Category Archives: Living with a Neurological Condition

3 Important Questions and “Practical Tips on Balancing Loss and Connection” (Handout)

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Neuropsychologist Kyrstle Barrera, PhD spoke to the Palo Alto Parkinson’s support group meeting last Wednesday.  She talked about “Balancing Loss and Connection” when coping with a neurodegenerative disease.

She encouraged us to let the answers to the following questions guide how you make your decisions and spend your time:

1.  When do I feel the closest to my loved one?
2.  When is this disease furthest from my mind?
3.  When do I feel the most nourished?

Besides these three questions, check out Dr. Barrera’s handout (below) for the practical tips she offers.

Robin

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“Balancing Loss and Connection”
Kyrstle Barrera, PhD
Handout from 12-10-14 presentation to Palo Alto PD Support Group

Let the answers to the following questions guide how you make your decisions and spend your time:
1.  When do I feel the closest to my loved one?
2.  When is this disease furthest from my mind?
3.  When do I feel the most nourished?

Practical Tips
* Take care of yourself.
* Reminisce with your loved one.
* Talk about the things that are difficult.

* Schedule
– Schedule pleasant activities just like you do appointments and medications
– Schedule time for activities that allow you to be ONLY a spouse/child
– Schedule activities that are minimally impacted by symptoms (movies, music, people watching)

* Continue to socialize/build support network
– Support groups
– In person meetings with friends/family

* Use technology to help reduce your mental load!
– Set alarms
– Create check lists
– Take notes and pictures

* Use technology to help stay connected and keep everyone involved
– Video chat
– Speaker phone

* Prepare in advance
– Conversation topics/questions to ask
– Discuss answers to potential questions together beforehand
– Provide education to those around you, if needed (can be written material, too)
– Don’t avoid the elephant in the room
– Explain symptoms
– Let others know what to expect
– Give others tips on way to maximize communication

* Schedule time each week to emotionally “check in” with yourself and one another

* Take time to look back and gain some perspective on a regular basis (what did you enjoy the last week/month, how can you do more of that?)

* Think about the things “you wish you would have…” and do them.

* Journal

* Consider couples/family therapy

* Utilize your support network
– Accept help when it’s offered
– Delegate responsibilities when you can

“Balancing Loss and Connection” – a few notes, 12-10-14 neuropsychologist talk

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A neuropsychologist spoke to the Palo Alto Parkinson’s support group meeting last Wednesday.  This neuropsychologist was recommended by Charmaine, one of our local CBD support group members.  Her family gained a great deal by working with this neuropsychologist over an extended period of time.

The neuropsychologist is Kyrstle Barrera, PhD; she’s a clinical neuropsychology postdoctoral fellow at the VA Palo Alto.  Her presentation last Wednesday was terrific.  She talked about “Balancing Loss and Connection” when coping with a neurodegenerative disease.  She will be establishing a private practice soon in the SF Bay Area (Palo Alto or Menlo Park, perhaps), and I hope more families (regardless of the neurodegenerative disease) can benefit from working with her.

Here are some notes I took last Wednesday.  Kyrstle did have a one-page handout, which I will type up and post separately.

Robin

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“Balancing Loss and Connection”
Kyrstle Barrera, PhD
12-10-14 presentation to Palo Alto PD Support Group

Kyrstle advises those dealing with neurodegenerative disorders to consider three questions:
1- when do I feel the closest to my loved one?
2- when is this disease furthest from my mind?
3- when do I feel the most nourished?

She says that the answers to these questions should guide your decisions about where to spend your time.

One key goal is to create and maintain connections with others.  Connection is one of the few things that can fill up your fuel tank.  We should all spend more time with the people we feel connected to.

Kyrstle gave some specific suggestions:

* on your daily agenda, schedule in “fun”

* set alarms (on your cell phone, for example) to remind you to “have fun” or “maintain connections”

* take 5-10 minutes each night just before you go to bed to consider what you enjoyed doing that day and how you can do more of that

* say to your family member or friend “let’s give ourselves 10 minutes to just gripe and not offer any tips or suggestions”

* reminiscing with your family member or friend can be wonderful

She encourages everyone to consider therapy.  She notes that “it doesn’t hurt.”  How do you know if you need therapy?  People need therapy for emotional support.  Or they need therapy if they don’t believe they are handling situations in the right way.  Or they need therapy if others are not understanding them.

Finding out “not wanting to live hooked up to machines” means; mediation resources; etc.

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Susan Weisberg, a wonderful hospice social worker who had a family member with Lewy Body Dementia, forwarded me this recent blog post in the New York Times.

The blog post is about a medical ethics professor who is part of a family that did not adhere to her father’s wishes for “not wanting to live connected to machines.”

The author makes three points:

  • “What I hadn’t considered before my father’s heart attack was the precise meaning of ‘not wanting to live hooked up to machines.’ When people say that, it’s unclear whether they mean that they don’t want to live for the rest of their days in this condition, or that they don’t want to live for even a few weeks like that. The question of “how long?” is one we would all do well to consider.”
  • “The biggest lesson I have learned is that every family should not only discuss end-of-life wishes but should act on them by filling out an advance directive. If my father had completed one, his end might have played out differently. By the time we told the medical staff that he didn’t want to be hooked up to machines, he already was, and we acquiesced in letting things take their course, with the hope that he might improve.”
  • “What I wished we had had…was a conversation with his physicians about end-of-life possibilities right from the beginning.. … Honoring my dad’s wishes meant taking him off the ventilator while we still had that option.  The timing was key, but no one explained this or advised us how to determine when the time would be right. We now shudder that, because of hope, we were slow to see this choice and might so easily have missed it. … [Confronting] the end from the beginning might alleviate some of the inevitable feelings of guilt that arise when people make the decision to end life support.”

You can find the article here:

well.blogs.nytimes.com/2014/12/01/hoping-for-a-good-death/

Family
Hoping for a Good Death
New York Times
By Elizabeth Reis
December 1, 2014 7:05 pm

Note that the POLST form in California (capolst.org) gives people an opportunity to say that either they want no treatment, they want full treatment, or they want treatment for a limited amount of time.  If “limited amount of time” is selected, the person may state how long that is, whether it be a few days or a few weeks.

Anyone who is frail or who has a serious medical condition should complete a POLST form.  All of us should complete an advance care directive.

 

Robin

 

Are PET scans helpful in diagnosing dementia?

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This is a good post in The Geriatrician, a blog (thegeriatrician.blogspot.com).  The post provides an overview of how a geriatrician thinks about the value of PET scans in diagnosing dementia. Apparently there is very little value so this geriatrician has sent only one to get a PET scan, despite the fact that half of his patients have dementia.

When the author says “PET scans,” he is referring to “FDG PET scans.”  I rather doubt his bottom-line would be any different if he were talking about amyloid PET scans.

The crux of the argument has to do with sensitivity , specificity, positive predictive value, and negative predictive value – statistical terms.  He refers people to Google and Wikipedia to look up definitions of these terms.  He also points to a “handy dandy calculator,” found at vassarstats.net/clin2.html.

The geriatrician says:

“[According] to the Alzheimer’s Association, PET scans to make the diagnosis of dementia are 95% sensitive and 75% specific.  Sensitivity means that if someone has dementia, the test will pick it up. Specificity means that the test doesn’t pick up other things like depression.  … While the sensitivity seems great, the specificity is the achilles heel.”

In the blog post, the geriatrician goes through the math.  In summary, he says:

“I would say that the test is useful as a rule out type of test for those who have an intermediate or low suspicion.  Not so much to make the diagnosis.  I wouldn’t be comfortable telling someone they have a fatal neurodegenerative disease when I have a 20% chance of being wrong.  Or even 8% chance.  The second point is that the test is only useful in the setting of a clinical suspicion.  You can see how the characteristics of the test change depending on clinical suspicion.  However when people talk about PET scans, they imply that maybe it would be useful BEFORE a person has clinical symptoms.  It’s not there yet. Maybe the new Amyloid PET scans but not the tagged glucose pet scans.  After going through the math, this is why I don’t use PET scans.  I think it’s more useful to hone my clinical skills than use a test to compensate for poor clinical skills.”

Read the full blog post here:

thegeriatrician.blogspot.com/2014/11/are-pet-scans-good-enough-to-diagnose.html

Are pet scans good enough to diagnose dementia?
The Geriatrician
Sunday, November 16, 2014

Robin

 

“How long have I got left?”

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This is a New York Times article written by Stanford neurosurgeon Dr. Paul Kalanithi about being diagnosed with advanced-stage lung cancer in 2013.

By the way, one of our local support group members went to undergrad with Paul, and had this to say:  “he is such a warm, intelligent and funny person. I’ve been blown away by his story and how he has handled his diagnosis and shared his insights with the world.  A true gift.”

What first drew me to the NYT article was the discussion about statistics and prognosis.

Many of our local support group members who are caregivers (myself included) want to know how long their loved one has left to live with a neurological disorder.  And many of our local support group members who are those with a neurological diagnosis also want to know how long they have left to live.  Not everyone asks these questions but many do.

In reply, I recite the averages based on published research with confirmed (through brain donation) cases.  But no one can know what an individual’s prognosis is.

It was interesting to read Dr. Kalanithi’s new take on the prognosis question.  After he got a lung cancer diagnosis, he asked the same question of his oncologist:

“But now that I had traversed the line from doctor to patient, I had the same yearning for the numbers all patients ask for. … She flatly refused: ‘No. Absolutely not.’ … At each appointment, a wrestling match began, and she always avoided being pinned down to any sort of number.”

“The path forward would seem obvious, if only I knew how many months or years I had left. Tell me three months, I’d just spend time with family. Tell me one year, I’d have a plan (write that book). Give me 10 years, I’d get back to treating diseases. … My oncologist would say only: ‘I can’t tell you a time. You’ve got to find what matters most to you.'”

Eventually, Dr. Kalanithi has a revised view on the statistics and prognosis question:

“What patients seek is not scientific knowledge doctors hide, but existential authenticity each must find on her own. Getting too deep into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability.”

As you can probably tell, the entire article is worth reading.  Here’s a link to it:

www.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-left.html

SundayReview | Opinion
How Long Have I Got Left?
New York Times
By Paul Kalanithi
Jan. 24, 2014

Robin