“The 2 Most Important Caregiver Tips”

In this short article in US News & World Report, the author limits her discussion to the two most important caregiver tips.

The two tips are:

#1 – Learn as much you can about your loved one’s disease or illness to know what to expect. Otherwise, you’ll be driving blind.

#2 – Care for your loved one the same way you would want to be cared for if you were living with the disease. After learning as much as you can about [your loved one’s illness], put yourself in your loved one’s shoes by asking yourself, “What fears and uncertainties would I feel in the face of this…diagnosis?”

I think this is good advice. But #1 is hard to achieve when the specialists aren’t even able to say with better than 50/50 odds what the neurological diagnosis is! So you learn all you can about one disorder only to learn a new diagnosis a year or so later.

The author notes that someone at the Lewy Body Dementia Association described LBD as a disorder that: “walks like Parkinson’s and talks like Alzheimer’s.” That sounds like a good description for some with LBD.

Here’s a link to the article:


The 2 Most Important Caregiver Tips
How to survive, thrive and even find joy in caring for a loved one with dementia.
US News & World Report | Health
By Brenda Avadian
May 1, 2015 | 9:00 a.m. EDT


“Coping with Caregiver Guilt: how humor and respite can help” (US News, 5-22-15)

Thanks to a BSN local support group member who forwarded a tweet about this article on to me.

The article on caregiver guilt is in US News & World Report.  The author encourages caregivers to “schedule periods of respite to relax and gain strength for guilt-free caregiving.”  She says that even five minutes of respite can be worthwhile.

Here’s a link to the article:


Coping With Caregiver Guilt
How humor and respite can help caregivers manage guilt.
US News & World Report | Health
By Brenda Avadian
May 22, 2015 | 11:21 a.m. EDT

Part of the article is a 3-minute youtube video of the author discussing the alternatives, in a tongue and cheek fashion, to taking a five-minute respite.  (I didn’t think it was so funny, but your mileage may vary.  The article is worth a quick-read, however.)



Methylene blue update

This post may only interest those of you following experimental drug therapies for PSP and CBD, both tauopathies (disorders of the protein tau).

In a review article from 2011, three tau-directed compounds were listed — methylene blue, tideglusib, and Davunetide.  Both the tideglusib and Davunetide trials in PSP were failures from a drug perspective.  (The great thing is that the worldwide PSP clinical treatment community and patient community showed that a worldwide PSP trial could be conducted.)

Now comes news that methylene blue stopped cognitive decline in tau-transgenic mice but only if the compound was given at the earliest stages.  This implies that if the compound were given in pre-symptomatic people with PSP or people in the early stages of CBD, that the compound might prevent them from getting worse.  Unfortunately we don’t now when someone is pre-symptomatic or in the early stages of PSP or CBD.

Some of you might remember there was an experimental drug called Rember, based on methylene blue.  The latest version of Rember is called LMT-X.  There are clinical trials going on now of LMT-X in Alzheimer’s and frontotemporal dementia.  LMT-X is made by TauRx Therapeutics.  One of the researchers there is Claude Wischik.  On the website Alzforum, Dr. Wischik argues that the data for LMT-X in humans is more positive.  And he’s still hopeful.

If you want all the nitty gritty details, check out this article on the Alzforum:



New NIH Pamphlet on MSA (November 2014)

Someone on the ShyDrager Yahoo!Group recently posted a link to the NIH pamphlet on MSA. Though the link is the same as before, the pamphlet itself has been updated. The date on the current pamphlet is November 2014. The first version of this pamphlet was written in 2009.

The main changes between the 2009 version and the 2014 version are in the diagnosis section and the research section. The diagnosis section has a new paragraph about a DaTscan, which is a kind of PET scan that assess dopamine transporter function in a specific part of the brain. The pamphlet notes that “this test cannot differentiate between MSA and Parkinson’s disease.” I wish the pamphlet had said that not everyone with MSA will have reduced function of this transporter in this specific area of the brain.

In the research section, there’s a discussion of alpha-synuclein research:

“Recent studies have demonstrated that the alpha-synuclein taken from brain tissue of patients with MSA is a potent inducer of alpha-synuclein clumping when injected into the brain of experimental animals. … Research in animal models may determine if drugs that reduce the abnormal alpha-synuclein accumulation might be promising treatments for MSA.”

There’s also a note in the research section about the failed rifampicin trial. And the comment that “MSA is one of the diseases being studied as part of the NINDS Parkinson’s Disease Biomarkers Program.”

There’s a small change in the treatment section. The pamphlet notes that the FDA approved the medication droxidopa in 2014.

Here’s a link to the pamphlet:


Multiple System Atrophy
Public Health Service, National Institutes of Health
November 2014
NIH Publication No. 15-5597


Caregiver stress and taking care of yourself

Someone in our local Brain Support Network group sent me a link to this good article on caregiver stress.

Several sources of caregiver stress are identified:

  • no “off” time
  • balancing relationships
  • role reversals
  • volatile personalities
  • economics
  • difficult decisions

Symptoms are caregiver stress described in the article include:

  • depression
  • anxiety
  • irritability
  • denial
  • social withdrawal
  • health problems

Finally, the article discusses tips for overcoming caregiver stress.  Here’s a link to the article:


Caregiver Stress: Remembering To Take Care Of Yourself
by Fawne Hansen
The Adrenal Fatigue Solution



Anticipatory Grief – three short articles (and some excerpts)

Anticipatory grief is the loss we feel while our loved one is alive and dealing with a life-threatening illness.  This grief can be felt by caregivers, patients, family members, friends, etc.  Someone recently posted several articles on the topic of anticipatory grief to an LBD-related online support group.

The three short articles are:

“Coping As You Anticipate Loss”
By Marty Tousley, 2009

“What is Anticipatory Grief”
By AZ Center for Loss & Grief

“Anticipatory Grief Symptoms: What’s the Big Deal?”
By Harriet Hodgson, 2005

I’ve copied below a few excerpts from these three resources.  If you only read one, I’d recommend the Marty Tousley article (or the excerpts).




Excerpts from
Coping As You Anticipate A Loss 
By Marty Tousley, 2009

Grief does not wait for death to happen; it occurs both in anticipation of and following a loss. Extended illness, disability, severe accidental injury, a terminal diagnosis or the aging and decline of an elderly family member can produce what is known as anticipatory grief and mourning. We find ourselves reacting and continually adapting not only to an expected loss, but to all the losses – past, present, and future – that are encountered in that experience.

Anticipatory mourning begins as soon as we become aware that death may happen. It begins when a life-threatening illness is diagnosed or a terminal prognosis is given, we understand that there is no cure, and we realize that death is likely or inevitable.

Issues of grief and loss are inherent in the care-giving process, and grief is experienced by everyone involved — whether we are the patient grappling with the illness or disability, or the family member, partner, close friend or caregiver who is intimately connected with and looking after our loved one. We are coping not only with our own feelings of grief and loss, but also with physical and mental fatigue. We may feel overwhelmed with all the financial, legal, medical and personal responsibilities associated with care-giving.

In some ways, anticipatory mourning can be harder than the grief we experience after the death, because when we are waiting for the death to happen, we are on constant alert, living in a state of emergency over an extended period of time.

On the other hand, this period offers the benefit of preparation time, as we and those close to us begin to think about our life without the one who is dying, and how we and our loved one can use the time remaining to reflect, to prepare for the future, and to finish unfinished business.


Excerpts from
What is Anticipatory Grief? 
By AZ Center for Loss & Grief

Anticipatory grief is … a grief we keep to ourselves. We want little active intervention. There is little or no needs for words, it is much more of a feeling that can be comforted by the touch of a hand or silently sitting together. Most of the time in grief we are focused on the loss in the past, but in anticipatory grief we occupy ourselves with the loss ahead.

When a loved one has to undergo preparatory grief in order to prepare for the final separation from this world, we have to go through it too.  We may not realize it at the time. … Even if you go through any or all of the five stages ahead of the death, you will still go through them again after the loss.

…Experiencing anticipatory grief may or may not make the grieving process easier or shorten it. It may bring only feelings of guilt that we were grieving before the loss actually occurred. … Not everyone experiences anticipatory grief and if they do, certainly not in the same way.


Excerpts from
Anticipatory Grief Symptoms: What’s the Big Deal?
By Harriet Hodgson, 2005

You don’t talk publicly about your grief because you’re afraid of the reactions you’ll get.  It takes courage to    “grieve in a society that mistakenly values restraint,” according to Judy Tatelbaum, author of “The Courage to Grieve.” 

…The worst symptoms of all — anxiety and dread — illustrate this point.  Robert Fulton, PhD and Robert Bendiksen, PhD discuss anxiety in their book, “Death & Identity.”  You expect your loved one to die, they explain, but “exactly when it will take place is not known.”  …  If you feel this badly now, how will you feel when your loved one is gone?

Talking about feelings will help you to relieve anxiety.  Instead of brooding alone, talk with a trusted friend.  Your church and local hospital or hospice may have grief support groups.

…Depending on your loved one’s illness, you may grieve for a year, five years, 10 years, or more.  …

A sudden death hits you like an explosion, [Edward] Myers explains, and sends you into shock, whereas a slow decline “arrives more like a glacier, massive and unstoppable, grinding you down.”  Dealing with the symptoms of anticipatory grief gets harder with each passing day.

“Are You Grieving” (a checklist)

This is a checklist of the physical, mental, and behavioral symptoms of grief.  (It was posted to the PSP Forum recently.)


Are You Grieving?  A checklist of the physical, mental, and behavioral symptoms of grief. 
by FamilyCare America

Note that lots of hospice agencies run grief support groups.  Often, these groups accept anyone in the community — not just clients of that hospice agency.


Suggestions for those dealing with neurological disorders (FTD)

Recently I had the opportunity to present at The AFTD (Association for Frontotemporal Degeneration) conference in San Diego. And a generous donor to Brain Support Network has enabled us to offer grants to assist FTD families in need with brain donation.

Because of this flurry of activity with The AFTD, I’ve been checking out the resources on their website (theaftd.org). Tonight, I came across a great list of suggestions from people with FTD (frontotemoral dementia) for people with FTD, and their family and friends. Though the list refers in a few places to “FTD,” just substitute the disorder you are dealing with and I’m sure you’ll still find the list applicable to your family.

The list includes suggestions such as:

  • Accept the diagnosis.
  • Learn about your diagnosis.
  • Mourn the losses.
  • Think of the symptoms as disabilities.
  • Create a team.
  • Find support.
  • Pick your battles.
  • Address changing relationships.
  • Participate in research.

See the full article here:


Suggestions from people with FTD for people with FTD (and their family and friends)
The AFTD website


“Atypical multiple system atrophy is a new subtype of frontotemporal lobar degeneration”

This is an interesting paper out of the Mayo Clinic Jacksonville about “four patients…with clinical features consistent with frontotemporal dementia (FTD), including two with corticobasal syndrome, one with progressive non-fluent aphasia, and one with behavioral variant FTD.  None had autonomic dysfunction.”

Curiously, these four patients met the pathological criteria for multiple system atrophy (MSA).  These were all atypical MSA cases because “[all] had frontotemporal atrophy and severe limbic α-synuclein neuronal pathology.”

The Mayo researchers note a previous case report of a woman with progressive dementia, psychosis, and muscular rigidity “with neuropathological features of both MSA and LBD” (Lewy body dementia).  This could be a fifth case of atypical MSA with features of FTD.

Researchers also note that six other atypical MSA cases have been reported around the world.

They conclude:

“Atypical MSA does not fit into any of the current categories [of FTLD – frontotemporal lobar degeneration]. We propose a new category of FTLD for atypical MSA—FTLD-synuclein. Alternatively, atypical MSA could be considered a subtype of MSA in addition to MSA-P and MSA-C, namely MSA-FTD. From a clinical perspective, this is a more challenging diagnosis, since none of our patients carried an antemortem diagnosis of MSA; rather, the clinical picture was that of FTD.”

The abstract is copied below.

The things you learn via brain donation!



Acta Neuropathologica. 2015 Jul;130(1):93-105. Epub 2015 May 12.

Atypical multiple system atrophy is a new subtype of frontotemporal lobar degeneration: frontotemporal lobar degeneration associated with α-synuclein.

Aoki N, Boyer PJ, Lund C, Lin WL, Koga S, Ross OA, Weiner M, Lipton A, Powers JM, White CL 3rd, Dickson DW.

Multiple system atrophy (MSA) is a sporadic neurodegenerative disease clinically characterized by cerebellar signs, parkinsonism, and autonomic dysfunction. Pathologically, MSA is an α-synucleinopathy affecting striatonigral and olivopontocerebellar systems, while neocortical and limbic involvement is usually minimal. In this study, we describe four patients with atypical MSA with clinical features consistent with frontotemporal dementia (FTD), including two with corticobasal syndrome, one with progressive non-fluent aphasia, and one with behavioral variant FTD. None had autonomic dysfunction. All had frontotemporal atrophy and severe limbic α-synuclein neuronal pathology. The neuronal inclusions were heterogeneous, but included Pick body-like inclusions. The latter were strongly associated with neuronal loss in the hippocampus and amygdala. Unlike typical Pick bodies, the neuronal inclusions were positive on Gallyas silver stain and negative on tau immunohistochemistry. In comparison to 34 typical MSA cases, atypical MSA had significantly more neuronal inclusions in anteromedial temporal lobe and limbic structures. While uncommon, our findings suggest that MSA may present clinically and pathologically as a frontotemporal lobar degeneration (FTLD). We suggest that this may represent a novel subtype of FTLD associated with α-synuclein (FTLD-synuclein).

PMID: 25962793  (see pubmed.gov for the abstract only)

“Living with uncertainty” and “When the worrying won’t stop”

This post is of general interest to those of us living with uncertainty.

Hospice of the Valley (which provides hospice services to those in Santa Clara County) has a nice e-newsletter with resources for family caregivers.  In the May/June 2015 e-newsletter, which came out today, there’s a good article on living with uncertainty:


Living with uncertainty
Hospice of the Valley
May/June 2015 e-newsletter

There’s a good list of “questions to recognize and challenge [our] ‘need’ for certainty.”  One question is:

“Do your predictions focus mostly on bad things happening?” 

And there’s a related article about worrying worth checking out:


When the worrying won’t stop
Hospice of the Valley
May/June 2013 e-newsletter

In the article about worrying, this interesting suggestion is given:

“Schedule a 45-minute ‘worry time’ for yourself every day. If a worry pops up at another time, write it down for review during your next worry period.”

Seems kind of long but I like the general idea.