“FTD talk” fact sheets on PSP and CBD plus BSN’s top resources lists

FTD talk (ftdtalk.org) is a website run by a group of scientists investigating frontotemporal dementia (FTD) at the University College
London Institute of Neurology in the UK.  The site’s focus is on the behavioral variant of FTD.

However, they have one-page fact sheets on PSP and CBD:

“What is corticobasal syndrome?”
www.ftdtalk.org/ftd-factsheets/factsheet-9-what-is-corticobasal-syndrome/

“What is progressive supranuclear palsy?”
www.ftdtalk.org/ftd-factsheets/factsheet-10-what-is-progressive-supranuclear-palsy/

These aren’t my favorite resources on PSP and CBD but there may be some value in a one-pager.

The resources we do like are here:

PSP Top Resources
www.brainsupportnetwork.org/education/progressive-supranuclear-palsy/#resources

CBD Top Resources
www.brainsupportnetwork.org/education/corticobasal-degeneration/#resources

Palliative care discussions in MSA – when to have, what to discuss, etc.

This is an interesting study published in May 2017 about palliative care discussions (or the lack there of) among 22 Canadian patients with multiple system atrophy (MSA) seen at a movement disorder center.  “Palliative care discussions” include diagnosis and symptom management, prognosis, goals of care, and comfort measures.  Interestingly only 16 of the 22 patients discussed these issues with their MDs, according to medical records.  (So maybe not all “discussions” are recorded in patient charts.)

You can find the full article here:  (available at no charge)

https://www.cambridge.org/core/journals/canadian-journal-of-neurological-sciences/article/palliative-care-discussions-in-multiple-system-atrophy-a-retrospective-review/4F1398B9A85ECA7588455DCAD237C6B3/core-reader

(Thanks to long-time friend Vera James for sharing this link with me.)

The authors argue that “Early and effective advance care and end-of-life planning discussions are…essential for effective palliative care in MSA. … [These] discussions … will allow people with MSA to make treatment decisions that better align with their goals of care prior to an emergent situation.”

And the authors argue that advance care planning must taken into account respiratory dysfunction.  “Respiratory dysfunction, including but not limited to stridor, is the leading cause of death for people living with MSA, and it may present acutely with or without prior evidence of stridor.”

Perhaps these discussions are not occurring because stridor and sleep apnea are NOT the most common symptoms seen in MSA?  Both symptoms occur among a minority of patients.  Among the 22 Canadian patients, the most common symptoms were parkinsonism, orthostatic hypotension, GI/GU dysfunction, gait impairment, and ataxia.

But even patients with “modified diets did not have a documented discussion about possible future requirements for artificial feeding.”

However, if you have stridor, your medical team is more likely to discuss advance care planning with you (and document it in the medical record).  “Five of the six patients with stridor had a documented discussion about tracheostomy before one was required for life-sustaining purposes. Of the three patients who required emergent tracheostomy, one had a documented discussion declining tracheostomy in the management of stridor. Nevertheless, this patient was later intubated in intensive care secondary to respiratory failure.”

Of the 22 patients, 6 were deceased.  Though one of those six had a DNR (do-not-resuscitate) order in place, resuscitation was attempted by the care facility where the patient was living.
And only 2 of those six had a healthcare agent listed in the medical record.  Four of the six died in ICU.  Of those four, “discussions surrounding resuscitation and goals of care took place” days or hours before death.

The authors say:  “Our chart review shows clear gaps in the current approach to advance care planning, goals of care and palliative care discussions in patients living with MSA, at least at our centre. Important advance care planning and end-of-life discussions took place very late in the disease trajectory and often at a time when the affected person was no longer able to participate. While our study is limited to a retrospective review of charts at a single centre, it nonetheless shows significant gaps in the provision of care.”

To remedy this situation, the authors propose a framework for palliative care discussions in MSA:

“In the early stages of MSA, it is important to determine who the person with MSA would like to have present for important healthcare discussions in general, and then establish each patient’s readiness to discuss end-of-life decisions. Since diagnosis of MSA is difficult, there may be a period of ambiguity regarding the diagnosis, and the patient might not yet be receptive to hearing about the disease trajectory and his/her prognosis. Nevertheless, even without a determinate diagnosis, identifying personal supports and discussing personal values will help to inform and simplify future discussions regarding end-of-life care, when appropriate. Information regarding diagnosis, expected disease trajectory, symptom management and prognosis should be disclosed to the person with MSA and his/her family or an appointed decision maker, where possible. Physicians should initiate and document the results of important discussions, after assessing the patient’s readiness for such discussions. These include the identification of a substitute decision maker or power of attorney for healthcare, the presence of advance care plans, preferences regarding artificial nutrition and hydration, including their expected benefits or the lack thereof, end-of-life care wishes and preferred place of death. While tracheostomy may extend the length of life, it does not, in our view, extend or improve the quality of life. Therefore, it is important to discuss tracheostomy and to document the patient’s wishes surrounding tracheostomy before an unexpected emergent event.”

The authors expect the neurologist to be active participants in the palliative care process.  Neurologists can also make referrals to more specialized palliative care services.

“For some people, a referral [to palliative care] at the time of diagnosis might be appropriate, whereas for other people it may be more appropriate to initiate a referral once further severe symptoms develop, including dysphagia, stridor, sleep-disordered breathing, severe orthostatic blood pressure changes, increasing falls or other symptoms of distress.”

“Common Myths Of Hospice Care Debunked”

This article is about five of the common myths and misconceptions associated with hospice care. Many are reluctant to learn about hospice until they are in need of the service leaving a gap in understanding which makes the decision to start even more difficult. The five common myths are as follows:

  1. Hospice places a time limit on patient stays and hastens death.
  2. People have to go to hospice centers in order to receive hospice care.
  3. Hospice care requires you to stop taking medications.
  4. Hospice depends on sedation as a major way to manage patients’ pain.
  5. Once you’re enrolled in a hospice program, there’s no turning back.

To learn more about each see the full article below:

https://www.forbes.com/sites/nextavenue/2015/02/25/common-myths-of-hospice-care-debunked/#ef8268645277

“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