Category Archives: Parkinson’s

“The bad news: I don’t have Parkinson’s”

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“The bad news: I don’t have Parkinson’s”

Last week in the Birmingham News, a journalist named Mike Oliver revealed that he was recently given a diagnosis of Lewy Body Dementia (LBD).  He had previously written in September 2016 that his diagnosis was Parkinson’s Disease.  But new symptoms pointed to LBD.

Mike uses the term “Lewy body disease” and describes the condition as being “like Parkinson’s and Alzheimer’s combined.”
He says:

“The disease works and presents like Parkinson’s. In both cases, these proteins kill neurons. It’s just that with Lewy body disease the proteins are killing neurons over a wider swath of the brain. … The big difference is that with Lewy body disease, the dementia comes early, sometimes before any movement disorders are noticed. With Lewy body disease, dementia is often accompanied by hallucinations and REM behavior disorder, which cause people to physically act out their dreams, hitting, kicking or talking.”

Here’s a link to the full article:

www.al.com/news/birmingham/index.ssf/2017/02/im_losing_my_mind_–_literally.html

The bad news: I don’t have Parkinson’s.
Birmingham News
By Mike Oliver | [email protected]
on February 20, 2017 at 12:04 PM

Robin

 

“You, Your Loved One, and Parkinson’s” – some relevant advice

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“You, Your Loved One, and Parkinson’s” – some relevant advice

In May 2016, “Partners in Parkinson’s” (partnersinparkinsons.org – a partnership between the Michael J. Fox Foundation and a pharmaceutical company) hosted a conference in Oakland on PD. In the planning stages, I was asked to nominate a social worker for a panel. I recommended Marguerite Manteau Rao, LCSW, a long-time friend of Brain Support Network who is an expert in mindfulness and dementia caregiving. The panel that Marguerite participated in was focused on “strategies to help caregivers and their loved ones cope with a new diagnosis.” The discussion was recorded and the recording has just been posted online, finally.

To watch the 37-minute recording, visit the Partners in Parkinson’s video page, click on “You, Your Loved One, and Parkinson’s Disease,” and complete a short registration (name, email address, zip code). (Note that you can enter “fake” info.) Start here:

Partners in Parkinson’s
www.partnersinparkinsons.org/watch-our-videos

I watched the recording and believe it applies to those within Brain Support Network, even though we aren’t dealing with Parkinson’s Disease. Also, I think the suggestions given apply not just to the newly-diagnosed community. Of course I’m biased but I thought the best part of the video was Marguerite. She encouraged caregivers to prepare for a “marathon” by establishing both inner and outer resources. An inner resource mentioned is mindfulness. And outer resource mentioned is education.

Brain Support Network volunteer Denise Dagan also watched the video. She said that a few bits of advice stood out for her:

1. Resist projecting too far into the future. Worrying about what might happen adds unnecessary stress. To calm yourself in the face of frustration and stay grounded in “now,” learn mindfulness.

2. Having the attitude that you are care partners helps to maintain your individual identities and relationship before [a diagnosis]. Maintain separate activities and relationships around those activities helps with this, as well as reducing caregiver stress and resentment, and increasing healthfulness and energy.

3. Support ‘groups’ don’t have to be formal. One can get involved with the [disorder] community by taking exercise classes, volunteering for a clinical trial, or raising funds.

4. Exercise, exercise, exercise.

5. Consider a few counseling sessions for the tough issues, especially if a diagnosis has piled on top of unresolved issues.

6. Educate yourself about symptoms, medications, etc.

Here are Denise’s extensive notes from the video.

Robin

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www.partnersinparkinsons.org/watch-our-videos

Denise’s Notes to

“You, Your Loved One and Parkinson’s Disease”
Partners in Parkinson’s
May 14, 2016, Oakland, CA
Panelists: Jenn Haraja (adult child caregiver), Jim (has PD) and Roberta (spouse caregiver) Hurt, Marguerite Manteau Rao (social worker)
Moderator: Dave Iverson

This 37-minute video is a panel discussion of strategies to help caregivers and their loved ones navigate a new diagnosis.

Dave started by asking Roberta about coping with Jim’s diagnosis.

It was not a surprise because the family suspected Parkinson’s Disease (PD) before his diagnosis. She has helped him through 11 surgeries, so this is more care-partnering. As a couple they have good family support.

Then Dave asked Jenn about the adjustment to her mom’s diagnosis and how it affected their relationship. Her first reaction was fear of the unknown. Much of her family is in healthcare so her answer was online research but there’s so much information, sometimes that’s scary, too. She relied on the Michael J Fox Foundation as a reliable resource.

Marguerite’s recommendation as to what to do early on. “It’s a marathon, so you need to establish both inner and outer resources.” Sometimes you need to educate yourself and even healthcare professionals about your family member’s diagnosis and treatment. Try mindfulness as an inner resource against stress, resist projecting too far into future, and calm oneself in the face of frustration with symptoms and healthcare staff.

Jim has found his strength in his wife’s support and encouragement. Initially, he was anxious, apathetic, and depressed, but vowed to do everything possible to live a normal life. His resources are Partner’s in Parkinson’s, the Parkinson’s Movement Disorder Alliance, and support groups.

How does Roberta manage to motivate Jim to do what’s needed and keep moving? She says it’s his willingness to take her reminders, even if others may view it as nagging.

Marguerite says Jim and Roberta’s attitude of care partnership is crucial to that cooperative relationship. A caregiver must give person with PD options and a level of decision-making so they don’t feel a total loss of independence and control. Be sure the caregiver isn’t letting cognitive deficits get in the way of helping the person to get moving and accomplish what needs doing for their own self-care.

Dave asked how Jenn and her Mom have decided to handle the issue of becoming a burden on her kids. Jenn says her Mom has always been active and with Michael J Fox Foundation Team Fox events, her whole family engaged with others in the PD community, including her mom. They focus on now, life, involvement in the PD community, and PD support groups because old friends probably don’t know or understand your new challenges.

Dave asked Jim about how not to be a burden on Roberta. Knowing the depth of her love and support from family, friends and the community helps. Roberta also finds support in the community and says it is huge to carve out time for yourself to maintain those relationships and some distance from constant caregiving. It helps her maintain a positive attitude toward Jim, and insists he has his own activities and relationships independent from her.

Marguerite’s comment is to encourage everyone not to identify with the label: caregiver. There’s a lot more to you than that label. You need to have other roles – employee, daughter, mother, artist, gardener, etc. The more roles you have, the less burned out you will be. Ask yourself why you may be clinging to the caregiver role and why it isn’t working for you because you will find out sooner or later, that it’s not working.

Dave asked Jim about his participation in support groups because men sometimes resist that. Jim feels it helps him keep active mentally, physically, and spiritually. Knowing others going through the same thing, he finds helpful. He could attend four, but started his own with about six people for whom he brings in speakers. Organizing the group, rather than just attending keeps him busy.

For Jenn, support groups don’t have to be formal, but can be ad hoc, like her involvement with the Michael J Fox Foundation’s Team Fox.

Jim and Roberta have been married for 60+ years because of their commitment, love, sensitivity to other’s feelings and desires. Commitment to them is the old fashioned wedding vows. There’s no dread or resentment about helping each other.

Marguerite’s experience is that not all couples are not like them but may have a history of anger and resentment before Parkinson’s is thrown into their path. Staying together takes a willingness to work through those difficult feelings. Mindfulness, self compassion, and not feeling guilty can help your inner self, but you may still want to look outside yourself for support.

Dave suggests that Parkinson’s calls upon you to be your best. Roberta hopes so. There are easy days and difficult days, but you just do it. Janet had good roll models in her parents looking after their parents, so she wasn’t expecting her mom to get young onset PD, but you just step up. She’s married to a native Tanzanian where the family is the support system, not institutionalizing anyone. His view about that means they are on the same page in looking after her mom. Caregiving is a role, but so is husband and wife, mother and daughter, and that comes first, always.

Roberta and Jim’s best advice is exercise, exercise, exercise. He has learned to love it! Roberta recommends a movement disorder specialist. To spouses, she says remember you are still the same people, regardless of Parkinson’s.

Marguerite’s comment is how little people seek counseling, even in the face of this remarkable journey and the new demands you face. Perhaps your relationship isn’t as well grounded as Jim and Roberta. Consider just a few sessions to mediate these difficult feelings.

Jenn says ask as many questions as you can and become an expert in Parkinson’s. That’s the best way to be supportive to your family member. Exercise with your family member in whatever way you enjoy being active.

The book “Brainstorms: The Race to Unlock the Mysteries of Parkinson’s Disease” is recommended by Jenn and Dave as a good grounding in PD and PD research.

Facial Masking – Blog and Podcast Notes

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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

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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.

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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.

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

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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

 

California stem cell agency “has funded just a trickle of clinical trials” (STAT)

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California stem cell agency “has funded just a trickle of clinical trials” (STAT)

Here’s a special report on CIRM, the California Institute for Regenerative Medicine, which is the state’s stem cell agency, from STAT (statnews.com), a website that reports “from the frontiers of health and medicine.”  The bottom line for the author is that the state agency has funded a small number of clinical trials compared to the NIH.

Here’s a link to the report:

www.statnews.com/2017/01/19/california-stem-cell-agency-cirm/

Special Report
California voters were promised cures. But the state stem cell agency has funded just a trickle of clinical trials    
STAT
By Charles Piller
January 19, 2017

Robin