Update on nilotinib, including MJFF webinar on Tuesday, Aug 2

This post may be of most interest to those dealing with Lewy Body Dementia (Dementia with Lewy Bodies and Parkinson’s Disease Dementia).

I first started hearing about the leukemia drug nilotinib back in 2013.  You can find an email sent to the group back in 2013 here:


In 2013, Georgetown published some basic research that showed that nilotinib getting rid of alpha-synuclein in the brains of transgenic mice with Parkinson’s.  A Georgetown press release mentioned that they wanted to do phase II studies in PD, LBD, MSA, and PSP — a surprising combination since PSP is not an alpha-synuclein disorder.

In October 2015, Georgetown announced results of a phase I clinical trial of nilotinib in 12 patients for a 6-month period.  Unfortunately there was a mix of diagnoses — 5 had a DLB (dementia with Lewy bodies), 3 had PD-MCI (PD-mild cognitive impairment), 2 had PDD (Parkinson’s disease with dementia), one had PD plus MCI, and one had PD.  Phase I studies are safety studies so I found it confusing that the researchers claimed the “drug improved cognition, motor skills, and non-motor function” in the 11 patients who completed the study.  (One had to drop out due to a serious side effect.)  The study size was very small and there was no placebo-control.  Also, the cancer drug costs several thousand dollars per month.

In November 2015, I asked several movement disorder specialists about use of nilotinib for PD or any of the atypical parkinsonism disorders.  All of the MDs scoffed at the idea.  One said that the nurse in the movement disorders clinic where he works worked for many years in oncology.  That nurse was frightened by the idea that anyone without leukemia would take nilotinib.

In December 2015, I learned that a member of our local support group (whose husband may have LBD) was able to obtain a prescription from a local physician for nilotinib.  It was costing them a bundle.

People are still talking about nilotinib, especially in the PD and LBD communities.  The Georgetown team’s phase I results were finally published in July 2016.  You can read the results here:

Nilotinib Effects in Parkinson’s disease and Dementia with Lewy bodies

Along with the Georgetown results, the journal published an accompanying editorial titled “Nilotinib – Differentiating the Hope from the Hype.”  The authors of the editorial said:  “We debate the safety of Nilotinib and the reported efficacy signals.  We emphasize that due to the small sample size, and lack of a control group, it is impossible to rule out a placebo effect.”  You can read that editorial here:

Nilotinib – Differentiating the Hope from the Hype

If nilotinib is of interest to you, I’d suggest checking out this Michael J. Fox Foundation overview of the scientific rationale behind nilotinib:


Or, if you still want more, the Michael J. Fox Foundation will be having a webinar on Tuesday, August 2nd, from 9 to 10am CA time about nilotinib as a possible treatment for PD.

You can register here:


The panelists “will discuss the scientific rationale behind nilotinib for Parkinson’s, findings from recent research and next steps in the study of this drug.  Q & A with the audience will follow the discussion.”



Confusion between palliative care and hospice care

This article is about the confusion between palliative care and hospice care.  According to the author, the confusion means that some people don’t get the care they need.


Palliative Care Is Not Just for Hospice Patients
Confusion between it and hospice means some get less care
By Jennifer L. Boen
July 20, 2016

This article appeared previously in the Fort Wayne News-Sentinel.  The link above is to the NextAvenue website, which is a publication of Twin Cities Public Television.  Thanks to Debbie, a member of our local support group, for sending this article to me.


“The Differential Diagnosis of Dementia With Lewy Bodies” (article for neurologists)

Neurology Advisor is a publication for neurologists and other healthcare professionals in the field of neurology. This is an article from July 2016 on the differential diagnosis of Dementia with Lewy Bodies (DLB), described as the “most misdiagnosed form of dementia.”

Given Brain Support Network’s involvement with brain donation, I would say that DLB is also the most over-diagnosed form of dementia. We don’t often see DLB confirmed upon brain donation. (Part of the confusion is that DLB frequently co-occurs with Alzheimer’s Disease. Plus, Alzheimer’s Disease can have parkinsonism and hallucinations as late-stage symptoms.)

This short overview of DLB in Neurology Advisor addresses symptoms, pathology, appropriate treatment, advances in diagnosis, and working with what’s available.  See:


When It’s Not Alzheimer’s: The Differential Diagnosis of Dementia With Lewy Bodies
Tori Rodriguez, MA, LPC
Neurology Advisor
July 27, 2016



Short descriptions of four atypical parkinsonism disorders (MJFF)

The Michael J. Fox Foundation has a new webpage on “Atypical Parkinsonism” as well as short descriptions of the four atypical parkinsonism disorders on their Fox Trial Finder site. Merging the two sources, I’ve copied below how the organization describes the four atypical parkinsonism disorders.


Atypical Parkinsonism
by Michael J. Fox Foundation

Atypical parkinsonism includes several conditions in which an individual experiences some of the motor signs and symptoms of Parkinson’s disease (PD), including tremor, slowness, rigidity (stiffness) and walking/balance problems, but does not have PD. [These] conditions tend to progress more rapidly than Parkinson’s and do not respond well to levodopa.

Atypical parkinsonism can sometimes be due to medications and may also be seen in other neurodegenerative and brain disorders. Some of the neurodegenerative diseases associated with atypical parkinsonism include:

* Corticobasal degeneration: CBD is a type of parkinsonism associated with very noticeable motor and cognitive (thinking) symptoms. People with CBD typically have prominent limb stiffness and dystonia (involuntary muscle contraction that causes an abnormal posture) and memory and/or thinking difficulties.

* Dementia with Lewy bodies: DLB, also called Lewy body dementia (LBD) also shares many symptoms of PD and Lewy bodies, but cognitive problems and dementia occur early in the disease process. DLB/LBD may also cause visual hallucinations (seeing things that aren’t there); unpredictable fluctuations in a person’s level of attention or alertness; and changes in mood, behavior and personality.

* Multiple system atrophy: MSA shares many symptoms with PD and also shows clumps of the alpha-synuclein protein (Lewy bodies). MSA affects the autonomic nervous system, which controls automatic, involuntary activities (like blood pressure, digestion and sexual function) and may cause fainting, severe constipation and/or issues with bladder control. Anterocollis (head dropping forward) and speech difficulties are commonly associated.

* Progressive supranuclear palsy: Walking and balance problems, which are also part of Parkinson’s, are particularly severe in PSP and people with this condition experience significant falls. Eye movement problems, which can cause blurred vision, and speech and swallowing disturbances are also prominent.

These neurodegenerative diseases, which cause damage or death of brain cells, are often referred to as “Parkinson’s plus” because they mimic PD but have extra associated features (the “plus”). They can be misdiagnosed as PD because there is no definite test that separates them and, early in the course, some people may get a short-term benefit from levodopa (the most commonly used medication to treat PD). A waning levodopa response, development of additional symptoms and more rapid progression of disease (as compared to Parkinson’s) may eventually differentiate these conditions from PD, although it can take years for these differences to emerge. As with PD, no disease-modifying therapy has been discovered for any of the neurodegenerative atypical parkinsonisms. Treatment is symptomatic and supportive.

Because of the similarities between PD and atypical parkinsonism, research into one can inform the science behind the other. Fox Trial Finder features studies recruiting individuals with atypical parkinsonism to uncover research breakthroughs that cross diagnostic lines.



Fox Trial Finder Expanding to Include Atypical Parkinsonism

My name is Phil Myers and I have Parkinson’s Disease.  I have been involved with Brain Support Network (BSN) since my wife was diagnosed with progressive supranuclear palsy (PSP), one of the atypical Parkinsonism diseases.  Her story is available on BSN’s website at:


BSN has partnered with the Michael J. Fox Foundation to help spread the news regarding their new effort to improve research into four atypical parkinsonism disorders — corticobasal degeneration, progressive supranuclear palsy, multiple system atrophy, and Lewy body dementia/dementia with Lewy bodies.

An ongoing issue is recruiting patients to participate in clinical trials and studies.  Fox Trial Finder is a tool that has provided information on trials and studies of research in Parkinson’s Disease.  This week, Fox Trial Finder has been expanded to include the atypical parkinsonism diseases.  Those with CBD, PSP, MSA, or LBD/DLB can now register with FTF here:

Fox Trial Finder

As a Board member of Brain Support Network, I encourage you to register and help researchers solve the mysteries of your disease of interest.

Copied below is the announcement about this from the Michael J. Fox Foundation.

[email protected]

Announcement from
Michael J. Fox Foundation
July 25, 2016

Fox Trial Finder Expands to Include Atypical Parkinsonism

The Michael J. Fox Foundation’s online trial matching tool, Fox Trial Finder, is expanding to include studies and registration options for atypical parkinsonism, conditions that share some symptoms and biology with Parkinson’s disease.

Speeding research into atypical parkinsonism will advance understanding and therapies for these conditions and, perhaps, for Parkinson’s as well.

Register today for Fox Trial Finder to be matched with studies. Already registered?  Make sure your profile is up to date.

Learn more about atypical parkinsonism in our next Third Thursdays Webinar on August 18 — michaeljfox.org/webinars


“What Are the Other Parkinsonisms?” Webinar, Aug 18, 9am CA time

The Michael J. Fox Foundation has a terrific monthly — Third Thursdays — webinar series. Finally they are getting around to the atypical parkinsonism disorders next month, Thursday, August 18th at 9am California time. (….though it seems that there will still be a Parkinson’s Disease angle on the webinar.)

If you are not able to participate in the one-hour webinar live, I encourage you to register for it so that you’ll receive notice when the recording is available online. Usually the recording is available within a week of the webinar.

Copied below are the details from the MJFF website.


Michael J. Fox Foundation
Third-Thursday Webinar
Thursday, August 18 @ 12 p.m. ET / 9 a.m. PT

In this webinar we’ll discuss atypical parkinsonisms of corticobasal degeneration, multiple system atrophy, Lewy body dementia and progressive supranuclear palsy. What are the similarities and differences? Could treatments for one condition help those with another, including Parkinson’s disease?

Click here and then on the orange REGISTER NOW button:


“Smarter Ways to Teach Family Members Medical Skills” (online videos)

This article from last Monday’s Wall Street Journal notes that there’s now an effort to train family caregivers in providing medical skills to family members at home.  Over 43 million adults are providing care at home for a family member — almost half of them perform medical or nursing tasks.  Seventy-five percent manage medications, including administering IV fluids and injections.

Three video resources available for this type of training include:

Family Caregiver’s Video Guide to Managing Medications
created by UC Davis, AARP, and United Hospital Fund
April 2016
three videos (27 minutes total)

Caregiver College
created by Family Caregiver Alliance
November 2015
seven 7-minute video clips

SafeAtHome – Caregiver’s Guide to Caring for a Dementia Patient at Home
created by Family Caregiver Alliance
June 2015
20 minutes

Here’s a link to the article:


The Informed Patient
Smarter Ways to Teach Family Members Medical Skills
As care at home becomes more common, families are learning complex tasks traditionally performed in hospitals or nursing homes
Wall Street Journal
By Laura Landro
July 18, 2016 12:47 p.m. ET



Medicare Hospital Ratings Coming Soon

A recent article from Kaiser Health News, khn.org, notes that the Centers for Medicare & Medicaid Services will be releasing soon ratings of 3662 hospitals in the US, based on 64 measures.

Info on these 64 measures are already public on Medicare’s Hospital Compare website, medicare.gov/hospitalcompare.

The star ratings will “provide people a broader picture,” according to Medicare’s statement.  According to the KHN article, the “government originally planned to release the star ratings in April [2016] but postponed it after a majority of members of Congress echoed the [hospital] industry’s concerns.”

How do the 3662 hospitals rank?  According to the KHN article:  “Medicare said that based on its current data, 102 hospitals would receive the best rating of five stars, 934 would get four stars, 1,770 would receive three stars, 723 would be awarded two-stars and 133 would get the lowest rating of one star.”

KHN analyzed the data and found two things I thought were interesting:

#1 – “CMS rates shows 22 percent of safety-net hospitals were rated above average — four or five stars — compared with 30 percent of hospitals overall. Twenty-nine percent of safety-net hospitals were rated as below average, with just one or two stars, while 22 percent of other hospitals received those lower ratings.”

#2 – “Teaching hospitals also received lower scores on average.  … The teaching hospitals include large academic medical centers that often top the lists of best hospitals put together by groups like Healthgrades and U.S. News & World Report.”

Here are links to the two lists of hospitals mentioned above:

* Healthgrades – Top Hospitals for 2016

* US News & World Report – Best Hospitals/Ranking & Advice

So….stay tuned.

I’ve copied the full Kaiser Health News article and a link to it below.




Medicare Prepares To Go Forward With New Hospital Quality Ratings
Kaiser Health News
By Jordan Rau
July 22, 2016

Despite objections from Congress and the hospital industry, the Obama administration said it will soon publish star ratings summing up the quality of 3,662 hospitals. Nearly half will be rated as average, and hospitals that serve the poor will not score as well overall as will other hospitals, according to government figures released Thursday.

The government says the ratings, which will award between one and five stars to each hospital, will be more useful to consumers than its current mishmash of more than 100 individual metrics, many of which deal with technical matters. The hospital industry, however, fears the ratings will be misleading and oversimplify the many types of care at the institutions.

The Centers for Medicare & Medicaid Services said it would release the ratings “shortly.” In a preemptive effort to rebut criticisms, it noted its analysis showed “hospitals of all types are capable of performing well on star ratings and also have opportunities for improvement.”

The stars are based on 64 individual measures of hospitals that are already public on the government’s Hospital Compare website. Those include mortality rates, the number of readmissions, patient opinions, infection rates and frequency of medical scans like MRIs.

Medicare said that based on its current data, 102 hospitals would receive the best rating of five stars, 934 would get four stars, 1,770 would receive three stars, 723 would be awarded two-stars and 133 would get the lowest rating of one star. Another 937 hospitals would not be rated because the government did not have enough data to properly evaluate them.

“The star ratings provide people a broader picture,” Medicare officials said in a statement. “CMS used a similar approach to simplify complex quality information on other healthcare quality reporting websites, such as Nursing Home Compare, Home Health Compare, Dialysis Facility Compare and Medicare Plan Finder.”

The ratings factor in the mix of patients at a hospital, so those with a high proportion of sicker patients are not supposed to rate lower than those that handle more run-of-the-mill cases. The analysis showed hospitals of different sizes also did about the same, and critical access hospitals — small, mostly rural facilities — performed slightly better overall.

Medicare did not consider the relative wealth of patients. Its analysis showed hospitals serving large swaths of low-income people tended to receive lower star ratings. An analysis by Kaiser Health News of the hospitals that CMS rates shows 22 percent of safety-net hospitals were rated above average — four or five stars — compared with 30 percent of hospitals overall. Twenty-nine percent of safety-net hospitals were rated as below average, with just one or two stars, while 22 percent of other hospitals received those lower ratings.

Teaching hospitals also received lower scores on average. A third were rated with only one or two stars, while only a fifth of other hospitals received fewer than three stars, according to the KHN analysis. The teaching hospitals include large academic medical centers that often top the lists of best hospitals put together by groups like Healthgrades and U.S. News & World Report.

Dr. Janis Orlowski, an executive at the Association of American Medical Colleges, said the fact that so many prestigious hospitals fare poorly in the star ratings is a signal that Medicare’s methods are flawed.

“These are hospitals that everyone in the know tries to get into, so we need to be careful about the consequences, that this star rating can be misleading,” Orlowski said. “Putting the information out at this time is not in the patient’s interest.”

The American Hospital Association also expressed continued concerns.

The government originally planned to release the star ratings in April but postponed it after a majority of members of Congress echoed the industry’s concerns. Debra Ness, the president of the National Partnership for Women & Families, a nonprofit in Washington, urged Medicare to post the ratings before the end of the month.

“We believe great thought and care went into development of the Hospital Star Ratings Program,” she wrote on the group’s website.  “If needed, the program can be adjusted over time. But now is the time to move forward and give consumers a tool that will allow them to assess which hospitals do the best job of providing the care they need.”

A few resources for “healthwear” (clothing for disabled)

There was an article in the WSJ a couple of weeks ago on clothes for the disabled.  Now it’s the turn of the New York Times.  The NYT article notes that 1 in 5 of every American adults is disabled.

In the NYT article, these “healthwear” businesses and products are mentioned:

* MagnaReady, magnaready.com:  shirts with magnetic closures instead of buttons

* Care and Wear, careandwear.com:  shirts and arm bands designed for use for people with medical ports

* Runway of Dreams, usa.tommy.com:  children’s clothing from Tommy Hilfiger incorporating MagnaReady and velcro

Note that the NYT article also discusses clothing for refugees so not all of it is about clothing for the disabled.  Here’s a link to it:


Fashion’s Newest Frontier: The Disabled and the Displaced
New York Times
By Vanessa Friedman
July 19, 2016


Self-compassion: a test, some guided meditations, and on-the-job self-care for caregivers

Someone in our support group recently told me about Kristin Neff, PhD, who has written extensively about self-compassion and has a nice website at self-compassion.org. Most of us seem to have an easier time showing compassion towards others but not ourselves.

To see where you fit on the self-compassion spectrum, you might take this short test:

Her website also offers several guided meditations:

And, she talks about on-the-job self-care for caregivers. I’ve copied her “exercise” on that below.



Exercise 8: Taking care of the caregiver
Kristin Neff, PhD

If you work in a care-giving profession (and that certainly includes being a family member!), you’ll need to recharge your batteries so you have enough energy available to give to others. Give yourself permission to meet your own needs, recognizing that this will not only enhance your quality of life, it will also enhance your ability to be there for those that rely on you. For instance, you might listen to relaxing music, take a yoga class, hang out with a friend for an evening, or get a massage.

Of course, sometime our time is limited and we aren’t able to take care of ourselves as much as we’d like. Also, one limitation of self-care strategies is that they’re “off the job,” and can’t be done while you’re actually caregiving. Thus, it’s important to also engage in “on the job” self care. When you’re feeling stressed or overwhelmed when with the person you’re caring for, you might try giving yourself soothing words of support (for example “I know this is hard right now, and it’s only natural you’re feeling so stressed. I’m here for you.”). Or else you might try using soothing touch or the self-compassion break. This will allow you to keep your heart open, and help you care for and nurture yourself at the same time you’re caring for and nurturing others.