Pain more severe and common in PD and MSA compared to PSP

In this small study, these patient populations were compared — 21 with multiple system atrophy (MSA), 16 with progressive supranuclear palsy (PSP), and 65 with Parkinson’s Disease (PD).  Europeans researchers showed that pain was “significantly more common and more severe in PD and MSA compared to PSP.”

The full abstract is copied below.



Brain & Behavior. 2015 May;5(5):e00320. Epub 2015 Mar 25.

Pain in multiple system atrophy and progressive supranuclear palsy compared to Parkinson’s disease.

Kass-Iliyya L, Kobylecki C, McDonald KR, Gerhard A, Silverdale MA.

Pain is a common nonmotor symptom in Parkinson’s disease (PD). The pathophysiology of pain in PD is not well understood. Pain characteristics have rarely been studied in atypical parkinsonian disorders such as Multiple System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP).

We aimed to evaluate pain intensity, location, and associated symptoms in atypical parkinsonian disorders compared to PD.

Twenty-one patients with MSA, 16 patients with PSP, and 65 patients with PD were screened for pain using question 1.9 of the MDS-UPDRS. Pain intensity was quantified using the short form McGill Pain Questionnaire (SFMPQ). Pain locations were documented. Motor disability was measured using UPDRS-III. Affective symptoms were assessed using the Hospital Anxiety and Depression Scale (HADS).

Pain was significantly more common and more severe in PD and MSA compared to PSP (P < 0.01). Pain locations were similar with limb pain being the most common followed by neck and back pain. Pain intensity correlated with HADS scores but not motor severity.

Pain is more common and more intense in PD and MSA than PSP. Differences in distribution of neurodegenerative pathologies may underlie these differential pain profiles.

PMID: 25874161

“Tips for health and sanity that every caregiver needs”

This is a useful blog post on the PBS Newshour website by Leah Eskenazi, MSW, from Family Caregiver Alliance.

Tips for health and sanity that every caregiver needs
by Leah Eskenazi, MSW
PBS Newshour
March 27, 2015

Here are some excerpts:

Researchers continue to study the possible negative effects of caregiving on health and well-being. We know, for example, that spouses who provide care, who are between the ages of 66 and 96, and who are experiencing mental or emotional strain, have a 63 percent higher risk of dying than people the same age who are not caregivers. A combination of emotional loss, prolonged stress and the often-heavy physical demands of caregiving, along with age-related vulnerabilities — physical frailty, sensory impairment, health problems of the caregiver — can increase caregivers’ risk for earlier death.

For adult children, caring for a parent, spouse, partner or other relative while also juggling work, raising children and maintaining a relationship can contribute to an increased risk for depression, impaired immune system and likelihood for developing one or more chronic health conditions, such as hypertension, high blood pressure and/or high cholesterol.

There are some helpful tips in the article for all caregivers.


Resource for Advance Care Planning – lifecareplan (Kaiser)

Quite a few of our local support group members are seen at Kaiser, and a few group members are actually Kaiser employees.  One of our group members let me know about this Kaiser-produced resource – open to anyone – for advance care planning.  Kaiser calls this “life care planning,” and has created a website devoted to reflecting on your values, selecting a health care agent, expressing your decisions, and sharing your wishes.  Here’s a link to Kaiser’s website:

Each page includes a short video (less than one minute) that introduces one aspect of life care planning.

Here are the suggested steps from Life Care Planning to reflect on your values:

Your values are at the center of your life care plan

Life Care Planning is fundamentally about you and that’s why values are at the center of the planning process. It is about knowing what is most important to you and communicating how that affects your wishes for future health care.

Who we are, what we believe, and what we value are all shaped by the experiences we have had. Many parts of our lives – faith, family, jobs, and friends – all affect us deeply. We are also influenced by other people’s experiences.

We encourage you to answer the questions that follow and to discuss them with your agent. They are meant as a guide, not as a test, and there are no right or wrong answers.

Step 1: Think about what makes you unique

Spend some time considering the following areas and how, if at all, they have shaped your feelings about medical treatment?

? Personal values: What is most important to you in life? What unique beliefs do you have that others may not know about?

? Cultural values: What is most important to you when it comes to your culture? Are there cultural traditions that might impact your decisions for medical care?

? Religious values: What religious or spiritual values are most important to you? How do your religious beliefs influence the medical care you would want?

Step 2: Clarifying your values helps you consider the decisions that you would want made on your behalf.

? If you were having a really good day, what would you be doing?

? What gives your life meaning (i.e. the people closest to you, spending time in nature, your spirituality or faith, listening to music, working or volunteering, being a parent, grandparent, daughter or son)?

Step 3: Consider experiences that matter:

? What experience have you had with someone you know (or have heard of) who became suddenly ill or injured?

? What did you learn from that experience that helps you to better understand your own values?

Discussing these issues with family, others in your culture, spiritual leaders, or friends in your religious community can help you feel confident in your choices.

Your answers to these questions are very important to your future health care decisions. We encourage you to keep them in mind as you continue to explore this website.



Mayo Clinic study of thousands of brains reveals tau as driver of AD

This post is about Alzheimer’s though it’s likely of interest to those dealing with PSP and CBD, and of some interest to those dealing with LBD.  Both PSP and CBD are tauopathies, or disorders of the protein tau.  LBD is not a tauopathy but it commonly co-occurs with the largest tauopathy – Alzheimer’s Disease.

This Mayo Clinic press release from last Tuesday is focused on Alzheimer’s Disease (AD).  AD is a disorder of two proteins – tau and amyloid.  There has long been a dispute in the researcher community as to which tau or amyloid is the “culprit” in AD.  (The two camps are called the tauists and the baptists.  bap = beta amyloid protein.)

In this major study of 3600 donated brains at the Mayo Clinic in Jacksonville, Mayo researchers conclude that tau is the primary culprit.  And efforts should focus on halting tau.

This is great news for the PSP and CBD communities because if researchers can solve the problem of tau building up, then they may be able to treat PSP and CBD.

At the link, there’s a one-minute video with Dr. Melissa Murray explaining the findings.  I usually find such videos worthwhile but this one was too short and too much of a summary to be of interest to me.  Your opinion may be different!

Mayo Clinic study of thousands of brains reveals tau as driver of Alzheimer’s disease



More on “The Conversation Project” (End of Life)

Since this 2012, I haven’t seen a lot about “The Conversation Project” in the popular press.  But now they are in the news again.  For the last several months, the Boston-based non-profit, The Conversation Project, has been expanding its public engagement campaign through a TED talk in Boston (October 2, 2014), working with TV script writers to get end-of-life conversations inserted into TV shows, organizing “Death over Dinner” parties, conducting a Twitter chat (Thurs, April 2nd, 1-2pm eastern), etc.

There was also a 10-minute segment yesterday on the PBS Newshour about having end-of-life conversations with family and loved ones.  See:

For me, the most interesting aspects of the Newshour segment were:

* Medicare is considering whether it should cover doctor-patient conversations about end-of-life care.  During the Obamacare debates, some called such conversations “pulling the plug on grandma.”  A palliative care MD interviewed in the Newshour segment said:

“It is exactly the opposite.  It is about grandma controlling the plug. Grandma or her designee controls the plug and that’s the system we’re going to have.  … The full range of the choices.  From ‘Keep me alive, no matter what, as long as medicine can do that,’ to ‘I just want to be home with my family, with hospice,’ to anything in between or any sequence.”

* The idea that conversations with our loved ones need to go beyond “pull the plug” statements.  The founder of the non-profit, Ellen Goodman, talked about her mother:

“From time to time if we were together my mother would say, ‘I never want to be like that.  Pull the plug.’  You know. A lot of people say that.  Well, there’s generally no plug to pull. … [Later on, my] mother could really no longer decide what she wanted for lunch, let alone what she wanted for health care decisions.  [One] day when I got a call on the phone…the doctor said to me, ‘Your mother has another bout of pneumonia.  Do you want her to have antibiotics?’  …[It] was quite shocking to me that those decisions fell to me.  I’d just never thought about it before.”

If you don’t want to watch the 10-minute segment, there’s also a transcript available on the same webpage.