Here’s a very helpful article from today’s STAT News (statnews.com) about what 23andMe’s genetic reports can and cannot show.
Before you send your spit to 23andMe, what you need to know
By Sharon Begley
April 7, 2017
Here’s a very helpful article from today’s STAT News (statnews.com) about what 23andMe’s genetic reports can and cannot show.
Before you send your spit to 23andMe, what you need to know
By Sharon Begley
April 7, 2017
The FDA is now allowing 23andMe to sell genetic tests again. I don’t believe the test looks for any alpha-synuclein, MAPT, or other tau-related genetic mutations so any genetic test from 23andMe won’t have any bearing on the disorders with the Brain Support Network community. However, this is still big news for the genetic testing world. According to the article, customers have to specifically ask to be tested for Alzheimer’s and Parkinson’s risk.
A wife whose husband has Parkinson’s Disease blogs under the name “The Perfect Servant.” She blogs on a site called “Medium.” On that site, her name is “The Perfect Servant-nope.” (You might want to follow her there – [email protected].)
Another site, “The Caregiver Space,” picked up today’s blog post about “shapeshifting,” where her husband has transformed into a patient and she has transformed into a caregiver.
Here’s a link to the blog post:
Shapeshifting: Husband to patient, wife to caregiver
by The Perfect Servant
Apr 6, 2017
The Caregiver Space
Many of her feelings will be familiar to us all.
Last week, the Michael J. Fox Foundation (michaeljfox.org) hosted a one-hour webinar on complementary and alternative medicine for Parkinson’s. Actually, it was a re-broadcast of a webinar they presented in May 2015.
Complementary and alternative medicine (CAM) is the term for medical products and practices that are not part of standard care. Topics covered in the webinar include acupuncture, herbs, vitamins, and diet.
You can find a link to the webinar recording here:
The webinar featured a Parkinson’s patient, Gary Vallat; a neurologist, Danny Bega, MD, from Northwestern; and a research scientist, Laurie Mischley, ND, MPH from Bastyr University.
Brain Support Network volunteer Denise Dagan listened to the webinar recently. Here are her big takeaways, which apply to the disorders in our BSN group as well:
Stress exacerbates symptoms of Parkinson’s disease. It is, therefore, generally agreed that complementary therapies that reduce stress alleviate Parkinson’s symptoms. This can include massage, acupuncture, yoga, meditation, etc.
Dr. Bega discussed a small study where half did hatha yoga and the other half did conventional resistance exercise (weights). Both groups’ mobility benefited as well as non-motor symptoms (mood, anxiety, sleep, quality of life).
People reporting loneliness are those doing the worst, symptomatically. Those staying active and social have a better quality of life. Support groups should be a part of the medicine to treat PD.
There is no definitive evidence showing the benefit of one vitamin or supplement, just some animal and lab indicators that have been disappointed when applied to humans. Best course is to minimize inflammation, maximize nutrient density, energy production, and eat for a healthy microbiome (intestine/gut). That means eat healthy oils (coconut and olive), fish (omega 3 fatty acids), nuts and avocado, colorful fruits and vegetables for their antioxidant properties, and yogurt (minimal dairy).
PD may be, in part, a metabolic disease. Alzheimer’s was recently termed, “Type III Diabetes,” because the AD brain is not effective at turning glucose into energy. PD is similar when given a bunch of carbs, so eating more healthy fats and proteins makes PD brains more energy productive. That could go a long way in fighting fatigue, a common symptom of PD.
Denise’s full notes are copied below.
What’s the Alternative? What to Know about Complementary Medicine for PD
Webinar Host: The Michael J. Fox Foundation
May 21, 2015 – rebroadcast March 17, 2017
Dave Iverson interviews: Parkinson’s patient, Gary Vallat; neurologist, Danny Bega; and assistant research scientist, Laurie Mischley.
What we’ll cover today:
* What do we mean by complementary and alternative medicine?
* What practices may help manage Parkinson’s symptoms?
* What do we know about the effects of supplements on Parkinson’s?
* Can a specific diet make a difference?
* Why is it difficult to study the effects of alternative approaches?
What do we mean by complementary and alternative?
Complementary and alternative medicine (CAM) is the term for medical products and practices that are not part of standard care. More current thinking is ‘integrative medicine,’ which is using what works, regardless of the terminology.
– Complementary medicine is used together with standard medicine.
– Alternative medicine is used in place of standard medical care.
– These methods still should be evaluated for safety and efficacy.
There are five domains of CAM:
* Biologically based approaches (diets, herbs, vitamins)
* Manipulative and body-based therapies (massage, chiropractic, osteopathy)
* Energy therapies (magnets, Qigong)
* Mind-body interventions (yoga, spirituality, relaxation, meditation)
* Alternative medical systems (homeopathy, naturopathy, Ayurveda)
Gary Vallat found benefit from acupuncture and when that resulted in immediate response. APDM has a wearable device that shows measurable tremor which has shown marked reduction for Gary during acupuncture, sleep, and in a sweat lodge.
What do we know about the efficacy of acupuncture?
* It is better studies than other CAM, some with placebo controls.
* It is safe.
* Anecdotal reports are positive.
* Effect on mobility, rigidity, tremors are mixed because those with placebo controls showed less measurable results which could be due to insensitive measuring devices.
All results show short term benefit.
How can Meditation, Yoga and other Activities Help Manage PD?
* Practices that help alleviate and manage stress – which exacerbate Parkinson’s symptoms – can help ease symptoms.
* Activities such as meditation and yoga can also help reframe the impact of symptoms, allowing a level of acceptance.
* These methods encourage personal empowerment.
* Group activities and socialization can discourage isolation.
* Yoga has shown impact on mobility, anxiety and quality of life.
* Creative pursuits – painting, writing, dancing, playing music – are also stress relieves and can boost self-confidence.
Stress increases PD symptoms, so anything that relaxes you and relieves stress will relieve PD symptoms.
Laurie Mischley cites a study of heart rate variability being correlated with non-motor symptoms (notoriously under treated by conventional therapies – ex: OH, saliva, bowel issues). Studies show improvement of heart rate variability during tai chi, yoga, and meditation. That means technology is catching up with anecdotal evidence.
Dave Iverson asked about wearable devices providing a continuous source of physical information. Laurie Mischley says technology may not be the best source of efficacy. She is working on a patient-reported outcome measure (33 questions) about bowels, handwriting, sleep, etc. because they are better at assessing the severity of their disease than any scales or tools currently available.
Dave Iverson asked about the benefits of yoga from Danny Bega’s research. He had 20 participants with PD. Half did yoga twice a week for 12 weeks. The other half did conventional resistance exercise (weights). They were looking at effect on both motor & non-motor symptoms. They found benefit in both groups in terms of mobility, as well as non-motor (mood, anxiety, sleep, quality of life).
A viewer asks if it must be a particular type of yoga. Danny Bega says they used and suggests Hatha Yoga because it is easier and can be adapted by using props, chairs, etc. for PD. Don’t use hot yoga because of blood pressure issues in PD causing dizziness or lightheadedness.
Dave Iverson asked Gary Vallat about the importance of activities which encourage personal empowerment and discourage isolation. He does find a personal tendency to withdraw but committing to exercise and social commitments draw him out and keep him engaged in social ways and moving. He also works with a physical therapist and weight training exercise.
Laurie Mischley collected online data from 750 people around the world called CAM care in PD hoping to gather data about the effect of diet, but received many reports of loneliness. People reporting loneliness are those doing worst, symptomatically. Those staying active have a better quality of life. Support groups should be a considered part of the medicine to treat PD.
What should we know about dietary supplements?
* You shouldn’t self-medicate: Talk to a physician or dietitian about supplements you’re interested in.
* It may not be a one-size fits all: Just like traditional medications work differently for people, supplements may have varying levels of benefit.
* There can be side effects to natural medications: Too much of something natural may cause adverse effects.
* Natural supplements may have a place in your treatment regimen: With proper precautions, some additions may be beneficial.
> Case study: Antioxidant coenzyme Q10 showed no clinical benefit in a Phase III study.
CoQ10 was funded because there was a lot of data showing potential benefit. One Phase III study was pulled as non-beneficial, but the methodology should be reviewed and FIA measure of CoQ10 shows 30% of people with PD have deficiency. Among the people deficient, would they benefit from CoQ10?
It seems everything studied for disease modification have failed. Possibly because disease modification trials are restricted to people who are not on dopamine, but if we know the brain needs dopamine it doesn’t make sense to restrict access to something they know is needed for proper function and measuring if something else makes a difference. You can’t keep a boat from sinking if it has a lot of holes in the bottom, by plugging just one hole. Maybe dopamine with CoQ10 would show benefit.
What do we know about nutritional supplements, like vitamins?
We know very little from actual evidence. There is some animal data. Turmeric slows deterioration of cells. Similar things have been shown with coenzyme Q10, vitamin E, and creatine, but there’s a difference between animals and humans, so benefit in humans has been disappointing.
A healthy diet in general but with focus on some of what we know causes PD, like inflammation in parts of the brain, and free radicals that cause cell damage and antioxidants that bind to those and keep them from causing damage. So beneficial fats, colorful vegetables and fruits, but that’s good for everybody.
Can diet impact Parkinson’s?
What do we know about:
* Anti-Inflammatory Foods
* Gluten and Carbohydrates
> Speak with your physician or a dietitian before changing your diet.
Gary Vallat is gluten free, sugar restricted, added antioxidant supplements, but doesn’t know what’s helping his PD, but they are healthful.
Danny Bega recommends for everyone staying away from pro-inflammatory foods like simple carbs, red meat, hydrogenated oils. What we don’t know is if that contributes to inflammation causing damage in PD, but it makes sense to reduce those foods in case it does. Reducing those foods is a healthier diet which should increase energy and reduce fatigue, which is a big issue in PD. Not all dairy is bad, but high fat dairy can be inflammatory. Dairy with vitamin D is preventative for fractures in falls.
Laurie Mischley says it is known that fruits, vegetables, fish, and beans that reduce risk of PD, but dairy (not yogurt!) increase risk of PD. Eating dairy will not accelerate PD. The importance of the micro biome and gut health may reduce risk of PD, reduce symptoms in PD, and improve resistance to everyday illness like colds and flu. Feeding your micro biome nutrient dense, plant based foods keeps your micro biome healthy. Also, abdominal obesity and micro glial activation in the brain is easily modifiable by eating nutrient dense foods.
35 years ago PD brain autopsies showed a deficiency in the brain’s main antioxidant, glutathione. Since, we have learned in animal and laboratory models low glutathione leads to mitochondrial dysfunction, free radicals, loss of dopamine, and cell death. Maybe we should be giving people with PD glutathione, but it is not orally available. In 1996 Italy did a small, unblinded study giving intravenous glutathione twice daily for 30 days and found 42% reduction of PD symptoms that lasted a couple months past the last dose. 2009 US researchers tried to duplicate this with minimal effect. Laurie is using intra-nasal glutathione in a current study as cheaper, and easier to administer with good results and some clinical benefit. MJFF is funding 2 follow up studies showing target validation and moving toward phase II trials.
Viewers are asking about fava beans and mucuna (Indian legume) because they contain natural levodopa. Anecdotal reports of improved ‘on’ time after eating fava beans or mucuna. We don’t know much about how well they penetrate into the brain and how to adjust doses as well as conventional levodopa with carbidopa. They have similar side effects (‘on’ dyskenesia) to Sinemet because of the similarity of effective ingredient. With fava beans, especially with a mediterranean lineage, because of fava-ism which is a hemolytic anemia that can be life threatening.
Marijuana benefits to PD? What part? Dosage?
Interestingly, the receptors for cannabis are the 2nd most populated receptors in our brain because we make our own cannabis so the potential for effect on all different parts of our brain is robust, particularly in areas involved in PD and motor symptoms. The question is what other effects would you have on non-motor symptoms, balance, anxiety, etc.
There as lot of research showing this deficiency is prevalent in America, especially among big coffee and alcohol drinkers. There is a lot of interest in magnesium reducing leg cramping. Magnesium and lithium act similarly in the brain. Lithium is not an FDA nutrient, but humans do need a micro amount, which will also reduce leg cramping.
PD may be, in part, a metabolic disease just like Alzheimer’s is “Type III Diabetes” because the PD brain is not doing an effective job turning glucose into energy. PD is similar when given a bunch of carbs, so eating more healthy fats and proteins makes PD brains more energy productive.
Healthy fats are: coconut oil and olive oil because they are richer in omega 3 fatty acids and phenols. Nuts, avocado, fish/salmon. Stay away from partially hydrogenated, inflammation-causing oils.
Why is Research into these Methods so Difficult?
* Lack of financial incentive for pharmaceutical companies (into coconut oil, for example). $1.4million to bring a product to market, so pharmaceutical companies will not be researching anything that can’t be marketed.
* Competes for limited resources from government and non-profits. Research into non-market-able products and treatments will have to be funded by non-profit dollars.
* Difficulty of randomized, controlled trials for CAM therapies
* High placebo effect
* Can have very individualized regimens and effects
> CAM trials also face many of the same challenges traditional studies do: subject selection, recruitment and retention, compliance with regimen.
Gary Vallat has been keeping track of his symptoms since the beginning. His current chart is every half hour. He’s into this because he doesn’t have an objective measure of changes over any length of time, so having the recorded data gives him accurate information about changes for the better or worse.
My longtime friend Dan Brooks in Riverside reactivated his blog “We Will Go On” in 2016 and moved it to wewillgoon.com. Dan’s blog has the tagline:
Parkinsonism: Hard to Diagnose. Harder to live with.
A blog by a patient with Parkinsonism Plus Syndrome.
In 2006, Dan was diagnosed with multiple system atrophy (MSA), corticobasal syndrome (CBS), and progressive supranuclear palsy (PSP). As time went on, MSA became the most likely. It seems that CBS has come back into the picture, however.
Dan recently posted about the confusion over whether he has Parkinson’s Disease, CBS, and MSA. I’ve copied his post below.
Confusion Over Parkinson’s Contrasted with CBS and MSA
by Dan Brooks
Saturday, March 4, 2017
I have quite often discussed with some of you in the family, and various friends, about the difference between Parkinson’s Disease and the Atypical Parkinsonian disorders. I am going to give you a few points to chew on, knowing you are the best ambassadors we have for spreading the word about these rarer forms of Parkinsonism.
Parkinsonism is a condition in which signs and symptoms of Parkinson’s appear in the patient’s disease. Even though the person may not have Parkinson’s Disease, they have a brain disorder that causes similarly appearing symptoms, including tremors, balance problems, stiffness, walking difficulty and cognitive changes.
Parkinsonism appears with Parkinson’s Plus syndromes such as Multiple System Atrophy, Corticobasal Syndrome and Progressive Supranuclear Palsy. Since I was first diagnosed in 2006, the neurologist I saw for ten years thought that my condition was one of these three. As time went on, Multiple System Atrophy became the most likely. All three of these conditions are determined to be “probable” in life, and are confirmed after death through a brain tissue study.
Even though I have Parkinsonism it is not Parkinson’s Disease in the simplest form because the disease process in my brain is more involved than in Parkinson’s. I have Corticobasal Syndrome (CBS), and it is uncertain if it would be alternatively considered Multiple System Atrophy (MSA). These have overlapping symptoms and are best described as rarer forms of Parkinson’s.
Has much changed? Not really, except I have more clarity and certainty of the degenerative brain disease that has taken so much from our lives in the Brooks family. We are fortunate to have this increased clarity because the neurologist I have been seeing of late is a Movement Disorder specialist, which is a doctor of Neurology who specializes in all things Parkinson’s and Parkinson’s-like. She saw a clear indication in the results of my DaT Scan which demonstrated that I have Parkinson’s Plus, not simply Parkinson’s Disease.
Parkinson’s Plus has long been the understanding of my condition. I wrote about this in my book, I WILL GO ON: LIVING WITH A MOVEMENT DISORDER. The confusion arises because the word “Parkinson’s” appears in both descriptions of the diseases. Technically, they are different in that Parkinson’s Plus is a faster progressing disease and causes more disability sooner.
That is why I was unable to continue driving and had to retire at 51. I have difficulty walking with coordination and I struggle with choking on food and liquids. I also have digestive, urinary, heart rate, blood pressure regulation and body temperature issues. These are not visible to friends and family so what appears to be a better day, could be a day I am having trouble with my blood pressure or having great difficulty coughing after drinking liquids.
I also have very abnormal horizontal eye movements which are caused by a loss of neurons in the area of the brain that controls eye movement. At times I see double as a result.
I am so glad that you are interested and are trying to grow in your knowledge. MSA is a disease I have been identified with for 10 years or more. I have CBS, but if it were to turn out to be MSA at some point, that would be a very similar prognosis. My greatest concerns are pneumonia, breathing constriction, and urinary infections. I do not have idiopathic Parkinson’s, but I do have a form of Parkinsonism, and much of the research being done for P.D. will have a benefit and weight heavily on the potential for discoveries that relate to PSP, MSA and CBS syndromes. I will always identify with my fellow patients who have Parkinson’s Disease, and the support groups for Parkinson’s are virtually the only in person, brick and mortar groups we can attend anywhere near the Riverside, CA area. As always, thanks for reading! — Patient-Online
“Supranuclear gaze palsy” (SGP) refers to impairment of horizontal gaze and/or vertical gaze. This symptom denotes “dysfunction in the connections responsible for conducting voluntary gaze commands to the brainstem gaze centers.”
As many of you know, SGP is a classic clinical feature of progressive supranuclear palsy (PSP). In fact, it is part of the diagnostic criteria for PSP. However, this symptom is not specific to PSP and can occur in many other neurological disorders, including parkinsonian conditions.
In this Washington University (St. Louis) study, researchers examined the clinical records of 221 parkinsonian patients who had visited the movement disorders clinic and who had donated their brains for research. [By the way, Brain Support Network has been responsible for over 350 brain donations — quite a bit more than the WashU brain bank.]
Of the 221 parkinsonian brains in their brain bank, 27 had supranuclear gaze palsy noted in the clinical records. The confirmed diagnoses of these 27 were:
* progressive supranuclear palsy (9),
* Parkinson’s Disease (10),
* multiple system atrophy (2),
* corticobasal degeneration (2),
* Creutzfeld-Jakob Disease (1), and
* Huntington Disease (1).
The researchers also looked at the 14 brains donated of those with PSP in their brain bank. Nine of the 14 had clinical evidence of SGP but five did not.
Curiously, their brain bank doesn’t have many dementia with Lewy bodies (DLB) cases because their brain bank has a bias towards movement disorders rather than dementia.
This paragraph about MSA is interesting:
“In a study of oculomotor function in MSA, Anderson and colleagues suggest that the presence of clinically slow saccades, or moderate-to-severe gaze restriction, implies a diagnosis other than MSA. In contrast, our data indicate that SGP can be seen in patients who have subsequent autopsy-confirmation of MSA at a frequency similar to that seen in PD. Cognitive impairment is an exclusion criterion for the diagnosis of multiple system atrophy (MSA), according to the second consensus statement. However, some patients with pathologically confirmed MSA have been reported to have dementia. Cykowski and colleagues have reported that the presence of Lewy body-like inclusions in neocortex in MSA, but not hippocampal alpha-synuclein pathology, was associated with cognitive impairment. We suggest that the association of SGP with MSA in some individuals provides further evidence for cortical pathology.”
The authors point out that other studies show that 90% of those with CBD develop SGP.
SGP is also reported in other disorders such as spinocerebellar degeneration, amyotrophic lateral sclerosis, Whipple disease, and Niemann-Pick disease type C.
I’ve copied the abstract below.
Parkinsonism Relat Disord. 2017 Feb 24. [Epub ahead of print]
Pathologic correlates of supranuclear gaze palsy with parkinsonism.
Martin WR, Hartlein J, Racette BA, Cairns N, Perlmutter JS.
Supranuclear gaze palsy (SGP) is a classic clinical feature of progressive supranuclear palsy (PSP) but is not specific for this diagnosis and has been reported to occur in several other neurodegenerative parkinsonian conditions. Our objective was to evaluate the association between SGP and autopsy-proven diagnoses in a large population of patients with parkinsonism referred to a tertiary movement disorders clinic.
We reviewed clinical and autopsy data maintained in an electronic medical record from all patients seen in the Movement Disorders Clinic at Washington University, St. Louis between 1996 and 2015. All patients with parkinsonism from this population who had subsequent autopsy confirmation of diagnosis underwent further analysis.
221 unique parkinsonian patients had autopsy-proven diagnoses, 27 of whom had SGP documented at some point during their illness. Major diagnoses associated with SGP were: PSP (9 patients), Parkinson disease (PD) (10 patients), multiple system atrophy (2 patients), corticobasal degeneration (2 patients), Creutzfeld-Jakob disease (1 patient) and Huntington disease (1 patient). In none of the diagnostic groups was the age of onset or disease duration significantly different between cases with SGP and those without SGP. In the PD patients, the UPDRS motor score differed significantly between groups (p = 0.01) with the PD/SGP patients having greater motor deficit than those without SGP.
Although a common feature of PSP, SGP is not diagnostic for this condition and can be associated with other neurodegenerative causes of parkinsonism including PD.
Copyright © 2017 Elsevier Ltd. All rights reserved.
PMID: 28256434 (see pubmed.gov for this abstract only)
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?
Last week in the Birmingham News, a journalist named Mike Oliver revealed that he was recently given a diagnosis of Lewy Body Dementia (LBD). He had previously written in September 2016 that his diagnosis was Parkinson’s Disease. But new symptoms pointed to LBD.
Mike uses the term “Lewy body disease” and describes the condition as being “like Parkinson’s and Alzheimer’s combined.”
“The disease works and presents like Parkinson’s. In both cases, these proteins kill neurons. It’s just that with Lewy body disease the proteins are killing neurons over a wider swath of the brain. … The big difference is that with Lewy body disease, the dementia comes early, sometimes before any movement disorders are noticed. With Lewy body disease, dementia is often accompanied by hallucinations and REM behavior disorder, which cause people to physically act out their dreams, hitting, kicking or talking.”
Here’s a link to the full article:
The bad news: I don’t have Parkinson’s.
By Mike Oliver | [email protected]
on February 20, 2017 at 12:04 PM
In May 2016, “Partners in Parkinson’s” (partnersinparkinsons.org – a partnership between the Michael J. Fox Foundation and a pharmaceutical company) hosted a conference in Oakland on PD. In the planning stages, I was asked to nominate a social worker for a panel. I recommended Marguerite Manteau Rao, LCSW, a long-time friend of Brain Support Network who is an expert in mindfulness and dementia caregiving. The panel that Marguerite participated in was focused on “strategies to help caregivers and their loved ones cope with a new diagnosis.” The discussion was recorded and the recording has just been posted online, finally.
To watch the 37-minute recording, visit the Partners in Parkinson’s video page, click on “You, Your Loved One, and Parkinson’s Disease,” and complete a short registration (name, email address, zip code). (Note that you can enter “fake” info.) Start here:
Partners in Parkinson’s
I watched the recording and believe it applies to those within Brain Support Network, even though we aren’t dealing with Parkinson’s Disease. Also, I think the suggestions given apply not just to the newly-diagnosed community. Of course I’m biased but I thought the best part of the video was Marguerite. She encouraged caregivers to prepare for a “marathon” by establishing both inner and outer resources. An inner resource mentioned is mindfulness. And outer resource mentioned is education.
Brain Support Network volunteer Denise Dagan also watched the video. She said that a few bits of advice stood out for her:
1. Resist projecting too far into the future. Worrying about what might happen adds unnecessary stress. To calm yourself in the face of frustration and stay grounded in “now,” learn mindfulness.
2. Having the attitude that you are care partners helps to maintain your individual identities and relationship before [a diagnosis]. Maintain separate activities and relationships around those activities helps with this, as well as reducing caregiver stress and resentment, and increasing healthfulness and energy.
3. Support ‘groups’ don’t have to be formal. One can get involved with the [disorder] community by taking exercise classes, volunteering for a clinical trial, or raising funds.
4. Exercise, exercise, exercise.
5. Consider a few counseling sessions for the tough issues, especially if a diagnosis has piled on top of unresolved issues.
6. Educate yourself about symptoms, medications, etc.
Here are Denise’s extensive notes from the video.
Denise’s Notes to
“You, Your Loved One and Parkinson’s Disease”
Partners in Parkinson’s
May 14, 2016, Oakland, CA
Panelists: Jenn Haraja (adult child caregiver), Jim (has PD) and Roberta (spouse caregiver) Hurt, Marguerite Manteau Rao (social worker)
Moderator: Dave Iverson
This 37-minute video is a panel discussion of strategies to help caregivers and their loved ones navigate a new diagnosis.
Dave started by asking Roberta about coping with Jim’s diagnosis.
It was not a surprise because the family suspected Parkinson’s Disease (PD) before his diagnosis. She has helped him through 11 surgeries, so this is more care-partnering. As a couple they have good family support.
Then Dave asked Jenn about the adjustment to her mom’s diagnosis and how it affected their relationship. Her first reaction was fear of the unknown. Much of her family is in healthcare so her answer was online research but there’s so much information, sometimes that’s scary, too. She relied on the Michael J Fox Foundation as a reliable resource.
Marguerite’s recommendation as to what to do early on. “It’s a marathon, so you need to establish both inner and outer resources.” Sometimes you need to educate yourself and even healthcare professionals about your family member’s diagnosis and treatment. Try mindfulness as an inner resource against stress, resist projecting too far into future, and calm oneself in the face of frustration with symptoms and healthcare staff.
Jim has found his strength in his wife’s support and encouragement. Initially, he was anxious, apathetic, and depressed, but vowed to do everything possible to live a normal life. His resources are Partner’s in Parkinson’s, the Parkinson’s Movement Disorder Alliance, and support groups.
How does Roberta manage to motivate Jim to do what’s needed and keep moving? She says it’s his willingness to take her reminders, even if others may view it as nagging.
Marguerite says Jim and Roberta’s attitude of care partnership is crucial to that cooperative relationship. A caregiver must give person with PD options and a level of decision-making so they don’t feel a total loss of independence and control. Be sure the caregiver isn’t letting cognitive deficits get in the way of helping the person to get moving and accomplish what needs doing for their own self-care.
Dave asked how Jenn and her Mom have decided to handle the issue of becoming a burden on her kids. Jenn says her Mom has always been active and with Michael J Fox Foundation Team Fox events, her whole family engaged with others in the PD community, including her mom. They focus on now, life, involvement in the PD community, and PD support groups because old friends probably don’t know or understand your new challenges.
Dave asked Jim about how not to be a burden on Roberta. Knowing the depth of her love and support from family, friends and the community helps. Roberta also finds support in the community and says it is huge to carve out time for yourself to maintain those relationships and some distance from constant caregiving. It helps her maintain a positive attitude toward Jim, and insists he has his own activities and relationships independent from her.
Marguerite’s comment is to encourage everyone not to identify with the label: caregiver. There’s a lot more to you than that label. You need to have other roles – employee, daughter, mother, artist, gardener, etc. The more roles you have, the less burned out you will be. Ask yourself why you may be clinging to the caregiver role and why it isn’t working for you because you will find out sooner or later, that it’s not working.
Dave asked Jim about his participation in support groups because men sometimes resist that. Jim feels it helps him keep active mentally, physically, and spiritually. Knowing others going through the same thing, he finds helpful. He could attend four, but started his own with about six people for whom he brings in speakers. Organizing the group, rather than just attending keeps him busy.
For Jenn, support groups don’t have to be formal, but can be ad hoc, like her involvement with the Michael J Fox Foundation’s Team Fox.
Jim and Roberta have been married for 60+ years because of their commitment, love, sensitivity to other’s feelings and desires. Commitment to them is the old fashioned wedding vows. There’s no dread or resentment about helping each other.
Marguerite’s experience is that not all couples are not like them but may have a history of anger and resentment before Parkinson’s is thrown into their path. Staying together takes a willingness to work through those difficult feelings. Mindfulness, self compassion, and not feeling guilty can help your inner self, but you may still want to look outside yourself for support.
Dave suggests that Parkinson’s calls upon you to be your best. Roberta hopes so. There are easy days and difficult days, but you just do it. Janet had good roll models in her parents looking after their parents, so she wasn’t expecting her mom to get young onset PD, but you just step up. She’s married to a native Tanzanian where the family is the support system, not institutionalizing anyone. His view about that means they are on the same page in looking after her mom. Caregiving is a role, but so is husband and wife, mother and daughter, and that comes first, always.
Roberta and Jim’s best advice is exercise, exercise, exercise. He has learned to love it! Roberta recommends a movement disorder specialist. To spouses, she says remember you are still the same people, regardless of Parkinson’s.
Marguerite’s comment is how little people seek counseling, even in the face of this remarkable journey and the new demands you face. Perhaps your relationship isn’t as well grounded as Jim and Roberta. Consider just a few sessions to mediate these difficult feelings.
Jenn says ask as many questions as you can and become an expert in Parkinson’s. That’s the best way to be supportive to your family member. Exercise with your family member in whatever way you enjoy being active.
The book “Brainstorms: The Race to Unlock the Mysteries of Parkinson’s Disease” is recommended by Jenn and Dave as a good grounding in PD and PD research.
“Facial masking” is a common symptom in both Parkinson’s Disease and the atypical parkinsonism disorders (LBD, PSP, MSA, CBD). It is a symptom where facial muscles are immobilized and the person is expressionless.
The face is one of the primary means by which we communicate with each other; there’s loads of nonverbal communication in the face.
According to the Davis Phinney Foundation (davisphinneyfoundation.org), facial masking negatively impacts:
1- how healthcare professionals evaluate a person with Parkinson’s levels of sociability, depression and cognition
2- impressions and judgment of others
3- the enjoyment of a care partner in a relationship
If a person is speaking with another individual with this symptom, the person may believe that the other individual is disinterested or bored. This is true even if the people are married or in the same family.
And clinicians may believe the individual is disinterested or bored! Occupational therapist Linda Tickle-Degnen describes the difficulty this way:
“If a neurologist, speech therapist, or occupational therapist gets the feeling that the person they’re working with is disinterested or depressed, then this relationship can be affected. [Practitioners sometimes] fail to talk to the person about their feelings because facial masking consistently causes a perception of depression, deception, hostility, and apathy in practitioners — even when they are experts.” (tuftsjournal.tufts.edu/2010/01_1/features/01/)
Here are some tips for care partners and practitioners from the Davis Phinney Foundation:
Here are four tips for Care Partners and Practitioners (from a graphic related to the article):
1. Ask Positive Questions. Positive questions have been shown to bring out more facial expression than negative questions. For example, ask your loved one about what went right today or what instances brought them joy.
2. Trust verbal communication. We rely on facial cues to interpret others’ emotions. When a person has facial masking, it is important to trust what the person says is true, even if the facial expression does not match the sentiment.
3. Inform others. Tell new friends about your loved one’s facial masking and provide some tips for engaging with someone who has facial masking.
4. Examine your bias. Women and Americans are usually expected to be more emotionally expressive, making facial masking have a greater effect on how they are perceived. What biases might you have when it comes to how you believe people should express themselves?
Finally, this brings us to Kelsey Phinney, daughter of Davis Phinney, with Parkinson’s. In a podcast for the Davis Phinney Foundation, Ms. Phinney interviewed occupational therapist Linda Tickle-Degnan about her researcher on the social effects of facial masking.
You can a blog post by Ms. Phinney here along with a link to the 26-minute podcast:
Brain Support Network volunteer Denise Dagan listened to the podcast and took some notes. The notes are shared below along with the related blog post by Ms. Phinney.
“How Facial Masking Influences Perception and Relationships”
Davis Phinney Foundation Podcast
by Kelsey Phinney
January 9, 2017
Kelsey Phinney was five when her dad was diagnosed with Parkinson’s disease (PD) and has been interested in learning more about the brain and ways to help people living with Parkinson’s ever since. Kelsey graduated from Middlebury College in May 2016 with a degree in neuroscience.
This is her first podcast for the Davis Phinney Foundation, and its pretty good work. She chose facial masking as the topic and explains why in the introduction below. She interviewed professor Linda Tickle-Degnen, from Tufts University, who’s done some research on the social effects of facial masking with some pretty interesting results.
In a well controlled study done with both Taiwanese and Americans, she found that no matter the level of training or years of experience a healthcare professional had, they all perceived people with facial masking as being more depressed, less sociable, and less cognitively capable.
– In Americans, who value sociability quite highly, participants viewed people with PD facial masking as being less sociable.
– In Taiwan, intelligence and social contribution are more highly valued and people with PD facial masking were more negatively viewed in those areas.
– In both cultures, women are expected to be more emotionally expressive, and were more negatively viewed in all categories assessed.
Dr. Tickle-Degnen’s team has not found a way to train healthcare professionals to overcome this bias. It it likely deeply rooted and has been evolutionarily beneficial. The question is, will this innate bias affect the care people with PD facial masking receive.
In another sample of older healthy adults tested in the same conditions as the healthcare professionals, the result was the same. And, further, people with PD facial masking were seen as being less desirable social partners. This is a huge barrier for those with PD, when it is known that social support is at least, if not more important than physical exercise to prevent motor decline, morbidity, and mortality in older adults, not just those with PD.
Finally, research with people who have PD facial masking and their care partners reveal that care partners tend to have less enjoyment in a relationship the more the partner is facially masked (on a continuum). The upshot is, the more facial masking you have, the less people want to hang out with you – even your care partner!
This is only part one of this interview. The second part will be about current research and tactics people use in personal relationships and social settings to help people with facial masking better communicate, especially with their partner, and ways the partner can better understand what’s going on with their loved one.
How Facial Masking Influences Perception and Relationships
The Davis Phinney Foundation
By Kelsey Phinney
January 9, 2017
Earlier this fall, my parents came to visit me in Sun Valley, Idaho. During their visit, we had some of my new friends over for dinner. These friends had never met my parents, and they also had never met a person living with Parkinson’s.
Thanks to my recent work with the Davis Phinney Foundation, I’ve come to understand that it is important to be able to talk about the different sides of Parkinson’s with those close to you. With this in mind, I realized that the main thing I needed to tell my friends before dinner was that one of the more notable symptoms of my dad’s Parkinson’s is facial masking.
My dad has an amazing smile, makes goofy faces and gets that sparkle in his eye when he talks about something he’s passionate about. While those things haven’t disappeared with years of Parkinson’s, they unfortunately can be subdued. Particularly when he is tired, his face can appear to be “masked.”
THE EFFECTS OF FACIAL MASKING
My dad’s face, like many people with Parkinson’s who experience facial masking, is less expressive and more neutral than one would expect, given the content of his conversation.
Facial masking causes a loss of facial expressivity. The muscles of the face lose muscle tone, leading to a seemingly blank expression.
For people who don’t know facial masking, the blank expression can be misconstrued as a lack of interest, displeasure, low sociability or low cognition. We’re accustomed to a person’s face shifting and changing regularly with the conversation. With a masked face, there is often slowness and stillness in the muscles of the face.
The primary thing I notice is less blinking and less reaction, positive or negative. However, when someone with a masked face is passionate about a story or topic, you can often see the most genuine and beautiful smile!
Even though I know what facial masking looks like, having a conversation with a person with facial masking can feel confusing. We expect facial responses in conversation. A simple smile, nod, eyebrow raise or crinkle of the eyes makes the person who is talking feel heard. With facial masking, these small movements are not so simple.
It is easy to take for granted our ability to subtly communicate through our face and movements. It can be challenging to gauge how someone should react to our own facial expressions and stories. We may disregard someone with facial masking because their facial expressions, or lack thereof, go against our social expectations. Also, it can be difficult to trust verbal communication when the facial expression doesn’t match the sentiment.
From my dad’s point of view, I imagine it is incredibly frustrating to not be able to effortlessly express himself.
LISTEN TO KELSEY’S PODCAST
I wanted to know more about the implications of facial masking and the importance of facial expressions in social interactions, so that we can all better understand how to respond. I interviewed Professor Linda Tickle-Degnen, Director of the Health Quality of Life Lab at Tufts University. Listen to my podcast to hear about her research on the effects of facial masking, what it is and how it impacts how people are perceived by healthcare professionals as well as their own care partners.
LOOK FOR THE SECOND PODCAST – COMING SOON!
Dr. Tickle-Degnen had a lot of interesting information to share, so Part Two of my interview will focus on her current research along with ideas and tactics for people who experience facial masking.