Category Archives: Caregiving – General

Sweet story about the value of online support groups

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Sweet story about the value of online support groups

This is a sweet story about the value of online support groups.  In my ten-plus years being on online support groups, I am grateful to many (not all!) who participate and share of themselves — both those with a diagnosis and their caregivers and family members.

In this story on STAT (statnews.com), Stephen Wheeler visited an online patient community called Inspire (inspire.com), after he was diagnosed with non-small cell lung cancer.  After his death, his wife wrote to the administrators of Inspire.  “Weeks later, they sent her the transcripts of the discussions he’d participated in. There were 1,000 pages.  Some of Wheeler’s posts were whimsical. … There were many throwaway pages, but some passages were as deeply felt as you might imagine from a man facing death, including one in which he lamented the tendency to say that patients ‘beat’ cancer or ‘lost to’ it.”  His family realized what a difference he had made in people’s lives.

Here’s a link to the STAT article:

https://www.statnews.com/2016/11/30/coming-to-life-after-death/

ENDNOTES
After he was gone, a shy man comes to life in words left behind
By Bob Tedeschi
November 30, 2016
STAT

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

———————–

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

“Shining A Light”: Actress Kimberly Williams-Paisley on Caregiving

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“Shining A Light”: Actress Kimberly Williams-Paisley on Caregiving

In the October/November 2016 issue of Neurology Now magazine, actress Kimberly Williams-Paisley shares her experience about caring for her mother with primary progressive aphasia, a type of frontotemporal degeneration.  (PSP and CBD are also types of frontotemporal degeneration.)  The actress wants other families to avoid the mistakes she made.  Though Brain Support Network does not include PPA among our four disorders, the article has some good advice for our group members as well.

Ms. Williams-Paisley has written a book titled  Where the Light Gets In, described as “unflinching” by the Neurology Now article.  If someone reads it, let me know if you’d recommend it and if it’s relevant to one of the disorders in our group.

Here are a few caregiver-related excerpts from the magazine article:

* The “family shouldered the burden for far too long.”

* The family allowed the mother to drive for far too long, even after several accidents.

* “[Driven by guilt, indecision, and uncertainty, the family…stumbled on. It was a situation Kim thought could have been avoided if the family had had a conversation with Linda before the disease robbed her of insight and judgment.”

* Family members should “not try to do all the caregiving on their own. It’s important for caregivers to reach out and ask for help,” Kim says.

* “One of the most profound lessons…learned…was this: Put your wishes in writing before you get sick.  The fact that her mother, Linda, did not put her wishes for long-term care in writing caused Kim and her family a great deal of guilt and uncertainty.”

Here are some relevant suggestions from the physician quoted in the article:

* Become educated about the disease.  Find resources.

* Teach patients how to communicate anger.

* Help patients cope with aphasia through music therapy or other expressive arts.

* Help patients focus on abilities the patient still has to make him or her feel better.

* Encourage patients and their families to participate in clinical trials.

* Speak out about the disease.

* Know that we are all imperfect.

Here’s a link to the full article:

journals.lww.com/neurologynow/Fulltext/2016/12050/Shining_A_Light__Actress_Kimberly_Williams_Paisley.18.aspx

Neurology Now
October/November 2016
Volume 12 – Issue 5, p 24–27
 
Shining A Light
Actress Kimberly Williams-Paisley wants to help other families dealing with primary progressive aphasia avoid the mistakes she and her family made in caring for her mother.
by Mary Bolster and Gina Roberts-Grey

Be sure not to miss the “web extra”!

Robin

“Actually, let’s not be in the moment” (NYT)

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“Actually, let’s not be in the moment” (NYT)

Someone in the local support group sent this to me, sort of tongue in cheek.  She said that I’m always promoting “mindfulness-based stress reduction” at support group meetings and asked that I give equal time to this article about NOT being in the moment.  So here’s a link to last Sunday’s New York Times article for equal time!

www.nytimes.com/2016/11/26/opinion/sunday/actually-lets-not-be-in-the-moment.html

SundayReview | Opinion
The New York Times
Actually, Let’s Not Be in the Moment
By Ruth Whippman
November 26, 2016

Robin

Hospital Discharge Planning (Notes from caregiver conference)

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Hospital Discharge Planning (Notes from caregiver conference)

Brain Support Network volunteer Denise Dagan attended the Avenidas Caregiver Conference in late October 2016.  She took some notes from the various talks.  Here are Denise’s notes from the talk on “Patient Rights and the Discharge Planning Process” presented by Paula Wolfson, the Avenidas senior center social worker.

The main resource mentioned by Ms. Wolfson was the Medicare website and its explanation of the discharge appeal process:

www.medicare.gov/claims-and-appeals/right-to-fast-appeal/hospital/fast-appeals-in-hospitals.html

The remainder of Denise’s notes are copied below.

Robin

Notes from Brain Support Network volunteer Denise Dagan:

The last information session I attended at the Avenidas Caregiver Conference was titled, “Patient Rights and the Discharge Planning Process.”  It was presented by Paula Wolfson, a social worker with Avenidas.  We learned to “…effectively mediate and negotiate [hospital] discharge plans.”  Ms. Wolfson gave us so much related information I could not possibly summarize it all here.

Through several hospitalizations for my parents, myself, and my daughter, I’ve never heard of, nor been invited to, a discharge planning ‘meeting’.  Whether an actual meeting happens, all of these people are involved in the discharge process.  Any one of them can question the readiness of a patient for discharge and slow, or stop the process until all requirements are in place for a safe discharge that meets all the patient’s recovery needs.

– The physician, who recommends and writes the discharge orders

– The physical, occupational and speech therapist team, to determine if the patient is at risk for falling or not able to perform the activities of daily living independently, and make recommendations for in-home or skilled care upon discharge

– The social worker, who reviews the patient’s social supports, housing, medical follow up resources, transportation, financial and legal concerns

– The nurse case manager, to assists with skilled care discharge placements and insurance coverage

– The patient and his/her designated caregiver, who should evaluate the discharge plan to determine if it accommodates all personal care, safety, medical follow up, transportation, and financial concerns for the patients recovery.

If you feel discharge is premature or not safe you have the right to appeal.  Consult with the nurse case manager or social worker.  They can arrange for you to have a conversation with the physician to extend the discharge until your concerns are addressed. This often works well because the Medicare appeals process is a major hassle for the hospital.  If the doctor is dismissive of your concerns, let him/her know you are prepared to file an appeal with Medicare.  Upon hearing that news, he or she should postpone the discharge for a day, or two.  Start working with the discharge team immediately to resolve your concerns.

If you feel you must appeal, during the admissions process and a few days prior to discharge you receive information about how to file a Medicare appeal.  If you can’t find it, request the “Important Message from Medicare” from the hospital admissions or business office.  This is an instructional guideline on appealing your hospital discharge and will explain the appeal process.  It gives you a phone number to call Medicare and advocate for the appeal which will trigger an independent review of the discharge decision and delay in the discharge date.  Medicare will pay until the appeal is resolved.  Complete information is available at:

www.medicare.gov/claims-and-appeals/right-to-fast-appeal/hospital/fast-appeals-in-hospitals.html

This website also has information about filing a complaint (grievance) about the quality of care or other services you get from a Medicare provider, and how to file an appeal if you have issue with a plan’s refusal to cover a service, supply, or prescription.