Medications to Avoid or Use with Caution in Parkinson’s

The St. Louis APDA (American Parkinson Disease Association) Information & Referral Center, based at Washington University School of Medicine, recently published some wallet cards for medications to avoid or use with caution in those with Parkinson’s patients. Many of these same medications should be avoided or used with caution by those with Lewy body dementia and other atypical parkinsonism disorders.

As we aren’t sure how you can obtain these wallet cards, we thought we’d share the content here. It looks like these wallet cards were originally created by the Indiana Parkinson Center for Care.

The issues with some these medications are explained in four slides of this presentation by Johanna Hartlein, RN, clinical research coordinator/nurse practitioner, at Washington University:

https://d2icp22po6iej.cloudfront.net/wp-content/uploads/2017/08/PD_talk_caregivers_med_on_time_2017.pdf (see pages 50-53)

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Here’s the content of the wallet card:

Medications NOT TO BE USED by PD patients:
* Haloperidol (Haldol)
* Chlorpromazine (Thorazine)
* Thioridazine (Mellaril)
* Molindone (Moban)
* Perphenazine (Trilafon)
* Perpenzatine
* Thiothixne (Navane)
* Flufenzaine (Prolixin)
* Risperdal (Risperidone)
* Zyprexa (Olanzapine)
* Geodon (Ziprasidone)
* Abilify (Aripiprazole)
* Promethazine/Phenergan
* Prochlorperazine (Compazine)
* Trimethobenzamind Hydrochloride (Tigan)
* Metoclopramide (Reglan)

Medications TO BE USED WITH CAUTION in PD patients:
* Benzodiazepines: These are medications sometimes used for anxiety and sleep like Alprazolam (Xanas), Lorazepam (Ativan), Chlordiazepoxide (Librium), or Clonazepam (Klonopin). At low doses, these are sometimes very successful at treatmingREM sleep behavior disorder (thrashing around in one’s sleep/acting out in one’s dreams); however, they must still be used with caution.
* Dextromethorphan (DXM): commonly found in many cough and cold medicines. Many patients use this without any problem but still should use caution.
* Benadryl (Diphenhydramine): commonly found in many cough and cold medicines. Many patients use this without any problem but still should use caution.
* Narcotics: These are medicines used for pain like Hydrocodone, Hydromorphine (Dilauded), Meperidine (Demerol), Oxycodone (Oxycontin).
* Muscle Relaxers: These are medicines commonly used for pain or for strained muscles and may include Lorcet or Lortab, Percocet, or Darvocet.

These medications can worsen cognition and balance, particularly in elderly PD patients or PD patients with pre-existing thinking problems.

Aug 2017 Parkinson’s Support Group Mtgs – Guest Speakers – NorCal + Central CA

Here’s a list of guest speakers at many Northern California and Central California Parkinson’s Disease (PD) support group meetings for August 2017.

With my Brain Support Network atypical parkinsonism (DLB, PSP, MSA, CBD) hat on, these meetings are especially appealing to me (because of the guest speakers or topics) BUT remember that these are PD support group meetings:

* Visalia, Friday, 8/4 – Movement disorder specialist Jeri Williams, MD, will be speaking about psychosis (hallucinations and delusions) in Parkinson’s Disease. This talk certainly applies to Lewy Body Dementia. Note that this talk is sponsored by a pharmaceutical company.

* Palo Alto/Avenidas, Wednesday, 8/9 – A great speaker from Home Instead Senior Care will be addressing senior care options, hiring in-home aides, and best practices at home (protecting yourself and your belongings). There is nothing Parkinson’s-specific about this talk. And it’s not a sales pitch.

* Santa Rosa, Saturday, 8/12 – Movement disorder specialist Maya Katz, MD, will focus on hospitalization and drug interactions.

* Yuba City, Monday, 8/14 – A speech therapist will speak about communication and swallowing issues in PD

* Auburn, Tuesday, 8/15 – A clinical psychologist will be addressing sleep issues and insomnia management in PD

* Walnut Creek, Saturday, 8/19 – A panel talks about medical marijuana and PD. Certainly this talk applies to our community.

* Fremont, Monday, 8/28 – A physical therapist discusses physical therapy for PD

Generally, I recommend driving no more than 30 minutes to attend any of these meetings. If you attend a meeting and learn anything, please share with me so that I can share with others!

Do you need to know the support group meeting location, day/time, contact info, and how to RSVP if required? Please refer to the Stanford Parkinson’s website for all Northern and Central California support groups:

parkinsons.stanford.edu/support_groups.html

As always, I’ve deleted the deep brain stimulation-related talks.

Robin
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Placerville
Tuesday, 8/1, 1:30-3pm
Discussion Topic: What special attention is needed by those with PD while traveling to/from holiday vacations and events
RSVP?: No.

 

San Jose/Willow Glen
Friday, 8/4, 10am-noon (speaker starts about 10:20am)
Guest Speaker: Laurice Yang, MD, movement disorder specialist, Stanford Neurology
Topic: Updates in PD treatment
RSVP?: No.

Visalia
Friday, 8/4, 10:30am-noon
Guest Speaker: Jeri Williams, MD, movement disorder specialist, private practice, Bakersfield
Topic: Treating psychosis in PD
RSVP?: No.

Bakersfield
Tuesday, 8/8, 2-4pm
Guest Speaker: Betsy Koznin, RN
Topic: Apokyn
RSVP?: Yes to group leaders Linda Feist, 661-304-9227, or Bill Burgemaster, 661-343-2707

Pacific Grove (Monterey County)
Tuesday, 8/8, 3-4:30pm
Guest Speaker: Henry Marquez
Topic: ADA compliant model
RSVP?: No.

Palo Alto Young Onset Parkinson’s
Tuesday, 8/8, 6:30-8pm
Guest Speaker: Katie Parafinczuk, DPT, physical therapist, Kaiser Redwood City, and PD exercise instructor
Topic: Parkinson’s exercise
RSVP?: Yes, if this is your first time attending. Please RSVSP to Martha Gardner, group leader, [email protected], by August 7th.

Palo Alto/Avenidas
Wednesday, 8/9, 2-3:30pm
Main Speaker: Nikki Hochhauser, Home Instead Senior Care, Peninsula
Topics: Senior care options, hiring in-home aides, and best practices at home (protecting yourself and your belongings)
RSVP?: No.

Sonoma/Vintage House
Thursday, 8/10, 10-11am
Guest Speaker: Colleen Fisher, National Parkinson Foundation, Bay Area
Topic: Community programs and resources
RSVP?: No.

Stockton
Thursday, 8/10, 1:30-3pm
Discussion Topics: How are your medications working for you? What do you need to tell the doctor?
RSVP?: No.

Los Altos Young Parkinson’s
Saturday, 8/12, 10am-noon
Guest Speaker: Aura Oslapas
Topic: Application under development for those with PD
RSVP?: No.

Santa Rosa (Sonoma County)
Saturday, 8/12, 1-3:15pm (speaker from 1-2pm)
Guest Speaker: Maya Katz, MD, movement disorder specialist, UCSF and San Francisco VA
Topics: Hospitalization and drug interactions
RSVP?: No.

Yuba City (Tri-Counties)
Monday, 8/14, 1-2pm
Guest Speaker: Amber Smith, SLP, speech therapist, Fountains Skilled Nursing Facility
Topic: Communication and swallowing issues in PD
RSVP?: No.

Gilroy
Monday, 8/14, noon-1:30pm
Program: Panel of group members discussing various stages of PD
RSVP?: No.

Lincoln
Tuesday, 8/15, 10-11am
Guest Speaker: Tuan Nguyen, pharmacist, Lincoln Pharmacy
Topics: Medications and interactions for those with PD
RSVP?: No.

Auburn
Tuesday, 8/15, 1:30-3pm
Guest Speaker: Eric Egli, PhD, clinical psychologist, Roseville
Topics: Sleep issues and insomnia management in PD
RSVP?: No.

Hollister
Friday, 8/18, 1:30-3:30pm
Discussion Topic: Importance of water in PD
RSVP?: No.

Walnut Creek (Mt. Diablo)
Saturday, 8/19, 9am-noon (panel 10:45am-11:45am)
Panelists: Eloise Theisen, RN, founder, Green Health Consultants, and Rebecca and Tim Byers, co-founders, Agathist Collective
Topic: Medical marijuana and PD
RSVP?: No.

Fremont
Monday, 8/28, 7-9:30pm
Guest Speaker: Priti Chitale, PT, physical therapist, Kaiser San Leandro
Topic: Physical therapy for PD
RSVP?: No.

 

Lewy body dementia excerpts from curriculum on dementia for healthcare professionals

Someone in our local support group recently sent me this link to US Dept. of Health and Human Services’s curriculum for physicians (especially primary care physicians) and healthcare professionals (social workers, psychologists, pharmacists, emergency department staffs, dentists, etc.) on dementia. Though the web address includes the term “Alzheimer’s,” Lewy body dementia is well-covered in this curriculum:

Training Curriculum: Alzheimer’s Disease and Related Dementias
Health Resources and Services Administration (part of Dept of HHS)
bhw.hrsa.gov/grants/geriatrics/alzheimers-curriculum

Here are some excerpts on Lewy body dementia.

Robin

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Overview of Mild Cognitive Impairment and Dementia for an Interprofessional Team (Module 1)

LBD Overview: Dementia with Lewy Bodies and Parkinson’s Disease Dementia
* Lewy body dementia (LBD) covers 2 related conditions—dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD).
* The defining features of LBD include motor Parkinsonism and cognitive impairments.
* Timing of dementia onset distinguishes between DLB and PDD.
* Diagnosis of LBD is challenging, even among experts.
* LBD, Parkinson’s disease (PD), and AD have many genetic similarities.
– However, differences in phenotypes have clinical implications.
– Location of Lewy bodies also influences disease manifestations.

LBD: Prevalence and Demographics
* Prevalence estimated at 1.3 million cases of LBD in the United States.
* Reportedly high number of underdiagnosed and frequently misdiagnosed cases.
* Difficult to estimate prevalence of DLB separately from PDD.
* Affects up to 5% of elderly people and up to 30% of all dementia cases.

DLB: Incidence and Prevalence
* Accounts for 4.2% of all community-diagnosed dementia, with incidence of 3.8% of new dementia cases.
* Affects more men than women and increases in incidence with age.
* Affects people at a younger age than does PDD.

PDD: Incidence and Prevalence
* PD affects about 1 million Americans.
* The percentage of people with PDD increases with increasing duration of PD. Approximately 80% of patients with PD will eventually develop PDD.
* 15–20% of persons with PD have MCI, which is associated with a poor quality of life and more severe motor symptoms.
* PD incidence increases with age.
* PD rates differ among different races.
* Incidence of PD is higher in specific ethnicities—Asians, Europeans, North Africans, North and South Americans—but highest among Ashkenazi Jews.

LBD/PDD Risk Factors
* In general, there are few risk factors for LBD: Male, older than age 60, and possible genetic predisposition.
* An important risk factor for PDD is duration of PD. Probability of developing PDD is approximately 80% with extended time since PD diagnosis.
* Other (nonspecific) risk factors for PDD include “atypical” Parkinsonian features, specific medical problems, non-motor symptoms, and rapid eye movement (REM) sleep behavior disorder (RBD).

LBD Symptoms
* The defining features of LBD include motor Parkinsonism and cognitive impairments.
* Clinical manifestations of DLB and PDD are initially different but become more similar as the disease progresses.
* Comparison of DLB versus AD found some similarities and numerous differences.
* Hallmark symptoms in early-stage PDD are movement related and also include:
– Cognitive impairments
– RBD, visuoperceptual changes, and depression
– However, memory intact throughout most of the stages of PDD.
* Greater impairments are associated with DLB than with PDD.

LBD Progression and Mortality
* The prodromal stage is characterized by dysautonomia, olfactory dysfunction, RBD, and psychiatric symptoms that are apparent years before onset of dementia (possibly decades earlier with DLB).
* Far less is known regarding progression of LBD compared with knowledge on Alzheimer’s disease. The Lewy Body Disease Association (LBDA) estimates an average duration of 5 to 7 years, with a range from 2 to 20 years.
* Survival time is shorter in DLB compared with Alzheimer’s disease.
* Men with DLB have increased mortality versus men with AD.


Diagnosing Dementia (Module 2)

Diagnosing Lewy Body Dementias (LBD)
* LBD syndromes include DLB and PDD. Both are aging-related dementias.
* Major distinction between DLB and PDD is the temporal sequence of appearance of clinical symptoms.
– DLB if dementia within 1 year after Parkinsonian symptoms
– PDD if dementia years after PD diagnosed/Parkinsonian symptoms

Distinguishing Between Lewy Body Dementias (LBD) and Alzheimer’s Disease
* Memory impairment not prominent feature of early LBD.
* Similar manifestations between LBD and late-stage AD
* DLB has similar mean age of onset as AD (around age 68) but PD has earlier onset.
* DLB has more rapid course of progression than AD or other dementias.


Understanding Early-Stage Dementia for an Interprofessional Team (Module 5)

Early-Stage Lewy Body Dementia (LBD): Overview
* LBD encompasses dementia with Lewy bodies (DLB) and Parkinson’s Disease Dementia (PDD).
* Defining features of LBD include motor Parkinsonism and cognitive impairments .
* DLB and PDD share many clinical and pathological similarities and are sometimes considered as different points on a spectrum.
– PDD is characterized by a period of pure motor symptoms first; cognitive symptoms develop more than a year after onset of movement problems.
– DLB occurs in older adults with Parkinsonism who develop dementia/cognitive symptoms within 1 year of motor symptoms and is often associated with a more severe course than PDD.
* LBD rate of decline is much faster and its survival time is shorter compared with AD.
* Greater impairments are associated with DLB than with PDD.

Early-Stage LBD: Clinical Manifestations
* Marked attentional and executive function disorders are present in LBD with significant cognitive fluctuations.
* Rapid eye movement (REM) behavioral disorder (RBD) is a sleep difficulty predominantly associated with LBD.
* Mild cognitive impairment (MCI) is present at the time of PD diagnosis in about one-third of individuals and in approximately half of all older adults afflicted with nondemented Parkinson’s disease after 5 years.
* Hallucinations are among the most common core features of DLB prior to the initial evaluation, followed by Parkinsonism and cognitive fluctuations.

LBD Versus Alzheimer’s Disease
LBD and Alzheimer’s disease have some similarities and numerous differences. Compared with persons with Alzheimer’s disease, persons with LBD are:
* More likely to have psychiatric symptoms and more functional impairments at time of diagnosis.
* More likely to have sleep disturbances, cognitive fluctuations, well-formed visual hallucinations, and muscle rigidity or Parkinsonian movement problems early in the disease.
* Likely to have pronounced visuospatial impairments in LBD that appear earlier in the disease course.
* More likely to have memory remains intact throughout most of the stages of PDD and LBD.
* More likely to have nonmotor behavioral symptoms.

General Strategies for Managing Behavioral and Psychological Symptoms of Dementia (BPSD)
* Patient engagement: contributes to greater sense of well-being
* Physical activity: can improve cognitive thinking, physical fitness, and mood; promising evidence that physical activity programs may improve ability to perform activities of daily living
* Communication: allow person living with dementia sufficient time to respond; use simple commands; use a calm voice; avoid harsh tones and negative words; offer no more than two simple choices; help person find appropriate words for self-expression; lightly touch the person to provide reassurance if upset
* Cognitive stimulation: evidence of some benefit to persons with early- to middle-stage dementia; stimulate thinking, concentration, and memory in social settings. Reminiscence therapy.
* Sensory stimulation: music therapy; white noise; art/craft therapy; bright light therapy
* Environmental changes: remove clutter; use labels and visual cues (signs, arrows pointing to bathroom)
* Task simplification: break tasks into simple sets; use cues (verbal, tactile) or prompts at each stage; create structured daily routines.
* Other interventions being investigated include animal-assisted therapies, massage, reflexology, herbal supplements, etc.

Understanding the Middle Stage of Dementia for the Interprofessional Team (Module 6)

Middle-Stage Lewy Body Dementia (LBD): Including DLB and PDD
* Cognitive deterioration less consistent versus Alzheimer’s disease.
* Manifestations: Impaired thinking; Parkinsonian movement impairments; Visual hallucinations; Deterioration of language skills; Sleep disorders; Behavioral/mood symptoms; Alterations in autonomic body functions

Behavioral and Psychological Symptoms of Dementia (BPSD)
* Common symptoms include mood disorders, sleep disorders, psychotic symptoms, and agitation.
* These are predominantly caused by progressive damage to brain.

The DICE (describe, investigate, create, evaluate) Approach
(see slides)

Sleep Disorders: LBD
* Sleep disturbances affect up to 90% persons with LBD.
* REM sleep behavior disorder (RBD): Is suggestive of LBD. Is predictive for neurodegeneration in Parkinson’s disease. May precede dementia and worsen prognosis.
* People with Parkinson’s disease may experience excessive daytime sleepiness.
* People with Parkinson’s disease‒MCI (mild cognitive impairment) have poorer sleep efficiency and more nontremor features of Parkinson’s disease.

Treating Sleep Disorders in Dementia
* Nonpharmacologic interventions:
– Sleep hygiene
– Sleep restriction therapy
– Cognitive behavioral therapy
– Light therapy
– Continuous positive airway pressure therapy (CPAP) for sleep apnea (OSA)
* Melatonin/melatonin agonists
* Medications (especially sedative-hypnotics or antipsychotics) can have significant adverse effects.

Psychotic Symptoms
* Psychotic symptoms: More prevalent in PLwD during the middle-and later stages of dementia.
* Delusions: False beliefs that persist despite consistent evidence to the contrary. Generally simple and nonbizarre.
* Hallucinations: Sensory experiences that cannot be verified by anyone except the person experiencing them.
* Most commonly visual or auditory in dementia.

Palliative and End-of-Life Care for Persons Living with Dementia (Module 12)

Behavioral and Psychological Symptoms of End-Stage Dementia
* Behavioral and psychological symptoms of dementia may become more prominent in advanced dementia.
* New onset or acute behavioral problems are usually indicative of a new problem.
* Agitation requires prompt attention and evaluation; management should begin with nonpharmacologic interventions.
* PLwD should be assessed for sleep problems, delirium, and pain.

 

Apathy – description and treatment

Brain Support Network volunteer Denise Dagan came across this article in a recent Parkinson’s Disease (PD) organization’s newsletter about apathy in PD.  Certainly apathy occurs in many of the disorders in the Brain Support Network community as well — especially progressive supranuclear palsy (PSP).  That’s why I’m sharing the article within our network.

These statements in the article caught Denise’s eye:

“Persons with apathy generally do not recognize the symptoms, so caregivers will need to bring it to medical attention. … It is important to assess for apathy because those with apathy are 2.5 times more likely to report poor quality of life in comparison to those without apathy. Apathy is also associated with more severe motor impairment. PD patients with apathy are less physically active and may not adhere to medical recommendations. Relationships may suffer as well since caregivers often experience more frustration and stress.”

The author of the article is Rosa Chuang, MD.  She may be familiar to some in our multiple system atrophy (MSA) group.  She used to practice at Stanford but is now in Seattle.

The article is copied below.

Robin

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www.apdaparkinson.org/community/northwest/about/newsletters/

Apathy in Parkinson’s Disease
Parkinson’s Pathfinder (Newsletter by APDA Northwest)
Summer 2017
By Dr. Rosalind Chuang

Apathy is a common non-motor symptom of Parkinson’s disease but often times not recognized or commonly mistaken for depression. Some studies show that 30-40% of PD patients have apathy, but the frequency can range from 20-70%, depending on how patients are asked. It can occur at any stage of PD and can even occur before motor symptoms develop. It is important to assess for apathy because those with apathy are 2.5 times more likely to report poor quality of life in comparison to those without apathy. Apathy is also associated with more severe motor impairment. PD patients with apathy are less physically active and may not adhere to medical recommendations. Relationships may suffer as well since caregivers often experience more frustration and stress.

WHAT IS APATHY?

Apathy is defined as:
• Loss of motivation or lack of initiative
• Loss of pleasure
• Decreased goal directed behaviors
• Decreased goal directed cognitive activity
• Decreased interests and emotions (reduced display of emotions)

WHAT TO LOOK FOR IF YOU ARE CONCERNED ABOUT APATHY

A common complaint from family and friends is that the PD patient just “sits around” or “doesn’t seem to care about anything.” Nothing gets done and a person often declines social activities if given a choice. This can be misinterpreted as fatigue, laziness, or lack of empathy/ uncaring.

Persons with apathy generally do not recognize the symptoms, so caregivers will need to bring it to medical attention. Medical providers may ask specific questions from the Starkstein apathy scale to determine apathy. Some questions on the scale include:

• Any interest in learning new things?
• Does anything interest you?
• Do you look for things to do?
• Are you concerned about your condition? Or unconcerned about many things?
• Does someone have to tell you what to do each day? Do you need a push to get started on things?
• Are you neither happy nor sad, just in between?

As you can see, these questions are similar to those to assess for depression, so sometimes it can be difficult to separate apathy from depression. Often times, patients can have both depression and apathy, but in ~10- 28% of time, patients can have apathy alone.

WHY IS IT NOT DEPRESSION?

In both depression and apathy, a person may no longer enjoy things. However, someone with depression may endorse feeling “blue” or sad. Other “negative” symptoms of depression include inappropriate guilt, loss of appetite, loss of sleep, or thoughts of death. An apathetic person does not cry frequently or have suicidal thoughts.

TREATMENT

It is important to evaluate if the symptoms are from apathy alone because it can affect treatment. If apathy is associated with depression or anxiety, treatment of co-morbid conditions can help reduce apathy. Sometimes isolated apathy can also respond to the SSRIs used to treat depression, but generally studies don’t show good response. Dopamine medications (levodopa or dopamine agonists) may also improve apathy. (In some patient who have undergone deep brain stimulation for PD, rapid withdrawal of their PD medications resulted in apathy.) In one trial, PD apathy responded to rivastigmine, a medication used for dementia, even though the patients did not actually have dementia.

For isolated apathy, I generally recommend non-pharmacologic treatment. These include:

• Write down at least 3 daily goals and 3 weekly goals. These goals can be physical, social, or thinking activities.
• Daily goals should be specific and can be reasonably achieved.
• Create a schedule: be specific when each task will should be accomplished.
• Review the written list at breakfast, lunch and dinner to remind yourself of the next goal.
• Cross off each task as you complete them.
• Say “yes” to at least one thing every day even if you don’t feel like it.
• Maintain routine: continue to do things you used to do, even if you don’t feel like it.
• Recall an activity that you used to enjoy and try to restart that activity.
• Exercise even if you don’t feel like it.
• Must leave the house at least once a day

Even though apathy is not as easily treated as the motor symptoms of PD or other non-motor symptoms such as depression, simply recognizing and understanding apathy is an important part of overall management of Parkinson’s disease.

‘Mom, I didn’t steal your dentures’: Coping when dementia turns to delusion

What a wonderful title for a newspaper article!

This article is about the hallucinations and delusions occurring in the context of dementia. The article specifically mentions Lewy body dementia but note that hallucinations and delusions can occur in moderate to severe Alzheimer’s Disease. (As you may know, the ONLY way at present to confirm a diagnosis is through brain donation. Let Brain Support Network help you make those advance arrangements for your loved one.)

In the article, a nurse gives four tips for managing problems:

* Maintaining social contact
* Good sleep hygiene
* Music to soothe agitation
* Providing choice

Here’s a link to the article:

www.philly.com/philly/health/health-news/mom-i-didnt-steal-coping-when-dementia-turns-to-delusion-alzheimers-psychosis-depression-20170709.html

Health
‘Mom, I didn’t steal your dentures’: Coping when dementia turns to delusion
by Stacey Burling, Staff Writer
Updated: July 6, 2017 — 11:02 am EDT
The Philadelphia Inquirer

Robin