2019 LBD LBD Conference: Netflamapimod, an Experimental Drug of Promise.

In April, 2019, EIP Pharma announced that they had funded a program to explore the use of neflamapimod as a treatment for DLB. Phase 2 clinical studies are expected to start this year. Ongoing Phase 2 studies trials with early Alzheimer's are expected to provide results in early fall. The drug inhibits an enzyme involved in a process that appears to increase nerve inflammation and turn a natural protein, alpha-synuclein, into toxic Lewy bodies.

Even if this new drug shows promise, it is still a long way from being available for use. Phase 2 trials can last up to two years and only about a third of experimental drugs pass these tests. In addition, drugs may undergo more than one Phase 2 trial. So far, neflamapimod has had four. Each phase of a clinical trial takes about 2 years, but as with the trials of neflamapimod for Alzheimer's, there can be more than one in each phase which may or may not run concurrently.

Netflamapimod has been in Phase 2 clinical trials for use with Alzheimer's since 2015. The four Phase 2 trials brought about enough positive reports to instigate Phase 2 trials for other diseases, including DLB, to start in 2019. If everything goes perfectly, it may be ready for FDA approval in five years--in about 2024. (2 more years for the new Phase 2 tests and 3 years for Phase 3).

FDA approval can be a long drawn out process taking 2-3 years. The FDA has been fast tracking drugs to treat serious conditions like dementia. The skipped steps do decrease the assurance of a drugs effectiveness but it can shorten the approval process by many months. Our experience is that most people living with LBD and their families would be willing to accept that danger so as to be able to try the drug sooner.

However, once the drug is on the market, it still won't be easy to get. Doctors may also hesitate to prescribe them until Phase 4 clinical trials, which occur after a drug is on the market, are complete. These Phase 4 trials test new drugs that are in public use for any problems that might have been missed in the previous trials. Even if your doctor is willing to prescribe it, insurance companies provide limited coverage for new drugs that are usually a lot more expensive than existing drugs to start with.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

2019 LBD Conference: People Living with LBD

The Caregiver Track conference highlighted people living with LBD and their experiences. Last week, our guest blogger, Rosemary Dawson, told us about Susan Williams and what a wonderful advocate for LBD she has become. Today, she tells about the some of the other speakers.

Laura Turner Seydel is a national environmental advocate and daughter of Ted Turner. There has been nothing in the media about Ted Turner and his Lewy journey since his interview with Ted Koppel in September 2018 during which he demonstrated that he knew very little about LBD, likening his case to a "mild case of Alzheimer's ... but not nearly as bad ... Thank goodness, I don't have that.”

Laura told a different story. We appreciated her candor in describing her father's Lewy journey and the information she shared that shows that his family has a better understanding of LBD than he expressed in that interview. Our hope is that Laura will be another vocal LBD advocate and that her presentation at the conference will be the first of many efforts by Ted Turner's family to bring awareness of the disease that afflicts him.

Ted was diagnosed only a few years ago but Laura tells how he experienced RBD (REM sleep behavior disorder, or Active Dreams) way back when he was still married to Jane Fonda. (They were divorced in 2001.) Ted, who celebrated his 80th birthday in 2018, appears to be doing fairly well. Although he tires easily and has problems with short term memory, he stays active. He particularly wants to continue to ride horses on his Montana ranch although his parkinsonism makes this difficult and dangerous. This desire motivates him to do yoga every day (with his private yogi). The yoga strengthens his core and helps his flexibility, which allows him to ride and has other benefits as well.

Don and Cynthia Kent were very effective in presenting what life is like for those who live with LBD and for their spouses. They illustrated the challenges, but also the rewards and demonstrated that people can live well with Lewy. Don Kent is a retired lawyer from Tyler, TX; Cynthia is a retired judge who still practices law. They shared their life pre-Lewy, the early symptoms, the diagnosis, and how they are trying to live well with Lewy. Don was candid that before he had a diagnosis, he had thoughts of suicide which sent them to the Mayo Clinic where he was diagnosed with LBD. These two short videos are both well worth watching., one of Don talking about his LBD journey and one about the couple's activities in making Tyler a dementia friendly community You can also read about them in this article. https://tylerpaper.com/lifestyle/health/tyler-attorney-don-kent-faces-lewy-body-dementia-diagnosis-with/article_2f7ba26d-78f7-5413-bbd7-6fe279abc786.html and

https://www.youtube.com/watch?v=9eL9qfMZW48&feature=youtu.be

https://www.kltv.com/2019/02/22/tyler-becomes-only-second-texas-city-recognized-dementia-friendly-community/

This was my third time meeting Don and Cynthia. They are doing so much to spread awareness and educate people. Truly inspiring that they are doing this while facing the ups and downs of life with Lewy.


Robert Bowles is a retired pharmacist from Georgia. Since being diagnosed with LBD at the age of 64, Robert has been tireless in his efforts to bring awareness to LBD, to support those living with Lewy, and to bring all of the LBD stakeholders together to tackle the many facets of LBD. Robert talked about “A Life Reexamined.” He recalled how when he was in the throes of REM sleep behavior disorder (RBD) and terrible hallucinations, he wanted to give up and die, but he believes that God told him that He was not done with him yet. Robert talked about how he tries to share the principles that guided him before Lewy: Love, care, education, encouragement, and hope. And he talked about his acronym ASAP: Acceptance, Socialization, Attitude, and Purpose. I encourage you to read more about Robert, his life with Lewy, and his work. His video is worth watching too. You can see a video of Robert at https://www.youtube.com/watch?v=swY9zTsySKA
See also http://dementiajourney.org/tag/dementia-action-alliance/ and https://www.lbdlivingbeyonddiagnosis.com/index.html

It is my honor to serve with Robert Bowles on the Living with Lewy Advisory Council which is largely the result of his persistence in advocating for such an entity.



Josh and Emily Ohde talked about their ongoing support for Josh’s father, Larry, who has LBD. Josh’s mom died, so his dad’s care fell to him and his wife, Emily. They relocated Larry with them from Kentucky to Rochester, Minnesota. Larry lives in a long-term care facility only a few minutes from where Josh and Emily live, so they spend time with him every day, often taking him out to explore their new environment. Their presentation highlighted how family members can continue to be very active care partners and advocates for their loved ones with LBD when the person is an LTC facility.

Our next blog will describe an experimental drug we learned about at the conference.


For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

2019 International LBD Conference: Susan Schneider Williams

The Caregiver Track of the conference highlighted people living with LBD and their experiences. This week, our guest blogger, Rosemary Dawson, tells us about one of these speakers.

Susan Schneider Williams, Robin Williams’ widow and probably the country's most high-profile LBD advocate, did an exceptional job during the welcome and round table. Her level of knowledge, amount of self-disclosure, vulnerability, and ability to articulate important points provided standout moments. Susan shared information about her Lewy journey with Robin that I hadn’t seen disclosed before.

Despite their wealth and number of specialists, they experienced what so many of us have been through. Increasing symptoms, no diagnosis, incorrect diagnoses, and incomplete diagnosis (PD). Robin never knew that he had LBD because it was only upon autopsy that they discovered what one LBD specialist described as the worst case of LBD he had ever seen as well as signs of Alzheimers. Mixed dementia is very common, but as with Robin, often not discovered until autopsy.

Also, in retrospect, it is apparent that Robin experienced many of the classic LBD symptoms: short term memory loss (inability to memorize his lines for his last film), hallucinations, paranoia, anxiety, parkinsonism, withdrawal, loss of executive functions, and more. He knew something was wrong and wanted to re-boot his brain. Because of his previous experiences with substance abuse and depression, some doctors misinterpreted his symptoms and prescribed drugs that can have adverse effects on people living with LBD. Although he had been drug-free for many years, he returned to a 12-step rehab program to see if the strategies there might help with his current condition. It didn’t.

After Robin Williams died in 2014, Susan set out to raise awareness about this little known yet devastating brain disease by telling about his exhaustive battle with LBD.
https://www.americanbrainfoundation.org/about-us/governance/susan-schneider-williams-bfa/
As spokesperson for Lewy Body Dementia, she is committed to raising awareness for brain disease. She has appeared on many talk shows and serves as the Vice Chair on the board of directors for the American Brain Foundation. In 2016, she moderated a 2016 Forbes Healthcare Summit panel, authored an editorial for Neurology, the journal of the American Academy of Neurology and received the American Brain Foundation's Commitment to Cures Award. Her Neurology editorial for “The Terrorist Inside my Husband’s Brain” is required reading in many medical schools and has been downloaded millions of times. You can read it at https://n.neurology.org/content/87/13/1308

Robin's Wish is a timely and urgent biographical documentary of the much beloved Robin Williams that weaves together the untold love story of his third marriage, his untimely suicide, his unknown illness and his universal experience moving through pain in the search for healing and joy. You can see excerpts from the film and read a full description here. (Note: the description calls Robin's disease rare. We know that although it is often unrecognized, it is far from rare! With 1.4 million people in the US alone, it is not rare. Rare is 20,000 or fewer.
https://www.documentaries.org/robins-wish

This film will have a first showing as a fund raiser in New York on July 17th. After that, Susan is not yet sure how it is going to be distributed - likely online - perhaps, iTunes, Amazon, or Netflix. https://lewybodyresourcecenter.org/robins-wish-lincoln-center/




Susan is opening a topic of discussion that needs more light shed on it: suicide. Lewy bodies can destroy the parts of the brain that control rational thought and decision making, and some drugs prescribed for the symptoms of LBD can cause suicidal ideation, suicidal behavior, and suicide-related events. I hope that Robin’s Wish provides a good understanding of these potential causes of suicide.


For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

2019 International LBD Conference: Patient/Care Partner Track

This week's blog is about presentations in the Patient and Care Partner Track of the 2019 International LBD Conference that we attended recently in Las Vegas.

Several people living with early stage Lewy talked about their experiences, with an emphasis on the fact that although they have the disease, they are still the same person, albeit with more limited abilities. This loss of abilities has led to their need to find other ways to feel usefull. Family members, including Robin William's wife and Ted Turner's daughter, talked about their experiences and their loved one's journeys. In future blogs, Rosemary Dawson will be telling about these interesting speakers. Today's blog is a summary of some of the other presentations. I will cover several of the topics much more thoroughly in future blogs.

Partnering with your Medical Team. Dr. Melissa Armstrong, Florida, presented methods for partnering with your medical team. Her main points: a) know yourself and your loved one, b) help your team get to know you, c) identify your team, d) partner with them, and e) continually reassess.

Dealing with Fluctuations an Hallucinations by Tanis Ferman, a  pioneer in LBD-related behavior management. Highlights were a discussion of what fluctuations and hallucinations are and aren't, why hallucinations occur, their connection to emotions, and some management suggestions. Along these same lines, Dr. Boeve, another LBD pioneer, talked about Coping with RBD but didn't provide any literature.

Evidence based Strategies for Supporting Care at Home by Laura Gitlin, Dean of College of Nursing and Health Professions, Drexel University. Laura advocated changing the cycle of care from an unhelpful one with little care or patient/caregiver input to a more hopeful one, with patient and care partner participation.

Four Pillars of LBD Care and Empowerment, by our own LBDA staff member, Angela Taylor. The pillars are 1. Advance preparation, 2. Use outside resources, 3. Care for yourself, and 4. Leverage your experience.

Non‐drug Approaches for Care Partners to Use When a Loved One Living with LBD has Behavioral Symptoms by Rosemary Dawson and the Whitworths (yes, us!). Although Dr. Ferman talked about hallucinations and Dr. Boeve talked about RBD, our poster was the only other presentation specifically about dealing with behavioral symptoms. We identified dementia-related behaviors and listed a variety of non-drug therapies. It is quite thorough and can be accessed via our website and used by group facilitators or others who want to spread the word about dealing with these bothersome symptoms with fewer drugs.

End of Life and Use of Hospice Care in Patients with Dementia with Lewy Bodies. Briana Arman, Cleveland U.. Briana's poser showed that while hospice was often utilized, it was seldom for more than a few days or weeks. While new regulations have made it difficult for someone with only dementia to go on hospice, people living with LBD usually have other physical conditions that would help them qualify. However too many people still believe that hospice is only for the final days.

Staying Connected and Living Well with LBD, by Allison Killen. The founder of the Lewy Body Society in the UK presented this as being informed, focuses on the positive and involved and discussed various aspects of this.

Thriving Through Singing, by Mary Lenard. The co-founder of Giving Voice talked about how singing, especially in groups, fosters well being, purpose, community and understanding. Her group inspires and equips organizations to bring together people living with dementia and their care partners to sing.

Finally, a few other bits of information we picked up:

A Canadian poster pointed out the importance of social media for support for those in rural areas, and especially for those dealing with early onset dementia. (Or I'd suspect, any kind of rare diseases where even in an urban setting, specific support groups would be limited.)

We found it interesting that researchers discovered no significant evidence of age-related decline in adults over 60 without LBD. For researchers, this is of concern due to possible over-correction for "age." For the rest of us, it means that we can't claim "senior moments" as easily...and that they are more likely evidence of early MCI! (But also, let me remind you, of stress.)

Microbleeds (small chronic brain hemorrhages) in patients with DLB were related to high blood pressure but not DLB or AD. (We wondered if they were related to vascular dementia?) They were associated with less severe attention, visuospatial dysfunction and less parkinsonism.

The next blog: More conference information.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

2019 International LBD Conference: Overview

Last week was about the helpful programs and projects we learned about at the conference. This week a review of 142 abstracts gives us a general overview of they kinds of information presented at the conference. About half were scientific and half were clinical.

The scientists focused on biomarker identification in early LBD and in comparing LBD and AD brain pathology. The focus has definitely shifted from finding new ways to treat dementia to finding ways to identify it as early as possible. Mild cognitive impairment (MCI) was a much mentioned phrase and many reports were about efforts to identify and compare early symptoms in those with various kinds of MCI. Another strong area of focus is the identification of mixed dementias. One report noted that identifying the differences between DLB-AD and 'pure' DLB was equally or even more important than  identifying the difference between DLB and PDD.

Of the LBD symptoms, hallucinations, parkinsonism, RBD (Active Dreams), cognitive fluctuations and depression were the most discussed.

Hallucinations and visuospatial dysfunctions (poor hand-eye co-ordination, poor depth perception) were found to be associated with orthostatic hypotension (low blood pressure on rising) and slow cognition. People who hallucinated were found to put more emphasis on prior knowledge than they did on their senses. Thus, if a person has had prior knowledge of a dog that bites, then seeing a friendly dog may still be scary. This would also be more likely because the negative emotions tend to be in charge.

RBD (Active Dreams) at MCI diagnosis is related with a younger age, less AD, more parkinsonism, and a shorter survival. RBD was less common with LBD/AD females. A review of patients in a psychiatric hospital found symptoms indicative of RBD. Several reports found that home testing measures, including even a telephone interview for specific RBD symptoms might be as effective as formal overnight sleep test and much less of a hardship on the patient. Dopamine deficiency in patients with RBD was found to be a possible biomarker for dementia.

Parkinsonism at onset of MCI was always accompanied by RBD but did not predict DLB although it did increase any progression to DLB and was present 75% at time of death. It was associated with excessive daytime sleeping (EDS), less Alzheimer's and a shorter survival and progression to death.

Cognitive fluctuation biomarkers included telling time and EEGs: LBD-related cardiac (heart) nerve dysfunctions (an indicitative biomarker for DLB) were suggested to explain the differences in alertness. That is, when fluctuations in cardiac nerve function leads changes of oxygen to the brain with matching brain function fluctuations. These fluctuations continue to show up even late in the disease in 75% of patients.

Depression was identified as a serious, under-addressed problem with LBD, with some suggestions of its LBD related cause but few suggestions for treatment, other than increasing dopamine in some way.

Biomarkers were a big subject and covered a wide variety of objective, measurable tests. As care partners, we need to be especially aware of how valuable those obtained from the cerebral spinal fluid have become. There is a concerted effort to get people to submit to these tests, for their own needs but even more so for building up a network of subjects for clinical testing.

Drugs. There are still no drugs for treating DLB specifically, and no new ones for treating PDD. There are some variations of the old cholinesterase inhibitors (Aricept, Exelon and Razadyne) to make them longer-lasting, or used with a patch, or combined with drugs that reduce gastric side effects. There are a few drugs being tested.

• Pimavanserin, an anti-psychotic approved for use with PDD psychosis, is now being tested with other dementias.
• Neflamapimod, barely in Phase 2 testing for use with DLB, is believed to decrease brain inflammation that turns alpha-synuclien into Lewy bodies.
• (Zonisamide-(ZNS), first used to treat epilepsy, is in Phase 3 trials for treating parkinsonism in DLB with fewer side effects than anti-Parkinson's drugs. Drugs that get this far usually go to market but it could still be five years before we see it. (These trials can last up to 3 years and then, it still has to go through an approval process with the FDA that can last for 2 years.)
• Recruiting has begun for Phase 2 clinical trials of LY3154207, a PD drug that is hoped to increase dopamine function with fewer side effects.

Next week will be an overview of some of the subjects covered in the Patient and Care Partner track.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.