“The thing that caregivers fear most”

Catherine, a member of our local support group whose husband had corticobasal degeneration, forwarded this recent Huffington Post article as it really hit home for her.  The article discusses the difficulties  caregivers experience as their loved one becomes increasingly ill, as  time becomes short, and doubts appear about the caregiver’s ability to manage everything.

Steven Russell, Brain Support Network’s treasurer, read over the article and shared his comments:

As my father’s primary caregiver for the last six years of his life, I remember how many times the ideas expressed by the author came to the surface as anger, fear, resentment and frustration.  Here are the key ideas from this article that resonated with me.

#1 Actually, it is when you realize the possibly long-term nature of the care that you begin to question your abilities.

“But as any caregiver who is being honest will tell you, the scariest part is not when defeat starts to creep in around the edges. It’s when it doesn’t and you start asking yourself ‘how much longer can I do this?’ It’s the status quo and the possibility that this is my new normal that destroys me.”

#2 You think you are at a “plateau” and then the bottom drops out.

“Once you step on the medical treadmill, there is no way to slow the damn thing down.”

#3 All caregivers have these feelings.

“Ask any caregiver and they’ll tell you we are the invisible patients, the ones whose needs are neglected, whose pain goes untreated, whose job it is to be cheerful and keep the family train running on time while we die a little more inside each day.”

#4 And if only those we care for could “try harder to get well, try harder to appreciate us, try harder to understand that our best may not be enough but it remains our best.”

Relying on friends, family and community support (like our caregiver support group) can help you focus on your needs as well — something that is vital for both you and the person you are caring for. You needn’t experience these feelings alone.

Here’s a link to the article:


This is the thing that caregivers fear most
The worst part is not when defeat starts to creep in around the edges.
Huffington Post
by Ann Brenoff
August 25, 2016


“Tough Love: Succeeding as a spousal caregiver”

Dorothy, whose husband had Lewy Body Dementia and is part of our local support group, forwarded this article on caregiving for a spouse from the current issue of Neurology Now.

Steven Russell, Brain Support Network’s treasurer, read over the article and provides a summary of the key points.

Although the title includes “spousal caregiver,” I think much of it applies to those who aren’t married as well as to those who are providing care and support as an adult child, friend, etc.  Although not focused on caregiving for someone with an atypical parkinsonism disorder, the article makes excellent points for anyone caring for someone with a chronic disease.

Here are some key points:

#1 Men and women have very different reactions as patients and caregivers and this can lead to big changes in relationships:

“Men are more likely to leave the marriage if they become a caregiver because they feel there is little they can get back from the relationship…  [Women] were six times more likely to be separated or divorced after a diagnosis than men in the same situation.”

#2 Get help early and continuously add to your care team:

“Many people will say that they will do as much as they can until they can’t anymore, and that’s not good for anyone.”

#3 Roles will change, whatever the relationship at time of diagnosis.  Figure out what needs to be done and have resources available:

“Both spouses need to come to terms with the change, accept it, and get help if the change is too much to handle.”

The author provides these tips for the caregiver navigating challenges:
* Prepare for change
* Reassess roles
* Resist taking on everything
* Avoid isolation
* Cultivate healthy communication
* Be open to intimacy
* Guard against depression
* Ask for help
* Carve out “me” time

Check out the article for details on each of these tips:


Tough Love: Succeeding as a spousal caregiver means knowing when to ask for help, finding time for yourself, and making peace with your partner
Neurology Now
by Paul Wynn
August/September 2016, Vol. 12, Issue 4

Neurology Now magazine is available by free subscription.  Click on the “Subscribe Now” link at the bottom of the article on caregiving.  You have to verify each year that you still want the magazine.


Parkinson’s Caregivers Summit, 9/19, 9am-3:30pm PT, via webcast

Join in this Parkinson’s caregivers summit on Monday, September 19th, 9am to 3:30pm PT via webcast.  Only the CareMAP part of the agenda is obviously Parkinson’s-specific, so I believe most of the summit will be of interest to those in the Brain Support Network community.

The World Parkinson’s Congress will start in Portland on September 20th.  The day before the WPC, the National Parkinson Foundation (NPF) is hosting a PD caregivers summit in Portland, from 9am to 3:30pm.  NPF aims to have caregivers “share experiences and everyday strategies for coping with the complex problems that arise as a result of PD.”

Anyone can participate in the summit via webcast.  During the webcast, there will be two one-hour gaps during which break-out sessions are held.


Register here for the webcast:



9:00 – 9:20 am
Susan Imke, FNP, GNP-C, Kane Hall Barry Neurology (Bedford, TX)

9:20 – 10:00 am
Maintaining Dignity and Identity
Susan Hedlund, MSW, LCSW, Oregon Health & Science University (Portland, OR)

10:00 – 10:40 am
Caregiving: The Emotional Rollercoaster
Jan and Seale, poet caregiver advocate (McAllen, TX)

10:40 – 10:50 am
Coping Strategy: Yoga & Stretching
Kaitlyn Roland, PhD, University of Victoria (British Columbia, Canada)

10:50 – 11:05 am

11:05 – 12:00 pm
Breakout 1 (to be announced soon)

12:00 – 12:50 pm
Lunch and Networking

12:50 – 1:05 pm
Tools for Family Caregivers: CareMAP and Caring & Coping
Vaughn Edelson, National Parkinson Foundation (Miami, FL)

1:05 – 1:15 pm

1:15 – 2:10 pm
Breakout 2 (to be announced soon)

2:10 – 2:20 pm

2:20 – 2:30 pm
Coping Strategy: Mindfulness
Paula Wiener, MSW, LCSW, National Parkinson Foundation (Chicago, IL)

2:30 – 3:30 pm
Embracing the Challenge: A Panel Discussion
Moderator: Tony Borcich, LCSW, Parkinson’s Resources of Oregon (Portland, OR)
Julie Beck, spouse of person with young-onset Parkinson’s (Chicago, IL)
Rick Bentley, adult child of person with Parkinson’s (San Francisco, CA)
Pat Smith, spouse of person with Parkinson’s (Canandaigua, NY)

“The Life-Changing Magic of Choosing the Right Hospital”

Steven Russell, Brain Support Network’s treasurer, recently came across this New York Times article and summarized the key points and resources mentioned.  Here’s his email…

The New York Times recently published an article on the importance of choosing the right hospital for various surgeries and other medical procedures. Obviously you don’t always have time to prepare when an emergency happens, but by researching outcomes (safety, efficacy, readmission rates) and consulting with your physician prior to hospitalization you can achieve better results just by driving a few miles to a hospital with higher service/safety scores.

Here are two key points:

#1.  You don’t have to travel far to receive improved care and outcomes:

“To receive care at a hospital with a one-percentage-point gain in survival rate or a one-percentage-point decrease in readmission rate, a heart attack patient traveled 1.8 or 1.1 miles farther, respectively.”

#2.  Beyond doing in-depth research with the links below, many patients should discuss hospital and clinical care services with their physician:

“Doctors are more attuned to clinical quality than patients can be, because patients lack the expertise and don’t engage with the health care system frequently enough to evaluate hospital quality.”

Three excellent resources mentioned in the article are:

Medicare/Medicaid compare hospital services tools

Hospital Inspections

California hospital information
(Select Hospitals from the drop-down menu. There are other options you can research here: assisted living, adult day care, etc.)

Another resource I like (not mentioned in the article) is:

“A Guide to Choosing a Hospital”
From the Centers for Medicare and Medicaid Services

Here’s a link to the complete article:


The Life-Changing Magic of Choosing the Right Hospital
The New York Times
Austin Frakt
August 22, 2016

Happy reading!

Steven Russell

“10 Actions that Helped our Family after Mom’s Alzheimer’s Diagnosis”

Occasionally I check out online Alzheimer’s support groups.  Yesterday, I came across this helpful post titled “10 Actions that Helped our Family after Mom’s Alzheimer’s Diagnosis.”  Though this was written by a daughter whose mother had Alzheimer’s, I think this advice applies to anyone coping with a neurological diagnosis.

The ten actions described are:
1.   Gather the troops, build a support network
2.   Divvy up the tasks
3.   Educate yourself about Alzheimer’s disease and local resources
4.   Review legal documents
5.   Find the right doctor(s) and care team
6.   Look at alternative situations, just in case
7.   Expect cognitive decline and prepare for change
8.   Be patient
9.   Enjoy and celebrate the good days
10. Take care of yourself and stay connected with others

For details on the ten actions, see the post:



“Mission creep doesn’t benefit patients at the end of life” (Washington Post)

This compelling story in today’s Washington Post (washingtonpost.com) is about a physician having a conversation with his physician father, age 88. Here’s an excerpt:

“We were discussing treatment options promoted by his primary-care physician and other doctors for an aortic aneurysm… He turned to me and asked, ‘Why would I want to fix something that is going to carry me away the way I want to go?’ … With his unexpected question, he directly challenged the assumption that a doctor’s advice is always in a patient’s best interest, particularly regarding a medical problem late in life. … Furthermore, Dad was making an important distinction, between care at the end of life (in this case, palliative care for pain) and treatment (aneurysm repair). He was also suggesting a natural exit strategy.”

Here’s a link to the full article:


Health & Science
Mission creep doesn’t benefit patients at the end of life
By Samuel Harrington
The Washington Post
August 22, 2016



“Tips for talking with your doctor”

The National Institute on Aging has put together a set of tips for talking with your doctor.

The NIA points out that:

“You only have 18 seconds — that’s the average time a doctor waits before interrupting a patient.  Be prepared for your visit:
1) Make a list of concerns in order of their importance to you.
2) Write down all your medications, vitamins, and supplements.
3) Note all health and life changes since your last visit.”

The NIA has a “Guide for Older People: Talking with Your Doctor,” available here:


Of that publication, I thought the webpage on “Getting Ready for Your Appointment” was the most helpful.  I’ve copied it below.  (This publication is available in Spanish.)  It includes a list of tips on getting started with a new doctor.

And there are some useful worksheets at the end of the publication worth printing out and using.  The worksheets list concerns, diet changes, medication changes, lifestyle changes, thoughts/feelings, other changes, and medications (name of drugs, what it’s for, date started, doctor, color/shape, dose and instructions).  See:


You could download the PDF and print the worksheets out from there. It might be useful to print out the worksheets and place them on your refrigerator door.  Whenever something comes up that you think you’d like to tell your doctor about, you can add it to the worksheet.



Excerpt from:
Talking With Your Doctor: A Guide for Older People
National Institute on Aging
Publication Date: April 2010

How Should I Prepare? Getting Ready for an Appointment
Last Updated: July 29, 2016

– Be prepared: make a list of concerns.
– Take information with you.
– Consider bringing a family member or friend.
– Make sure you can see and hear as well as possible.
– Plan to update the doctor on what has happened since your last visit.

A basic plan can help you make the most of your appointment whether you are starting with a new doctor or continuing with the doctor you’ve seen for years. The following tips will make it easier for you and your doctor to cover everything you need to talk about.

List and Prioritize Your Concerns
Make a list of what you want to discuss. For example, do you have a new symptom you want to ask the doctor about? Do you want to get a flu shot? Are you concerned about how a treatment is affecting your daily life? If you have more than a few items to discuss, put them in order and ask about the most important ones first. Don’t put off the things that are really on your mind until the end of your appointment—bring them up right away! Worksheet 1 at the end of this booklet can help.

Take Information With You
Some doctors suggest you put all your prescription drugs, over-the-counter medicines, vitamins, and herbal remedies or supplements in a bag and bring them with you. Others recommend you bring a list of everything you take and the dose. You should also take your insurance cards, names and phone numbers of other doctors you see, and your medical records if the doctor doesn’t already have them.

Consider Bringing a Family Member or Friend
Sometimes it is helpful to bring a family member or close friend with you. Let your family member or friend know in advance what you want from your visit. Your companion can remind you what you planned to discuss with the doctor if you forget. She or he can take notes for you and can help you remember what the doctor said.

Be Sure You Can See and Hear as Well as Possible
Many older people use glasses or need aids for hearing. Remember to take your eyeglasses to the doctor’s visit. If you have a hearing aid, make sure that it is working well and wear it. Let the doctor and staff know if you have a hard time seeing or hearing. For example, you may want to say: “My hearing makes it hard to understand everything you’re saying. It helps a lot when you speak slowly.”

Plan to Update the Doctor
Let your doctor know what has happened in your life since your last visit. If you have been treated in the emergency room or by a specialist, tell the doctor right away. Mention any changes you have noticed in your appetite, weight, sleep, or energy level. Also tell the doctor about any recent changes in any medications you take or the effects they have had on you. Worksheet 2 at the end of this booklet can help.

Request an Interpreter If You Know You’ll Need One
If the doctor you selected or were referred to doesn’t speak your language, ask your doctor’s office to provide an interpreter. Even though some English-speaking doctors know basic medical terms in Spanish or other languages, you may feel more comfortable speaking in your own language, especially when it comes to sensitive subjects, such as sexuality or depression. Call the doctor’s office ahead of time as they may need to plan for an interpreter to be available.

Always let the doctor, your interpreter, or the staff know if you do not understand your diagnosis or the instructions the doctor gives you. Don’t let language barriers stop you from asking questions or voicing your concerns.


Tips: Getting Started With a New Doctor

Your first meeting is a good time to talk with the doctor and the office staff about some communication basics.

First name or last name—When you see the doctor and office staff, introduce yourself and let them know by what name you like to be called. For example: “Hello, my name is Mrs. Jones,” or “Good morning, my name is Bob Smith. Please call me Bob.”

Ask how the office runs—Learn what days are busiest and what times are best to call. Ask what to do if there is an emergency, or if you need a doctor when the office is closed.

Share your medical history—Tell the doctor about your illnesses, operations, medical conditions, and other doctors you see. You may want to ask the doctor to send you a copy of the medical history form before your visit so you can fill it out at home where you have the time and information you need to complete it. If you have problems understanding how to fill out any of the forms, ask for help. Some community organizations provide this kind of help.

Share former doctors’ names—Give the new doctor all of your former doctors’ names and addresses, especially if they are in a different city. This is to help your new doctor get copies of your medical records. Your doctor will ask you to sign a medical release form giving him or her permission to request your records.

6% of Mayo MSA cases also had CTE

There was an interesting paper on MSA brain research published this week that a lot of BSN families played a role in.

Researchers examined 139 MSA brains donated to Mayo Jacksonville. They were looking for evidence of CTE, chronic traumatic encephalopathy. That’s the neurodegenerative disorder developed by football players, soccer players, and other participants in contact sports. They found 8 cases (6%) had CTE pathology. All of the 8 cases were men, and 4 had a documented history of playing contact sports. The median age at death in MSA with CTE was younger than in MSA without CTE. The abstract is below.

About 25% of these 139 MSA brains were donated to the Mayo Clinic as a result of the generosity of MSA families who were assisted by Brain Support Network in the brain donation process!




J Neuropathol Exp Neurol. 2016 Aug 18. [Epub ahead of print]
Chronic Traumatic Encephalopathy Pathology in Multiple System Atrophy.
Koga S, Dickson DW, Bieniek KF.

Chronic traumatic encephalopathy (CTE) is a progressive neurodegenerative disorder associated with repetitive traumatic brain injury. Multiple system atrophy (MSA) is a Parkinsonian disorder that can result in repetitive falls with associated head trauma. We hypothesized that patients with neurodegenerative disorders like MSA could develop CTE pathology. Therefore, we assessed CTE pathology in 139 MSA cases in our brain bank. Sections from convexity cerebral cortices were screened by immunohistochemistry with anti-phospho-tau antibody. For cases with suggestive CTE pathology, further sections of basal forebrain and hippocampus were immunostained. Consensus criteria were used to make the diagnosis of CTE and aging-related tau astrogliopathy (ARTAG) was differentiated from CTE pathology. Pertinent clinical information was derived from the available records and online searches. Of the 139 MSA cases, 8 (6%) had CTE pathology and 10 (8%) had ARTAG pathology. All 8 cases with CTE were male and 4 of them had a documented history of contact sports. The median age at death in MSA with CTE was younger than in MSA without CTE or MSA with ARTAG (60, 67, and 74 years, respectively; p = 0.002). Even without a known history of contact sports or head trauma, a small subset of cases with MSA had CTE pathology.

PubMed ID#: 27543120

StemGenex in SoCal and stem cell marketing hype

This interesting article from today’s Los Angeles Times is about the La Jolla-based company StemGenex. I do know of some people in the MSA community and PD community who have contacted StemGenex about their stem cell “treatment.”

StemGenex’s director of media and community relations told the article’s author that the company’s “principal purpose is helping people with unmet clinical needs achieve optimum health and better quality of life,” and that it has “anecdotal feedback … from our patients that their symptoms have dramatically improved and their quality of life has substantially increased.”

The author, Michael Hiltzik, points out:

“But on its website, the group disavows any claim that ‘treatment using autologous stem cells [that is, cells drawn from the patient’s own body] are a cure for any condition, disease, or injury. ‘ It acknowledges that ‘stem cell therapy is not FDA approved and is not a cure for any medical condition,’ and that U.S. health insurance companies won’t cover the procedure, which costs $14,900.”

Mr. Holtzik has lots of negative things to say about StemGenex and its website.  He followed up with the company about its claim of accreditation as an outpatient surgical facility.  After his questions, the company removed that accreditation from its website.

The author reports that two researchers — Leigh Turner, University of Minnesota bioethicist, and Paul Knoepfler, UC Davis stem cell scientist — found 570 clinics involved in “stem cell tourism,” with “hot spots” in Southern California, Phoenix, New York, San Antonio, and Austin.  Researchers are very alarmed about what’s going on in clinics around the US.

Check out the full article here:


These new stem cell treatments are expensive — and unproven
LA Times
Michael Hiltzik, columnist
August 19, 2016


Work-arounds at home for safety, ease-of-use, etc. (NY Times, 8-15-16)

Here are the useful work-arounds (“hacks,” adaptive equipment, or environmental adaptation) I picked up from an article in this Monday’s New York Times and associated reader comments:

* “[Attaching] small tactile bumps to the ‘Answer’ button and the ‘2’ and ‘8’ keys on her phone, making it easier for [someone with vision problems] to respond to and make calls.”

* “Sugru, a moldable putty that turns into rubber, can be used to round out sharp corners on furniture in order to prevent injuries.”

* One of the commenters suggested checking out this webpage on the Sugru website; it’s a how-to guide for using Sugru for “assistive technology”:


* “Rubber bands can be affixed to cups to make them easier to grip.”

* “A clothespin can be clipped to the rim of a cup with a drinking straw taped to it to hold the straw in place.”

* “[Hanging] an old stocking in a shower with a bar of soap tucked into the foot. As the soap gradually shrinks, it remains inside the stocking instead of a becoming a slipping hazard on the floor. The slightly abrasive nylon stocking material has the added benefit of exfoliating the skin.”  (One of the commenters asked:  “Who still has stockings?”)

* Another commenter suggested a “small mesh laundry bag (for lingerie) from the dollar store works well too, and usually has a drawstring.”

* One of the commenters suggested keeping shelf liner around your house, in your purse, and in your travel bag.  It’s handy for opening things and for keeping things from sliding.

Here’s a link to the full article, if you’d like to read more:


Hacks Can Ease the Trials of Aging
New York Times
By Marie Tae McDermott
August 15, 2016 6:00 am