“Treating PSP, MSA, and CBD – What can be done?” Webinar Scheduled for February 27th

Stanford University and Brain Support Network are co-hosting
another webinar next month on treating progressive supranuclear palsy, multiple system atrophy, and corticobasal degeneration. The webinar is scheduled for Wednesday, February 27th, 3-4pm PT. Please register in advance.

Details are:

Treating PSP, MSA, and CBD – What can be done?

When:
Wednesday, February 27, 3-4pm Pacific Time (US and Canada)

Speaker:
Brent Bluett, DO, movement disorders specialist, Stanford Movement
Disorders Center

Dr. Bluett will address these topics:

* What symptoms of PSP, MSA, and CBD are amenable to improvement?
* How can physical therapy, occupational therapy, exercise, and
assisted devices help?
* What about eye movement training?
* What about botox?
* What are some eating and drinking strategies?
* How can you ask your neurologist about these treatments?

Those coping with advanced Parkinson’s Disease or Lewy body dementia may find some aspects of this webinar useful.

Register in advance for this (free) webinar.

After registering, you will receive a confirmation email containing
information about joining the webinar.

________________________________

Further details on the speaker:

The speaker is Dr. Brent Bluett, a movement disorders specialist at
Stanford University.  He is an expert on atypical parkinsonism
disorders.  He is the director of the Stanford Center of Excellence
for Progressive Supranuclear Palsy.  Dr. Bluett’s research focuses on
fall prevention in all movement disorders.  He received NIH grant
funding to explore freezing of gait in Parkinson’s Disease, in order
to better understand the underlying pathophysiology.

________________________________

Further details on the webinar host:

The webinar will be hosted by Sharon Reichardt Walker, whose late
husband Den had progressive supranuclear palsy (PSP), confirmed
through brain donation. She is a longtime member of Brain Support
Network, a nonprofit focused on the four atypical parkinsonism
disorders, including PSP, multiple system atrophy, corticobasal
degeneration, and Lewy body dementia. Sharon has spoken about the
importance of brain donation for research and the challenges of being a PSP caregiver to support groups and conferences.

________________________________

There will be time for questions-and-answers with Dr. Bluett and Ms.
Reichardt Walker.

If you can’t make it on February 27th, we encourage you to register
for the webinar so that you will be alerted when the recording is
available online.

Brain Support Network, the co-organizer, will be posting notes from
Dr. Bluett’s presentation and the Q-and-A to its website within a few
days of the webinar.
________________________________

Questions?

Please contact Robin Riddle, Brain Support Network.

Best of the BSN Blog 2018

As we celebrate the beginning of a new year, we wanted to share our most visited blog posts and articles from 2018. It is our hope that we have provided meaningful resources to those with neurological disorders, their families, and their caregivers.

Please feel welcome to share your thoughts and suggestions about future content with our support staff.

Join our email mailing list to receive relevant articles concerning the four atypical parkinsonism disorders and caregiving directly to your inbox.

 


OUR TOP POSTS OF 2018


 

Apps to increase vocal loudness and improve fluency (speech therapist’s favorites)

 

PSP Stages/Phases, by two caregivers

 

 

“Cannabis and Parkinson’s Disease” – Lecture Notes

 

 

Constant groaning in PSP (case report)

 

 

Caregiver Stress Syndrome: Identifying Symptoms, Finding Solutions

 

 

“Applause sign” to diagnose PSP?

 

 

Webinar Notes – Hallucinations and delusions in LBD

 

 

Mayo Rochester finally reports results from mesenchymal stem cell study in MSA

 

Sharon’s Treatment Regimen for CBD

 

 

Five types of PSP and diagnostic challenges

 

 

Stress Symptoms, Signs, and Causes: Improving Your Ability to Handle Stress

 

“Are you a healthy caregiver” – 10 question test

 

 

Five Approximate Phases of Lewy Body Dementia (as seen by caregivers)

 

“Persisting in the Face of Caregiver Difficulties” – Webinar Notes

Support Brain Research With Your Donated Stock

Donating long-term appreciated securities to BSN benefits families affected by neurological disorders and potentially you as well! Gifts of long-term appreciated securities may have tax advantages that could maximize your gift and reduce your taxes.

Potential benefits of donating stock may include:

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Please contact BSN at +1 650-814-0848 with any questions about donating stock. Please send email to [email protected].

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Webinar – Preventing Burnout for the Dementia Caregiver

FCA’s August Webinar: Preventing Burnout for the Dementia Caregiver

When: Wednesday August 29, 11 a.m. to 12 noon (PT)
Where: ONLINE
Cost: No charge
Contact: Calvin Hu, [email protected], (415) 434-3388 x 313
Registration: Click here

Any kind of work, regardless of how enjoyable or personally meaningful it may be, can lead to burnout. And, it is well-documented that the stress of caregiving, especially without respite or a predictable conclusion, often leads to health problems, including depression and cardiovascular disease. Quality of life and the ability to care for a family member or friend can be at risk. At the same time, caregivers often view self-care, hobbies, and enjoyment of pastimes as inaccessible or as an unnecessary indulgence. Preventing Burnout for the Dementia Caregiver will help caregivers understand the importance of self-care and how it can foster positive caregiving experiences, without burnout. Strategies for guilt-free, self-care will be discussed.

Objectives:

  • Learn about the concept of burnout as a predictable result of certain patterns of experience
  • Learn how burnout affects dementia caregivers’ health, well-being, and capacity to provide care
  • Identify strategies for preventing burnout and improving care

 


About the Speaker: Daniel Paulson, PhD

Dr. Daniel Paulson is an assistant professor in the Department of Psychology at the University of Central Florida. His primary clinical interests include caregiving and dementia evaluation of older adults. He completed his Bachelor’s degree in psychology at Virginia Tech in 2002 and his Master’s degree in Psychological Sciences from James Madison University in 2005. He then moved to Detroit where he completed the Ph.D. program in Clinical Psychology at Wayne State University. His graduate training was supported in part through an NIH T-32 award in Aging and Urban Health at the Institute of Gerontology. He went on to complete the clinical neuropsychology pre-doctoral internship program at the Medical University of South Carolina before moving to Orlando. As a faculty member at UCF, Dr. Paulson teaches in the Clinical Psychology Ph.D. program and directs the Orlando Later-Life Developmental Research Lab (OLDeR Lab) where his research focuses on both dementia caregiving and late-life depression.

Our 15th year of caregiver-only support group meetings

Tonight, Brain Support Network is starting its 15th year of holding caregiver-only support group meetings for those dealing with Lewy Body Dementia, Progressive Supranuclear Palsy, Multiple System Atrophy, and Corticobasal Degeneration. Thanks to all of our volunteers for making possible this milestone.

We meet nine times a year in San Mateo. Let us know if you’d like to be added to our support group meeting reminder email list.

“Lewy Body Rollercoaster” – Alzheimer’s Weekly

Here’s an excerpt from an Alzheimer’s Weekly article from April 12, 2014 about Lewy body dementia (LBD):

www.alzheimersweekly.com/2014/07/lewy-body-rollercoaster.html

Excerpts from

Lewy Body Rollercoaster
April 12, 2014
Alzheimer’s Weekly

Attention, alertness and cognition have dramatic fluctuations in Lewy Body dementia. Caregivers call these ups and downs “The Roller-Coaster of LBD.”

“I watched my husband experience a decline in cognition followed by a period of what seemed like improved function only to plunge again into confusion with more frequent hallucinations,” says one caregiver newly acquainted with Lewy body dementia (LBD). According to the Lewy Body Dementia Association (LBDA), these ups and downs in function are sometimes refer to by family caregivers as the “roller-coaster effect” of LBD. Fluctuating levels of cognitive ability, attention and alertness are one of the core features of LBD.

Important Diagnosis
“The combination of the motor signs of Parkinson’s disease (slowed mobility, stooped posture and tremor) and mental confusion, especially if the degree of confusion fluctuates day to day, should raise a red flag for suspicion of LBD,” says Howard I. Hurtig, M.D., Chair, Department of Neurology, Pennsylvania Hospital, and Elliott Professor of Neurology, Perelman School of Medicine, University of Pennsylvania. “If those symptoms are accompanied or preceded by REM sleep behavior disorder (vivid dreams, dream enactment, hitting bed partner, falling out of bed) and visual hallucinations (seeing people, animals, etc., that aren’t truly there), then the diagnosis of LBD is almost certain. Even when all symptoms of LBD are present, it is critical for the evaluating doctor to look for underlying, TREATABLE causes of dementia.” A thorough assessment will include an inventory of daily medications (drugs can produce a “chemical” state of pseudodementia), CT or MRI scan of the brain, blood tests for thyroid function and vitamin deficiency and other causes of dementia that can be identified by routine study.

Following Alzheimer’s disease, LBD is the most misdiagnosed form of dementia but the second most common cause of progressive dementia, affecting 1.3 million Americans. LBD is associated with abnormal protein deposits in the brain, called Lewy bodies, that impair thinking, movement, sleep and behavior (causing people to see hallucinations or act out dreams, sometimes violently). Also, it affects autonomic body functions, such as blood pressure control, temperature regulation, and digestion. Recognizing symptoms early can help people with LBD get comprehensive and appropriate treatment and help caregivers get much needed support. It’s difficult to diagnose LBD, because its early symptoms resemble symptoms found in Alzheimer’s and Parkinson’s disease.

Pain and Fatigue in Parkinson’s – Webinar Notes

The Michael J. Fox Foundation (michaeljfox.org) hosts webinars on the third Thursday of every month.  Lately they’ve been re-broadcasting recordings of previous webinars.  Last Thursday’s webinar was a re-broadcast of a July 2016 webinar on Parkinson’s pain and fatigue.

There is often fatigue in all of the disorders in the Brain Support Network group, and many of our community members experience pain. Listening to the webinar recording may be worthwhile for many.  The only information that will NOT be relevant to most of you is the info about off-periods caused when Parkinson’s medications wear off.

You can find the recording online here:  (you’ll have to register first)

https://www.michaeljfox.org/understanding-parkinsons/webinar-registration.php?id=9

Here are two highlights from the question and answer session:

Q. What about treatments for people in wheelchairs?
A. You definitely need to work with a good physical therapist for the best advice for exercising in a chair.  Chair yoga and tai chi are just the tip of the iceberg.  You don’t get an exercise pass because of the chair.

Q. What can family members do to help with pain or fatigue?
A. Care partners should use socialization to get their person with Parkinson’s (PwP) up and going.  It really is helpful just to get the PwP out of the house, walk in the neighborhood, chat with a neighbor, create a new recipe or anything to get your mind off the PD.  Walk the dog or exercise in any way is really helpful.

Brain Support Network volunteer Denise Dagan listened to the re-broadcast last week and has shared notes.

Robin

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

www.michaeljfox.org/understanding-parkinsons/webinar-registration.php?id=9

Notes by Denise Dagan, Brain Support Network volunteer, May 2018

Parkinson’s Pain and Fatigue
Webinar by Michael J. Fox Foundation
July 21, 2016

Speakers:  Julie Pilitsis, MD, PhD, Adolpho Ramirez-Zamora, MD, and Toni Palumbo, person with Parkinson’s

PAIN

More than 75% of people with PD may experience pain.  Pain in PD can come from:
– Muscle rigidity and slowness
– Dystonia (muscle cramping)
– Constipation and bowel pain
– Musculoskeletal pain
– Central pain (burning sensations and sharp bursts of pain)
– Dyskinesia (involuntary movements)

Pain is as common in Parkinson’s as other non-motor symptoms.  Pain can be one of the earliest symptoms and the source is sometimes mis-diagnosed before tremor and/or gait and balance symptoms present to be able to diagnose PD and associate the pain as a PD symptom.

Pain can be exacerbated by stress, over exertion or illness.  The degree to which someone experiences pain varies by individual perception, medication effectiveness in controlling motor symptoms (on/off periods).  Dystonia during off periods (when medications are wearing off) can be painful.

Dyskinesia begins after 5-7 years of PD medication treatment and can be painful.

Pain is one of the most under treated symptoms of PD.

Talking to your physician (start with your neurologist) about your type of pain can direct treatment.  Discuss the location, feeling and duration of your pain to understand the root cause and target treatment for best chance of relief.
– Your doctor may add, reduce or change dopamine medication dose and type
– Anti-inflammatories, painkillers, opioids (as a last resort as it is constipating) and antidepressants may help manage pain
– Non-pharmacological methods include:
Exercise
Massage
Relaxation techniques (e.g. hypnosis, mindfulness, tai chi, yoga)
Acupuncture
Heating pad or cold pack

Start with your neurologist but you may need a team approach to manage pain as you determine the mechanism causing the pain or eliminate through one physician at a time where the pain does NOT originate.  You may need to move on to a gastroenterologist, orthopedist, urologist, other specialist or chronic pain management clinic.

There is concern with drug interaction in PD because there may already be a cocktail of meds prescribed just for the PD symptoms and adding more to treat pain is worrisome and could result in under treatment.  Depending on the source of the pain doctors can start with NSAIDs, and physical therapy which may include heat, massage, and exercise.  Of course, excruciating pain needs to be treated more aggressively and immediately.

Toni has been diagnosed for 12 years so treats pain more aggressively, including botox injections for dystonia.  She uses painkillers (not opioids) and finds hot tub, tai chi, boxing and socialization most helpful for pain.  The movement disorder specialist advises Toni on all over the counter meds and supplements before taking them to avoid medication interactions.  Toni finds boxing class + an hour of bike riding is too much and causes pain. Her movement disorder specialist helped her find a good exercise balance to avoid pain.

FATIGUE

Fatigue is another challenging non-motor symptom of PD.  Fatigue: Overwhelming sense of tiredness, lack of energy, and feeling of exhaustion that interferes with normal function.
– Estimates vary, but up to 70% of people with PD may experience fatigue
– Parkinson’s fatigue eases with exercise and activity
– Fatigue may be associated with:
Early sign of PD
Prolonged disease duration
Increased disease severity
Depression, anxiety and apathy
Sleep disturbances
Off episodes

Toni describes fatigue as being very close to apathy, as she can wake from a good nights sleep with fatigue.  She battles fatigue days by walking her dog every 20 minutes for 10 minutes, just to get up, moving and motivated.

Fatigue in PD is extreme exhaustion which cannot be explained by effects of or lack of medication, lack of rest, lack of sleep. Fatigue is improved with exercise and good medication management as it can be worse during off times.  Whereas, apathy in PD is a lack of drive to do things one normally particularly enjoys doing.

Fatigue can increase one’s experience of pain and short temper.  Any type of exercise will reduce fatigue (boxing, cycling, etc.), especially if you exercise together as socialization can distract from pain and fatigue.

Interventions and planning can help manage fatigue.  Doctors may adjust or stop medications or may prescribe other medications:
– Wakeful-ness agents
– Stimulants
– Antidepressants

Non-Medication interventions:
– Exercise
– Socialization
– Daily scheduling: planned rest and pacing of activities
– Vitamin supplements: vit. B, iron, folate and magnesium
– Lifestyle changes: caffeine, alcohol and tobacco reduction

You should discuss any supplements you take with your doctor as some can be toxic at certain levels, cause nerve damage and have other adverse effects.  Your physician should do blood work prior to recommending you take B complex or other supplements which can treat symptoms, including pain.

Caffeine has been studied in reducing fatigue in PD, but found to be ineffective.  It has also been tested in treating daytime sleepiness with inconclusive effects.  If you take too much caffeine or have clear worsening of fatigue when caffeine is out of your system you need to reduce caffeine and increase exercise.

QUESTION AND ANSWER

Q. How is DBS (deep brain stimulation) useful for treatment of pain?
A. In general, after DBS in the sub-thalamic nucleus people report a reduction of pain associated with movement.  (In 2016 they did not) know how long this effect lasts.  Perhaps existing DBS can be adjusted in order to treat pain.  As of 2016 animal trials were under way to learn more about this.

Q. Please provide a better definition of “off-time.”
A. The longer you have PD you are more likely to experience this more frequently.  On is when your medication is effective.  Off is when your medication has worn off.  As you take PD medications over many years, it wears off sooner and sooner, causing more off times and resulting in needing to take medications more frequently throughout the day.  There are newer medications and medication formulations to combat this effect.

Q. What about treatments for people in wheelchairs?
A. You definitely need to work with a good physical therapist for the best advice for exercising in a chair.  Chair yoga and tai chi are just the tip of the iceberg.  You don’t get an exercise pass because of the chair.

Q. What do we know about medicinal marijuana?
A. Marijuana has compounds that we thought can be helpful in PD, especially in dyskinesia and tremor although recent studies have not shown this. Concern about potential side effects, particularly with respect to cognition and falling are very real.  We don’t know how marijuana could affect fatigue because only stimulants have been tested for fatigue.  Marijuana has the opposite effect so it hasn’t been studied for fatigue.

Q. What can family members do to help with pain or fatigue?
A. Care partners should use socialization to get their person with Parkinson’s (PwP) up and going.  It really is helpful just to get the PwP out of the house, walk in the neighborhood, chat with a neighbor, create a new recipe or anything to get your mind off the PD.  Walk the dog or exercise in any way is really helpful.

Q. What is the effect of alcohol on fatigue?
A. As with caffeine, moderation is the key.  If you’ve spoken with your neurologist and determined it is fine, then fine.  If you are using alcohol to sleep you have a problem because alcohol should not be self medication.  Caffeine is the same, if you need it for wakefulness it will only cause you more fatigue and probably more pain.

Q. How do you determine what kind of pain you are experiencing?  It could be normal aging or a PD symptom.  Is it important to distinguish?
A. It is important to distinguish.  In the past we didn’t think pain was part of PD.  Neurologists thought of PD as exclusively a motor disorder, but now we know there are many non-motor symptoms, including pain.  Sometimes, it is very difficult to tell the cause of pain.  Most of the time the source is multi-factorial (has many causes).  It can be medication effect in addition to orthopedic or arthritic.  An in-depth discussion and complete history can help your neurologist to guide you to the most probably cause and most effective treatment.  Be persistent!

Q.  What do we still need to know about pain and fatigue in PD?
A. Treating pain and fatigue must know the mechanisms causing pain from the brain out into the body.  It would be great if we could have biomarkers and specific measures to determine if inflammation, neurologic sources, or others are the source of pain so we can target treatment.

Q. What do you recommend people do approach treatment of pain and fatigue?
A. The best thing is to have an open dialogue with yourself, your family and your doctors to determine what is contributing to pain and fatigue.  We sometimes don’t realize what stressors are contributing to worsened PD symptoms.  Socializing and exercising need to be as much a part of your treatment as medications, diet and sleep.

“A Parkinson’s Life and a Caregiver’s Roadmap” – Book Review

The Northwest Parkinson’s Foundation (nwpf.org) has a community blog. Recently a blogger named Pete Beidler reviewed a book by Jolyon Hallows titled “A Parkinson’s Life and a Caregiver’s Roadmap.” In the book, Jolyon describes his journey with his wife Sandra, who lived with Parkinson’s Disease for 20 years. The third part of the book is focused on caregiving.

The reviewer describes the third part this way: it “draws from Hallows’ own experience to give to other caregivers advice about what he calls the three dimensions of caregiving: the physical, the structural, and the emotional. I recommend the book for readers who want to know the gritty details of what probably lies ahead for them: the inevitable decline, the end of driving, the bedside commode, the in-bed sponge bath, the dressing, the legal decisions, the end-of-life decisions, and so on. … Hallows says that among the lessons he has learned in confronting Parkinson’s is that it is good to seek humor in dealing with situations that are not in themselves funny: ‘laughter is not disrespectful’.”

You might enjoy reading this book. If you do, please share what you learned. And consider donating the used book to our local support group’s lending library.

Robin

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

nwpf.org/stay-informed/blog/pete-beidler-reviews-jolyon-hallows-a-parkinsons-life/

Northwest Parkinson’s Foundation
PD Community Blog, May 17, 2018
Pete Beidler Reviews “A Parkinson’s Life”

A Parkinson’s Life and a Caregiver’s Roadmap, by Jolyon E. Hallows. Burnaby, British Columbia, Canada: WCS Publishing, 2018. 225 pp.

In his Afterword to “A Parkinson’s Life and a Caregiver’s Roadmap,” Jolyon Hallows confesses to a certain uncertainty of purpose: “When I started writing this book, my motivations were unclear. It seemed important to me, but I wasn’t sure why” (185). By the end he seems to have found clarity of purpose. He wanted his readers to know what a Parkinson’s marriage is really like, both for the one with the disease and for the caregiving spouse.

Hallows divides his book into three parts. Part I, Prelude, gives the history of the author’s and his wife Sandra’s life together before she receives her diagnosis, and it describes the basic facts about Parkinson’s disease and the various treatment options for people who have it. Part II, Living with Parkinson’s, gives a mostly chronological account of the progression of Sandra’s disease and her husband’s increasingly desperate efforts to care for her. Part III, Caregiving, draws from Hallows’ own experience to give to other caregivers advice about what he calls the three dimensions of caregiving: the physical, the structural, and the emotional. I recommend the book for readers who want to know the gritty details of what probably lies ahead for them: the inevitable decline, the end of driving, the bedside commode, the in-bed sponge bath, the dressing, the legal decisions, the end-of-life decisions, and so on.

Hallows is an excellent writer. He has a rare gift for explaining complicated concepts in simple language. What does a dopamine neuron do? Hallows explains it this way:

“Let’s say you pass a storefront in the mall and you see something in the window that interests you. Do you go into the store to examine it or do you move on? It all depends. Do you have the money? Is there someone waiting for you at the coffee shop? Are you in a hurry? Do you really need, or want, whatever this is? The evaluation of each alternative—to go into the store or to move on—is one of the things the dopamine neurons provide. They help us choose.

But what happens when the signals fail? In that case, there’s nothing to tell the brain what to do. So, lacking direction, it does the logical thing—it freezes,” (19–20).

Why can’t we get artificial dopamine into the brain to replace the natural dopamine that the brain has stopped making? Hallows elaborates:

“The brain is persnickety. It doesn’t tolerate some of the stuff the bloodstream carries, so it’s protected by something called the ‘blood-brain barrier,’ which acts like a security guard in an exclusive gated community, keeping out the riffraff. Among the many substances that can’t cross the barrier is dopamine. You can take all of it you like, but none of it reaches your neurons. . . . Enter levodopa,” (32).

A Parkinson’s Life and a Caregiver’s Roadmap is not about malls, of course, or coffee shops, or gated communities, or riffraff, but Hallows uses these familiar concepts to help us to understand unfamiliar terms like dopamine neurons, blood-brain barriers, and freezing.

One of the attractive features of Hallows’s writing is his sense of humor. When he introduces levodopa, for example, he quips, “No, levodopa is not curt advice to someone married to a dullard” (32). Get it, leave-a-dope? Another example: when Hallows’s wife Sandra has deep brain stimulation surgery, he has to learn how to use the control stimulator: “I showed the stimulator to Sandra’s sister Vivian and boasted I could now turn Sandra on and off. She said it was a sorry excuse for a man who needed an electronic device to turn his wife on,” (78). Toward the end of the book Hallows says that among the lessons he has learned in confronting Parkinson’s is that it is good to seek humor in dealing with situations that are not in themselves funny: “laughter is not disrespectful” (183).

One of the most striking features of “A Parkinson’s Life and a Caregiver’s Roadmap” is its honesty. Sandra lives for more than two decades after her initial diagnosis. During those decades she grows less and less able to do the things she had always enjoyed: her work as a nurse, her driving, her ability to travel, her ability to take care of herself, her independence. It would perhaps have been possible for Hallows to report Sandra’s losses in positive terms as gains in love or devotion or knowledge or humility, but Hallows does not do that.

He focuses squarely on the disabling features of the disease: “In the final stage of the disease, the person is bedridden and needs help in all areas of his or her life including getting dressed, eating, and personal hygiene” (26). Hallows tells us that he has to brush Sandra’s teeth, help her get on and off the portable bedside commode, wipe her, give her sponge baths in bed, help her put her panties and bra on, and so on. Nor does he sugarcoat the unpleasantness of the disease for both of them by promising a cure: “Parkinson’s is far more complex than researchers had suspected and. . . . it will be a long time before there’s a cure on the horizon” (20). Furthermore: “This prolonged research is expensive—one source cites over a billion dollars and ten to twelve years to bring a new treatment to market. . . . So even if researchers find a real cure, it will take years to prove it” (28).

The medications and surgeries that are now available have helped many Parkinson’s patients, but they can help for only so long: “Medications have given generations of Parkinson’s patients extended time and a better quality of life, but there’s only so much they can do in the face of the disease’s inexorable progress,” (34). When Sandra dies, Hallows tells readers that “Sandra put up a valiant fight against her Parkinson’s. But it’s not a fight anyone ever wins” (181).

Should you read this book? That depends. If you want to know the grim facts about what probably lies ahead for people with Parkinson’s and for those whose lot it is to care for them, “A Parkinson’s Life and a Caregiver’s Roadmap” is a good choice. If you remember always that Parkinson’s follows a different trajectory for each person and that no single “roadmap” will work for all caregivers, then Hallows’ book can help you to anticipate and plan ahead for some of what probably lies in front of you. As you come to terms with the disease and with its almost inevitable downward progression, you may find solace in learning from this book that you are not alone.

Pete Beidler has read and reviewed many books about Parkinson’s disease. Parkinson Pete’s Bookshelves: Reviews of Eighty-Nine Books about Parkinson’s Disease (Coffeetown Press, 2018, ISBN 978-1-60381-746-2) can be purchased here.

Daily caregiving balancing act – how much to help?

Brain & Life magazine (brainandlife.org) is published by the American Academy of Neurology.  In the most recent issue, they have a good article on caregiving.  Here’s an excerpt:

“As many caregivers know, offering just the right amount of help can be challenging and stressful for both sides, and requires time and communication. And even after striking the right balance, the needs of the person being cared for may change, requiring caregivers to recalibrate.”

Here’s a “caregiving rule” suggested by a nurse practitioner in the article:

“Dr. Resnick has what she calls a three-time rule: A caregiver allows a patient three tries at a task before stepping in. If the task is putting on a shirt, Dr. Resnick will do one step, perhaps helping the patient put on one sleeve, and then step back. If getting the button secured is the next challenge, she breaks down the action and allows the patient to try again. If the patient is truly not up to a task, Dr. Resnick suggests working together to accomplish it, for example, by placing a patient’s hands over your own as you perform an action.”

Here’s a link to the full article:

www.brainandlife.org/the-magazine/article/app/14/2/20/in-the-balance-knowing-how-much-to-help-is-a

In the Balance
Knowing how much to help is a daily challenge for many caregivers. Our expert advice can help you find that sweet spot.

by Natalie Pompilio
April/May 2018
Brain & Life

Man found joy in completing puzzles that were family photos

This article from last year is about twin daughters who discovered a company that created puzzles from family photographs, and that their father with Lewy body dementia (LBD) really enjoyed putting together these puzzles.

This activity might be of interest to more than those with dementia.

www.brainandlife.org/the-magazine/article/app/13/1/23/puzzle-power-as-lewy-body-dementia-narrowed-their-fathers-world