CurePSP is hosting a two-hour virtual wellness workshop on Wednesday, April 19 starting at 3pm PT. Speakers will focus on self-care for better sleep and wellbeing; seated movement and breathwork; and music therapy. (The presentations will be recorded and posted on the CurePSP YouTube channel.) Following the presentations, participants can join a one-hour interactive discussion group, reflecting on what wellness means to them. Registration is free.
In late June 2022, CurePSP (curepsp.org) hosted a webinar on “Managing Swallowing Changes in PSP, CBD, and MSA” with Stanford speech language pathologist (SLP) Julie Hicks. Her presentation provided general information about working with an SLP, what a swallowing evaluation looks like, and what treatment might involve. In the question-and-answer period, Julie Hicks addresses when to see an SLP, the use of feeding tubes, practical tips families can use to help people slow down and control impulsivity while eating, and how to find an SLP with experience treating those with parkinsonism disorders.
Since parkinsonism disorders can be confused for each other — Parkinson’s disease, Lewy body dementia, progressive supranuclear palsy, multiple system atrophy, corticobasal degeneration, and vascular parkinsonism — especially early on in the disease process, perhaps more important than the clinical diagnosis is the prognosis.
Dr. Larry Golbe, a world-renowned expert on progressive supranuclear palsy (PSP), has his own blog (psp-blog.org) to which he occasionally publishes insights into the latest research.
In late March 2022, he published about two papers he read on the protein TMEM106B. He says, “This stuff is known to be a component of healthy lysosomes and endosomes, components of the cell’s garbage disposal mechanism.”
[One paper] found that the brains of healthy elderly persons have abnormal aggregates of a misfolded form of the protein TMEM106B. These abnormal aggregates were found “even more abundantly in a raft of neurodegenerative diseases: Alzheimer’s, CBD, multiple types of FTD, Parkinson’s, dementia with Lewy bodies, multiple system atrophy and multiple sclerosis.”The second paper (authors from Columbia University, Mayo Clinic Jacksonville, etc) “found the same TMEM106B aggregates” in those with PSP.
Dr. Golbe says,
An interesting finding is that unlike tau, TMEM106B misfolds the same way in all the diseases analyzed so far. This may have huge potential implications: if (and this is a big “if”) the misfolded TMEM106B plays an important role in the formation of the misfolding and toxicity of tau and the other disease-specific proteins, and if (another big “if”) this misfolding is the rate-limiting step in the loss of brain cells in the neurodegenerative disorders, THEN preventing TMEM106B from forming or from misfolding, or targeting it with antibodies or drugs could be the silver bullet that prevents all of these diseases, PSP included. That could be a naïve hope…
Read Dr. Golbe’s blog post:
“Common thread, silver bullet, naïve hope?”
Dr. Larry Golbe
March 16, 2022
Let’s hope!
Since 2004 (17 years!), we have convened nine support group meetings each year for caregivers of those with Lewy body dementia (LBD), progressive supranuclear palsy (PSP), multiple system atrophy (MSA), corticobasal degeneration (CBD), and atypical parkinsonism.
These are separate — yet simultaneous — meetings for each disorder, though the PSP and CBD groups are usually together. Among all of three simultaneous groups, attendance is 20-30 total. We welcome family/friend caregivers living in Northern or Central California. Contact us if you’d like to be added to the meeting reminder email list.
Of course during the COVID-19 pandemic, our groups are meeting virtually. Most participate with video, but it is perfectly fine to join by phone-only.
The discussion is led by caregivers who have lost their family members to these disorders. In most cases, the family member donated his/her brain and the diagnosis has been confirmed. (Brain Support Network can assist your family in making brain donation arrangements.) Discussion leaders include:
These caregiver-only support group meetings are held on Sundays from 5pm to 7pm. The dates for our 2021 meetings are:
In selecting these dates, we have avoided as many cultural events, sporting events, and holidays as possible.
Please put these caregiver-only support group meeting dates on your 2021 calendars now. An email requesting RSVPs will be sent out a week or so before each meeting. RSVPs are always due by noon on the Saturday (one day) before each meeting.
All family/friend caregivers are invited: primary, secondary, those giving hands-on care, and those managing care. Newcomers, casual visitors, and longtime attendees are all welcome! Former caregivers–those whose loved ones have already passed away–regularly attend. Former caregivers have been through it all and are invaluable resources to those learning to cope. (Our group is NOT intended for professional caregivers.)
If you are an active caregiver with a loved one at home, consider asking for a “respite care grant” from your county’s agency on aging or from your local caregiver resource center (see caregiver.org/californias-caregiver-resource-centers). Such grants pay for a caregiver to be in your home while you attend support group meetings. The Alzheimer’s Association (alz.org/norcal) also offers respite grants for those dealing with dementia.
We occasionally have guests. Guests have included a family consultant from Family Caregiver Alliance, a board member of the Lewy Body Dementia Association, and a board member of CurePSP.
We have over 450 members now, with attendance of 20-30 at caregiver support group meetings (among the three simultaneous group meetings). Roughly speaking, of the 450 members, 50% have an LBD connection, 30% have a PSP connection, 18% have an MSA connection, and 2% have a CBS/CBD connection or Atypical Parkinsonism connection. (I believe we have the largest PSP, LBD, and MSA local support groups in the US.) If you have suggestions on how we can get the word out about our group, let me know!
We look forward to seeing you at some meetings in 2021!
By the way, if your family member with a neurological diagnosis of MSA, PSP or CBD would like to meet virtually with others, let us know. We will try to arrange this.
