Short podcast on Parkinson’s Plus conditions with Dr. Golbe

This is a worthwhile 28-minute podcast about Parkinson’s Plus conditions, including progressive supranuclear palsy (PSP), multiple system atrophy (MSA), vascular parkinsonism, corticobasal degeneration (CBD), and dementia with Lewy bodies (DLB).

soundcloud.com/world-parkinson-coalition/07-parkinsons-plus-conditions

Parkinson’s Plus Conditions
Podcast by World Parkinson Coalition
Speaker:  Lawrence I. Golbe, MD, movement disorder specialist

Brain Support Network Treasurer Phil Myers listened to the podcast and reports: “This podcast was done a year ago in 2016 as preparation for the World Parkinson’s Congress in Portland.  This is good coverage of all variations of Parkinson’s Plus. It compares each of them to Parkinson’s. It does talk about the lack of direct treatment but does discuss symptom treatments. And it talks about the difficulty of diagnosis.”

I’ve shared an outline of the podcast and a few notes below in case you want to forward to your disorder of interest.

Robin

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1:00 – Dr. Golbe begins a general overview of Parkinson’s Plus conditions

1:45 – PSP discussion begins

5:00 – terrific question and answer on why levodopa doesn’t work in PSP, MSA, etc.

6:00 – MSA discussion begins

8:00 – discussion of dementia in MSA

8:20 – is MSA a prion disease?  He can’t comment on any one study in this format.  He says many diseases are prion-like in that there is a toxic chain reaction.  “Can’t catch MSA.”  Key distinction is that in CJD, the key protein is prion.  Prion protein can be transmitted more easily than other proteins.

11:00 – treatment of MSA symptoms

11:52 – discussion of vascular parkinsonism, which isn’t a neurodegenerative disease.

13:43 – CBD discussion begins.  One-tenth as rare as PSP or MSA.  Those conditions are one-twenthieth as prevalent as Parkinson’s.  Life expectancy similar to PSP and MSA:  between 5 and 10 years, typically between 7 and 8 years.  Lots more tau in CBD than in PSP.

15:10 – MSA pathology

15:40 – DLB discussion begins.  Spontaneous fluctuations that happen in DLB don’t happen in PD.  Levodopa isn’t quite as effective in DLB than in PD.  There’s is a problem that levodopa can cause hallucinations in DLB.

18:00 – general discussion.  There is long-term hope via a double-pronged attack.  First, stopping the protein aggregation or misfolding for a group of diseases.  Second, focusing on each individual disease.

We are further along in PSP given the focus on Alzheimer’s – both are tauopathies.

CBD is more difficult to do research on — because it’s rare and because diagnostic accuracy is very poor (50%).

21:00 – general discussion.  Neglected because they are rare, hard to diagnose, and no biomarkers.  FDA can given these diseases the status of an “orphan disease.”

22:45 – general discussion about how to help these families.  First, accurate diagnosis is important.  Sometimes people are given fruitless tests on the way to a diagnosis.  Second, symptoms can be treated.  Palliative management of symptoms.  Referrals can be made.  Third, at academic centers, treatment trials or research projects are available.  These can give patients the feeling of “fighting back” to help future generations.

25:00 – Dr. Golbe stops speaking.  Podcast continues with comments from hosts Dave Iverson and Jon Palfreman.

Facial Masking – Blog and Podcast Notes

“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:


www.davisphinneyfoundation.org/blog/facial-masking/

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.

Robin

——————————–

Denise’s Notes

“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.

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

www.davisphinneyfoundation.org/blog/facial-masking/

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.

Podcast on brain atrophy in PSP and CBS with Dr. Boxer

The journal Neurology hosts weekly podcasts with neurologists around the world. In this podcast from November 8, 2016, Adam Boxer, MD, neurologist at UCSF’s Memory & Aging Center, discusses brain atrophy in progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS). The interview with Dr. Boxer is the first ten minutes of the podcast.

Brain Support Network Treasurer Phil Myers listened to the podcast and found it interesting.  He says Dr. Boxer discusses “using MRI measurements to speed up the time it takes to do a clinical trial for PSP or CBS potential drug trials.”

You can find the podcast here:

tools.aan.com/rss/index.cfm/getfile/AAN_3192.mp3

Neurology Podcast on brain atrophy in PSP and CBS
Neurology Journal
November 8, 2016

Robin

Blood Test to ID Who Has PD vs. PSP/CBD/MSA

Thanks to Brain Support Network volunteer Denise Dagan for passing this article in MedPage Today on to me.  This is progress on the way to a biomarker to discern if someone has Parkinson’s Disease (PD) vs. one of three atypical parkinsonism disorders — progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA).  Of course what we really need are biomarkers for each of the disorders — PD, PSP, CBD, and MSA.  But still, it’s progress.

The article is about a Swedish/UK study (published in the journal Neurology on February 8th) that shows that neurofilament light chain (NF-L) protein levels are increased in PSP, CBD, and MSA as compared to those with PD or healthy controls.   This was true for those recently diagnosed as well as those with had been living with PD, PSP, CBD, and MSA for several years.  (This also means that the blood test is not a biomarker for determining if someone has PD.)

And researchers determined that a blood test for the NF-L protein achieves the same results as a spinal test for this protein does.  Obviously it’s much easier to administer a blood test than a spinal tap.

In an accompanying editorial, authors pointed out that there is a need for autopsy confirmation of the PD vs. atypical parkinsonism diagnoses.

Here are two excerpts from the article:

* “These atypical parkinsonism disorders are rare, but they generally progress much faster and are more likely to be the cause of death than Parkinson’s disease,” [one of the researchers] said. “It’s important for patients and their families to receive the best care possible and to plan for their future needs.”

* “Distinguishing these major parkinsonian groups is crucial for best possible treatment and care, and not least for providing adequate information to patients and caregivers on their future needs and perspectives,” the editorialists pointed out. “When disease-modifying treatments become available, diagnosing parkinsonian disorders correctly at early, possibly preclinical stages will be even more important.”

Here’s a link to the full article:

www.medpagetoday.com/neurology/parkinsonsdisease/63007

Neurology
Blood Test Matches Spinal Tap to ID Parkinson Disease Types
Less painful diagnostic workup could help diagnosis
by Kristin Jenkins
Contributing Writer, MedPage Today
February 08, 2017

Robin

 

“Delirium Makes its Own Mark on Cognitive Decline” (Alzforum)

A comprehensive study of delirium and neurodegeneration was published last month in the journal JAMA Psychiatry.  The researchers wanted to learn “whether delirium worsens neurodegenerative pathology that’s already in the brain, or causes decline through a separate process, or both.”  Note that researchers relied on donated brains of those who suffered from neurological disorders — some of whom also had suffered delirium.  (If you are interested in brain donation, Brain Support Network can help your family make those arrangements!)

An Alzforum (alzforum.org) article about this research makes several key points about how delirium can hasten neurodegeneration and how delirium should be prevented:

* “[Delirium] contributes to cognitive decline independently of Aβ, tau, Lewy bodies, or vascular disease. But combined with any of these pathologies, delirium can quadruple the rate of memory loss.”

* “Delirium hastens cognitive decline in patients who have Alzheimer’s disease and increases the risk for dementia in older people who become delirious after surgery.”

* The findings suggest “delirium and pathology interacted to accelerate decline even further.”

* The “findings are a call to take delirium more seriously.”

* A clinician not involved in the study “said this study had tremendous health implications. ‘This creates an amazing impetus for public health agents to focus on delirium prevention as a way to reduce the negative burden on brain health.’ Almost half of cases are preventable by simple, inexpensive methods, ensuring people get optimal sleep, pain medication, fluids, and exercise in the hospital, he said (Hshieh et al., 2015).”

Here’s a link to the Alzforum article:

www.alzforum.org/news/research-news/delirium-makes-its-own-mark-cognitive-decline

Delirium Makes its Own Mark on Cognitive Decline
Alzforum
03 Feb 2017

Robin

Compassionate communication and managing difficult behaviors

Brain Support Network had an exhibitor table at the December 2016 Alzheimer’s Association “Circle of Care” conference in Foster City.  Steven Russell staffed our exhibitor table, where he talked to people about brain donation and our local support group for those with non-AD dementias.  He also had the opportunity to attend a few of the break-out sessions.  Copied below are his notes from the break-out session on “Managing difficult behaviors.”

During the break-out session, a handout on “Compassionate Communication” was reviewed.  The handout offers “do’s” and “don’ts” of communicating with someone with memory impairment.  You can find my previous post from 2008 about this terrific handout:

www.brainsupportnetwork.org/compassionate-communication-dos-and-donts/

Two key lines from the “Compassionate Communication” handout are:

“You can’t control memory loss, only your reaction to it.   Compassionate communication will significantly heighten quality of life.”

Words to live by as caregivers!

Robin

————————————

Steven’s Notes

Managing Difficult Behaviors
Session led by:  Alexandra Morris, Alzheimer’s Association
Circle of Care Conference, December 2016

Ms. Morris spent a good deal of time describing some typical dementia behaviors, why they occur and how to change or redirect these behaviors.

Ms. Morris reminded all of us that dementia behaviors are not deliberate. The care recipient has a disease and is exerting all of his or her energy to do the best they can with their disease.  Expending so much effort when trying to communicate and have the care recipient’s needs met can lead to “sundowning” at the end of the day.

Additional dementia behaviors can include repetitive questions, hiding/hoarding objects, delusions and hallucinations, suspicion, wandering and hitting. Besides exhaustion what leads to these behaviors? Here are some ideas.

The care recipient is a person who

– is an adult and doesn’t like being disrespected or under someone’s control

– is trying to get his or her needs met

– needs connection and purpose

– lacks insight into his or her condition

– is doing the best he or she can to deal with the cognitive challenges being experienced

– is  suffering from delusions or anxiety

– is irritated at something the caregiver said or did.

Ms. Morris gave us several tips to dealing with behaviors:

– Kindness versus Truth – “white lies” are better than anger, hurt or causing fear

– Appeal to the care recipient’s motivation (this may require practice to carry off successfully)

– Always say “yes” to a request.  If the outcome could endanger the care recipient, redirect to something safer as soon as possible.

– Don’t try to reason with or over-explain something to the care recipient

– If communication gets stuck, stop. Try physical movement to get unstuck (touch, gently direct the person towards where thy need to go).

– Tell a story – “I wondered about that…” “I’ll have to look into that…”

Probably one of the most difficult challenges happens when the care partner knows that a topic will agitate the person. Here are some tips:

– Determine if the conversation must be raised at all

– Interject with ” I have a question…”

– Change location

– Appeal to the person’s emotions, not the topic itself

– Use humor to defuse a charged situation

– Tell a “therapeutic fib” that helps move the conversation along without frightening the care recipient.

Every behavior has a purpose. You may have to put on your detective hat to determine what the purpose is.

– Let the issue go (“So what?”)

– Alter the situation to make it acceptable

– Keep responses and behavior slow, simple and calming

– Re-frame the issue/redirect to a more comfortable place

– Beg forgiveness rather than ask permission

Ms. Morris reminded the audience that as a care partner you can’t control memory loss, only your reaction to it. Remember that the care recipient’s disability is memory loss. Testing memory, lecturing the care recipient on their inability to find words or express appropriate emotions leads to suffering for all involved.  Instead refer only to the future (when the person with dementia mentions they want food, instead of saying “You ate an hour ago” say ” Why don’t I fix something for you in a bit?”).  Don’t use open-ended questions or try to initiate multi-step processes. Give the care recipient a simple choice between two items or direct their choice -“you look great in the green shirt.”

Finally, Ms Morris mentioned that the goal is to make life more calm and enjoyable for both you as care partner and for the care recipient. As you reassure the person remember that the care recipient cannot remember this reassurance. You’ll need to remind him or her each time.

“Medicare’s Coverage of Therapy Services Again Is In Center of Court Dispute” (KHN)

Incredibly, Medicare officials and consumer advocates are back in court again over the denial of therapy services (PT, OT, ST) to Medicare patients.

Here are some highlights from yesterday’s Kaiser Health News article:

* “Four years after Medicare officials agreed in a landmark court settlement that seniors cannot be denied coverage for physical therapy and other skilled care simply because their condition is not improving, patients are still being turned away. … The settlement affects care provided by a trained professional in a patient’s home, nursing home or the provider’s private office that is medically necessary to maintain the patient’s condition and prevent deterioration.”

* “Several organizations report that the government’s initial education campaign following the settlement has failed.”

* “‘We still regularly get calls from people who are told they are being denied coverage,’ said Peter Schmidt at the National Parkinson Foundation, based in Miami. Denials sometimes occur because physical therapy providers use a billing code that still requires the patient to show improvement. Although Parkinson’s is a degenerative brain disease, Schmidt said physical therapy and exercise can help slow its progress.

* “‘There was a long-standing kind of mythical policy that Medicare contractors put into place that said Medicare only pays for services if the patient could progress,’ said Roshunda Drummond-Dye, director of regulatory affairs for the American Physical Therapy Association. ‘It takes extensive effort to erase that.'”

Here’s a link to the full article:

khn.org/news/medicares-coverage-of-therapy-services-again-is-in-center-of-court-dispute/

Medicare’s Coverage Of Therapy Services Again Is In Center Of Court Dispute
Kaiser Health News
By Susan Jaffe
January 30, 2017

Robin

 

Care partner communication at all stages of dementia – workshop notes

Brain Support Network had an exhibitor table at the December 2016 Alzheimer’s Association (alz.org/norcal) “Circle of Care” conference in Foster City.  Steven Russell staffed our exhibitor table, where he talked to people about brain donation and our local support group for those with non-AD dementias.  He also had the opportunity to attend a few of the break-out sessions.  Here are his notes from the break-out session on “Care partner communication at all stages of dementia.”

Robin

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Steven’s Notes

Care Partner Communication at all Stages of Dementia
Session by:  Alexandra Morris, Alzheimer’s Association
Alzheimer’s Association Circle of Care
December 2016

EARLY STAGE

In early stages, where the diagnosis may be mild cognitive impairment, the person may be able to adequately express his/her thoughts, participate in and make decisions about future care but may also misinterpret what others say. People at this stage will have difficulty finding words, participating in/following conversations and struggle with decision-making or problem solving.  The care partner can connect with care recipient at this stage by using clear and straightforward sentences, leaving extra time for conversations (particularly responses), etc. Care partners should be especially careful to include the person in any conversation…related to future care decisions. Communicate in a manner that works best for the person (email, in-person, phone) and speak directly to him/her.

MID-STAGE

In mid-stage disease, language is reduced to basic words and sentences. The person receiving care is more likely to rely on tone of voice, facial expressions and body language to make a connection. At this stage, activities meaningful to the person with dementia are key to maintaining an emotional connection. Clues about cognitive changes include losing words (nouns go first), increasing trouble finding the right word and losing the train of thought or the thread of a conversation. Communication comes more through behaviors than words. Care partners can help by approaching from the front, saying who they are while calling the person receiving care by name. Care partners should move their level to match that of the care recipient, pay attention to tone of voice and take more time to let the conversation flow. Short sentences and basic words are best (one question at a time) and distractions should be limited. It is especially important to normalize experiences (for instance, if the care recipient is afraid, explain what is happening and show that you are not afraid).

Also at this stage, caregivers should join the care recipient’s reality. Keep respect and empathy in mind as you try to give the person multiple cues to help make and maintain a connection. Modeling behavior, keeping gestures fluid and overt (never sudden or coming from the side) repeating as necessary, avoiding “quizzing” about a topic and turning negatives into positives are great tools to help build trust. Writing things down, pointing them out or using photographs or pictures to convey meaning are also very helpful. One cue Ms. Morris mentioned is putting answers into your questions — “Would you like to wear the red shirt today?”  As verbal communication begins to decline, try and asses the care recipient’s needs (pain, bathroom, hunger, temperature, fear, boredom). People with dementia only receive half the pain medication needed compared to functional adults. In addition people with dementia are almost never treated for breakthrough pain (the person with dementia struggles to express this need so the care partner will need to always be alert to checking pain levels and advocating for patient comfort. Let the person with dementia know you hear his/her concern whether through words, behavior or both.

LATE-STAGE

In late-stage disease, the care recipient uses body language and his or her five senses to make a connection. The person may still respond to familiar words, phrases, smells or songs. Pain is often chronic at this stage . If the care recipient is agitated, always check first for pain, then bathroom, food, temperature, etc. The care partner should reply in a similar manner using all five senses to make a connection:

Touch – feel different fabrics, identify shapes by touch, give lotion hand massages, identify items in a bag by touch, visit animals, sculpt, hold the person’s hand;

Sight – brightly colored pictures to look at together, photo albums, paint with watercolors, go bird watching, sit at an open window;

Sound – particularly music (and personally meaningful music-the movie Alive Inside shows this very movingly), traditional or native language music, poems, whistling, singing and humming are all helpful;

Smell – baking (cookies are always great), aromatherapy with essential oils, flowers, grass clippings, fragrant lotions for hand massages;

Taste – favorite foods, popsicles, flavored drinks, ice cream.

At all stages of disease the care partner needs to understand and accept what can’t be changed. The person receiving care retains a sense of self, despite the many losses caused by dementia. You are visiting their world — join them there to make a connection. Always treat the person as an adult, worthy of respect and empathy. Try and decode what need the person is trying to express and help meet that need with soothing and calming words and actions. Recognize the effects of our moods and actions on the person receiving our care.

“Exercise Can Be a Boon to People With Parkinson’s” (NYT)

Here’s an interesting article in today’s New York Times about the value of exercise for those with Parkinson’s:

www.nytimes.com/2017/01/23/well/exercise-can-be-a-boon-to-people-with-parkinsons-disease.html

Well
Exercise Can Be a Boon to People With Parkinson’s Disease
Personal Health
New York Times
By Jane E. Brody
Jan. 23, 2017

I don’t think there’s any solid evidence that exercise slows the progression of Parkinson’s, but of course exercise has a host of benefits – physical and mental.  The same can certainly be said for all the disorders within Brain Support Network.

If you live in Northern California, check out this list of Parkinson’s-specific exercise classes:

parkinsons.stanford.edu/exercise.html

Many are appropriate for those with LBD, PSP, CBD, and MSA.

If you live outside Northern California or can’t leave your home, consider Parkinson’s-specific exercise videos.  You can find a list here:

parkinsons.stanford.edu/exercise_videos.html

Robin

Anosognosia (lack of awareness) in dementia

Someone on a frontotemporal dementia online support group recently suggested this “Senior Living Blog” post on anosognosia, which is a lack of awareness of impairment.  Though this post is focused on Alzheimer’s Disease, I believe it can affect those with non-AD dementias as well, such as LBD, PSP, and CBD.

Obviously if the family member has anosognosia, this is a difficult situation for the caregiver who wants to provide care and work with physicians to provide treatment.  Of course many of us think that our family member must be in a state of denial, when it’s really anosognosia.  Sarah Stevenson, the author of the “Senior Living Blog” post, addresses all of these issues.

Ms. Stevenson wisely draws on an AlzOnline article about anosognosia; it’s one of the best articles I’ve read.  See this email from 2009:

www.brainsupportnetwork.org/dealing-with-anosognosia-unawareness-of-decline-or-difficulties/

Ms. Stevenson also offers this suggestion:  Try reading “I Am Not Sick. I Don’t Need Help!” by psychologist Xavier Amador, a professor at Columbia University.  This book “provides practical recommendations for those who lack insight into their mental illnesses.”

Here’s a link to the post:

www.aplaceformom.com/blog/3-4-14-anosognosia-and-alzheimers/

Senior Living Blog
Anosognosia and Alzheimer’s
A Place for Mom
By: Sarah Stevenson
Posted On 22 Mar 2016

Good luck!

Robin