Category Archives: Parkinson’s

“Shapeshifting: Husband to patient, wife to caregiver” (by The Perfect Servant-nope)

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“Shapeshifting: Husband to patient, wife to caregiver” (by The Perfect Servant-nope)

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 – medium.com/@galisteoliz.)

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:

thecaregiverspace.org/shapeshifting-husband-to-patient-wife-to-caregiver/

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.

Robin

Complementary and Alternative Medicine Webinar – Notes

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Complementary and Alternative Medicine Webinar – Notes

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:

www.michaeljfox.org/understanding-parkinsons/webinar-registration.php?id=22&e=1361202

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.

Robin

 ——————————————–

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:
* Antioxidants
* Anti-Inflammatory Foods
* Dairy
* Sugar
* Gluten and Carbohydrates
* Spices
* Beans
* Protein
* Fiber
> 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.

Magnesium?
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.

“We Will Go On” Blog by Dan Brooks

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“We Will Go On” Blog by Dan Brooks

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.

Robin

————————-

www.wewillgoon.com/2017/03/confusion-over-parkinsons-contrasted.html

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 occurs in more than just PSP

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Supranuclear gaze palsy occurs in more than just PSP

“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 650 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.

Robin

———————–

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.

Abstract
INTRODUCTION:
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.

METHODS:
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.

RESULTS:
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.

CONCLUSION:
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)

Five E’s of empowered living with chronic illness

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Five E’s of empowered living with chronic illness

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:

www.youtube.com/watch?v=BWoXJdkkV6I&feature=youtu.be

Your PSP, CBD, MSA Management Plan: Resources and Services
CurePSP Webinar
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.

Robin

===================================

Denise’s Notes

Your PSP, CBD, MSA Management Plan: Resources and Services
CurePSP Webinar
Speaker:  Becky Dunlop, RN, Johns Hopkins Parkinson’s Disease and Movement Disorders Center
March 6, 2016

Learning Objectives:
* 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.
* Education
* Expanding & building your Team
* Effective Communication
* Effective Coping
* Exploring Options

Education:
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:
– CurePSP
– 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
– Urologist
– 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)
* Depression
* 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)
* Nursing
* Social Workers

Physical Therapy
* Maintain mobility
* Prevent falls
* Suggest walker and wheelchair as appropriate
* Instruct in safe transfer and walking
* Instruct caregiver to maintain caregiver health

Speech Therapy:
* 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]

Occupational Therapy:
* Home modifications
* Home safety

Dietician:
* 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.

Effective Communication

Effective Coping

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.”

Pet Therapy

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…

Exploring 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

Walking aides
U-Step walker has red laser line between back wheels to prevent freezing.
laser cane
www.parkinsonshop.com/

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
www.mtsmedicalsupply.com/pages/parkinsons-products.cfm
www.activeforever.com/flyers/Movement_Disorder_Catalog.pdf
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
* Aromatherapy
* Animal-assisted therapy
* Spiritual care
* Massage therapy
* Healing touch
* Acupuncture

Hope
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)

Q&A
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?
Now.