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