“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