“PD and Psychosis” – Q&A Webinar Notes

Northwest Parkinson’s Foundation (nwpf.org) hosts a webinar series.  Today (Dec 4, 2017), the webinar was about “PD and Psychosis.”  It was an open-ended question-and-answer session.  The “answerer” of the questions was Amanda Herges, PhD, a licensed clinical psychologist specializing in rehabilitation and neuropsychology at Evergreenhealth Medical Center in Kirkland, WA.  She answered questions emailed to the organizers in advance and live on these topics — anxiety, memory loss, cognitive changes, aggression, hallucinations and delusions in those with Parkinson’s Disease.

Brain Support Network volunteer Denise Dagan took notes and shared them below.


Northwest Parkinson’s Foundation
Webinar – PD and Psychosis
December 4, 2017
Guest:  Amanda Herges, PhD, clinical neurologist

Q. Man with Parkinson’s (PD) has periods of intense anxiety.

A. It is related to some of the pathways related to psychosis, and is a typical PD symptom.  25-50% of those w/PD will have anxiety as a symptom.  It is more common in those who had mood issues before their PD diagnosis.  Most commonly patients will report increase of anxiety as their Parkinson’s medication  wears off between dosing, or while navigating in public, especially approaching a narrowing of their pathway, like going through doorways.  Dr. Herges recommends tracking these symptoms, like you do your PD symptoms (time, situation, when were last medications, etc.) and talk with your neurologist if it is affecting your lifestyle.  A therapist can help you learn to live with anxiety, too.

Q. Women with PD noticed short term memory deficit.  How can I live with this?

A. One-third of those w/PD will notice short term memory loss at some point.  Short term memory issues in PD are very different from short term memory issues in Alzheimer’s.  Dr. Herges suggests using electronic devices to help remember things.  If you don’t use electronics, keep a calendar, use notebooks, post-its, etc. to keep track of things.  Do one thing at t time.  Attention problems are also common in PD, so it is easy to become distracted.  Keep distractions to a minimum.  Ask friends and family to help you remember and/or stay on task.

Q. Man asks if PD progression can be projected from a series of MRIs taken over time?

A. MRI doesn’t show PD pathology.  Your neurologist may use a PET scan to image PD.  Taking images over time is not recommended.  They don’t show progression and they are expensive.  Clinical exam is a better assessment for physical symptoms.  Repeated neuropsychological testing will show cognitive decline.

Q. Man asks what is punding and how are its symptoms controlled.  Can this behavior be modified by medication?

A. Punding is repetitive sorting of materials.  Often goes unnoticed if it is related to a long time hobby.  Example: cutting pictures out of magazines and used to use them for art projects, but no longer uses them, just obsessive about cutting them out and sorting them.

Punding can be controlled with medication, but if the behavior is not harmful or interfering with quality of life, medication is not necessary.  The more medications you take, the more the likelihood of adverse medication interactions or medication mistakes so sometimes it is better to manage behavior without medications.  Talk with your doctor about your individual situation.

Q. How are hallucinations impacted by PD medications?

A. Early in PD if you have hallucinations or illusions (peripheral fleeting impression of bugs, shadows out of the corner of your eye, etc.), they can be caused by Sinemet, Requip or Mirapax.  Recent research shows most hallucinations or illusions cannot be accounted for by medications.  True hallucinations usually occur later in progression of PD or the diagnosis is not PD, but Lewy Body Dementia (LBD).

Q. Woman asks if memory loss always comes with cognitive decline?

A. Depends on what you are calling cognitive decline.  Most people become concerned, when they have a memory change, that it will be precipitous.  Memory change can be disease progression but there are many causes of memory change, including changes in medications that cause sleepiness or fatigue which affects memory.  Illness, even just a cold, or dehydration, and loss of sleep can all cause memory loss.  Thyroid issues, low vitamin B12, depression can also affect memory.  Talk with your doctor whenever you have memory loss.

Q. Woman’s mom has had PD for 10 years and recently is having hallucinations (mostly animals) and long-term memory issues/delusion (believing her dead father was coming to Thanksgiving dinner).

A. With respect to her hallucinations, regardless of the cause, always discuss with your neurologist to determine the impact of your PD meds on the hallucinations.  An adjustment to your meds should help, but it is a process of rebalancing your medications vs symptoms control.  Adding an atypical antipsychotic (Seroquel, Quetiapine) can help treat hallucinations.

Also try changing your home environment:
– Keep rooms well lit, especially in the late afternoon and into the evening so shadows don’t contribute to frequency of hallucinations.
– Let the person having hallucinations keep a flashlight handy at night so they can take a look to see if there is really something there in the dark.
– Reduce patterned fabric in upholstery and artwork.  Prints and patterns contribute to visual discrepancies which can increase frequency of hallucinations.
– Cover mirrors or other reflective surfaces that can cause visual distortions and increase frequency of hallucinations.

With respect to her delusions or serious memory impairment (forgetting father died), it depends on the emotional state of the person with PD or LBD.  Challenging memory impairment can cause more stress and depression.  Sometimes, it is best to ignore these types of comments.

Q. A person with PD since 2006 and taking Sinemet is hallucinating.

A. Talk to your neurologist because it was thought hallucinations were part of taking carbidopa/levodopa, but only your neurologist can tell what’s going on with you.  See the prior answer for living with hallucinations.

Q. What is the difference between hallucinations and delusions?

A. Hallucinations is visual disturbance caused by changes in the chemistry and function of the brain.  In PD it is usually visual, sometimes people who speak, so that’s also auditory.  Usually they see nonthreatening people or animals.

Delusions are beliefs that have no basis in fact.  Sometime they are difficult to detect because they are not completely implausible.  Person experiencing the delusion is often persistent in their belief.  Delusions can be paranoia over finances, especially in those who have been business people, or money handlers (head of household, etc.).  A delusion can be a belief their spouse is having an affair or that they are being persecuted (trying to put me in a home).  Hyper-religeousity, compulsive spending or donating, gambling, etc. can also stem from delusions.

Dr. Herges recommends not trying to handle delusions on your own when they begin to affect quality of life, especially loss of trust, or finances in the family.

Q. Please describe a neuropsychological evaluation.

A. Assessment or evaluation is performed by a PhD with training in PD.  They use standardized tests to see how well you perform on memory, attention, processing speed, executive functioning against normal controls of the same age.  The test determines your strengths and weaknesses on these skills and the doctor makes recommendations for functioning with your unique skills and deficits.

These assessments are required pre-DBS surgery.  DBS is contra-indicated in situations where the DBS candidate already suffers severe cognitive deficits because DBS can worsen cognition and make it more difficult to function.

Assessment may also include mood and depressive symptoms, hallucinations, delusions, etc., if applicable.

Patients fill out a questionnaire beforehand, followed by 1-1.5 hour interview of the patient and caregiver by the doctor, then the standardized testing with breaks so exhaustion doesn’t impact performance on the test.  Testing could be broken into more than one day.  Afterward, Dr. Herges scores all tests, writes up a report of her findings and asks the patient back for a review of that report and shares recommendations for living well with deficits and suggestions for playing on strengths.

Q. Man asks if Dr. Herges sees increased aggression in those with PD and meds to help with this?

A. No, people w/PD have the opposite of aggression.  They are more likely to experience apathy (lack of initiation and the brain’s inability to start moving).

Aggression is more likely in those who have hallucinations and/or delusions with cognitive impairment, loss of insight, investment in their delusions, and loss of impulsive behaviors.
Talk to your neurologist if you are experiencing aggressive behavior to see what can be done for everyone’s safety.

If you are in a rural area where your neurologist is more of a generalist than a Parkinson’s specialist, you may be referred to a psychiatrist.  If so, make sure your neurologist, psychiatrist and pharmacist are communicating about medications prescribed for these behaviors.

Q. Suggestions for when delusions are causing agitation to the point of threatening safety?

A. 911 or your local crisis service (contact your police department for the contact number).

Stop engaging them immediately and call for help if someone becomes violent.  Before they are discharged from custody a plan will be put in place to ensure everyone’s safety.  Counseling to redevelop trust among family members may be necessary.  Sometimes, the person cannot return to the same environment if safety cannot be ensured.

Q. Are neuropsychologist evaluations covered by Medicare?

A. Yes, if it is deemed medically necessary and prescribed by a doctor for memory loss or cognitive disorder it will be covered.  If your doctor orders it to determine your ability to work, for example, it will not be covered.

Other insurances (not Medicare) are totally determined by what policy you have.  Most insurances cover at least a limited number of visits and the doctor needs to fit an evaluation and treatment into that maximum number of visits covered by your policy.  These evaluations/assessments are quite expensive to find out after the fact that you are not covered, or your coverage is limited to 75% vs 90%.  You should speak with your insurance carrier to see how much they cover before seeking an assessment.

Q. Man says hot weather affects his cognition (light headed, confused, easily distracted).

A. Usually Dr. Herges hears hot weather affecting MS, not PD.  She recommends monitoring your hydration in hot weather because dehydration can cause these symptoms.  Tell your doctor about these symptoms and, possibly, do a medication review with the doctor.

[Editor’s note:  Dr. Herges is not well-informed on the issues of hot weather affecting those with PD and LBD.]

Q. Which dopamine agonist does not cause compulsive behavior?

A. They all carry a risk for compulsive behavior.  Usually the issue is the dose.

Ask yourself and discuss with your neurologist if you are getting adequate benefit vs. compulsive behavior (eating).

Try changing to another medication or different dose.  It’s all very individual.  Just keep trying until you find the right balance.

If you really fail in finding a medication balance, you may benefit from neuropsychological counseling to learn behaviors to control the compulsive eating (or other compulsive behaviors).

“Challenges, Changes, and Choices: Caregiving for People with Movement Disorders”

Sorry you haven’t heard from me in awhile. Those in the PSP and CBD groups know that we had a major conference for about 150 people in the San Francisco Bay Area at the end of October. Since then, we’ve been handling an average of two brain donations each week. So this has kept me and uber-volunteer Denise Dagan very busy. Am finally getting back into the swing of things with tonight’s post.

Denise attended the webcast of the 2017 National Caregiving Conference in early November. She is now catching up on the notes she took from the various sessions she attended.

One of the sessions she attended was on the challenges of Parkinson’s Disease (PD) for caregivers and the entire family. The moderator was Diane Breslow, LCSW, social worker, with a panel of other speakers addressing personal challenges, changes and choices. Though the session was focused on PD, the discussion applies to caregivers of those with the atypical parkinsonism disorders as well (LBD, PSP, CBD, and MSA).

Ms. Breslow itemized the physical challenges to all caregivers:
– Caregiver safety while helping patient.
– Increased physical exertion and strength are required as motor symptoms and falls increase.
– Decreased sleep – due to patient’s sleep disturbances and to caregiving itself.
– Decreased nutritional status.
– Social stress, especially if/when the care recipient has cognitive issues or slowed processing/speech.
– Increased risk of depression, especially if the care recipient suffers depression.
– Increased anxiety, especially if the care recipient suffers anxiety.
– Decreased communication with the care recipient, especially if speech is quiet and/or slow
These stresses increase as the person with Parkinson’s disease symptoms progress.

Ms. Breslow made the point that eventually a family with Parkinson’s Disease will need a healthcare team (neurologist, primary care physician, physical therapist, occupational therapist, speech therapist, at a minimum) and emotional support (support group, religious community, family, therapist).

Here are Denise’s notes from the session.


Notes by Denise Dagan, Brain Support Network Volunteer

Challenges, Changes, and Choices: Caregiving for People with Movement Disorders – An overview and panel discussion
2017 National Caregiving Conference
Moderator Diane Breslow, MSW, LCSW
November 10, 2017

The moderator, Diane Breslow, began with an overview of Parkinson’s disease and associated caregiver challenges.

Parkinson’s Disease is…
– Chronic
– Progressive
– Unpredictable: different from day to day, or even within a day
– Different for each patient
– A family disease: the whole family experiences its effects.

Because it is a long term/life long illness it is advisable that families reach out for information and resources to support the family early on.

Eventually, you will need a team (neurologist, primary care physician, physical therapist, occupational therapist, speech therapist, at a minimum), emotional support (support group, religious community, family, therapist).

Caregivers need information and support, too.

Physical Challenges of PD on Caregiver:
– Caregiver safety while helping patient.
– Increased physical exertion and strength are required as motor symptoms and falls increase.
– Decreased sleep – due to patient’s sleep disturbances and to caregiving itself.
– Decreased nutritional status.
– Social stress, especially if/when the care recipient has cognitive issues or slowed processing/speech.
– Increased risk of depression, especially if the care recipient suffers depression.
– Increased anxiety, especially if the care recipient suffers anxiety.
– Decreased communication with the care recipient, especially if speech is quiet and/or slow
These stresses increase as the person with Parkinson’s disease symptoms progress.

How Caregiver’s Quality of Life is Affected
– 40% of caregivers indicate their health suffered as a result of caregiving
– 50% of caregivers had increased depression scores
2/3 of caregivers indicate that their social life has suffered
(last 2 correlate with the experience of the person with Parkinson’s)

Diane introduced the panelists who have all been members of Diane’s Parkinson’s caregivers support groups. Diane asked each panelist to speak to a particular aspect of their caregiving experience.

Karen’s situation is a good example of the far reaching effects of her husband’s Parkinson’s on their family. Karen is not afraid to talk about the anger associated with her husband’s PD diagnosis at age 60. Karen was a stay-at-home Mom so there was anxiety due to uncertainty and unknowns, especially financial. After four years she realized they needed to move to a 1-level, less expensive home. She went back to work, and she began to drive him to work. He was laid off and began to decline quickly. It’s been 13 years. They have long term care insurance which helps pay for 4 aides. Karen finds herself doing everything (finances, taxes, home repair, his health care management, insurance issues, etc.) rather than being in a partnership. She injured herself helping him move around. His sleep disturbances interrupt her sleep. Feeding him and toileting make messes that need to be cleaned up daily. Recently, he broke his hip and he ended up in skilled nursing, but the aides couldn’t go in there to help him so Karen had to do everything in skilled nursing. Karen feels like a hamster on a wheel that never stops. They have three kids, two of whom are supportive. She understands that caregiving is not for everyone. She struggles to find her own identity and joy.

Linda exemplifies the word proactive. Her father lives in Canada and the day after his diagnosis showed up at a speech Diane (this session moderator) was giving, and spoke with Diane after the speech. Together they developed an action plan for her father’s care. One of her siblings live near her parents. Linda lives in the states. Linda knew that it is important to her father to remain self sufficient. Linda gave her father a list of organizations to contact. They met with a nurse and social worker through the Canadian Parkinson’s Association. In that meeting they learned that not every neurologist is a movement disorder specialist. Now he sees one of the best movement disorder specialists in Canada. He has learned to advocate for himself in pursuit of his own self sufficiency. Linda feels Parkinson’s happened to her whole family. She doesn’t want to take credit as a caregiver because her whole family cares for each other, even her Dad with Parkinson’s still doing what he can to care for his family.

Claire’s husband, Ira, was diagnosed with Parkinson’s in 2010 and has severe arthritis. He is in a seated exercise class but finds that depressing because the other participants were all sick. Then he was hospitalized due to infection and returned to the exercise class with a different perspective. They are now the center of their social group, real cheerleaders and the class is respite for Claire. They expanded the number of seated exercise classes and made even more friends for both Ira and Claire, eventually finding a seated dance class which Ira enjoys so much he moves more during that class. They love it and they met even more friends, added more dance classes and more friends. Now there are 8 exercise or dance classes. The physical therapist has seen no deterioration in the past year and Ira has fewer falls. They also enjoy the opera and several theaters (both live and movies). They know where all the bathrooms are and have found people are generous in offering help with carrying equipment, opening doors, etc. Some things they have had to give up, like the symphony, because the family bathroom is not convenient and it is too much of a hassle. All the exercise means Ira can participate in the opera and theater, etc.

Jean exemplifies having built a community of support over many years of caregiving. Her husband, Richard, has been in a nursing home for 4+ years with all the frustrations since his diagnosis. For example, he lost much of their savings due to cognitive challenges and there is a division between him and his children. Through the VA he participated in a day program which gave her respite. Catholic charities and the VA helped them decide to move him into Wesley Place, where he lives now. She has been very happy with his care there and their emotional support for her family. They have a lot of friends and family who reach out frequently to provide her respite and social/emotional support. Even the checker at Trader Joe’s gives her the gift of a bouquet of flowers every time she shops there. You need to keep your eyes and ears open for the support that is out there for you.


Balancing Your Role as a Caregiver (and a person with a diagnosis) – Webinar Notes

Partners in Parkinson’s (partnersinparkinsons.org) is a joint effort between Michael J. Fox Foundation and AbbVie, a pharmaceutical company. They have occasional webinars on topics related to Parkinson’s Disease (PD). In a webinar last month, two PD caregivers and two PD healthcare professionals spoke about “building and balancing your role as a Parkinson’s caregiver.” The discussion was moderated by a retired family physician who has Parkinson’s.

Though all of the participants in the webinar were dealing with Parkinson’s Disease, the content of the webinar applies to all caregivers, regardless of disorder. And most of the content applies to everyone — whether you are giving care or receiving care.

Registration is required (and free) to access the webinar recording and slides:


Brain Support Network volunteer Denise Dagan listened to the one-hour webinar and shared notes.

Denise says that the conversation covered four areas:

“Caregiver considerations” = wearing many hats as a caregiver, taking a team approach as care partners, dealing with the emotional roller coaster, and seeking support.

“Strategies for transition” = the challenges of transitioning a part of your identity from a healthy person to a person with PD – and – from a spouse to a care partner.

“Balancing individual needs and shared goals” = keeping perspective between focusing on PD management and both care partners continuing to participate in activities they enjoy.

“Advocating for better health” = advocating for your family member with PD in the doctor’s office, in the PD community (example – fundraising for a cure), and at the state and federal level in public health policy.

Her notes are below.



Notes by Denise Dagan, Brain Support Network volunteer

Building and Balancing Your Role as a Parkinson’s Caregiver
Partners in Parkinson’s Webinar
November 8, 2017


The role of caregiver is often one of many an individual may have; caregivers, or care partners, can include children, spouses, friends and extended family or involve several individuals. Many people prefer the term care partner because it implies a choice to care and that the relationship is reciprocal, while caregiver implies the burden of care has been thrust upon you.

The transition to care partner may lead to unexpected challenges and impact existing relationships.

Caregivers may need support from friends, family or the community; access to resources can help ease transition.

Getting a diagnosis can be a relief, especially after a long term of unexplained symptoms. After diagnosis learning about Parkinson’s and how to live with it can finally begin, although not all families will pursue information immediately, especially if medication is effectively compensating for symptoms.

It can be an emotional roller coaster, especially right after diagnosis. A therapist can be helpful, especially to guide families through fear of the unknown and encourage communication and combat depression.

The panel recommends joining a support group to learn how others cope with Parkinson’s, although you can’t compare yourself directly to others because every person’s symptoms, underlying health, lifestyle, etc. do vary.

Health care policies may impact both caregivers and patients; caregivers can help advocate and be an additional voice when speaking to health care providers, weighing in on the obstacles, struggles and wins to make the most of those interactions in person and on the phone.

Caregivers can amplify the patient voice toward better care and access.


Access available resources to learn about PD. Find a movement disorder specialist. Movement disorder specialist finder at www.partnersinparkinsons.org.

Engage with allied health specialists (physical, occupational and speech therapists).

The panel agreed that most health care professionals are more than willing to take time to answer concerning questions that will reduce the inquirer’s anxiety or frustration, so find that patient person on your health care team who has time to return your phone calls or email and reach out to them when you have a question. Reducing your anxiety or frustration by reaching out to that person will keep you well.

Connect with the community through support groups, online forums, events, etc. Education, social connections with an understanding community, even activism can help combat depression.

Empower patients to make decisions.

Explore ways you work as individuals to optimize how you can work together. One panelist found his wife’s significant improvement immediately following DBS made them realize how much he was missing his healthy wife. They made changes then to stay connected and to share their story to help others see that PD doesn’t have to drive a wedge between you as a couple.

Engage with a therapist or practice meditation. People’s fears are all over the place, like loss of mobility, loss of speech, loss of job, etc. The best way to face your fears is to share them and make an action plan to put off those losses as long as possible. Reduce anxiety by getting all your financial, medical and legal documents in place well ahead of when they will be needed. For some people taking action can help ease depression.

Do activities that bring enjoyment to you and your caregiver. It is very easy for time in the day to be overwhelmed by medication timing, doctor appointments, exercise routines, etc., completely sidelining needs of the caregiver OR the lifestyle you both used to enjoy. One panelist got good advice; as soon as you are diagnosed write down who you both are and the things you both enjoy and refer back to it often, especially when either of you are feeling overwhelmed by managing PD.

Live in the moment.


Both people in the caregiver-patient relationship share daily goals, but both also have needs as individuals. Encourage independence in the person with PD.

Sometimes effort is needed when facing uncertainty. We need to learn to manage uncertainly/anxiety independently and together. Sometimes input from a therapist, clergy, etc. is really helpful with this.

Caregivers should schedule time for themselves to meet other priorities; self-care is critical when caring for others. Panelists agree that there doesn’t need to be a ’schedule’ for self-care, unless there is a regular activity they enjoy, but without a regularly scheduled activity, it is easy to let daily PD care derail self care. Don’t let that happen.

Reach out for respite care from social services, church, family and/or friends to stay with your family member allowing the caregiver to have a break and/or stay involved with activities they love.

People with PD should focus on setting and managing personal goals.

Caregivers and people with PD have other personal roles (i.e., sibling, child or friend) that require just as much attention.

It is important to find balance when integrating the caregiver role into daily life.
– Exercise!
– Communicate. Address issues, and feelings as they arise.


Health care policies may impact both caregivers and patients.

The federal government is the largest funder of PD research; approves new PD drugs to ensure they are safe and effective and helps increase access to services patients need. The panel encouraged everyone to educate themselves and participate in fundraisers and clinical trials.

Caregivers can learn more about the public policies that affect people with PD and call legislators to amplify the voice of Parkinson’s patients. The panel encouraged everyone to educate themselves and write their legislators.

Caregivers also can help advocate for more information and better care at doctors’ appointments. Between visits keep notes about things you notice in your family member with PD (increased falling, unstable gait/balance issues, wearing off of meds, etc.).

Use Fox Trial Finder or Clinicaltrials.gov and bring trials you are interested to to your doctor to discuss which you may participate in.

Learn more about public policy and how to take action at michaeljfox.org/policy.


Q. Thoughts and suggestions for my family member who’s recently diagnosed and quickly agitated/frustrated, but will not see a therapist?

A. First, find out if there is a medical issue contributing to their behavior? Is this behavior a departure from their usual behavior? Be aware of your safety around this behavior and have an exit plan if your family member really goes off the rails. Find someone to talk to as a caregiver, first. Eventually, you may be able to get your family member to talk to them. Try an aggression outlet, like Rock Steady Boxing.

Q. Person with PD has no immediate family support.

A. Be your own advocate. You are not alone. Talk to someone. It can be a church group, neighbor, pastor, friends, other family members. Tell your doctor what you love and implore them to help you be able to keep doing it. Don’t let yourself become isolated.

Q. Importance of reaching out to extended family, friends, etc.

A. The extended PD community can be intense, close, understanding, compassionate relationships because they are dealing with the same symptoms, financial, emotional woes when your non-PD friends and family don’t understand.

Q. How do you deal with friends or family who don’t know how to deal with your PD?

A. This definitely happens. With media exposure more people understand PD is not a death sentence, or they know someone with a PD diagnosis. Talking in casual groups to share information about medications, exercises, diet, etc. in public (at the YMCA, in the grocery store, etc.) helps make people even more comfortable talking with a person with PD. MyParkinsonsTeam is an online chat about PD.

Q. Most important tip for care partners on this journey?

A. Find the right doctor. Movement disorder specialist who’s as up-to-date as possible. Get involved. Move around. Be active. Be sociable. People who ask, am I doing enough? Should I be doing more? There is no doing it ‘right.’  Keep reaching out, be gentle with yourself. Be resilient. Don’t stop looking for better symptoms management. Don’t feel like a pest. Ask about clinical trials. Ask if there’s more you can do. Search for answers until you find one that works for you. Couple can drift apart. Turn toward each other, instead. Communication is paramount. Be more open, honest, vulnerable, committed, invested. Together you are stronger. It can improve your relationship.


Non-medication approach to depression – webinar notes

The Parkinson’s Foundation (parkinson.org) hosted an hour-long webinar in late November 2017 about non-medication treatment of depression in Parkinson’s Disease (PD). Actually, very little of the material presented was specific to PD but rather applies to anyone coping with depression. Our mood (degree of positive and negative thoughts) affects our quality of life, anxiety level, and motor function.

Find a link to the archived webinar recording here as well as a link to the slides: (you must register to view the recording)


The excellent speaker was Roseanne Dobkin, PhD, a clinical psychologist at Robert Wood Johnson Medical School. She offered good advice for:

* changing negative thought patterns toward more realistic thinking

* setting incremental goals to overcome apathy and depression

* addressing another person’s negative or pessimistic comments

As always, Denise’s detailed notes are below. They are well worth reading.


Notes by Denise Dagan, Brain Support Network volunteer

Parkinson’s Foundation Expert Briefing
Depression and PD: Treatment Options
Speaker: Roseanne D. Dobkin, Ph.D.
November 21, 2017

Solutions to Parkinson’s complaints are not something you can just call in. You need to take action to improve the situation for both motor and non-motor symptoms. Knowing the solutions and not implementing them will not help you.

Cognitive-Behavioral Therapy (CBT)
– Evidence-based psychotherapy
– Targets thoughts and behaviors
– Skills-based
– Very suitable for enhancing effective coping and treating depression in PD

CBT: Key Points of Emphasis
Multiple interacting causal factors of depression.
– Biological (brain chemistry, nutrition/diet, exercise/fitness)
– Cognitive
– Behavioral
Intervening on any one of these factors will improve depression, but improving on all of them will have the most beneficial effect.

Examples of 1:1 Interventions

* Increasing meaningful and social activities. Not just busy work, but something you really want to do, especially goal-oriented.
– Old: think what you used to love to do
– New: consider activities you didn’t participate in before PD
– Modified: accept you will need to do things differently than you used to, but you can still participate/contribute.

* Exercise every day
* Social goal – every day
* Self-soothing every day – what is relaxing and comforting to you? Hot tub, nature stroll, fire pit and wine.
– Taking action toward your goals doesn’t have to be huge daily. Start with baby steps and add more effort and time toward each goal up to your time and energy limits.

* Problem solving for physical limitations:
– Pacing of activities so you don’t overdo it
– Appropriate daily goals/less rigid demands
– Plan around “off time”
– Walk 10 minutes 3 x daily, instead of 30 minutes at a time
– Follow through with referrals for PT, OT and Speech

Roseanne told a story of a former fire fighter with PD whom she worked with to find ways in which he could still stay involved with his fire company. He began by joining them for a few social get-togethers, then began volunteering for charity works the fire company was involved in until he began spearheading some charity drives.

* Anxiety management and relaxation – Google these topics or find books at your local library
– Breathing exercises
– Progressive muscle relaxation
– Guided visualization (taking your mind to a place of calm actually brings down blood pressure & anxiety)
– Worry control

* Sleep hygiene
– Using bed for sleep only
– Relaxing before bedtime (limit blue light screen time in the hour, or longer, before sleep)
– Keeping regular sleep hours
– Limiting excess time in bed, daytime naps, caffeine, or alcohol in the evening
– If you aren’t falling asleep, get out of bed until you do feel sleepy so you don’t associate the bed with NOT sleeping, which can lead to insomnia.

* Thought monitoring and restructuring – Rethink the big picture. Use these techniques to rethink how you are feeling and responding to various situations. Stop the negative thought process, rewind what you thought, felt and did and project what you might do differently next time.
– Catch the negative thought
– Press pause
– Rewind
– Replay

* Multiple methods/techniques – to catch yourself and reframe your thinking from negative/unrealistic toward positive/realistic.

Thought Chart Examples: Keep track of the situation, your emotional response, and your thoughts.

Situation: Doing volunteer work
Emotion: Hopeless
Thoughts: I’m not capable of contributing. My life is meaningless.

Situation: Find out you are not invited to something
Emotion: Depressed
Thoughts: My PD makes friends uncomfortable.

Situation: Thinking about going to a party
Emotion: Anxious and scared
Thoughts: It will be horrible if people see my tremor

Are your thoughts balanced? Not rosy and positive, but realistic. Everything is not gloom and doom, either. There is usually a bit of both + and – in every situation. What would a jury of your peers decide? Is your perspective the only way to think about the situation? Are your thoughts fact based, in perspective rather than skewed?

Examine the “Evidence” for your thinking, in this case: I’m helpless. Was this person really helpless? No.
– Situation: Freezing in the bathroom.
– Automatic Thought: I’m helpless
– Evidence For: I was alone in the bathroom in the middle of the night and unable to move.
– Evidence Against: This happens quite a bit, so I planned in advance. I had my cell phone in my pocket. I called my wife on the house phone and she helped me back to bed.
– Rationale Response: Even though I was physically unable to move my feet, I was able to help myself out of the situation (thus I am not helpless).

Behavioral Experiment – because we often anticipate the worst before we have actually tried, so do a behavioral experiment, like this one:
– Negative Thought or Prediction:
“It will be impossible to have dinner in a restaurant because of my tremor.”
– Experiment:
I will to to the Olive Garden with my spouse on Saturday at 6pm.
– Outcome:
I was able to eat dinner at the Olive Garden. I ordered food that did not need to be cut and requested a straw and lid for my coke. I enjoyed getting out of the house. There were no leftovers to bring home.

You have control over your thinking and actions in response to your PD symptoms and circumstances: If you are thinking, “I am not accomplishing anything anymore.” Revise your thinking to, “I am still accomplishing many things for my family and community, even though I am no longer working in my business.”

If you are thinking, “I am rapidly deteriorating.” Revise your thinking to, “The neurologist said I was the same as 6 months ago and did not change my medications.”

If you are thinking, “Nobody at the party will talk to us.” Revise your thinking to, “At least some people will talk to us. It is highly unlikely that we will be completely ignored.”

CBT Outcome Data in PD studies:
* Dr. Dobkin’s first randomized control trial of CBT for people diagnosed with PD
– 80 people with PD (PWP) and caregivers were enrolled in the trial
– Intervention: CBT + clinical monitoring (neurologist) + standard care
– Control: Clinical monitoring (neurologist) + standard care

* 10 sessions of one-on-one CBT for the PD patient

* 4 supplemental caregiver educational sessions

* After the 10-week treatment period, there was a follow up 1-month later, which found those with CBT had significantly lessened feelings of depression for both the person with PD and their caregiver. Continuing this type of therapy over the phone can continue the effects of the initial treatment.

* Secondary outcomes improved, as well !
– Anxiety lessened
– Coping skills improved
– Quality of life improved
– Motor function improved (motor function follows mood: poor mood, poor motor function & vice versa)
– Negative thoughts lessened

* Your mood is one critical aspect of living with PD that you can control.
* Don’t suffer in silence!
* Effective non-pharmacological treatments are available that can be used alone or in conjunction with standard pharmaceutical treatments.


Q. Are medications helpful for depression in PD.
A. Absolutely, if someone’s depression is milder Dr. Dobkin recommends starting with CBT therapy. When symptoms are moderate to severe she recommends medication in combination with CBT therapy.

Q. How to people come to a psychiatrist, like Dr. Dobkin?
A. 30% of the time the patient is self-referred, they ask around to get a recommendation. 30% of the time they are referred to psychiatry from their neurologist. 30% of the time they are referred to psychiatry by a friend/family member or primary care physician.

Q. If you have apathy, how do you get motivated to get treatment?
A. Depression is feeling sad or low, and apathy is more of a lack of feeling. There is overlap because one symptom depression is lack of motivation. If you are feeling unmotivated, set yourself a very small, specific goal based on what is important to you or someone in your family. If you are not exercising, get a goal to walk for just a few minutes. Success in reaching your goal may motivate you to set your goal to walk a few minutes longer next week.

Q. If someone is biologically inclined toward depression aren’t they doomed to experience depression?
A. The biology component of the factors which contribute to depression is only one factor. It doesn’t matter how much biology is contributing to depression because the cognitive and behavior factors are also at play. Intervening in either or both the cognitive and behavior factors toward the positive make a significant positive impact on reducing feelings of depression.

Q. Is there any research data on the use of narrative therapy in PD?
A. Not that Dr. Dobkin knows of, but there is a place for all sorts of evidence-based non-pharmacological treatments that have been successful in other disorders and it will probably have some degree of success in Parkinson’s, as well.

Q. Is the Hamilton Depression Scale more for use by a clinician or by patients and their families?
A. It would be difficult to self administer, but there are dozens of tools that would be more user friendly for self evaluation. Most scales are best used in conversation with a health care professional. There are some good self help books that use cognitive behavior therapy as their basis for helping the reader. These books have some quizzes and self evaluations along with the self guided CBT based advice.

Q. Over the holidays what advice would you give families for helping someone who’s blue?
A. Let your distressed loved one know you are willing to listen if they want to talk. Try to engage them in planned family activities. People who are depressed tend to both think and speak in depressed language. Talk back to negative statements in positive ways to help them balance their thinking toward a more realistic perspective.

“Optimizing Personal Health Strategies to Manage Parkinson’s” – Webinar Notes

Partners in Parkinson’s (partnersinparkinsons.org) is a partnership between the Michael J. Fox Foundation and AbbVie Pharmaceuticals. In early October, they held a webinar on optimizing personal health strategies to manage Parkinson’s Disease (PD), using goal setting. Though the webinar was supposed to be focused on “care beyond the clinic,” the first part of the webinar actually focused on communicating with your physician.

Most of the webinar applies to those with disorders other than PD. I thought the best part of the webinar was the section on mental health. To address mental health, those with a neurological disorder should:

* Monitor non-motor symptoms, such as depression, anxiety, apathy, sleep problems, and cognitive issues

* Consider speaking with a mental health professional and/or joining a support group

* Supplement medication with other strategies to manage mental health – exercise, meditation, massage, and counseling

You can find a link to the webinar here:


Note that registration is required but there’s no fee to view the webinar.

Volunteer extraordinaire Denise Dagan listened to the webinar and took notes. They are shared below.



Notes by Denise Dagan, Brain Support Network Volunteer

Care Beyond the Clinic: Optimizing Personal Health Strategies to Manage Parkinson’s
Partners In Parkinson’s
October 4, 2017 Webinar

* Dr. Soania Mathur, MJFF Patient Council Co-Chair and person with Parkinson’s

* Dr. Irene Richard, a movement disorder specialist
* Chad Moir, Founder of Dopafit: Parkinson’s Movement Center in Easthampton, MA
* Dan Kinel, a person with Parkinson’s


Maintaining Quality of Life (QoL) with PD
* Set goals to help maintain quality of life.
— What matters most to you?
— Adjust goals as needed.
* Control the variables that you can.
* Find balance between physical, mental and social health (they all affect each other).

Speakers define quality of life as doing what you want to do, when you want to do them. Parkinson’s often reduces QoL in some ways, particularly physically, but also enhances QoL in personal/emotional ways.

For Dan Kinel, focusing on maintaining QoL has improved his fitness, as he now focuses on exercise to best maintain his movement. He regularly shares with his doctor his current symptom condition as well as his diet and exercise routines, so his Dr. can address those symptoms Dan cannot control, like tremor.

Dr. Richard says Dan’s communication with his doctor in this way is perfect! Even if you only have a nurse practitioner with a lot of PD experience, getting feedback as to what may help maintain QoL is better than nothing until you can see your neurologist. You do need to strike a balance between living your life and spending more time than you would like on exercise and monitoring diet.

Chad always asks new members to Dopafit what their goals are in adding movement/exercise to their routine. In this way, Dopafit can support those goals in the most efficient and fun way. You won’t regularly do an activity you don’t enjoy. Try dancing if you don’t like Rock Steady Boxing.

Dr. Richard says people become frustrated when their body will no longer do things they used to. It helps to reset your expectations so you can continue to do some of the things you loved if you accept that you may be able to do those same things more slowly, or keep an open mind to explore things you have not done before, but that you may really enjoy now. Exercise – the earlier, the better – may benefit neuro-protective and restorative benefits, and even benefit mood, sleep, and thinking. Tai-Chi has been researched, particularly, but also mental exercises are of benefit in the same ways.


Physical Health and Parkinson’s
* Be consistent with medication and other routines to help manage symptoms
* Build a management team of experts you trust
— Contact an AbbVie advocate to locate resources in your area at www.pdadvocates.co
— Allied care professionals
— Complementary medicine
* Exercise is KEY to optimizing overall health

Dan moves his body in some way every day to maintain mobility and flexibility. He also socializes with friends or community every day. He says, just do something you feel engaged in.

Dr. Mathur asked Chad how he helps members of Dopafit to overcome apathy. He encourages members to think about which activity they have tried that they, “don’t like the least,” and commit to doing that.

Dan says having a commitment to do an activity with friends, who are expecting him, helps him overcome apathy, laziness, loss of interest, and get out the door to move and/or be social.

Dr. Richard suggests that engaging with other people also helps with projecting your voice or being aware of your own facial masking as PD symptoms progress. If you let it, that feedback may help keep you from withdrawing so you continue to be engaged with people and active, which are both part of maintaining QoL. Setting a schedule with a spouse, friends, or a place like Dopafit to get out and socialize or exercise goes a long way toward this.

Chad says Dopafit is doing more than just old-fashioned workouts. They offer Rock Steady Boxing, giant Jenga for fine motor skills – and fun!, tango and other dance, Tai-Chi, the Art Cart for fine motor skills, and more. Having all these various activities available adds a tremendous social element to participating. It all plays in to QoL and the whole person, rather than just muscle strength.

Dan has done a tremendous variety of PT, OT, speech therapy, acupuncture, massage, social engagement and several exercises to slow the progression of his disease and maintain his QoL. He says to remember that others are going about their day and not paying attention to you, even though you may feel that everyone is staring at your gait, facial mask, etc.

Dr. Richard says all the things Dan has been doing is complementary to properly balanced medications, so you have to pay close attention to getting both in order to be able to do all activities throughout the day, safely.


Mental Health and Parkinson’s
* Monitor non-motor symptoms
* Consider speaking with a mental health professional and/or joining a support group
* Supplement medication with other strategies to manage mental health
— Exercise
— Meditation
— Massage
— Counseling

Dr. Richard says it is very common to have depression, apathy, mood, sleep, concentration problems with PD, but your doctor can help with all of these with medication options in concert with exercise, meditation, counseling and other tools. Doctors don’t always ask about your mood or emotional state in your neurological appointments. She says, please, please, please don’t feel it is not a personal deficit, but one way in which your PD is manifesting itself so bring those changes up to your neurologist to get help.

Dan mentioned several members of his care team, but forgot to mention his therapist who really helped him to get through the depression that overtook him when he first got his PD diagnosis. It was a combination of medications, talk therapy, support group, etc. If he finds himself feeling that way again, he will reconnect with that therapist.

Dr. Richard reminds us that doctors believe depression that is treated before motor symptoms are noticed, is probably the first presenting symptom of PD because they now recognize depression can be a symptom of PD.

Dan says your doctor can’t read your mind, so you need to tell them how you have been feeling, regardless of the cause. If it is decreasing your QoL it is worth bringing up to discuss how to overcome those low feelings so you can feel more motivated to do the exercise, socialization, etc. that maintain QoL in other ways.

Dr. Richard wants everyone to remember to use the valuable services of PT, OT, speech therapists as part of your care team.


Accomplishing goals and optimizing personal care
* Living well is about creating a plan and making changes as needed to address your overall health
* Set goals that address all aspects of your care, including physical, mental and social health.
— Speak openly with your doctor and other members of your care team about how they can help you reach your goals.


Dr. Richard says most people have multiple medical conditions as they age so if you have chronic low back pain you may not be able to participate in some of the popular exercise programs for PD, but you can seek physical therapy advice to find exercises that will not only keep you moving, but help the lower bcd pain. Communication between your neurologist and PT is crucial.

You can even start with your primary care physician (PCP) about those other medical conditions outside your PD. They may refer you to a neurologist, movement disorder specialist, or PT. Be sure all your team is communicating with each other.

Dr. Mathur brought up how does dementia play into PD care? Dr. Richard says you can get all levels of cognitive dysfunction in PD, especially as people get into really advanced years. It can just be executive function issues, which is easier to adapt to. But, in some cases people will develop dementia, which is defined as cognitive impairment that affects your ability to accomplish the activities of daily living without assistance. If you think you have cognitive impairment, you should have an evaluation. You can get recommendations for improving independence. You can find our you have delusions and learn how to manage living with this more confusing and debilitating condition.

Dr. Mathur asked Chad about his mother, who had PD which was undiagnosed for many years. Chad said she had cognitive impairment and as a care partner he found the best thing he could do with respect to activity is to meet her where she was because her ability to remember from one day to the next, have the motivation to cooperate with exercise, etc. was very fluid.

Dr. Mathur asked Dr. Richard if there is a minimum amount of exercise daily and how does medication play into that?
There are a lot of studies into what kind of exercise is best, what they achieve, how often to do it, and for how long. She says there is not definitive answer to any of it. She recommends doing something every day, get your heart rate up, but there is no specific prescription. Don’t overdo it so you are in pain or debilitated afterward. Don’t let it take over your life unless you truly enjoy spending that much time exercising. Stay really well hydrated!!!

Dan exercises right after taking medication so he can move most smoothly. He works out every day and is cognizant not to overdo it. He gets his heart rate up and tries to engage his mind while exercising. He really enjoys non-contact boxing. He really doesn’t want to overdo it so he doesn’t suffer an injury and have a tremendous set-back while he recovers from an injury.

Dr. Mathur asks if the massage therapist and other allied professionals should be certified? Dr. Richard says PT, OT and speech therapists should definitely be specially trained in PD. There are those who are specially trained in neurological conditions, but that is often focused on stroke. You would do better with someone who has been trained or is willing to educate themselves about PD specifically.

Dr. Mathur asked everyone what is the most important thing you could tell someone with PD to optimize their QoL.
– Dan would say you are still the same person the day after the diagnosis. Don’t obsessively look at the internet, exercise and reach out for support from whomever is willing to help walk you through this.
– Chad says be proactive. First thing, find a movement disorder specialist you feel comfortable with so you can really communicate with them about depression, etc. Then, build your team (PT, OT, speech therapist, etc.) and get involved in the PD community (support group, fundraising – whatever is for you). Exercise!
– Dr. Richard says keep an open mind because you will continue to learn, symptoms will change, get your information from reliable sources and once you have all the information discuss it with your Dr. and decide what treatments, medication, exercise, social involvement, etc. work for you over time.

Recording, Resources + Notes from Orthostatic Hypotension in PD, MSA, and LBD Webinar

Brain Support Network and Stanford University co-hosted a webinar last Monday, September 18th about orthostatic hypotension (OH) in Parkinson’s Disease (PD), Multiple System Atrophy (MSA), and Lewy Body Dementia (LBD).



We’ve posted the webinar recording here —




If you listen to the webinar recording, please take LESS THAN FIVE MINUTES to answer six questions on our survey.  See:




For additional information on the topics addressed during the webinar, see:

Orthostatic hypotension –

Parkinson’s – parkinsons.stanford.edu

Make an appointment with Dr. Santini at the Stanford Movement Disorders Center –  650-723-6469

Multiple System Atrophy www.brainsupportnetwork.org/msa

Lewy Body Dementia www.brainsupportnetwork.org/lbd



Our terrific volunteer, Denise Dagan, took notes from the webinar.

Orthostatic Hypotension (OH) in Parkinson’s, Multiple System Atrophy, and Lewy Body Dementia

Speaker:  Veronica Santini, MD, movement disorders specialist, Stanford University
Host: Candy Welch, former MSA caregiver, Brain Support Network
September 18, 2017



Topics for this webinar are:
* Describe symptoms associated with orthostatic hypotension (OH) in
– Parkinson’s Disease (PD)
– Multiple System Atrophy (MSA)
– Lewy Body Dementia (LBD)
* List the conservative and medication interventions used for treatment

Normal Blood Pressure Response to Gravitational Change
Gravitational Change = changing from lying or sitting to standing, even climbing stairs.  Gravity pulls blood into the legs and belly (up to 1 liter, or more).  That means less blood goes to the heart, resulting in up to 20% less blood leaving the heart and consequent blood pressure decrease.  Normally sensors in the neck see less blood pressure and sends signals to close blood vessels, increasing blood pressure.  Important organs get nutrients and oxygen.

In OH the sensors are not working properly (baroreceptor reflex is dysfunctional), so blood vessels don’t close.  They stay open and blood pressure drops, causing symptoms.

Common symptoms include:  lightheadedness, dizziness, almost passing out, weakness, fatigue, visual blurring, headaches.

Less common are:  buckling legs, walking difficulties, confusion, slowed thinking, shortness of breath, imbalance, jerking movements, neck pain/“coat hanger headache”, chest pain

Rare symptoms include:  stroke-like symptoms, weakness or numbness, abnormal cramping/dystonia.

Evaluation of OH includes:
– History of autonomic symptoms
– “Orthostatic” blood pressure (BP) = measure BP in both laying and standing postures.  OH is defined as a drop of the systolic >20 or diastolic >10
– Neurological examination
– Autonomic testing can be helpful in distinguishing PD/DLB from MSA

Approach to Treatment of OH:
Conservative therapy first, then adding Medications and, if necessary, Combination therapies (both conservative and medications, even a combination of medications)

Goals of Treatment:
1. Prevent loss of consciousness (this leads to falls and potential injury)
2. Prevent close calls (almost losing consciousness and)
3. Identify and prevent symptoms of OH (leg weakness, falls, somnolence, confusion)
4. Improve fatigue, exercise tollerance and cognition

Actions to Avoid:
– Standing motionless
– Standing too quickly
– Working with arms above shoulders
– Hot environments (anything that leads to sweating)
– High altitude
– Hot baths
– Fever
– Dehydration !!!
– Vigorous exercise
– Fast or heavy breathing
– Large meals
– Alcohol
– Straining with urination or defecation
– Coughing spells

Conservative Management:
– Water ingestion (60oz/day!)
– Salt tabs, dietary salt (chips, pretzels, nuts, deli meats, soups, tomato juice)
– Head of bed elevation 10-20 degrees/4” or 10cm (reduces postural change extremes, and urination)
– Physical maneuvers that raise orthostatic blood pressure (standing calf exertion, raise one leg on a step, knee bends, single knee kneel)
– Cooling vests, leg sleeves, binders around the abdomen after eating to prevent blood rushing to gut for digestion

Fludrocortisone (Florinef)
Mineralocorticoid, a-1 agonist = woirks by expanding blood vessel volumes
Dose 0.1-0.5mg/daily
Should be used carefully due to rise of volume overload, electrolyte abnormalities
Additional side effects: headache, swelling, weight gain, high blood pressure lying flat.

Peripheral z1 agonist = Works by squeezing blood vessels
Dose 5-10mg 3x daily
Common side effects: pupil dilation, goose flesh, tingling, itching
Can also cause high blood pressures when lying flat.

Droxidopa (Northera) (Newest FDA-approved Rx)
Norepinephrine (NE) pro-drug but the exact mechanism of action is unknown.
Studies have shown low standing NE
Dose 100-600mg 3x daily
Common side effects: headaches, dizziness, nausea, blurry vision, high blood pressure
Can also cause high blood pressures when lying flat.

Doctors advise against lying down when using all of these so you don’t raise blood pressure too high. Never take them before bedtime so blood pressure doesn’t go to high while sleeping.

Non FDA-approved Pharmacology:
Pyridostigmine (Mestinon)
Improves standing BP in patients w/OH
Does not increase BP when lying down
Effective alone or w/Midrodrine
Side effects: diarrhea, salivation, nausea, vomiting, muscle cramps, twitching\

a-2 adrenorectptor antagonist = increases norepinephrine and BP
Side effects: confusion, increase in heart rate, headache, or tremor
Medication interactions
Regulation of supplements


QUESTIONS AND ANSWERS  (all answers are by Dr. Santini, unless indicated)

Q:  What can caregivers do to help?

A:  Be the squeaky wheel by reminding your family member to keep hydrated, eat salty foods (even it that means the two of you eat different meals), help them check blood pressure throughout the day.  Also, give your doctor a symptom report so he/she has a full picture of challenges at home.  Doctors can’t fix what they don’t know about.  Sometimes patients get used to having low BP, so they don’t report changes to their doctor.  Caregivers can be more objective in how things used to be before BP issues arose, like seeing increased falls, more sleepiness, etc.  Caregivers need the right amount of support, as well.  Sometimes, the doctor can arrange for a nursing assistant to come into the home to do BP checks, or provide other services.  Just let your neurologist know if you are feeling the least bit overwhelmed.

Q:  How do you keep someone safe with OH without confining them to a wheelchair?

A:  Doctors should make sure the patient’s BP is good enough to have a full and active life.  It is a step-wise process, so be patient, but patients and their families or caregivers should be persistent.  Make sure all aspects of the patient’s health influencing BP is investigated, the big picture is formed and all therapies possible are attempted.

Candy:  We had a tilting wheelchair for my husband, who had MSA, so when he was feeling faint they could tilt the chair back making it easier for the body to maintain blood pressure, and preventing him from feeling awful or passing out.

Dr. Santini:  Neurologists are often able to write a letter to your insurance company recommending such a chair so that it is covered by insurance.  They are very expensive, but insurance did pay for Candy’s husband’s tilting wheelchair.

Q:  How does blood pressure affect brain function?

A:  There are several philosophies, but it is thought the blood carrying oxygen and nutrients doesn’t get to certain parts of the brain when BP is low.  The most upper parts of the brain affect both thinking and leg function.  Lack of oxygen and nutrients to these parts of the brain can cause all the symptoms mentioned; visual blurring, headaches, neck pain, dizziness, etc.

Q:  Are there any new blood pressure (BP) treatments?

A:  Yes, the newest is Northera.  Anecdotal evidence shows it to be quite effective.  But, the old ones are tried and true and new ones can be significantly more expensive.

Q: How do BP medications interact with Parkinson’s medications?

A:   There are several issues here.  Parkinson’s disease and atypical parkinsonian syndromes, like Lewy Body Dementia and Multiple System Atrophy cause problems with orthostatic hypotension.  So, the disease itself causes OH problems.  Almost every medicine doctors have to treat parkinsonian syndromes also drop blood pressure, unfortunately.  Patients should understand they need not suffer.  Let your physician boost your BP with some meds, then get your PD symptoms under control with other meds.  It is more meds, but if it improves your quality of life because you can move better and you can think and not be dizzy, etc. it’s probably worth it.  I frequently see patients who are not taking enough carbidopa-levodopa because it lowers BP.  I boost the BP, then add enough carbidopa-levodopa to improve mobility.  It’s a trade-off, but I feel quality of life is the most important thing while the patient is well enough in other ways to be active without feeling dizzy.

Q:   Can beta blockers help?

A:   With beta blockers you have to be careful. Beta blockers are often used for tremor control. We use those that don’t affect BP too much. They can be helpful for people who have very elevated heart rates.  Usually, the best treatment is to use the BP boosting agents. Oftentimes, in the absence of Northera, which can sometimes cause an increased heart rate, if you treat BP, heart rate can come down.

Q: What foods and supplements are best for OH?  Anything to be avoided?

A: It’s more how often you’re eating and how much you’re eating.  The bigger the meal, the more your BP can drop afterward.  If you are susceptible to BP drops after meals, an abdominal binder can be helpful.  Put it on about 10 minutes before a meal and keep it on for an hour afterward.  I recommend several small meals throughout the day, rather than three big meals. As far as what meals are best, we know some people have more difficulty with digestion of gluten or lactose.  Try going gluten free first for a couple weeks to see if it makes a difference for you.  If not, return the gluten and try going lactose free for a couple weeks.  It’s a good test to see if you are one of those with these digestive issues.

Q: What do you do if you have both OH and hypertension?

A: This is by far the most challenging of the group.  You have to decide on goals of care. Most commonly, people have hypertension, or high blood pressure, when they are lying flat. In that case you should avoid that flat position during the day.  At night we sometimes give a short-acting high blood pressure medicine, something like captopril, clonodine, etc.  It is more challenging when people have wide swings in BP.  It is extremely common in MSA and advanced PD.  Even standing or sitting people will have very high blood pressures, with systolic in the 180s of 190s.  Others will have extremely low blood pressures standing, with systolic in the 70s of 80s and they are passing out.  One thing doctors will do is ask patients to take their BP before they take the BP boosting medicine.  Then, the doctor will advise against taking the BP boosting meds when BP is already high, but to take it later in the day.  Sometimes, a person will need to avoid everything causing high BP.  Sometimes not treating high BP is the best option, even though that would normally not be recommended.  You have to treat which is causing the most symptoms and affecting quality of life.

Q: Can salt tablets help?

A: Yes, if you don’t like eating salt.  Talk with your doctor.  Taking a 1 gram tablet of salt in a tablet works better for some people than having salty meals.

Q: Can OH cause shortness of breath?

A: Yes!  It’s a common symptom because the upper lungs aren’t seeing as much blood as they usually do when BP is normal.  Gravity is pulling the blood down and those upper lung fields feel like they’re not breathing so people feel short of breath.

Q: Why does BP drop with exercise?

A: Sometimes it will raise, sometimes it will drop.  You may notice basketball players wearing sleeves on their ankles and legs.  Those are compression sleeves to help adjust BP.  When we exercise, the blood vessels open up so all the blood flow can get to those muscles that are working so hard.  The problem is that in OH we don’t have those extra reflexes to boost the BP back up.  Sometimes vigorous exercise can drop BP in people who have OH.  Those leg and arm sleeves can be very helpful in that case.

Q: Can OH lead to sudden death?

A:   It is a more rare circumstance.  It can certainly lead to heard dysfunction, and that could lead to sudden death.  We know that in autonomic dysfunction people can also have arrhythmias, and that can lead to sudden death.  If not exactly OH, sometimes it’s the autonomic failure that involves the heart that can lead to sudden death.

Q: Is OH more severe in MSA than in PD or LBD?  Is treatment of OH different with these three diseases?

A: Treatment tends to be similar but you have to be ready as the patient, caregiver, and healthcare provider to accept more OH in MSA. OH is typically more severe in MSA than in PD or LBD.  Sometimes very advanced PD or LBD (10+ years) may have severe BP swings, but MSA is more severe because OH occurs early in the disease course.  BP swings/OH is one of the most prominent symptoms people have in the entire MSA disease course.  Treatment goals in MSA may be different from PD and LBD as more accepting of BP swings.

These questions were sent in during the webinar:

Q: Someone has MSA w/OH but also supine hypotension (low blood pressure lying down).

A: This is easiest to treat because you just need to boost BP in all positions (lying down, sitting, and standing).  I would be concerned something else is going on and would recommend autonomic testing to determine that.

Q: Someone has primary autonomic failure (PAF) with possible MSA.  Does OH occur in PAF?

A: Oh, yes!  This whole category of PAF is a difficult one.  There is a current study looking at the natural history of primary autonomic failure.  Based on that research they are finding some of these patients eventually meet qualifications for an PD or MSA diagnosis.  Some people just have PAF, but not significant PD symptoms or progressive parkinsonism.  The main symptoms these patients have is OH and they really suffer from that.

Candy: This is how my husband was diagnosed with MSA.  First, doctors diagnosed PAF.

Q: Northera doesn’t help.  Should I stop and restart it?

A: No.  Sounds like you need to adjust the dosage.  Tell your doctor.  Sometimes, you just need to call or email, rather than make an appointment to see the doctor, for a medication adjustment.  Sometimes, they may ask you to come in in order to understand the problem.  If I had a patient report this to me and the patient was at the max dosage of 600mg/daily, I would cover all the bases with the patient.  I would reassess everything, confirming that the patient is drinking enough water, eating enough salt, wearing compression stockings. Does this patient tolerate Florinef and, if so, can we retry it?   Are you on an effective dose of Florinef or Midodrine, would adding pyridostigmine help the situation? When things get really tough, I sometimes temporarily reduces the anti-Parkinson’s medications (carbidopa-levodopa or dopamine agonist).  Sometimes reducing the PD meds isn’t what’s necessary, but increasing carbidopa can reduce side effects of levodopa, sometimes.  It’s worth looking at.

Q: Can coconut oil help OH?

A: Harmful? probably not, unless you have high cholesterol.  Ask your doctor if you should or should not be eating coconut oil, based on your health numbers.  There is no evidence that it helps.  It’s just the new magic for everything.

Q: Questioner feels faint while having a bowel movement. What can be done?

A: Either urinating or defecating activates the opposite side of the autonomic nervous system, lowering blood pressure.  People have passed out on the toilet.  Bathrooms are dangerous with hard surfaces to hit your head on when passing out.  The answer is to treat the constipation so there is no straining.  Don’t treat to the point of diarrhea because there can be straining with that, as well. Any of these may help:  Miralax, Senna, Cholase, or any stool softener. Another solution may be to put your feet onto a stool so knees are raised while on the toilet (Squatty Potty) can help defecation without straining.  Massage the lower belly while trying to poop can help move your bowel.  Best to poop after a hot meal and around the same time every day.

Q: What about SSRIs (antidepressants) for OH?

A: Yes, Prozac has been studied for use in OH. There is some research that it can help boost BP.

Q: Is Parkinson’s with OH more severe than PD without or a more rapidly progressing form of PD?

A:   Everybody who has PD has a different form of the disease. I have heard the strangest symptoms that a neurologist would consider ‘off medication’ symptoms, or those not normally attributed to PD, but happen to be attributed to that person with PD.  It’s very common for people with PD to have OH.  They are just a little unlucky because with OH you get a lot of symptoms.  Although you feel horrible and like you’re dying, sometimes, it doesn’t mean that your PD is more severe, just because you have those symptoms.  It means it’s something we need to treat and get your quality of life better.

Q: It seems OH research is focused on MSA. Do you feel that is true, and if so, why?

A: Yes, it is very true because patients w/MSA have OH symptoms early and severely in the disease course.  Researchers feel that if they can develop a treatment for OH in MSA, it will help those with PD.  I feel more studies should be done for OH in PD because improvements in OH improves cognition and physical activity for patients with PD.  Up to 30% of newly diagnosed PD patients have OH, so they would benefit from OH research.

Q: If I have severe OH, what kind of doctor should I see?

A: It depends on the specialty at different medical centers.  If you come to see a movement disorder specialist at Stanford, I have had specialized training in treating OH.  But, some movement disorder specialists prefer you see an autonomic specialist if you have OH. Other specialists who can treat OH include cardiologists or nephrologists.  You just have to find the specialist most comfortable in treating OH at the medical center where you are being treated.

Q: Is OH caused by a pathology in the brain?

A: People with MSA, LBD and PD have an abnormal buildup of the protein alpha-synuclein in certain brain cells.  These people can be affected by OH.  Other atypical parkinsonisms, like PSP, CBD, etc. that don’t have alpha-synuclein don’t have OH so we feel there is a connection between OH and alpha-synuclein.

Q: Does Stanford have an autonomic testing center?  Do you know where other autonomic testing centers are located in the US?  What is the benefit of having this testing?

A: Stanford has a very good autonomic testing center.  It is especially useful for people who have diabetes and PD, or in cases where symptoms seem more severe than what would be expected in PD so you would like to gather more information to determine if it is really MSA.  For these people, it may be a good idea to have autonomic testing. Stanford is probably best place for autonomic testing on the west coast.  Mayo Clinic in the midwest, and there are several places on the east coast are terrific, like Beth Israel.

Q: Some research shows that doctors see OH and automatically diagnose MSA.  What’s happening here?

A: I see people newly diagnosed with PD who have some OH and they have been misdiagnosed with MSA.  They actually have PD, but because PD medications lower BP, the medications can make their symptoms look more like MSA early in the course of their symptoms.  When there is a question as to whether someone has PD or MSA, autonomic testing should be done to differentiate between the two.  Seeing a movement disorder specialist rather than just a neurologist because they are specially trained to use set literature criteria that helps to differentiate between these conditions. The history of a person’s initial symptoms helps me figure out an accurate diagnosis.  Also, seeing how a person’s symptoms progress helps to determine an accurate diagnosis.

Q: What does autonomic testing look like?

A: The patient lays flat on a special bed.  There are several tests.  In one they infuse a medication that causes sweating to see how autonomic nervous system responds.  They may also have the patient do deep breathing to see if their heart rate and blood pressure responds correctly.  They also suddenly change the patient’s position from lying to standing (by tipping the table up quickly) to see how heart rate and blood pressure system responds. Depending on the body’s responses to all these different tests, they can determine if they are normal or abnormal.  If there are abnormal responses, it the problem coming from the brain or from the peripheral nervous system. That can be helpful in differentiating between disorders.

Q: What about Methotrexate?

A: That can be used if there is an immune component to the patient’s autonomic dysfunction.


Stanford/BSN Webinar – Orthostatic Hypotension in PD, MSA, and LBD, 9/18

Brain Support Network (BSN) is pleased to announce its second webinar with Stanford Movement Disorders Center, one of our Northern California partners.

Update:  See our notes from the webinar here.

Join us for a free, one-hour webinar on orthostatic hypotension in Parkinson’s Disease, multiple system atrophy, and Lewy body dementia. The speaker is Stanford movement disorders specialist Veronica Santini, MD. And the host is long-time BSN MSA group member Candy Welch.  Please spread the word!

What is orthostatic hypotension?  It is the sudden drop in blood pressure upon change in position such as sitting up from lying down in bed or standing up from a seated position.


Orthostatic Hypotension in Parkinson’s Disease, Multiple System Atrophy, and Lewy Body Dementia

When: Monday, Sept. 18, 2017
2-3pm Pacific Time (US and Canada)

Speaker: Veronica Santini, MD, movement disorders specialist, Stanford Movement Disorders Center

Register in advance for this webinar:


After registering, you will receive a confirmation email containing information about joining the webinar.  Save that email as it contains an important link with the meeting ID embedded.  You will receive reminders.

Note: If you can’t make it on September 18th, we encourage you to register for the webinar so that you will be alerted when the recording is available online.


Further details on the webinar topic:

Dr. Veronica Santini, a movement disorder specialist, has extensive experience with orthostatic hypotension in the context of three disorders — Parkinson’s Disease (PD), multiple system atrophy (MSA), and Lewy body dementia (LBD).

Dr. Santini will address these topics:

  • what is orthostatic hypotension (OH) and how is it diagnosed?
  • is OH different in PD, MSA, and LBD?
  • what are the non-pharmacological treatments?
  • what are the pharmacological treatments?

There will be time for audience questions on OH.


Further details on the speaker:

The speaker is Dr. Veronica Santini, a movement disorders specialist at Stanford University. Dr. Santini has special interest in the autonomic system.  She takes a holistic approach to patient care and seeks to integrate conservative and alternative therapies where appropriate.


Further details on the webinar host:

The webinar will be hosted by Candy Welch, whose husband Bob had multiple system atrophy (MSA), confirmed through brain donation. She is on the Board of Brain Support Network, a nonprofit focusing on the four atypical parkinsonism disorders, including multiple system atrophy and Lewy body dementia. Candy will be speaking about brain donation for multiple system atrophy at the national MSA conference in October in Nashville.


Register in advance for this webinar:



Questions? Please contact Robin Riddle.

Sept 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 September 2017.

With my Brain Support Network atypical parkinsonism (DLBPSPMSACBD) 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:

* Roseville, Tues 9/5: speech therapist speaking about benefits of seeing a speech pathologist

* Soquel (Santa Cruz County), Wed 9/6: Dr. Salima Brillman, movement disorders specialist, will be speaking about hallucinations and delusions that can occur in PD and Lewy Body Dementia. Note that her talk is sponsored by and written by a pharmaceutical company.

* Chico, Wed 9/6: physical therapist addressing exercises for those with PD

* Brentwood, Wed 9/6: Dr. Salima Brillman, movement disorders specialist, will be speaking about hallucinations and delusions that can occur in PD and Lewy Body Dementia. Note that her talk is sponsored by and written by a pharmaceutical company. (Looks like Dr. Brillman has a lot of driving scheduled for 9/6.)

* San Francisco/Kaiser, Tues 9/12: speaker addressing dance for PD. Note that many in our Brain Support Network do attend PD dance classes…cautiously.

* Menlo Park/Little House, Wed 9/13: Dr. Salima Brillman, movement disorders specialist, will be speaking about hallucinations and delusions that can occur in PD and Lewy Body Dementia. Note that her talk is written by a pharmaceutical company though we’ve asked for the number of slides to be reduced. (Sponsorship is not allowed.) This is a new meeting location! The group is no longer at Avenidas in Palo Alto.

* Millbrae/Magnolia, Thurs 9/14: Dr. Salima Brillman, movement disorders specialist, will be speaking about hallucinations and delusions that can occur in PD and Lewy Body Dementia. Note that her talk is sponsored by and written by a pharmaceutical company.

* Lincoln, Tues 9/19: Kaiser Roseville neuropsychologist will address how cognition can impact motor symptoms in 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:


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



San Jose/Willow Glen
Friday, 9/1, 10am-noon  (speaker starts about 10:20am)
Guest Speaker:  Terry Nellis, Neptune Society
Topic:  Cremation instead of a casket
RSVP?:  No.

Friday, 9/1, 10:30am-noon
Guest Speaker:  Hip Skind, MD, emergency room physician and member of Board, Kaweah Delta Hospital
Topic:  Question and answer
RSVP?:  No.

Tuesday, 9/5, 1:30-3pm
Guest Speaker:  Kimberly Kinney, SLP, speech pathologist, Sutter Roseville Rehab Services
Topic:  General benefits for PD patients to see a speech pathologist
RSVP?:  No.

Soquel (Santa Cruz County)
Wednesday, 9/6, 1-2:30pm
Guest Speaker:  Salima Brillman, MD, movement disorders specialist, The Parkinson’s Institute, Sunnyvale
Topic:  PD Psychosis
RSVP?:  No.

Wednesday, 9/6, 1:30-3pm
Guest Speaker:  Erin Edwards, PT, Enloe Hospital Rehab
Topic:  PD exercise
RSVP?:  No.

Wednesday, 9/6, 6:30-8pm  (New meeting day)
Guest Speaker:  Salima Brillman, MD, movement disorders specialist, The Parkinson’s Institute, Sunnyvale
Topic:  PD Psychosis
RSVP?:  No.

Saturday, 9/9, 10am-noon
Program:  Discussion groups – those with PD and caregivers
RSVP?:  No.

Yuba City (Tri-Counties)
Monday, 9/11, 1-2pm
Guest Speaker:  Paulla Hyatt-McIntire, attorney
Topics:  Medi-Cal eligibility, recovery, tips to prevent elder abuse, and estate planning decisions
RSVP?:  No.

Monday, 9/11, noon-1:30pm
Program:  Panel of group members discussing various stages of PD
RSVP?:  No.

Monday, 9/11, 2-3:30pm
Guest Speaker:  Stephanie Fiola, RN, AbbVie
Topic:  Treatment for advanced Parkinson’s
RSVP?:  No.

Pacific Grove (Monterey County)
Tuesday, 9/12, 3-4:30pm
Guest Speaker:  Peter Lin, MD, movement disorders specialist, Valley Parkinson Clinic, Los Gatos
Topic:  New developments in PD
RSVP?:  No.

San Francisco/Kaiser
Tuesday, 9/12, 4:30-6pm
Guest Speaker:  Judy Leash, Dance for PD
Topic:  Dance for Parkinson’s
RSVP?:  No.

Menlo Park/Little House  (New meeting location!  No longer at Avenidas in Palo Alto.)
Wednesday, 9/13, 2-3:30pm
Guest Speaker:  Salima Brillman, MD, movement disorders specialist, The Parkinson’s Institute, Sunnyvale
Topic:  Parkinson’s hallucinations and delusions – overview and treatment
RSVP?:  No.

Thursday, 9/14, 1:30-3pm
Discussion Topic:  Importance of financial and medical durable powers-of-attorney
RSVP?:  No.
Thursday, 9/14, 1:30-3pm
Guest Speaker:  Salima Brillman, MD, movement disorders specialist, The Parkinson’s Institute, Sunnyvale
Topic:  PD – more than motor symptoms
RSVP?:  No.
Walnut Creek (Mt. Diablo)
Saturday, 9/16, 9am-noon  (speaker 10:45am-11:45am)
Guest Speaker:  Marilyn Stebbins, PharmD, UCSF School of Pharmacy
Topic:  All you ever wanted to know about pharmacy
RSVP?:  No.

Tuesday, 9/19, 10-11am
Guest Speaker:  Kimberly Lanni, PhD, neuropsychologist, Kaiser Roseville
Topic:  How cognition can impact motor symptoms in PD
RSVP?:  No.

Tuesday, 9/19, 1:30-3pm
Guest Speaker:  Suzanne Mortensen, ADT Alert Systems
Topics:  Newest technology in medical alert systems and preventing falls
RSVP?:  No.

San Jose/The Villages
Tuesday, 9/19, 2-3pm, Cribari Conference Room
Guest Speaker:  Jacque Duvall, behavioral health instructor, Kaiser Santa Teresa
Topic:  Sleep and insomnia
RSVP?:  Yes, required if you are not a resident of The Villages. Contact Alice Pratte, group leader, 408-223-8033, at least 24 hours in advance to obtain community access.

Mill Valley (Marin County)
Friday, 9/22, 1-3pm (guest speaker from 1-2pm)
Guest Speaker:  Catherine Printz, DPT, physical therapist, UCSF
Topic:  Exercise is for everyone
RSVP?:  No.

Monday, 9/25, 7-9:30pm
Guest Speaker:  Cynthia Eaton, movement class instructor, Kaiser Hayward
Topic:  Exercise for PD
RSVP?:  No.

Tuesday, 9/26, 1-2:30pm
Guest Speaker:  Stephanie Fiola, RN, AbbVie
Topic:  Treatment for advanced Parkinson’s
RSVP?:  No.

Union City/Mark Green Sports Center
Saturday, 9/30, 12-2pm  (special meeting day/time)
Guest Speaker:  Laurice Yang, MD, movement disorders specialist, Stanford
Topic:  Latest research on medication management and innovative strategies for managing PD symptoms
RSVP?:  No.

Carbonated liquids may help swallowing dysfunction (small Swedish study)

This is interesting research from Sweden on the effect of carbonated liquid on swallowing dysfunction. Though the study was done on 48 patients with Lewy body dementia, the findings likely apply to all in the Brain Support Network community.

Two interesting points were made:

1- While 40 patients had swallowing dysfunction confirmed through videofluoroscopy, 14 of these did not perceive they had swallowing symptoms.

2- Out of the patients with swallowing dysfunction, 87% had “an overall improved swallowing function with carbonated liquid.” This was true even that the pharyngeal transit time of carbonated liquid was quicker than think liquid or thickened liquid.

Of course you can test whether carbonated liquids work (for you or for your family member) by requesting they be tried during videofluoroscopy.

The abstract is below.




Clinical Interventions in Aging. 2017 Aug 8;12:1215-1222.

Effects of carbonated liquid on swallowing dysfunction in dementia with Lewy bodies and Parkinson’s disease dementia.

Larsson V, Torisson G, Bülow M, Londos E.


Swallowing dysfunction is an increasingly recognized problem in patients with dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD), which can result in aspiration pneumonia and death. Few studies have examined potential ways of improving swallowing function in this fragile patient group. The aim of this study was to evaluate swallowing dysfunction and carbonated liquid using videofluoroscopy in DLB and PDD patients.

A total of 48 patients with DLB and PDD were referred for a clinical examination with videofluoroscopy. Descriptive overall assessments were provided at the time of the examination regarding swallowing function and the effects of different modifications, including carbonated thin liquid (CTL). Additionally, a repeated measures quantitative retrospective analysis has been performed comparing 1) thin liquids; 2) thickened liquids and 3) CTLs, with regard to the quantitative variables 1) pharyngeal transit time (PTT); 2) pharyngeal retention and 3) tracheal penetration.

In all, 40/48 (83%) of the patients had a swallowing dysfunction, which was confirmed on videofluoroscopy, with 34/40 (85%) patients having a pharyngeal-type dysfunction. A total of 14/40 (35%) patients with an objective swallowing impairment did not have any subjective swallowing symptoms. Out of the patients with swallowing dysfunction, 87% had an overall improved swallowing function with carbonated liquid. PTT for carbonated liquid (median 633 ms, interquartile range [IQR] 516-786 ms) was quicker than for thin liquid (760 ms, IQR 613-940 ms, P=0.014) and thickened liquid (880.0 ms, IQR 600-1,500 ms, P<0.001). No significant effect was seen in residue or penetration.

The majority of patients with DLB or PDD had a swallowing dysfunction, sometimes without subjective swallowing symptoms, which improved with carbonated liquid. This highlights the importance of investigating patients with videofluoroscopy and to carry out a prospective interventional study to further evaluate carbonated liquid, also addressing the effects on quality of life, aspiration and mortality.

“Managing Advanced Parkinson’s” – Professional Caregiver Training Notes

There was a training program called TULIPS, designed for professional caregivers (such as nurses in nursing homes) who have clients with Parkinson’s Disease. The program is being revised and is no longer available. But we located an old copy.

Brain Support Network volunteer Denise Dagan recently looked over the TULIPS training for “Managing Advanced Parkinson’s Disease” as the diseases in our community are more similar to advanced PD than early or middle-stage PD.

Here are Denise’s notes from the training. Interspersed in brackets are a few comments from Denise, whose father had Lewy Body Dementia.


Denise’s Notes from

Managing Advanced Parkinson’s Disease
TULIPS: training for better Parkinson’s care
Struthers Parkinson’s Center, Minneapolis, MN


Section 1 – Planning Ahead

Create back up plans for what to do:
– if you have an urgent errand
– if you need home maintenance or repair
– if you become ill
– if your loved one becomes ill
– if you both become ill.

[This is the question we posed to my Mom, “What if you wake up with the flu and can’t help Dad with anything, even for just one day?” She didn’t have an answer and that allowed us to move forward with hiring in-home care.]


Section 2 – Acknowledging Changing Roles and Relationships

– Maintain intimacy through touch, conversation, shared times and humor.
– When communicating becomes difficult for both speaker and listener, set up hand signals or other gestures to reply to yes/no questions.
– A speech-language pathologist may provide additional suggestions to enhance communication.


Section 3 – Deciding Where to Live

Remaining in Your Own Home:
– Will a ramp be needed for outside access?
– Do floor surfaces easily accommodate wheelchair transport?
– Are the bedroom and bathroom accessible?
[Have an occupational therapist perform a home assessment and make suggestions about accessibility and safety.]
– Attractive bins or baskets will disguise needed equipment while maintaining appealing surroundings.

Moving to a New Home:
– Consider both present and potential needs, including help with meal preparation, medication set-up, personal care and/or complex medical management. Find out how much these services cost [either in-home or if you are researching a facility].
– Investigate facilities, comparing services and prices, available staffing assistance and experience with caring for those with Parkinson’s disease.

Creating Comfortable Surroundings:
Wherever you live your surroundings should be comfortable, functional, and relaxing. Nobody wants to spend time in an institution
– Consider a pleasing fragrance.
– Include meaningful objects, mementos, achievements, photographs or family, friends, vacations, pets, etc.
– Bring nature indoors for those who cannot go outdoors frequently. Plant a garden or hang a bird feeder where they are easily viewed.
– Play favorite music to set a mood and facilitate conversation.
– Use soft fabrics and blankets to appeal to the touch.
– Connect through a warm soak, followed by a hand and/or foot massage.


Section 4 – Caregiver Self Care

– Learn proper techniques to prevent injury during caregiving responsibilities. [Especially to protect your back.]
– Write dates you need respite support on a calendar and ask those who offer help to “sign up” for one or more of these dates.
– Learn about respite care options through family, friends, neighbors, friends, faith communities or other community services. Investigate adult day programs, respite volunteer programs, or facilities that offer short-term stays in the event of caregiver vacation, illness, or need for time away. Network with other caregivers or visit with a local social worker or senior services agency to identify available options.
– Avoid negative people and unrealistic expectations.


Section 5 – Assisting Movement

Someone with Parkinson’s disease may require assistance at one time of day, while being independent another time. Offer assistance as needed. Consider making an appointment with a physical or occupational therapist who can offer proper training for caregivers, suggest appropriate aids and instructions for use, and make referrals to additional community resources.

– Before starting to move, a gentle rocking or rolling motion will help stiff muscles to relax. Avoid quick, pulling, or jerking movements.
– Offer hand-over-hand assistance as needed.
– A transfer belt around the waist provides the caregiver with a firm grasp and added stability when assisting with walking or transfers.
– Coordinate efforts by arranging a signal (i.e. “1-2-3 stand”) when working together. Count slowly and give adequate time to respond.
– Transfer “pivot discs” may be appropriate for those who have difficulty turning feet when moving from chair to bed or toilet. Visit a therapist for instruction on proper use.
– Mechanical lifts may be used for those unable to bear their own weight during transfers.
– Limit conversations when moving to allow greater focus on walking or transfers.
– Use color contrast when choosing equipment (i.e. install a white grab bar on a dark colored wall) for potential vision changes.


Section 6 – Providing Mealtime Assistance

– Avoid tough, dry, or crumbly textures.
– Small, more frequent meals may be better for those with low blood pressure, fatigue, or who note feeling full quickly.
– Alternate between liquids and solids at mealtime.
– Allow adequate time for chewing and swallowing.
– Offer ice chips or lemon ice to aid swallowing.
– Give medications in applesauce to make swallowing pills easier.
– Do not feed, offer fluids or give medications when someone is lying down.
– Raise height of tray or plate to make eating easier, especially for those with neck immobility or vision changes.
– Consult a speech-language pathologist if coughing, choking, or recurrent lung infections occur.
– Feeding tubes may be considered for those with severe problems, but should be carefully considered with the individual, family and the health care team.


Section 7 – Dental Care

– Use an antiseptic mouthwash twice daily to decrease plaque and kill bacteria.
– Use an electric toothbrush and toothpaste.
– Dairy products and sugary foods may increase drooling.


Section 8 – Toileting

Bladder Changes:
– Stay well hydrated.
– Allow plenty of time to use the toilet.
– Work with a physical or occupational therapist to learn ways to help the person with Parkinson’s transfer to the toilet and avoid injury.
– A pad placed inside an incontinence brief adds extra absorbency.
– Use disposable or washable pads on the bed to protect the mattress and reduce laundry.
– Use a urinal (available for both men and women) bedpan, or bedside commode to reduce bathroom trips at night.
– Condom catheters are a user-friendly solution for urgency, frequency, and incontinence.
– Indwelling catheters may be placed in those with more significant bladder problems. Ask your doctor.

Managing Constipation:
Try these steps and contact your nurse or doctor if bowel movements do not occur at least every 3 days.
– Increase fiber and fluids.
– Try more regular activity (position changes and/or exercise).
– Use over-the-counter stool softeners, as needed.


Section 9 – Skin Care

As persons with Parkinson’s disease age, their skin may become fragile and prone to break down. Suggestions to help prevent pressure sores and infection include:
– Change position every two hours.
– Massage lotion into the skin to prevent dryness and improve circulation.
– Be observant for redness, blisters, or open sores. Report skin changes promptly to prevent a more serious problem.
– Plastic coating and tapes from incontinence products can cause irritation. Avoid contact with the skin.
– Use heel/elbow protectors for added skin protection.
– If in a wheelchair, obtain a cushion to lessen the risk of getting a pressure sore.

When bathing:
– Make sure skin folds are thoroughly washed and dried.
– Consider a sponge bath for those with limited mobility or unsafe transfers to the tub or shower.
– A home health aide can offer bathing assistance if this task becomes too difficult or time consuming for a family caregiver.

When in bed:
– Change clothing or bed linens more frequently if increased sweating is a problem
– Use an “egg crate” or alternating pressure mattress to help prevent skin pressure when in bed.


Section 10 – If Someone Falls

– Work with a physical therapist to learn safe and proper techniques to help someone get up from a fall.
– Do not hurry to get up. First, check for injuries. Some people need to rest before attempting to rise.
– If the person who fell is unable to get up, make him/her as comfortable as possible until help arrives.
– If able, scoot to a heavy piece of stable furniture, then move onto hands and knees before attempting to get up.
– Consider using knee or elbow [or head?] protectors for those having frequent falls.
– Consider special clothing with added cushion over hip joints.
– Create a “back up” plan for assistance with rising. Do you have a cell phone, medical alert system, family member or neighbor?


Section 11 – Thinking changes

Not all people with Parkinson’s disease develop severe thinking changes, which can include increased forgetfulness, confusion, compulsive behaviors, paranoia, anxiety, or personality changes. Promptly report any new or sudden changes in thinking or behavior to your health care team. Medications may need adjusting or medications may be prescribed for depression, declining memory, or hallucinations. Seek counseling, if needed.

Thinking changes can worsen when someone is ill, hospitalized, or in an unfamiliar environment.

Provide adequate time to allow response to questions or comments to maintain dignity and self-esteem.

What to Say:
– Provide simple 1-step instructions. Too many words can be overwhelming.
– Repeat instructions for those with memory problems.
– Avoid confrontation. Telling someone who is confused or having hallucinations that they are wrong usually makes them more upset.
– Speak in reassuring tones and try to divert their attention from the situation.
– Avoid using negative humor or sarcastic remarks which may be misinterpreted.

Things to Do:
– Set up clothing or toiletries in order of use.
– Establish a daily routine and stick to is as much as possible. Use a calendar or white board to provide reminders.
– Avoid multiple conversations or activities at the same time. This may add to confusion and anxiety.
– Speak face-to-face.
– Be tolerant of remarks or actions that may be uncharacteristic of previous personality of temperament.
– Reduce unrealistic expectations.
– Register for the “Safe Return” program sponsored by the Alzheimer’s Association (alz.org), which identifies those who become lost or separated from their caregivers.


Section 12 – Ideas and Suggestions for Activities

– Game shows, sharing a crossword puzzle, watching a nature or history program on TV.
– Provide videos or books on art, travel, architecture, or animals. For those with vision changes, try books on tape or CD.
– Find ways in which a person can participate in familiar activities. (i.e. give a hobby fisherman a tackle box to organize – remove the hooks, or have a home maker fold laundry or wipe counters)
– Petting, grooming, or playing with pets provides companionship, regular touch, physical and mental stimulation.
– Invite visits from relatives, friends, and neighbors.
– Attend an adult day program.
– Maintain connections with your faith community, read daily devotions or other meaningful passages, and speak with clergy.
– Set up a “relaxation station” with headphones to play nature sounds or soft music to decrease restlessness or anxiety.
– Schedule rest periods throughout the day, but avoid excessive daytime sleeping.
– Exercise! If following instructions is not possible, throw a ball or play balloon volleyball.
– Assist with a few extra arm & leg motions while dressing, bathing or other cares for more exercise.


Section 13 – Choosing a Wheelchair

Schedule an appointment with an occupational or physical therapist to find out which chair is best for individual needs. Visit a medical supply store prior to purchase. Check with your insurance to find out what type of chair is covered.

– A lightweight chair is easier to lift in/out of a car.
– A reclining chair back is helpful for those with posture changes or low blood pressure, or who needs to rest during the day.
– Footrests are important, especially when a caregiver is pushing the chair.
– Elevating leg rests may be more comfortable.
– Desk-style arms may allow easier positioning at a table for eating and other activities.
– Bolsters may improve sitting posture in the chair.
– Obtain a cushion that offers a firm sitting base and skin protection.
– ALWAYS lock wheelchair brakes prior to transfers. Clearly mark brake levers with colored tape for easier use.


Section 14 – Pain Control

– Report pain promptly to the health care team. Medication adjustment may help reduce excessive stiffness and/or muscle cramping.
– Typically, over-the-counter pain relievers can be safely used with Parkinson medications. Confirm with your physician.
– Warm packs may aid in pain control. Avoid electric heating pads, which may burn. Microwaveable or air-activated heat wraps are safer.
– Pain from falls or other accidents may be better controlled with ice packs to reduce swelling.
– Massage can aid circulation and decrease soreness.
– Use cushions as needed for comfort and support. Avoid using too many pillows, which contribute to a flexed posture.
– Increased wandering, agitation, or unexplained crying in those with dementia can be a sign of pain.
– Visit a physical therapist for specific pain evaluation and additional recommendations.


Section 15 – Approaching End of Life

Do Not Resuscitate (DNR):
There should be a frank and honest discussion about what should be done in the event of a life-threatening emergency. A DNR order means that no lifesaving techniques will occur in the event of the loss of heartbeat and/or breathing. These wishes must be declared to a physician and signed documentation must be completed. A copy must be shown to emergency personnel. A “living will” alone is often not enough to ensure these wishes are carried out.

Choosing Hospice Care:
Hospice is available to anyone with limited life expectancy and emphasizes comfort care rather than aggressive treatment. Quality, rather than quantity, of life is stressed for both care receiver and care giver. Emotional, spiritual, and practical support is provided based on individual needs. Professional medical care continues throughout.

– A physician referral is required.
– Check to see if hospice is covered by your insurance. [Hospice is covered by Medicare.]
– There are many hospice services in urban areas to choose from.

[Prior to hospice care, ask your doctor about palliative care. Palliative care focuses on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Medicare Part B may cover some palliative care treatments and medications, including doctors visits, nurse practitioners, and social workers.]