CurePSP hosted a webinar last year that focused on “patient-centered multidisciplinary management” of chronic disorders. While the webinar was directed to families dealing with progressive supranuclear palsy (PSP), multiple system atrophy (MSA), and corticobasal degeneration (CBD), the concepts apply to all situations, regardless of disorder. Very little about this webinar was specific to PSP, MSA, or CBD.
The speaker was Becky Dunlop, RN, with Johns Hopkins Parkinson’s Disease and Movement Disorders Center.
You can find an archived recording of the webinar here:
Your PSP, CBD, MSA Management Plan: Resources and Services
Speaker: Becky Dunlop, RN, Johns Hopkins
March 6, 2016
Brain Support Network volunteer Denise Dagan listened to the webinar and said: “[Becky] really paints a comprehensive picture that there is so much you can do to continue living even after what seems like a catastrophic diagnosis, if you’re willing to learn, and can surround yourself with supportive people.”
As part of her hopeful message, Becky shared five “E’s” of empowered living with chronic illness:
* Education: learn about a disorder
* Expanding and building your team
* Effective communication: utilize speech therapy, communication boards, etc.
* Effective coping
* Exploring options: find a movement disorder specialist, participate in research, etc.
In terms of effective coping, these suggestions were offered:
* psychiatric services, professional counseling, social work services
* stress management
* meditation or exercise
* development of a support network
* support groups: find or start one
* education programs
* develop and maintain your humor
* pet therapy
* maintain faith and hope
* get your rest
* maintain a healthy perspective
* find beauty in life
* don’t be afraid to ask directions
* recognize and celebrate your role and define the unique you
Denise’s notes about the webinar along with the question-and-answer session are below. There’s more about PSP in the Q&A than there is in the presentation itself.
Becky referred to the WeMove organization. This organization hasn’t been in business for several years so I deleted that reference.
Your PSP, CBD, MSA Management Plan: Resources and Services
Speaker: Becky Dunlop, RN, Johns Hopkins Parkinson’s Disease and Movement Disorders Center
March 6, 2016
* Comprehend the need for patient centered multidisciplinary management of PDP, CBD, and MSA
* Identify available resources for individuals living with PSP, CBD, MSA and their families
Patient Centered Care:
* All these individuals strive to identify and meet the needs of the patient
* The Institute of Medicine (2001). Crossing the quality chasm: A new health system for the 21st century.
* “Providing care based on patient’s needs and expectations is the key attribute of quality care.”
Bergeson & Dean Commentary on Patient Centered Care in JAMA (2006)
* Ensures access and continuity (access to psychiatry, PT, and other services, and continuity among and between service is ensured)
* Provides opportunities for patient and family participation (key take-home point of this presentation)
* Supports self management
* Coordinates care between settings
Individualized therapy involves not only the pharmacological, but also the appropriate use of allied health professionals, assistive technologies, educational and support resources along the chronic illness continuum.
The Es of Empowered Living with PSP, CBS, MSA. Identify strategies in each of these areas that will help patients and families.
* Expanding & building your Team
* Effective Communication
* Effective Coping
* Exploring Options
Knowledge is Power
Lay Education / CurePSP offers
* Network of education and support groups
* Numerous publications
* Web resources
* Conferences and Symposia
Highlights of Lay Educational Resources
* Webinars on specific topics such as incontinence, aphasia, advance directives
* Resources like:
– National Institute for Neurological Disorders and Stroke http://www.ninds.nih.gov
– Lee Silverman Voice Treatment website
Expanding and Building Your Team:
* Lay people (family, friends, disease community/support group, church)
* Healthcare professionals including:
– Primary Care Physician
– Neurologist, especially a movement disorder specialist
– Cardiologist (orthostatic hypotension)
– Ophthalmologist (double vision, difficulty focusing)
– Psychiatrist (depression, anxiety)
Visual Disturbances (Importance of Ophthalmologist)
* Dry eyes (natural tears and lubricants)
* Difficulty looking down (prismatic lens)
* Difficulty with eye movements, focusing
* Double vision (covering one side of glasses with tape)
* Sensitivity to light (sunglasses or tinted glasses)
* Blepharospasm (Botox around the eye muscle)
Psychiatric Issues (Importance of Psychiatrist, although PCP could help with some of these as well)
* Inappropriate laughter or crying
* Impulse control problems (difficulty realizing limitations caused by disease so trying to do what they’ve always done may risk falling)
Role of Allied Team Members:
* Physical Therapy
* Speech Therapy
* Occupational Therapy (managing home safety, managing patient’s ability to participate in every day activities safely)
* Social Workers
* Maintain mobility
* Prevent falls
* Suggest walker and wheelchair as appropriate
* Instruct in safe transfer and walking
* Instruct caregiver to maintain caregiver health
* Communication boards (www.givinggreetings.com/olderadults.html)
* Encourage patient to speak slowly
* Allow adequate time for response
* Prevent social isolation
Speech Therapy / Swallowing Issues:
* Place the chin in a downward or neutral position to close off the airway during swallowing
* Learn the Heimlich maneuver for use in the event of choking. (All family members.)
* Have suction equipment available for clearing the airway at some point in the disease.
* Thickening agents for liquids
* Consideration of a feeding tube (Verdun, 2000)
Example of a communication chart. The person having communication difficulties just has to point. [Editor’s note: see webinar]
* Home modifications
* Home safety
* Unanticipated weight loss
* Maintaining a healthy weight
* Management of constipation
Developing your Personal Support Network:
* Educate family and friends
* Identify resources thru church or social networks
* Devise a plan by identifying needs
* Ask for help
* Consider creating an online care network. www.caringbridge.org is a central place to keep family & friends up to date and ask for help.
Some Resources to aide Coping:
* Psychiatric Services (caregivers sometimes need an objective, trained person for our own needs)
* Professional Counseling ( “ )
* Social Work Services ( “ )
* Stress management (to improve quality of life)
* Meditation or exercise (stress busters)
* Development of a support network (list everyone who is there to help you, and call upon them, even if its just one meal weekly)
* Support groups & education programs (learn from each other)
Develop & Maintain your Humor
She used to hand out Sunsweet Prunes because constipation is a common issue. Her motto was, “We keep you moving.”
Maintain Faith & Hope
Identify your faith community
Have hope knowing there are tools out there to help you. Don’t lose sight of that.
Get your Rest
It supports your stamina.
Find or Start a Support Group
Maintain a Healthy Perspective
When you’re living with a chronic disease, take time to look up and experience the larger world to gain perspective.
Find Beauty in Life
View the sea or mountains, buy yourself some flowers, etc.
Don’t be afraid to Ask Directions
If you don’t stop asking, people will be available to help and guide you.
Recognize and Celebrate your Role and Define the Unique YOU
Caregiver Health is VITAL to the health of the patient !
The first rule of caregiving is to take care of yourself. So explore all these options…
* Movement Disorder Specialists over a neurologist
* Participation in research
* Other specialists (urinary frequency, call a Urologist / unmanaged constipation, call a GI / depression not well treated, modify meds.)
* Occupational Therapy Assessments/Driving Assessments/ Home Safety & Fall Prevention
* Caregiver Resources (National Caregiver Resources, CurePSP)
* Assistive Devices
* Consider Palliative Care and Hospice
U-Step walker has red laser line between back wheels to prevent freezing.
Home environment. Get an OT consult.
* Considerations for safety:
– Grab bars in bathroom (by toilet, tub, shower, sink)
– Railings on stairs/steps
– Adequate lighting
– Eliminate fall hazards: Throw rugs, toys, clutter
– Entrance ramp
Gizmos and Gadgets
– Shoehorn with a long handle (medical supply stores)
– Bedrail that slides under mattress and helps get out and reposition themselves in bed. (Must extend 3-4 feet under mattress for safety.)
– Swivel Seat (getting in/out of a car. Plastic bags can work just as well on fabric car seats.)
– Ursec Urinal (this is a travel variety. Good for preventing spills.)
More Gizmos and Gadgets
Rollator (consult w/a PT before purchasing one. Having a seat can be good on long outings.)
Stand Ease (helps one to stand from a low seat)
Turn Ease & Car Ease (help get in/out of car or bed. Silk sheets and/or PJs can make it easier to reposition in bed)
Sock Aide (helps you put on a sock independently)
Complementary Therapies provide enjoyment and an outlet with a person living with a long term disorder. Improves quality of life.
* Music therapy
* Art therapy
* Therapeutic horticulture
* Animal-assisted therapy
* Spiritual care
* Massage therapy
* Healing touch
That elusive spirit in the heart of man,
With it, desires and fears will withstand.
When present and believed within the soul,
The thread of hope will keep you whole.
by Becky Dunlop, RN (2009)
What county, state or federal agencies can help?
Contact your local Area Agency on Aging. They are charged with helping individuals navigate the healthcare system when they are 60 years +. If younger approach the state disability services agency. Nurses and social workers at those agencies can provide direction.
Differences between Parkinson’s & PSP?
Main difference is Parkinson’s being a chronic progressive disease with good medicines for symptoms for many years so people are able to live full lives. Advanced Parkinson’s disease is similar to PSP. With PSP an individual will progress chronically and movement becomes worse because there are no medicines to reduce symptoms. Falls and immobility increase over time. In advanced Parkinson’s medicines don’t work as well because of brain cell loss.
As PSP progresses is it normal for the patient to become increasingly confused in unfamiliar surrounds outside the home? What can a caregiver do to lessen the impact on the patient?
Yes, that is normal. What a caregiver can do is create a routine and repeat verbally and in writing to the patient what’s going on. Mainly, let them know what you’re going to do at the beginning of the day. This may limit some of their anxiety and may help them be the best they can be. Remember these individuals are not dealing with the same neurologic capacities we are as healthy people, therefore any change in routine is anxiety provoking and a disruption to them. Anything you can do to aid and eliminate that will help them.
My husband can hear sound, but does not always understand what is being said. Communication has become extremely difficult. Is there anything to aid with this situation?
When someone can’t sort out verbal communication, it is very challenging. Keep it simple. Keep it slow. Repeat yourself. Give him time to process. In many of these neurodegenative disorders people have bradyphrenia (slow thinking). Their processing ability is much slower than a healthy person’s. They may feel as though they understand what’s going on around the, but can’t get it out because what’s going on around them is happening so quickly. Anything we can do to slow it down, simplify it, repeat, and give them time to reflect, will give them time to help that communication.
What palliative care services can be helpful to PSP patients?
Palliative care services may be engaging a home care agency that offers palliative care. Identifying a depression may be helpful. Identifying changes in vision. Sometimes when a person has excessive saliva we provide medication to dry that and help them be more comfortable. The whole aim is not to cure, but to keep the person as comfortable as possible, given the circumstances.
Will a discussion of facing the end worsen the depression of the patient?
Depends on the patient. Many people want to know what lies ahead. Even people with dementia, people can be concerned. Reassuring someone and telling them the truth, but that everyone is there to help them is a comfort. Facing the end may help the individual and allay their anxiety. It may help them build their coping skills, knowing what to expect.
My PCP is treating my urinary frequency. Should I see a urologist?
Sure. A specialist may see something the PCP doesn’t know about. Two heads are better than one.
Looking for a support group?
Contact CurePSP even for world-wide locations.
When should you consider palliative care?