with predictable dire consequences.   Allowing an epidemic to spread unfettered is a recipe for disaster, and a foolish thing to suggest.

Finally there is a lot more to say about this, but let’s part with this thought. Viruses mutate when they reproduce (known as replication). They can only reproduce, or copy themselves, in our bodies.  In fact, that is the purpose of infecting us: to hijack our cells and make copies of the virus, a staggering number of copies.  The problem is that errors occur at a predicable rate when making these copies. In other words, you expect mutations.  Thus, the more people are infected, the more viruses copy themselves, the more mutations will occur.   It also means it becomes more likely that some horrible mutation will develop that makes the virus a more effective killer, more contagious, or some other awful outcome.  We don’t want those results, and we certainly don’t want to push the situation.  Giving the virus to more people intentionally means asking for mutations and new strains. It is a roll of the dice, a bad gamble.  We are already seeing a new strain in the U.K. (9) that is more contagious than the strain we have already been fighting. (footnote) It is almost certainly here now.  Another possibility is a mutation that makes the virus so different that the current vaccines we are finally starting to get become useless.  Remember from my last post (10) that a vaccine triggers an immune response to some part of the virus that the body can recognize as foreign.  If that part changes, the existing vaccine will not help, because the immune system will not see it. Think of it like this, the police is looking for a man, but they have only a photograph. Like Humphrey Bogart in Dark Passage, the man gets plastic surgery. The police does not recognize him.

It is a lot to think about.  

Do your part please.  Wear a mask or appropriate facial covering, stay at least 6 feet apart, wash your hands, don’t touch your face unless your hands are clean, don’t congregate in groups, and be COVID-aware.   Please be very careful on Christmas and the other holidays.  Public health officials are asking people not to travel and not to gather because the epidemic in the U.S. (and in Maine) is worse than it has ever been, even as above – we likely face a more contagious strain from the U.K. circulating around us.  If you must see others over the holidays, remember risk is compounded by time and exposure. (11) The more exposure, and the longer the time, the more likely you are to catch the virus.  Be smart.  Even writing this I know that it hurts not to see the ones we love, but isn’t avoiding risk a way of saying “I love you”?  And for that matter, isn’t getting the vaccine the same?  Herd immunity without a vaccine is a bad choice.  Make a good choice. 

Stay tuned to the Maine CDC for a schedule of vaccinations, or check with your doctor.

footnote: for a discussion of the contagiousness of COVID-19 and the reproduction number, see COVID-19 questions in MPDN, March 2020  https://mainepdnews.org/2020/03/28/covid-19-questions/

REFERENCES (as of 12/23/20)

1. https://www.theguardian.com/world/2020/dec/17/trump-appointee-urged-herd-immunity-covid-paul-alexander   

2. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4013036/#:~:text=The%20Black%20Death%20was%20one,1%5D%E2%80%93%5B3%5D.

3. https://www.usatoday.com/story/news/politics/elections/2020/09/15/herd-mentality-trump-again-asserts-coronavirus-disappear/5812463002/

4. https://mainepdnews.org/2020/12/06/covid-19-on-the-rise-what-to-do/

5.  https://www.hopkinsmedicine.org/health/conditions-and-diseases/coronavirus/coronavirus-and-covid-19-younger-adults-are-at-risk-too

6. https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2770542

7. https://mainepdnews.org/2020/07/16/covid-19-update-in-and-out-of-maine/

8. https://mainepdnews.org/2020/05/29/risk-and-the-asymptomatic-carrier-of-covid-19/

9. https://time.com/5923758/new-covid-strain-uk/

10. https://mainepdnews.org/2020/12/17/are-you-planning-to-get-a-covid-19-vaccine/

11. https://www.erinbromage.com/post/the-risks-know-them-avoid-them

Are you planning to get a COVID-19 vaccine?

According to polls, up to half of Americans will answer “no” to that question.  There are a variety of reasons for this.  Fear of the unknown is a common problem.  It is also impossible to make an informed decision about something that is not understood.  Maybe we can get a little bit of a handle on that here in a few words.  Let’s get to know this vaccine.

First of all, we are actually talking about more than one vaccine.  The first vaccine against COVID-19 to be approved by the FDA was the Pfizer vaccine.  Close on its heels, and likely to be approved any day now is the Moderna vaccine, which was discussed in the July MPDN article “Some good news about a promising COVID-19 vaccine.”

Pfizer and Moderna are both messenger RNA (mRNA) vaccines.  These vaccines use the machinery of the cell to manufacture proteins that the body can then recognize as foreign.  That is important, because this is how the immune system works (and using the immune system is how you fight off viruses). Under normal circumstances, if you are infected by a virus, for instance a cold virus, the virus will have proteins on its outer surface which are different from normal proteins in the human body.  Our immune system monitors the body for unusual proteins.  When these are found and recognized as foreign, the body targets and destroys the virus.  One way to imagine this might be to think of a hospital. The staff all wear a hospital ID. A person with the wrong ID would be recognized by security as someone who doesn’t belong. Hopefully, they won’t be destroyed, but you get the picture, right?

How do RNA vaccines work?

In the body every living cell contains DNA, the genetic code.  This genetic library contains all the information needed to make you, to repair injuries, to make proteins, and so on.  It works like this: DNA is a template.  Your cell can use small sections of your DNA to make mRNA.  That mRNA leaves the nucleus where the DNA is located to be used in machinery within the cell called a ribosome to make proteins. I know, it sounds complicated, but stick with me. Usually proteins serve some function in the body, for example building muscle cells. So, again, DNA makes mRNA, which makes proteins, which build things like muscles, or maybe tiny proteins on the surfaces of things.

Some very clever people have taken a look at the virus that causes COVID-19 and found that when we have an immune response to this virus we make a lot of antibodies against something called the spike protein.  The spike protein is the business end of the virus, and if it is targeted the virus will likely be destroyed. 

The Pfizer and Moderna vaccines contain mRNA that will be used by machinery of the cell to produce a molecule that looks like the spike protein. After doing this, the mRNA will degrade. To those that keep saying it will change your DNA, no, it will not do anything to your DNA-wrong direction!  Cells will then kick the new foreign protein made from mRNA out, and the immune system will see this foreign protein and develop antibodies against it.  The great thing about the immune system is that it tends to remember foreign invaders.  That is immunity. While we are not sure how long this memory will last for this particular invader, most of us believe vaccination will stop this pandemic if enough people take it. That is why we need you.

Some people are worried about potential side effects. Fair enough, but so far the data doesn’t show a lot of reason for concern. In studies some people experienced flulike symptoms following injection of the vaccine.  Flulike symptoms actually mean the immune system is working, not that the person was infected-as I have heard people guess. Those people couldn’t be infected by the vaccines, because no virus was injected. 

Amid the billions of people vaccinated over the next several months we might wind up having a relatively few people with serious side effects. If you give every person on Earth an aspirin the same thing will happen. That level of risk is not a good reason to skip the vaccine. Think of the odds in relation to you. The overall risk associated with receiving the vaccine has so far been very low (usually only minor symptoms among a minority of patients); whereas the risk of serious illness from COVID-19 is about 20%, and death from COVID-19 is somewhere around 2-3% for the general population (much higher for older and chronically ill individuals). Generally, your odds are much better with the vaccine than without. 

Finally, be careful where you get your information about this.  Talking heads, politicians, some commenters on Facebook, and other uninformed sources are not where you should be getting medical advice.  Defer to an expert.  Talk to your doctor, check with the Maine CDC (or listen to the updates). And, get in line for a vaccine. This is how we are going to defeat COVID-19.

COVID-19 on the rise, what to do?

As of yesterday, the date for which the latest data is available, there have been 11,801 confirmed and 1547 probable COVID-19 cases among Maine residents since testing for COVID-19 began.  This is a combined 13,348 cases, but does not include positive test results from out-of-state visitors or part time residents whose official residence is in another state.  The total also does not include those that were never tested and told to shelter in place unless symptoms became severe.   And yes, that still happens.  If a person has a known infection and a household contact becomes symptomatic, many are not being tested.  There are also those who are asymptomatic (maybe four-fold the number of symptomatic infections) who are typically not being tested unless part of a mass-testing operation at a congregate care facility, for example. 

The point is, while we are still doing better in terms of numbers than a lot of other states, there are a lot of cases in Maine, and the numbers are rising rapidly. 

The last time I reported on this on September 9, we had been seeing relatively low daily numbers: that day just 23 new cases. Generally, in August, September, and the majority of October, we would sometimes see over 50 new cases, but other times we would see a number in the teens, and the daily average was low.  Starting around the end of October we began to see higher case numbers: October 30: 103 cases, November 5: 183 cases, November 13: 244 cases.  In fact, we’ve broken 200 new cases a day regularly since mid-November.  Today there are 221 new cases. Thursday, December 3 we saw an all-time high of 346 new cases.  How did we go from 380 active cases of infection on September 9 to 3,041 today?  What changed?

It may be true that seasons had started to change and people were beginning to go indoors more toward the end of October.  I don’t think the effect was that great though, because the weather was actually pretty mild, and most days were nice.  I cannot stress enough that congregating with other people who are not part of your household is a bad idea, indoors or out. 

The virus is highly contagious, and as I have pointed out several times in MPDN, asymptomatic carriers can spread the virus and not even know it. 

You cannot tell by looking at someone that they are an asymptomatic carrier.  They cannot tell either.  Everyone should assume that they, and everyone around them can either catch or spread the virus that causes COVID-19. 

We should be standing at least six feet apart from people not in our household. We should be PROPERLY wearing and handling masks or facial coverings, wearing eye protection (yes, cover your eyes), washing hands, not touching our faces, and generally being COVID-aware.   Avoid indoor spaces with those outside of your household, and stand at least six feet apart, even if you are outdoors.    

Another issue with the rise in numbers is that people were getting together more in late October.  I don’t have data about this, but I kept hearing that friends would gather, or two different “bubbles” would meet up.  There were larger gatherings also.  One particularly egregious example was a “surprise” rally for Donald Trump at the Treworgy Family Orchard in Levant on Sunday, October 25.  According to NBC (1) “Supporters lined the streets along the route from Bangor, where he landed about half an hour earlier, to wave to the presidential motorcade… Hundreds of supporters greeted Trump at the orchard despite the event’s lack of publicity ahead of time.” 

According to the Independent (2) and other sources, the crowd grew to approximately 3,000 people.  Widely shared news coverage showed people crowded together, most not wearing masks, and voices raised.  Was this really a surprise?  That is a high number of people.  I suspect they did not all come from Bangor or Levant (Levant, which is just 10 miles from Bangor, has a population of about 2,900).  

I have made the point here before: louder voices generate more droplets, and project them farther too.  Droplets from infected people, even asymptomatic infected people, contain virus. If you are raising your own voice you have to breathe more deeply-and are more likely to inhale the droplets and virus in the air around you. 

This rally was an unbelievably reckless and unconscionable thing to do in the middle of a pandemic. I don’t think that rally alone was responsible for the massive increase in numbers, but it and other human contact has to be the answer.  And, it was the most obvious example of risky behavior in our state at the time. Speaking of time, look at the numbers: October 25, the day of the rally, the number of new cases in Maine was 64. Remember, it takes time for the virus to incubate, and for people to become ill and seek care. On November 5 the number was 183.  The rise in cases has been steady since, as have hospitalizations, and as have deaths due to COVID-19.  December 1 there were 20 deaths in one day, a record for Maine (3). The previous high number was 12 deaths on November 24.

Flash forward to Thanksgiving Day, November 26.  While apparently most people did not gather for the holiday this year, many did.  I think we all saw footage of busy airports on the news. I have had the unpleasant of circumstance of hearing about it from a minority of patients. Eating with others is a particularly effective way to give or receive an infection with COVID-19.  The CDC is clear about this when discussing food from restaurants, for example (4). The highest risk is when people eat together and seating is not spaced at least six feet apart.    Not to put too fine a point on it, but eating generates saliva.  Saliva generates droplets.  People tend to gather for Thanksgiving with loved ones, and you can’t eat with your mask on.  There is talking, laughing, etc.  If a virus is present it is likely to be spread. 

The problem is that we are beginning to stress hospitals in Maine, and if numbers continue to rise the way they are, we will exceed capacity in the coming weeks.  Think about what that means.  Put it into perspective.  During the first wave of COVID-19 in Maine our peak for hospitalizations was on May 26, when we had 34 patients in non-intensive care unit (ICU) hospital beds, and 26 in the ICU (5). For our purposes, consider the terms “ICU” and “critical care beds” interchangeable.  October 26, the day after the above rally in Levant, we had 8 non-ICU patients and 5 patients in ICU beds across the entire state.  We had sustained period of low hospitalization numbers since July.  That all began to change at the end of October, and by December 4 there were 119 patients hospitalized in non-ICU beds, and 45 in ICU beds in Maine. Today the Maine CDC reports 171 hospitalizations and 50 in an ICU. 

According to Dr. David Seder, intensivist at Maine Medical Center, about 30% of those who end up in an ICU bed at MMC will die.  As of today, 227 people have so far died from COVID-19 in Maine, about 2% of confirmed cases.  

The capacity of hospital critical care beds in Maine is 385.  At any given time there are many other critically ill patients in ICUs for a variety of reasons such as stroke, heart attack, injury, and so on.  Currently, 282 critical care beds are in use (6). Imagine when those beds are full.  If the hospital is at or past capacity your COVID-19 infection might not be treated, or at best will not be treated the way it would ideally, and neither will your stroke, your post-surgical complication, or any other illness.  In a system over-burdened, problems start to happen. And some of those problems include difficulty safely containing the virus in the hospital itself.

And, what if infection spreads through the hospital staff?  Face it, the more COVID-19 patients we see, the higher the risk of infection.  As of Friday, December 4, the Maine CDC reported 1,722 healthcare workers in Maine had been diagnosed with COVID-19 since testing began. These are confirmed cases.

What should we do with this information?  Simple, stay home.  Don’t congregate.  Don’t gather over the holidays.  Don’t go to a New Year’s Eve celebration.   Do all that you can to avoid catching or spreading COVID-19.  If you have relatives who are treating this like it doesn’t matter, talk to them. It does matter.  They might not get sick, the truth is, most infections result in only a mild illness.  But, 2% of people die. That is a lot of people, and if someone spreads COVID-19 they will have had a hand in those deaths. If they believe the absurd idea that we should all just catch COVID-19 and develop natural herd immunity, that is also a flawed premise. Maine has a population of about 1.3 million.  If 2% died, the number of deaths would be 26,000 people. But make no mistake, in a nightmare scenario like that the numbers would be much higher because the hospitals would be overwhelmed.

Do the right thing.

REFERENCES

  1. https://www.nbcboston.com/news/politics/trump-scheduled-for-surprise-visit-to-maine-sunday-after-nh-rally/2217738/
  2. . https://www.independent.co.uk/voices/the-maine-district-trump-has-become-obsessed-with-b1562898.html
  3. https://www.pressherald.com/2020/12/01/twenty-deaths-reported-as-covid-19-storms-across-maine/
  4.  https://www.cdc.gov/coronavirus/2019-ncov/community/organizations/business-employers/bars-restaurants.html
  5. https://www.pressherald.com/2020/12/01/twenty-deaths-reported-as-covid-19-storms-across-maine/

Webinar with Janet Edmunson, M.Ed.

Join us for a FREE Webinar on September 29, 2020  
Getting Better Sleep as a Caregiver
by Janet Edmunson, M.Ed.  

For family and professional caregivers  

Tuesday, September 29, 2020 (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:  https://tinyurl.com/sleepforcaregivers
Or paste this link into your browser:  https://attendee.gotowebinar.com/register/367055869464547074

Active cases update

As of 9/8/20, the latest date for which the numbers are available, the Maine CDC reported a total of 4734 Mainers who have had COVID-19 since testing began over 180 days ago.  Among those cases, 4135 have recovered (87%), and 134 have died (2.8%).  Active cases totaled 465 (9.8%).   Also since testing began 999 health care workers (21%) in Maine have been infected with COVID-19, 933 of whom have recovered.  This means there are likely 66 active cases among health care workers. As of the end of July there had been no deaths among health workers, but I don’t think that information has been updated since.  And, take a moment to consider that “recovered” simply means the infection is over.  It does not mean the person is well.  We have seen many cases with what appears to be permanent lung damage, or other ravages left by the virus.  It is serious.

As of yesterday, a total of 429 people had been hospitalized with COVID-19 in Maine since the start of testing.  The number of hospitalizations is not just Mainers, but all hospitalizations of COVID-19 within the state.  If we add an estimated 200 out of state cases to the overall total the percent of cases hospitalized in the state is 8.7%.  In Maine on 9/8/20 6 Mainers were in critical care, and 2 on ventilators with COVID-19.

So, what does this tell us?  If we look at the graphic for this post (view on the website if you cannot see by email), the number of active cases is down from the peak of 714 (May 24), but is unfortunately trending up currently.  This is for the most part due to a series of widely reported preventable outbreaks.  We just had Labor Day, and hopefully will not see a spike following holiday gatherings. 

We are not done with COVID-19 yet, and we need to be careful because fall is approaching, and with it, cold and flu season as people head back indoors. Please continue physical distancing, hand washing, covering coughs and sneezes.  Please use good sense and wear a mask or facial covering.  If you can’t do that, stay home.  Wearing a facial covering limits the spread of droplets which contain the virus that causes COVID-19.   To those of you who complain about wearing a mask when you go out, imagine those of us who wear one all day, every day.  We like it even less, but we do it for a good reason.  We still do not know who the asymptomatic carriers are.

Please don’t argue with health professionals about whether you can accompany a loved one to a doctor’s visit.  There are criteria in place meant to help everyone, including us, to limit the spread of COVID-19.   Yet, doctors, nurses, and office screeners at the front door have to deal with very difficult people about this topic daily.  It helps no one, and creates additional risk.

Also, if you can take one, get a flu vaccine as soon as you can.  If you are eligible for the pneumonia vaccine, please get it.  COVID-19 can be hard enough to fight by itself.   

That’s it.  I hope you are healthy in body, mind, and spirit.