Category Archives: CBD

2017 Brain Support Network Caregiver-only Support Group Meeting Dates Set

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2017 Brain Support Network Caregiver-only Support Group Meeting Dates Set

One of Brain Support Network’s three missions is to coordinate the Northern California caregiver-only support group for those who have family members or loved ones with a diagnosis of one (or more) of four disorders:

  • LBD (Lewy body dementia).  This disorder is also called Dementia with Lewy Bodies or Parkinson’s Disease Dementia.
  • PSP (progressive supranuclear palsy)
  • MSA (multiple system atrophy)
  • CBD (corticobasal degeneration). This disorder is also called corticobasal syndrome.

These four neurodegenerative conditions have much in common.

We also welcome those who have family members with an atypical parkinsonism or Parkinson’s Plus diagnosis.

We have established our 2017 caregiver-only support group meeting schedule.  As always, we will be having nine meetings this year.

If you’d like to be added to the support group meeting reminder email list, please contact us and let us know what disorder you are coping with and which loved one has the diagnosis.

WHO IS INVITED

All caregivers are invited — primary, secondary, those giving hands-on care, those managing care, and those giving emotional and informational support.

Newcomers, casual visitors, and longtime attendees are all welcome!

Former caregivers — those whose loved ones have already passed away — regularly attend; these people have been through it all and are invaluable resources to those learning to cope.

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 local chapter of the Alzheimer’s Association (alz.org/norcal) also offers respite grants for those dealing with dementia.

We occasionally have guests.  Guests have included a neurologist, a family consultant from Family Caregiver Alliance, the president of the board of the Lewy Body Dementia Association, the co-founder of the LBDA, and the moderator of the PSP Forum.

HOW IT WORKS

We generally sit at one very large table, grouped by disorder.  For the last several years as our numbers have grown, some of the meeting regulars (one or two for each disorder) have become discussion facilitators.  They include:  Phil, Cristina, Ellen, and Sharon (PSP), Candy, Karen L., and Lily (MSA), Dick, Mindy, Val, and Cheryl (CBD), and Dianne, Alexa, and Bari (LBD).

We manage a lending library where books, DVDs, and videos get passed around.  And often at meetings group members bring items to give away.

SUPPORT GROUP DIRECTORY

At the beginning of 2012, BSN Board member Phil Myers suggested distributing a sign-up list so as to facilitate sharing contact info for anyone interested.  Phil emails out the updated directory after each meeting; it includes all the people who have attended a meeting in the past three years.  For privacy reasons, only those who are on the list may receive a copy.

RSVP PROCESS

One week before each caregiver support group meeting, we send out an email reminder and ask for RSVPs.  This reminder comes from the “BSN Support Group” email address.

If you’d like to be added to the support group meeting reminder email list, please contact us and let us know what disorder you are coping with and which loved one has the diagnosis.

CAN’T ATTEND OUR MEETINGS

If you don’t live in Northern California or aren’t able to attend our meetings, feel free to join our email lists.

Also, check out our webpage about online or phone-based support groups.

Support is critical!

Robin

 

Very brief overview of five Parkinsonian syndromes

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Very brief overview of five Parkinsonian syndromes

On Kaiser’s website, there’s a very brief overview of five Parkinsonian syndromes – progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), multiple system atrophy (MSA), dementia with Lewy bodies (DLB), and vascular parkinsonism.  The first four are the focus on Brain Support Network’s local support group and educational materials.

I’ve copied the short overview below.  It’s odd that there’s so little on PSP yet there’s a lot on CBD, which is quite rare.
Robin
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mydoctor.kaiserpermanente.org/ncal/mdo/presentation/conditions/condition_viewall_page.jsp?condition=Condition_Parkinsonian_Syndrome.xml&showProvider=true
Parkinsonian Syndrome
Kaiser Northern California Website

Overview
Up to 20 percent of patients with clinical features resembling Parkinson’s disease actually have a Parkinsonian syndrome. They can be referred to as “atypical Parkinson’s” or “Parkinson’s plus.” These syndromes are clinically differentiated from “classic” Parkinson’s disease because they respond less reliably to medications and tend to progress more quickly.

Symptoms and Diagnosis
We might suspect that you have atypical Parkinson’s if you:

* Do not respond robustly to levadopa or dopamine agonists.
* Do not have a significant tremor.
* Experience early loss of balance.
* Have disproportionate rigidity.
* Experience prominent early speech difficulty and/or difficulty swallowing.
* Exhibit symptoms that progress rapidly.

We make a diagnosis based on your history, symptoms and physical examination. There are no tests or imaging studies to confirm a diagnosis.

Types
Progressive supranuclear palsy (PSP)
PSP is characterized by early onset of balance problems, frequent falls, and (eventually) eye movement problems.

Corticobasal degeneration (CBD)
People with corticobasal degeneration experience nerve cell loss and shrinkage (atrophy) throughout the brain.  CBD is a rare progressive disorder marked by the following symptoms:

* Rigidity.
* Cramping and spasms of limbs that lead to painful unnatural positions.
* Uncontrolled movement of limbs combined with a feeling that the limb does not belong to you.
* Sudden muscle jerking.
* Early cognitive impairment.

Multiple system atrophy
Multiple system atrophy (MSA) is a neurodegenerative disease characterized by a variety of symptoms affecting movement, blood pressure, and other body functions.  Hence the label “multiple system” atrophy. All patients will exhibit some motor symptoms similar to Parkinson’s disease. However, most patients will develop additional symptoms.

In the Shy-Drager form of MSA, the most prominent symptoms are blood pressure control and urinary dysfunction. The Striatonigral Degeneration form of MSA is characterized by severe rigidity and may not respond to typical dopamine medications. The Olivopontocerebellar Atrophy form of MSA causes increased lack of muscle coordination, balance problems and speech difficulties.

Dementia with Lewy bodies
Lewy bodies are abnormal collections of protein that develop inside nerve cells. In Parkinson’s disease, patients do have Lewy body formations but only in select areas of the brain. When Lewy bodies are found throughout the brain, the patient is given the diagnosis of Dementia with Lewy Bodies.

Lewy bodies can only be confirmed by a post-mortem biopsy of the brain. For this reason, we use the patient’s clinical history to make a diagnosis. Symptoms we look for include fluctuating confusion, visual hallucinations, rapid cognitive decline and some motor symptoms of Parkinson’s disease. Patients with Dementia with Lewy Bodies do not respond to dopamine medication.

Vascular Parkinsonism
Multiple small strokes deep within the brain can cause symptoms that are similar to Parkinson’s disease. Patients with this disorder are more likely to experience difficulties with walking rather than tremor and they are more likely to have symptoms that are worse in the lower extremities than upper extremities.

Treatment focuses on preventing further strokes. Anti-platelet agents, such as aspirin, anti-cholesterol medications, along with treatment of high blood pressure, healthy diet and exercise, and cessation of smoking can significantly reduce the risk of future strokes.

“Pain in PD” webinar, Tues, Jan 10th, 10am CA time

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This Parkinson’s Disease Foundation (pdf.org) webinar on Tuesday January 10th may be of interest to those in Brain Support Network who are coping with pain.  The slides for the webinar are already posted to the PDF website.  If you are interested in the webinar but cannot attend live, I encourage you to sign up.  Within a few days of the webinar, you will receive an email giving you a link to the recording.

Details are below.

Robin

Parkinson’s Disease Foundation (PDF) Webinar

Pain in PD
Tuesday, January 10, 2017
Start time:  10am California time
Duration:  One hour

Do you experience pain as part of your Parkinson’s disease (PD)? Are you looking for ways to better manage it? Learn more by joining a one-hour online seminar led by PDF and Jori E. Fleisher, M.D., M.S.C.E., Assistant Professor of Neurology and Population Health, The Marlene and Paolo Fresco Institute for Parkinson’s and Movement Disorders at NYU Langone.

Learning Objectives:
* Understand how common pain is in Parkinson’s disease
* Be able to identify and describe the different types of pain commonly experienced in Parkinson’s
* Learn about current treatments for pain in PD, including both pharmacological and non-pharmacological options

Sign Up Now:
event.netbriefings.com/event/pdeb/Live/pain2/register.html

Preview Seminar Slides (may take several minutes):
www.pdf.org/pdf/slides_pdexpertbriefing_paininPD_010617.pdf

Problems families dealing with dementia may face

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I recently stumbled across the website, patient.info, which is a resource for UK physicians about various disorders.  The website contains a helpful page about caregiving for someone with dementia.  Though it is written with physicians in mind (ie, how physicians can be supportive of families), I think the page provides a good summary for laypeople as well.

In addition, I think much of this article applies to caregivers who are NOT dealing with dementia.  Much of the information and advice is generic.

Here’s a link to the full article:

patient.info/doctor/supporting-the-family-of-people-with-dementia

Supporting the Family of People with Dementia
Patient, a UK organization
Last reviewed May 2014

Note that in the UK “caregivers” are referred to as “carers.”  (It’s a superior term in my mind.)

Robin

Expert Physical Therapist – Fall Prevention, etc. (Highlights of 48-min Video)

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This email is of general interest to those in our Brain Support Network.

Though this talk by a physical therapist was delivered at a CurePSP family conference in Canada (mostly PSP and CBD families in the audience), all of the disorders in our BSN group will find value in this talk.

The speaker is Joellyn Fox, DPT, a movement disorder specialist physical therapist at the University of Pennsylvania.  Her focus is offering practical tips to preventing falls and keeping moving to “improve everyday life.”

You can find the December 2015 talk by Joellyn Fox, DPT, on YouTube here:  (48 minutes)

youtube.com/watch?v=0kz8ZqJHDVM&t=508s

BSN volunteer extraordinaire Denise Dagan recently watched the video and wrote down a few highlights, which are below.  Denise encourages everyone to watch the video, however!

Robin

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www.youtube.com/watch?v=0kz8ZqJHDVM&t=508s
Methods to Improve Everyday Life
By Joellyn Fox, DPT, University of Pennsylvania
CurePSP Family Conference, Canada
December 4, 2015
48 minutes

Highlights by Brain Support Network volunteer Denise Dagan

Ms. Fox prefers to begin working with people the moment they realize there has been a change in their movement.  She calls this ‘prehabilitation.’  Clever, but her point is that until there’s a problem we don’t think about how we move.  Once there is a problem, she believes it is best to start motor learning and conscious movement training right away to prevent loss of balance and falls.

With Parkinson’s disease and parkinsonisms there develops a motor-sensory disconnect.  To compensate for that, one needs to:
– Think before moving
– Move with larger movements
– Finish one part of a task before moving on to the next by breaking tasks into parts.

For example; sitting requires approaching a chair, turning, and lowering oneself onto the seat.  When each part is done with thought, the risk of falling, sitting on the arm, or dropping onto the seat is minimized.

People with Parkinson’s often feel as if their ability to move has been lost, particularly when they suffer from freezing.  In actuality, it is a problem of activating the motion due to motor-sensory disconnect.  Compensating for this is primarily done through the use of cues to activate movement and improve gait quality.

Cueing the activation of movement can be internal (mental reminders, imagination) or external (verbal, visual or audible reminders, signs around the house, etc.).  Examples include:

– tape on the floor: to line up in front of a chair or bed before sitting, to step over going through doorways, etc.

– laser lines: light is emitted from the bottom of a cane (e.g. UStep laser cane) to break freezing and increase stride

– metronomes: help overcome freezing and maintain a regular pace or prevent slowing of stride.

Free apps are available for smartphones, even blue tooth so others can’t hear them.

– imagination: pretending to step over or on something that isn’t there (like step on a bug or over a threshold).

– tactile stimulation: tapping on the foot that’s frozen can often get it moving, or tapping on the side that needs to take the next step.

– RAS (Rhythmic Auditory Stimulation): People tend to step in time with music, whether they have Parkinson’s disease, or not.

Ms. Fox’s FOG (Freezing of Gait) Strategies start with the 4 S’s:
– Stop
– Stand tall
– Shift weight
– Step big

The key is to unweight one foot and make the next step a big one.  The cue in a physical therapy appointment is her saying, “Stop,” but remembering to say it to yourself is an internal cue, which doesn’t work for most people.  A solution at home can be STOP signs around the house where freezing often occurs (an external cue).

The rest of her FOG Strategies include:

For areas in the home (doorways, around furniture, etc.)
– Destination Estimation: estimate the number of steps to a destination and try to keep to just that many.  Works well for elevators because there is some anxiety over beating the door close.  Estimate 4 steps, take them big, and you’re in!
– Look through a doorway to the wall ahead.
– Stop, and step big over the threshold

For crowds (elevators, escalators, church, concerts, trains & buses)
– Allow others to go ahead of you to blaze a trail, and follow in their wake
– Move to the side of the crowd or against a wall and follow around the edge of the group

Turns require learning new techniques because you’re probably used to leading with your shoulders, but that causes legs to cross and may result in falling.  Instead, Ms. Fox offers specific techniques for maintaining balance while turning in both open areas and tight spaces.

Ms. Fox also spoke about retropulsion, backward balance loss with reduced step size and increased cadence, and festination, forward gait with increased step cadence, a.k.a. “runaway train.’  She listed several specific triggers and preventions for both.

Ms. Fox made the point that moving doesn’t have to be boring or tedious, even during your physical therapy appointment.  You want a therapist with that same attitude.  Her last slide has several research based movement options shown to benefit people with Parkinson’s disease.  Pick some and keep moving!

Lastly, Ms. Fox offers some specific tips for caregivers to to help steady someone with Parkinson’s disease while walking together, as well as minimize quarrels about nagging over posture or gait.

To find a physical therapist close to you, start with these resources:

– Look for therapists with experience working w/people who have Parkinson’s disease & parkinsonisms

– National Parkinson Foundation : Centers of Excellence
parkinson.org/Improving-Care/NPF-Network/NPF-s-Center-of-Excellence-Network-%281%29

– LSVT BIG Certification (Lee Silverman Voice Treatment, limb movement training)
Isvtglobal.com/clinicians

– Parkinson’s Wellness and Recovery
pwr4life.org