Author: Guest Author

Guest authors have no financial or other relationships to Maine PD News.

Life. Death. Everything in between.

by Grace Plummer, LCSW

Hi there.

My name is Grace Plummer. I have been a clinical social worker for about a decade now and practice currently at Mid Coast Medical Group Neurology.  I work with Dr. Bill Stamey as a Behavioral Health Clinician; hereafter abbreviated as BHC.

Dr. Stamey invited me to write a piece for his Maine PD News introducing myself and with a greater goal of discussing how the role of a BHC may be beneficial for someone living with Parkinson disease. His offer appealed to the amateur writer in me who initially thought that it’d be both interesting and useful to write about the most troublesome non-motor symptoms noted in patients with early and late stage PD, as well as how we know that there are skills that can mitigate these disturbances. I first thought I would get very clinical and talk about the prevalence of depression in PD, how it is undertreated and how seeing a BHC preventatively or at the onset of symptoms can reduce the burden of this psychiatric phenomenon.

But after tossing my preliminary ideas around for a week or two I reminded the writer in me that I am not a very good scientist or thorough researcher (we’ll leave that to Dr. Stamey, right?!) and so ultimately decided that I’d be wiser to speak organically and conversationally about myself, and then anecdotally about the observations I have made since joining the team here at the neurology practice.

I hope that is okay. Here goes…

In my pre-bedtime thoughts last night as I was reflecting on my day after tucking my twin daughters into bed, I became aware again of this recent theme that has been playing over and over in my mind since becoming a parent just a few short months ago.

My mortality.

My children’s mortality.

The mortality of everyone I love.

I’ve noticed that I spend a fair amount of the free time I have to wander about in my thoughts, which is terrifically minimal since having children, yet enough to capture my full attention when the topic is larger than that of the daily minutiae, thinking about death.

How will I prepare for it? When will it come? How will I teach my children about it as the last stage of development in our short, wild lives?

Some might say that this is premature, or even pathological. I disagree. In my contemplations, and in my work, I have come to recognize that thinking about death is ubiquitous, and maybe even healthy.

We all think about dying, though when it enters our minds and maybe why it is there are variable. That said, I don’t think we are particularly good at talking about it. Now, as mentioned before, I’m not a researcher so I don’t sit with empirical support for this hypothesis in my lap today, but I’d bet that if we looked closely at those of us here in the United States as compared to other cultures in other countries, we’d find that we’re especially ill prepared to talk about mortality. No one’s fault. It just is. We’re scared. We’re too busy. We think it’s morbid to talk about death and dying. We equate dying with serious illness instead of with life.

Curious thing about this observation is that I haven’t met a person yet who doesn’t want to talk about it. In truth I spend a great amount of time helping people sort through their beliefs about life, and their beliefs about death. If words didn’t dilute our hopes and fears, it seems that most of our communication would be about life and death, right? What more is there, really? And what is at the root of depression? Fear, loneliness, sadness. Perhaps worry about our mortality and the mortality of those we love.

It’s relevant to share that I’ve noticed how those of you in the Parkinson’s Clan, (I very respectfully and fondly use the word “clan” to collectively describe those of you in the Brunswick area who have created this caring, connected sub-community to thoughtfully and meaningfully tackle this disease through participation in support group, exercise programming and informal lunch dates) are greatly courageous in your wrestle, perhaps your dance, with the universal , inevitable thing that is death. I’ve sat with you while you’ve cried, begged, cursed, laughed, planned, and celebrated. I’ve watched with enormous regard as you’ve shared your ideas and wishes with me. I’ve truly been honored to be a small part of your clan.

I value this role. My role in the neurology practice as a BHC.

My real work here is to create a space where you can address what matters by uncluttering and removing what may be in the way.

If you’re looking for a place to study and contemplate, whether it be about life or death, I’m here. I don’t have all of the answers but I’m certainly willing to journey into the unknown with you in the hope that living with PD brings you closer to your true self.

And because no one should ever grapple too long alone.

Take good care always,

Grace

 

 

Portland Area Atypical Parkinson’s Support Group

by Janet Edmunson

Occasionally, someone originally diagnosed with Parkinson’s may later have the diagnosis changed to one of the atypical Parkinsonian disorders.  These include progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), multiple system atrophy (MSA) and Lewy Body Dementia (LBD).  While each of these have some movement and non-movement symptoms similar to Parkinson’s disease (PD), they also have other distinctive symptoms that are difficult to manage and deal with for the person affected and the caregiver.  In addition, PSP, CBD and MSA progress much more quickly than PD and LBD. 

Since their needs are unique, Barby Johnson and I started an atypical Parkinson’s support group here in Maine over 10 years ago.  Barby’s husband died of PSP and mine of CBD. 

Our group meets four times a year in Falmouth on Sundays from 1 p.m. to 3 p.m.  During the meeting we usually go around the room and allow every family to discuss what’s been happening since the last meeting and bring up any issues and concerns they are facing.  The group has a positive attitude and addresses issues in a supportive, uplifting way. 

If you are dealing with one of these diseases, we’d love to have you join us.  You can email or call us to get information on the dates of our upcoming meetings as well as directions to our meeting location in the MaineHealth Learning Center at 5 Bucknam Road in Falmouth. 

–Janet Edmunson (207) 799-4963 or janet@janetedmunson.com

–Barby Johnson (207) 633-0881

Stride. Walk. Jog. Run.

by Hunter de Garmo

I am an Husband, Son & soon to be Father (April 4th is coming soon!!!) living in Wiscasset, Maine and I will be running a 50K  (31 miles) on the indoor track at the Boothbay Region YMCA in support of the Maine Parkinson Society.  100% of the proceeds will go to this organization which helps not only my Mom Barbara, but hundreds of Mainers with PD pay for exercise classes, medication and exercise therapy through the Maine Parkinson Society (MEPS) Respite Care program.

STRIDE will take place on Tuesday May 2nd, 2017 and I will be running my ultra distance of 50K from 8am – 4pm while throughout the day participants can make a $10 donation and walk, jog or run ANY distance the choose.  People from all over the State of Maine will be coming back to support and experience this event while enjoying the Food, Music, Vendors & Activities in the Coastal Club Room from 9am – 12 Noon.

The Journey.

Running has been my passion ever since 2009 after over a decade of battling drug & alcohol addiction. Somehow I survived and now I ‘Run For Recovery’ and use the gift of the endurance athlete to inspire ALL to be of service to themselves, their family & their community.  During training for my first marathon I helped to create a 5k Power Run & Walkathon in Stowe, Vermont when I was on the board for the American Parkinson’s Disease Association.  This event is now in it’s 8th year and has GROWN raising over $25,000 for Vermont families statewide. My running journey has lead me to run two 50 Mile Ultramarathons, a 50K for STRIDE and 3 Marathons fundraising for Team Fox & The Micheal J. Fox Foundation.  I was featured in 2013 on their Blog ‘Fox Focus’ as being one of a handful of runners EVER to run an Ultramarathon for the organization.

My long term mission for STRIDE is to give everyone that is involved with Parkinson’s Disease a chance to connect with individuals, businesses and community programs to inspire a healthy lifestyle.   With the growing population of Mainers being diagnosed each year – events like this are going to be pivotal in educating entire generations and inspiring caregivers to reach out and understand there are opportunities and people who care.

Please spend some time on my Instagram @runlivethrive and learn more about my story on the Facebook Event Page and let me know if your organization would be interested in supporting my mission for 2017.

One of my greatest inspirations, Ultra Runner – Dean Karnazes, once said… “Run when you can, walk if you have to, crawl if you must; just never give up.” …this echoes true in both my adventure as an Ultra Endurance Athlete and my Mom’s grace while living with Parkinson’s Disease.

WATCH the BRCTV Channel 7 Documentary on STRIDE 2016 >>> https://vimeo.com/165595939

LEARN more about Hunter de Garmo & STRIDE 2017 >>> Facebook Event Page : https://www.facebook.com/events/181875098965201

Instagram : @runlivethrive

MAKE a Donation to Parkinson’s Disease Research, Awareness & Support in Maine >>> www.maineparkinsonsociety.org

Sponsorship Donations can be made out to ‘Maine Parkinson Society’ and mailed to : Maine Parkinson Society ATTN: Morgan Knox 359 Perry Road Bangor, Maine 04401

Protein Redistribution Diet

by Alison Fernald RD, LD, CDE

Editor’s note: This is a companion to the PD and diet article, presented as a way for patients concerned about the effect of eating proteins while taking carbidopa/levodopa (Sinemet).  As mentioned in the article, the two may compete for absorption and therefore reduce the effect of the drug.  The general approach is to take levodopa one hour before, or two hours after meals containing protein.  

-WS

 

Protein needs vary depending on height, weight, gender and age, but generally, 1.2 grams of protein per kilogram (2.2 pounds) of weight is adequate to preserve lean muscle mass.  The diet below provides approximately 85 grams of protein, enough for a person weighing about 160 pounds.

7:00 a.m.   Take medication – coffee or tea if desired, which have no protein unless milk is added

7:45 a.m.   Breakfast of 2 eggs or ½ c. cottage cheese, or nuts if tolerated; a piece of fruit; a slice or two of whole grain toast with 2 tsp. butter or vegetable oil spread; and 6 ounces milk (cow, almond or soy). (22 g protein)

11:00 a.m. Take medication

12:00 p.m. Lunch with 1 cup of vegetables of choice, including beans if desired; 2 oz. tuna or other protein of choice; 2/3 c. brown rice, stone ground bread or quinoa (a whole grain that has extra calcium, is less refined, and has more fiber than white bread).  Don’t forget to add some fat to the meal – mix tuna with olive oil mayo, or drizzle oil and vinegar on vegetables – 1/2 to 1 tablespoon is fine.  (about 20 g protein)

4:00 p.m.   Take medication

5:00 p.m.   Meal with up to 4-5 ounces of protein:  chicken, fish, beef, pork (lean) or a bean dish like chili with lots of chopped vegetables (at least 1 c.), and a salad, or sautéed onions with the protein (or any vegetable you like), and ~1 c. of whole grain/starch of choice – ex:  pasta, peas and corn, brown rice, whole grain bread or roasted red skin potatoes, or a baked potato.  Add a little healthy fat – cold pressed oils like grape seed, walnut and extra virgin olive oil have potential to be slightly better than the mass produced vegetable oils (we all need some fat in our diets, just avoid deep fried choices, or pre-deep fried items like tater tots and chicken nuggets).  (about 35 g protein)

8:00 p.m.   Snack on 1 ounce sharp cheese and/or nuts and fruit, some non-starchy vegetables – marinated cucumbers, celery and carrot sticks, or some whole grain crackers like “Hint of Salt” Triscuits or other fiber-rich cracker. (about 10 g protein)

It generally takes 3 to 4 hours for a meal, including its protein, to be completely digested.  If you take a fourth dose of medication at night, you will need to time the snack accordingly, i.e. have the snack at 2:00 p.m., or put it off until 10:00 p.m., after you have taken your nighttime dose at 9:00 p.m.

Exercise and Parkinson’s disease

by Michael Kleinman, D.O.

mike-kleinmanThe treatment of Parkinson’s disease (PD) is often thought of as just medications, or in advanced cases, surgical treatment. There are in fact many non-medication treatments for PD, and exercise is one of them. Exercise has been shown in studies to improve not only the movement related symptoms, but also many non-motor symptoms of Parkinson’s. Starting an exercise regimen may not seem to be as important when one initially receives a diagnosis of PD as the symptoms are often no more than a minor nuisance at that point. However, getting started early is vital, as it becomes harder to commit to making exercise a routine part of life as one’s condition progresses. Participating in regular exercise can seem daunting to someone who has lived with PD for years. There are many different ways to go about getting exercise and these can be tailored to an individual’s needs and abilities.

Getting Started
Exercise and physical activity are vital to an early treatment regimen in PD. By participating in exercise, one takes an active role in the fight against the disease. It can also give a person with PD a sense of empowerment over the course of their condition. In early stage PD, it is most important to choose an exercise regimen or activity that one will have a high probability of participating in regularly, rather than choosing one specific exercise over another. The ideal regimen will include activities that are enjoyable, and that also help control PD symptoms.

Identifying and addressing barriers to exercise will help overcome the daunting nature of beginning a new fitness regimen. In later stages of PD, one of these major barriers is apathy. Apathy is a troublesome non-motor symptom of PD that involves a lack of motivation and reduction of emotional expression, and can be difficult to treat. In my experience, starting an exercise regimen before apathy becomes problematic may even prevent this symptom from becoming a factor in reducing one’s quality of life.

A referral to a physical therapist experienced with PD is often helpful in getting started with an exercise regimen. Periodically revisiting courses of physical therapy as PD progresses is important in order to customize and adjust one’s exercise program to fit one’s needs and capabilities. Home-based physical therapy programs are also an option for those who have a difficult time adhering to outpatient therapy programs. Exercise classes can be a good way of building social interactions both within and outside the PD community. The care partner also plays a vital role in providing motivation to stay active. Exercising with a family member can have a positive effect on relationships.

Exercise as a Symptomatic Treatment
Numerous research studies have found that various exercise regimens improve many bothersome symptoms of PD, including reducing stiffness, increasing strength, and improving balance, gait and mobility. Research on exercises aimed at improving gait and balance have shown a consistent improvement in balance with a reduction in the number of falls. Exercise has also been shown to improve overall quality of life.

What Types of Exercises are Good for PD?
Although there have been many studies which have demonstrated the positive effects of exercise, there is little data to say that one exercise program is superior to another. In general, a physical activity program that incorporates a variety of movements involving a large range of motion are preferred over performance of a single repetitive exercise. Ideally, an exercise routine would include lighter intensity activities focusing on stretching and balance, as well as higher intensity activities. Some specific examples of exercises for PD include:

  • Brisk walking
  • Aerobics classes
  • Resistance exercises (light weight)
  • Participation in sports
  • Biking
  • Dancing
  • Yoga
  • Tai Chi

Many patients have been referred to participate in the LSVT-BIG program for physical therapy through local outpatient rehabilitation centers. This is an intensive program focusing on promoting high amplitude movements. LSVT-BIG has been shown to improve motor functioning in PD, as well as increase walking speed. We are now fortunate to have practitioners experienced in this program at several different locations throughout Maine. It is very important to remember that performance of the exercises at home after the completion of the course will maximize the likelihood of experiencing a sustained benefit.

The Effects of Exercise on the Non-Motor Aspects of PD
For many patients with PD, the most troublesome symptoms are related to the non-motor aspects of PD. These may include problems with fatigue, constipation, insomnia, anxiety, depression, and cognitive dysfunction. In many cases, medications to address these symptoms are of limited effectiveness, but exercise can help. In one series, patients who started exercise early rather
than later in their illness were found to have fewer symptoms of depression.

Cognitive symptoms, problematic in PD, include slowed processing speed, difficulties with multi-tasking, and impaired decision-making skills. These cognitive domains are referred to as frontal executive functions, impairment of which is seen in a significant number of people with PD, even relatively early on the course of the condition. Research on exercise in PD has shown an improvement in executive function skills, with the effects noted up to six months into treatment.

The Effects of Exercise on the Brain in PD
It is known that the movement symptoms of PD relate to a loss of the dopamine producing cells in a structure called the midbrain. Research has been performed on the effects of exercise on mice treated with a substance that mimics the effects of PD on the human brain. The mice that performed treadmill exercise were found to have lost fewer dopamine producing cells, when compared with the mice that did not perform any exercise. The exact mechanism for this protection of dopamine producing cells is unclear, but is thought to be due to a reduction of inflammation in the brain.

Mice with Parkinsonism were also found to have increased connections with other cells within the movement center of the brain, the basal ganglia, after being exposed to an exercise program. This suggests that exercise can enhance neuroplasticity, the brain’s ability to form new connections and pathways. Studies of the levels of certain substances that are thought to promote neuroplasticity have found an increase in the level of these substances in humans with PD after the completion of exercise.

Structural imaging studies of the brain have also demonstrated positive changes after exercise in people with PD, with increased volumes of certain parts of the brain noted. Similar effects on brain volume have also been seen outside of the PD population in older patients, underscoring the importance of physical activity for overall brain health as we age.

How Much Exercise Should One be Doing?
There is no single number to describe the frequency and duration of exercise that applies to every person with PD. If you are not initially an active person, or you have physical limitations, then it is advised that you start with a shorter duration of exercise and gradually increase with time. Those who are younger or are in the mild stage of PD should be able to tolerate longer durations of exercise and perform higher intensity exercises. For most people with PD, a goal of 30 minutes of exercise 3-4 times a week is achievable. Many experts believe that more intensive programs may confer a higher degree of benefit.

In conclusion, exercise plays a vital role in maximizing one’s functional abilities and quality of life across the spectrum of PD, should be incorporated into the treatment plan at the time of diagnosis, and continued throughout the course of the condition.

REFERENCES

  1. http://www.apdaparkinson.org/uploads/files/BeActive_Feb2008-enw.pdf
  2. Combs SA, Diehl MD, Chrzastowski C, Didrick N, McCoin B, Mox N, Staples WH, Wayman J. Community Based Group Exercise for Persons with Parkinson Disease: A Randomized Controlled Trial. NeuroRehabilitation. 2013;32(1):117-24.
  3. Corcos DM, Robichaud JA, David FJ, Leurgans SE, Vaillancourt DE, Poon C, Rafferty MR, Kohrt WM, Comella CL. A Two Year Randomized Controlled Trial of Progressive Resistance Exercise for Parkinson’s Disease. Mov Disord. 2013;28(9):1230-40.
  4. Da Silva PG, Domingues DD, de Carvalho LA, Allodi S, Correa CL. Neurotrophic Factors in Parkinson’s Disease are Regulated by Exercise: Evidence Based Practice. J Neurol Sci.;363:5-15.
  5. Hirsch MA, Iyer SS, Sanjak M. Exercise-induced neuroplasticity in human Parkinson’s disease: What is the evidence telling us. Parkinsonism Relat Disord. 2016;22 Suppl 1:S78-81.
  6. Reynolds GO, Otto MW, Ellis TD, Cronin-Golomb A. The Therapeutic Potential of Exercise to Improve Mood, Cognition and Sleep in Parkinson’s Disease. Mov Disord. 2016;31(1):23-38.
  7. Shen X, Wong-Yu IS, Mak MK. Effects of Exercise on Falls, Balance, and Gait Ability in Parkinson’s Disease: A Meta-analysis. Neurorehabil Neural Repair. 2016;30(6):512-27.
  8. Shin MS, Jeong HY, An DI, Lee HY, Sung YH. Treadmill Exercise Facilitates Synaptic Plasticity on Dopaminergic Neurons and Fibers in the Mouse Model with Parkinson’s Disease. Neurosci Lett. 2016;621:28-33.

The Neuropsychological Evaluation for Deep Brain Stimulation

by Tom Miller, Ph.D.

 

A neuropsychological evaluation is a method for examining the quality of brain function and for determining a patient’s cognitive strengths and any limitations. It involves several steps:

 

  • a clinical interview to obtain information from the patient and his or her spouse or other family members about daily functioning, details of ongoing problems, and any concerns about cognitive functioning (e.g. problems with attention, memory, mental processing, etc.);
  • obtaining additional background information from medical records and reports, review of any previous testing, and other relevant information;
  • the administration of various tests to examine cognitive functioning in a number of areas, including intellectual abilities, attention, language, learning and memory, visuospatial abilities, sensory-motor functioning, executive function, emotional status, and personality.

These areas of cognition involve different regions of the brain, and a person’s performance on testing can reveal the relative efficiency or impairment in these brain regions.

A neuropsychological evaluation is scheduled before a deep brain stimulation procedure (DBS) for several reasons:

  • to establish of pre-surgical baseline of functioning in these areas of cognition;
    to determine whether there are any difficulties that may be exacerbated by surgery;
  • to determine whether there are any difficulties that may interfere with adjustment after surgery.

DBS involves implanting electrodes into brain regions that regulate attention, aspects of language, and memory retrieval. Parkinson’s disease can contribute to difficulties in these areas of functioning. It is important to determine the extent of any difficulties before making a decision whether to proceed with DBS.

Memory impairment can make it difficult for a patient to follow recommendations and adhere to a medication schedule, and significant memory impairment may indicate early signs of dementia.

It is important to determine whether problems with memory are beyond the ordinary occasional memory lapses that many of us encounter from time to time. Testing is necessary to determine the nature and extent of memory problems: distinguishing between:

  • “ordinary” and occasional lapses of memory (no interference with functioning);
    inefficiencies in memory (may be annoying at times but without much interference);
  • mild memory impairment (difficulties with remembering details of events occurring in recent weeks or months);
  • moderate memory impairment (inability to recall many details of events, conversations, appointments occurring more recently; needing frequent reminders, increasing interference with daily functioning);
  • severe memory impairment (inability to recall information within minutes, requiring multiple repetition of instructions or requests, inability to follow conversation, etc);
  • lapses of attention and memory (difficulties with memory may actually be related to lapses of attention, distractibility, or inability to concentrate effectively).

Memory testing helps to determine whether difficulties are related to initial encoding of new information; the process of storing new information; or the retrieval of information from memory. These stages of memory involve different areas of the brain – and information about performance provides your doctor with information about functioning in specific brain regions.

It is also important to examine emotional status and personality functioning. Acute anxiety or deep depression interferes with thinking, planning, and problem solving. An inability to function effectively in these areas might impair judgment to an extent that the process of managing DBS becomes overly complicated and the advantages of DBS become difficult to see. Personality functioning itself may suffer, and a person may find themselves overly anxious and worried, or without interest or motivation in their lives.

It is possible to master bouts of anxiety or hopelessness by learning and practicing various mental or behavioral strategies – sometimes referred to as cognitive-behavior therapy, or CBT. The use of these tools can help restore emotional balance along with a sense of confidence and ease. If significant emotional distress is a factor, a referral can be made for therapy to help improve overall functioning.

 

Dr. Tom Miller practices at Maine Medical Center Department of Psychiatry, Geriatric Outpatient Psychiatry, 66 Bramhall Street, Portland, ME 04102

Psychosis in Parkinson disease

by Markos Poulopoulos, M.D.

Introduction

James Parkinson, in his pivotal work “An Essay on the Shaking Palsy” (published in 1817), was the first to recognize the condition that later was named after him.

Dr. Poulopoulos practices in Bangor, Maine
Dr. Poulopoulos practices in Bangor, Maine

He defined it as “involuntary tremulous motion, with lessened muscular power, in parts not in action and even when supported; with a propensity to bend the trunk forwards: the senses and intellects being uninjured.” He then noticed that “the sleep becomes much disturbed,” “the bowels, in most cases, demand stimulating medicines of very considerable power,” and “the urine is passed involuntarily; and at the last, constant sleepiness, with slight delirium, and other marks of extreme exhaustion” (1).

Despite his above observations, little attention was given to the non-motor manifestations of Parkinson disease up until the last 10-15 years. For quite a long time, the scientific focus was heavily on the motor symptoms, which are still used for making the diagnosis (tremor, stiffness/rigidity, slowness/bradykinesia and gait instability). One could say that we were only looking at the tip of the iceberg.iceberg3

But there is so much more than the physical symptoms, other difficulties that are far more difficult to deal with and cry for more vigorous research and effective treatment development. Psychosis is perhaps the most problematic and intrusive constellation of symptoms, and the subject of this discussion.

What do we mean by psychosis?

Psychosis in Parkinson disease is defined (2) as the presence of at least one of the following symptoms:

⦁ Illusions – This is when you mistake a real object for something else.

⦁ False sense of presence passage (hallucinations) – This when you think there is somebody behind you, or a vague figure is quickly passing by your side. However, when you turn your head to look at it, there is nothing there.

⦁ Hallucinations – This is when you see (less often hear, smell or feel) people or animals typically in front of you that clearly do not exist, and there is no other real object to be mistaken for what you experience.

⦁ Delusions – This pertains to unusual, disruptive beliefs or ideas, usually of a paranoid nature, e.g. persecution, theft, infidelity.

We need to highlight the importance of early recognition and treatment of even benign aspects such as illusions. There is about an 80% chance for these to progress to more complex and persistent symptoms such as hallucinations and delusions, which in turn can be very difficult to treat and have a significant impact on your life and that of your family. If psychosis gets out of hand, it is usually a reason for nursing home placement, and results in an increased rate of other complications, including decreased survival. For example, one may lose insight and firmly believe that the hallucinations (people or animals) are real, react by attacking them or running away from them, and subsequently fall and break a hip.  These events can lead to a domino effect with potentially serious complications.

Hence, knowing the nature of psychosis will help the doctors, patients, and care givers to ask pertinent questions in search of subtle signs that would otherwise go unnoticed. It is always better to treat early, rather than late.

How frequent is psychosis?

Overall, psychosis can be present in up to 60% of Parkinson disease patients at some point in time. The more fearsome aspect is visual hallucination, which can be present in 7-25% of patients with Parkinson disease. However, if we consider only patients with dementia (so-called Parkinson disease dementia), hallucinations have a frequency from 40 to 80% (3).

Psychosis is more likely to happen when a patient with Parkinson disease also has dementia. However, it is also well documented in patients with Parkinson disease without dementia. In this situation, psychosis can happen in 20% of patients. In more detailed breakdown, frequency of visual hallucinations is about 13%, auditory hallucinations 7%, illusions 7%, and paranoia 5% (4).

Other non-motor manifestations of Parkinson disease that sometimes predict the development of psychosis are REM sleep behavior disorder (acting out the dream content) and depression/ anxiety.

Do medications play a role? Yes and no. 

The answer is yes for most medications, and debatable for carbidopa/levodopa. Although the common practice is to try to reduce the dose or stop medications in hopes of decreasing or stopping the psychosis (see management section), there is evidence that psychosis can happen before the start of any treatment with such medications. It is intriguing that psychosis may happen in up to 40% of drug-naïve patients, as opposed to 5% of individuals without Parkinson disease. In this scenario the good news is that insight is almost always retained, and the type of psychosis is by and large a simple sense of presence or feeling that somebody is passing by (rarely visual hallucination) (5).

What can we do? How can we treat it?

⦁ Knowledge – First of all, knowledge of the nature of psychosis, being able to recognize and communicate its existence without guilt or fear, is paramount and the starting point.

⦁ Search for triggers – The doctor should work with the caregiver and the patient in an attempt to identify potential triggers such as infections, dehydration, insomnia, malnutrition, new medications/dose escalation, home/environmental changes, bereavement, and exacerbation of depression.

⦁ Ideally, a team approach – Behavioral care, case management, and physical, speech, language, and occupational therapy aiming at an individualized treatment plan to relieve distress, provide direction, promote adaptation, and optimize quality of life.

⦁ Decrease or stop medications for Parkinson disease (3) – Typically, we wean off, or at least decrease the usual culprits with first and foremost the dopamine agonists (e.g. pramipexole/Mirapex, ropinirole/Requip), anticholinergics (e.g. trihexyphenidyl/Artane, amantadine), and other medications we may use to treat Parkinson disease. Carbidopa/levodopa (Sinemet) is the last medication that should be decreased, and certainly never stopped. There is no clear evidence that this medication can definitely aggravate psychosis.  Easily said, but it is usually difficult to implement the above, since decreasing anti-Parkinson medications will lead to worsening of the physical performance (tremor, gait, balance, and overall movement).

⦁ Add medications that mitigate or stop psychosis (brand name in parentheses) (3)

⦁ rivastigmine (Exelon):  In a 24-week, prospective, placebo-controlled trial, this medication, designed as a memory enhancer, both improved memory and decreased hallucinations (6).

⦁ quetiapine (Seroquel):  The evidence is rather equivocal in favor of this medication directly improving visual hallucinations based on studies (7).   However, it is widely used in clinical practice with good results based on anecdotal and personal experience. The main reasons are the ease of use and titration, and the favorable side effect profile (compared to all the other antipsychotics, it has the least potential for increased mortality).

⦁ clozapine (Clozaril): This medication has, so far, the best evidence with respect to efficacy reducing visual hallucinations (8).  However, frequent blood draws, the rare but very significant danger of reducing white blood cells that fight infections, frequent drowsiness, weight gain, and dizziness make it not the first choice for most doctors.

New treatment

Pimavanserin (Nuplazid) is the latest medication tested for treatment of visual hallucinations in Parkinson disease.

Based on a 6-week trial (randomized, double-blind, placebo-controlled) on a total of 200 patients (the largest number tested compared with the other medications listed above, apart from the rivastigmine trial), it did produce a statistically significant reduction in hallucinations, improved night time sleep, and decreased daytime sleepiness (9).

Furthermore, pimavanserin did not aggravate the motor symptoms of Parkinson disease and was overall well tolerated, probably better than quetiapine and clozapine, by extrapolation. This is likely due to a pharmacological action that differs from the other antipsychotic medications. All of the others block the various dopamine receptors in the brain and typically worsen Parkinson disease symptoms, since the levodopa (which converts into dopamine in the brain) cannot act on the dopamine receptors because they are occupied (blocked) by the antipsychotics. Pimavanserin does not act on dopamine receptors. Rather, it acts on serotonin receptors (specifically 5-HT2a). Pimavanserin may cause leg swelling (7%), nausea (7%), confusion (6%), and constipation (4%).

The pressing need for better treatments for psychosis in Parkinson disease led to FDA discussion for early approval on May 1, 2016

In conclusion, it is very important for patients and caregivers to report to the doctor symptoms in keeping with psychosis, so that we can search for triggers (as mentioned above), monitor symptom evolution and prevent/treat, if possible.

References 
1. James Parkinson.  An Essay on the Shaking Palsy. Neuropsychiatric classics. 1817.

2. Bernard Ravina et al. Diagnostic Criteria for Psychosis in Parkinson’s Disease: Report of an NINDS, NIMH Work Group. Movement Disorders, Vol. 22, No. 8, 2007, pp. 1061–1068.

3. Dag Aarsland et al. Psychiatric issues in cognitive impairment. Movement Disorders, Vol. 29, No. 5, 2014. Pages: 651-662.

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The role of the speech pathologist in the treatment of speech, voice, and swallowing disorders associated with PD

by Yonca Berk-Giray, SLP

Eighty-nine percent of individuals with PD have speech and voice difficulties at the onset of the disease. As the disease progresses, this number rises to 100%. Most individuals with PD also experience varying degrees of swallowing difficulties.

Speech and voice difficulties are often overlooked by the patients and their physicians until the problem becomes severe enough that communication is affected. Many patients with PD experience difficulty socializing and being understood by others, and feel left out of conversations. Individuals experience decreases in vocal loudness levels, speech intelligibility, expression in their

speech and voice, and facial expression, as well as hoarse voice quality. Since these changes happen slowly over many years, most patients are not aware of them. Often it is their loved ones who first become aware of the communication issues.

Lee Silverman Voice Therapy (LSVT) is a voice and speech therapy program that is specifically designed for treating individuals with PD. It has been scientifically researched for the past 25 years and proven to be effective in treating voice, speech and communication difficulties associated with PD. LSVT follows a standardized treatment protocol that is customized to the needs of the individual. Mid Coast Rehabilitation Services currently has two clinicians who are certified in delivering this program. For those patients who are homebound, the therapy is also available through certified clinicians at CHANS home health services. For more information on LSVT Loud, and a list of certified clinicians, please see www.LSVTGlobal.com.

Swallowing difficulties associated with PD are much more subtle at the onset of disease, and can become serious and life threating as the disease progresses. Patients usually complain of drooling, foods getting stuck in the cheeks or throat, coughing with liquids or solids during meals, and difficulty taking their pills. Two main concerns with swallowing difficulties are the risk of aspiration related pneumonia and weight loss. Recognizing early signs of swallowing difficulties, and receiving treatment for them, is very important in staying ahead of the muscle atrophy that can happen. There are various methods and treatments available that are proven to be effective in treating swallowing difficulties in PD. See a physician or speech pathologist for more information.

It is important and strongly recommended that patients are proactive in receiving treatment early for speech, voice and swallowing difficulties to maximize their functioning for years to come.