Next time: a report on the therapeutics conference.
Wednesday, February 26, 2014
As a bronze medalist in rowing in the 2004 Summer Olympics in Athens and chair of the highly successful British athletes’ commission in the 2012 London games, Sarah Winckless pursued her goals based on strenuous training, teamwork, and effective thinking.
However, Sarah faces a challenge far more daunting than most Olympians could imagine.
Since 1997, when she learned at just 22 that she carries the gene for Huntington’s disease, Sarah has faced the difficult reality of knowing that she will likely follow in the footsteps of her HD-afflicted mother Val, who requires full-time care.
Sarah has kept upbeat by focusing on athletics and her major leadership roles in the British sports and HD communities.
Huntington’s is always a family story. Sarah was the first of four siblings to undergo genetic testing. When Sarah began to feel isolated from her two brothers and sister after all three tested negative for HD, she turned once again to the “thinking challenge” she had learned in sports.
“Suddenly my siblings didn’t know what is was like to open the door of your genetic counselor and know that you’ve got a bad result,” Sarah told an audience of several hundred scientists, drug company representatives, and Huntington’s disease advocates the evening of February 24 in her keynote address at the Ninth Annual HD Therapeutics Conference, sponsored by the CHDI Foundation, Inc., in Palm Springs, CA. “And I didn’t want them to know that. But it made me different. It separated me.”
Sarah said that she “hated” herself for “thinking and feeling that way.”
“I had to choose a thought that brought me back in, that made me part of my family – they’re so important to me,” she continued. “And I did what I always do when I need to think.”
Sarah went out for a long session of rowing, which helped bring clarity to the issue at hand. She had in mind the fact that every child of a parent with HD has a 50-50 chance of inheriting the genetic mutation.
“I came up with a thought: three out of four, we’ve beaten the odds,” she said. “And for the next two weeks, every time I caught myself thinking in a negative way, I ran that thought into my brain. And people would come and go, ‘We’ve heard the news about John (the last to be tested). How do you feel?’ And I’d go: ‘three out of four, we’ve beaten the odds!’
“And it helped, because suddenly I was part of it, and I was with them.”
Sarah struck a similarly optimistic, sometimes even jovial chord throughout her speech. (You can watch an excerpt in the video below.)
At dinner, Sarah regaled a group of conference attendees with other stories from her athletic career as well as her mother’s spirited fight against HD. Though HD patients rarely live two decades beyond onset, Val has now lived with the disease for about 25 years.
I felt infected by Sarah’s optimism.
“In all of my years of dealing with HD, you are the most positive individual I have ever met,” I told Sarah as I prepared to retire for the evening.
I hugged her and gave her a brotherly kiss on the forehead. “You are not going to get HD,” I declared. She smiled broadly as she thanked me.
As an HD gene carrier, I live with the stark knowledge of the disease’s inevitability. However, scientists believe that personal enrichment and staying active and positive might very well help delay onset. And there is the very real hope of an effective treatment for Sarah, me, and the entire HD community.
Sarah Winckless and Gene Veritas (photo by Simon Noble, CHDI)
That night and into the next day, I thought of how I need to maintain my own positive attitude – not just to bolster myself in the fight against HD, but to become a better husband, father, coworker, and citizen.
As the HD therapeutics conference proceeded, Sarah’s spirit lived on as the participants presented new research demonstrating a deeper understanding of HD and continued progress in the quest for treatments.
We all need to become infected with Sarah’s optimism.
Like the Winckless family, we must all bond together in this fight.
As difficult and terrible as it may feel, we are never alone.
“Three out of four, we’ve beaten the odds” – despite her own adversity, Sarah found joy in her siblings’ good fortune.
She has reminded us of a key lesson: no matter how difficult our situation, our lives mean so much more than the fight against HD.
Next time: a report on the therapeutics conference.
Next time: a report on the therapeutics conference.
Tuesday, February 18, 2014
Should people facing Huntington’s disease take creatine and other supplements to relieve or prevent symptoms?
I saw HD inexorably destroy my mother’s ability to walk, talk, and care for herself. She died eight years ago this month. I tested positive for HD in 1999 and since then have worried daily about when it will strike.
There is no treatment to slow HD’s devastation of the brain. So I’ve been open to taking supplements that might help.
In early 1996, just shortly after learning of my mother’s diagnosis, I started taking coenzyme Q-10 (Co-Q), a vitamin-like substance found throughout our bodies and seen by researchers as a possible way to help remedy the energy deficits suffered in HD.
In 2004, when Dr. LaVonne Goodman introduced a “treatment now” regimen and clinical trial of safe supplements that had shown promising results in animal testing, I jumped at the chance to participate. I was the only presymptomatic individual in the small, three-year study, run under the auspices of Dr. Goodman’s Huntington’s Disease Drug Works (HDDW).
Starting in 2005, I introduced the supplements into my diet in steps. I worked up to a daily routine in which I took 75 grams of trehalose, a sugar that seems to help the brain clear cellular debris; 600 mg of medical-grade Co-Q; two g of omega-3 oil; two g of blueberry extract; and ten g of medical-grade creatine. The trial paid for and delivered the supplements.
The trial did not show significant improvement for any of the symptomatic participants. “The only thing that appeared to be helpful was trehalose,” Dr. Goodman said in a February 9 phone interview. Today, almost a decade later, the supplements remain medically unproven to affect HD.
Nevertheless, scientists still think that trehalose, Co-Q, and creatine might still provide help in treating HD. Since the end of the HDDW, I have continued to take all of the supplements, spending about $2,000 per year. In fact, several years ago, relying on medical advice, I roughly doubled my daily intake of creatine to about 20 g.
I get semi-annual blood tests to monitor potential kidney damage, which creatine can cause. I also drink plenty of water throughout the day to prevent dehydration, which can occur at doses higher than 10 g. Creatine also can cause weight gain.
Am I wasting money and endangering my health?
I don’t think so. A few years ago, one of the doctors at the local Huntington’s disease clinic told me to stay on the supplements, observing that the combination of substances might be helping to delay my HD onset. I inherited the same degree of mutation as my mother, but, at 54, have passed the age of her onset.
The yin-yang of supplements
Whether others in the HD community should take creatine and other supplements is an individual choice ideally made in consultation with a doctor.
During our interview, the Seattle-based Dr. Goodman reviewed the pros and cons of taking creatine.
She cautioned against taking high doses of the substance, because more serious side effects occur at higher dosage, and urged people to consult a physician before starting any supplement.
She stressed that people need to understand the “yin-yang” involved in the decision to take supplements.
“Yes, you want to take care of yourself,” Dr. Goodman said. If they do nothing else, supplements can at least furnish a “very important” placebo effect and the prospect of hope, she said.
The placebo effect is a “real” phenomenon, she observed. “If you could bottle it, it would be great.”
However, taking supplements also reminds asymptomatic gene carriers of their risk, she added.
More importantly, people’s use of supplements could also obstruct the path to other, potentially far more promising treatments, she said.
The benefits of supplements “need to be counterbalanced with the need to test promising new drugs, or we will never have better treatments for Huntington’s,” she explained.
Interfering with clinical trials?
“There are so many competing interests here,” Dr. Goodman continued. “We all want to believe that (creatine) is helpful, because it’s available, and we can take it, so why not do it, we say. This is what I said with HDDW trials. Well, yes, but it needs to be measured. Otherwise, we’re going to know nothing more than we did.”
“It is important for people to know that if they take these things, they can’t be in clinical trials at the same time. We deplete our clinical trial participant base, which is going to impede progress for finding better treatments. There’s the yin-yang. And people need to hear both.”
However, Dr. Goodman noted that individuals could do both: to become eligible for a clinical trial, individuals could clear the supplements out of their system so that they don’t interfere with the measurement of the tested drug’s effects, then resume the supplements after completing the trial.
I would stop taking my supplements in order to qualify for a trial, although until the most recent creatine trial (see below), practically every trial has targeted only symptomatic individuals.
Dr. Goodman underscored the need to treat creatine and all other supplements as “medicines.” Supplements should meet USP (U.S. Pharmacopeial Convention) standards, she added. The HDDW website contains information on supplement safety. Further information on supplements is available at Huntington’s Disease Lighthouse Families.
(I buy my creatine from my local GNC outlet but plan to search for a better grade of the product.)
(I buy my creatine from my local GNC outlet but plan to search for a better grade of the product.)
All drugs, including FDA-approved ones, produce side effects and can affect individuals differently, Dr. Goodman noted.
Regarding creatine, she concluded: “If it’s not watched closely, it may cause more harm than good.”
A historic trial
People in the HD community became excited about creatine as a potential treatment after Harvard University’s online news service on February 7 published an article titled “Nutritional supplement slows onset of Huntington’s.”
According to the article, a team of researchers based at the Harvard-affiliated Massachusetts General Hospital had finished a historic Phase II clinical trial that produced MRI scans showing evidence of the slowing of brain atrophy (shrinkage) in HD gene carriers who have yet to manifest the classic symptoms of the disorder. Sixty-four people took part.
Participants took up to 30 g of creatine per day.
According to Steven Hersch, M.D., Ph.D., the trial, called PRECREST (Creatine Safety and Tolerability in Premanifest HD), was a “huge step” for three reasons – including its impact on a separate creatine trial for symptomatic patients called CREST-E (Creatine Safety, Tolerability, and Efficacy in Huntington’s Disease)
“One, it’s the first therapeutic trial that has tried doing prevention,” Dr. Hersch, the study’s senior author and a long-time HD researcher, said in a February 11 phone interview. “Two, because we created a design that let anybody participate who’s at 50% risk, as well as those who have tested positive. And three, the imaging finding increases the probability that CREST-E will show a clinical benefit.”
Dr. Steven Hersch (photo from HDSA website)
Currently in progress and still recruiting participants, CREST-E is a phase III trial – the final step before drug approval (click here to learn how to enroll).
The PRECREST administrators recruited untested at-risk individuals who were then tested for the purposes of the trial as well as individuals who already knew that they have the HD mutation. However, those who entered the study untested did not receive their results, which were only known to the statistician. Thus, they avoided the potentially traumatic psychological aftermath and remained protected from genetic discrimination.
“The ethical challenges for those recruiting and conducting trials include how to accommodate nontested at-risk individuals while preserving a noncoercive choice regarding genetic testing,” states an editorial about PRECREST in the March 2014 issue of the prestigious journal Neurology, adding that “unequivocal changes” occur in the brain of presymptomatic individuals “15 to 20 years before conventional clinic-based diagnosis.” An article on PRECREST by Dr. Hersch, lead author Herminia D. Rosas, M.D., and nine other collaborators appears in the same issue.
For these and other reasons, 90 percent of at-risk individuals choose not to test, Dr. Hersch explained.
The MRI changes and other data from PRECREST will eventually be assessed in CREST-E, Dr. Hersch explained. CREST-E is also doing MRI imaging. With nearly 600 participants so far, it will be large enough to show whether the benefits shown in PRECREST images correspond to a significant slowing of HD.
Avoiding false hopes
As with many news articles about clinical trials and other scientific experiments, the Harvard report’s headline, which claimed the supplement slowed the onset of HD, inaccurately reflected the researchers’ results as reported in the actual scientific article.
“While slowed atrophy suggests that creatine could slow preclinical progression, the potential clinical impact of these findings on delaying the onset of HD is unknown and must be defined by an efficacy study designed to measure it,” the Neurology article states.
Nor can the public buy the high-quality creatine used in the study, as it’s prepared specially for clinical trials.
“I don’t want people to take from this study that they ought to go running out and take a bunch of creatine or take it at these doses,” said Dr. Hersch. “Even though the imaging benefit is very exciting, we don’t know what it means clinically. It doesn’t provide the evidence that would lead me to recommend that people take it. The high doses that we used should also not be used without medical supervision.”
As noted in the Neurology article, some PRECREST participants suffered stomach upset and diarrhea caused by the creatine. About a dozen people had to drop out of the study.
Regarding the study’s clinical significance, Dr. Goodman offered an assessment similar to that of Dr. Hersch.
The widely read HD research website HDBuzz.net also weighed in.
“How much hope and how my hype?” an HDBuzz article asked. While recognizing the importance of the study, it pointed out that the causes and effects of the slowed shrinkage in the brains of the PRECREST participants need further study.
“It’s possible that creatine causes HD brain cells to bulge or swell without making them healthier,” it states. “Swelling like that could produce false optimism and might even be harmful. That’s not something this trial can tell us either way, because the patients weren’t followed long enough to see whether creatine treatment delayed the onset of symptoms.”
“The participants in PRECREST who took creatine but did not have the HD mutation did not experience any brain swelling, so this is an unlikely explanation for our findings,” said Dr. Hersch. “Including and treating these subjects was very unusual. However, we did so to allow us to answer questions like this.”
Awaiting the Holy Grail
“HD researchers face a major challenge in finding a treatment for the pre-manifest,” I wrote in 2011. “It’s really the Holy Grail not only for HD, but also for other neurological diseases such as Alzheimer’s in which brain damage occurs many years before symptoms appear. Ideally, researchers want to design medications that will completely prevent these diseases.”
The Neurology editorial used the term “Holy Grail,” too, in noting how the PRESCREST study “investigates a potentially neuroprotective agent designed to delay disease onset.”
The word “potentially” is key.
As Dr. Hersch explained, the PRECREST findings about slower shrinkage “suggest” that creatine provides a benefit, but they don’t permit researchers to say anything about delayed onset of symptoms in presymptomatic individuals or a longer lifespan for patients.
It remains for the CREST-E Phase III trial to produce similar brain scan results – and an actual effect on symptoms.
“If CREST-E shows efficacy in slowing down the disease in people who are symptomatic, I would think that most people would think that you may be slowing down the disease in people who aren’t symptomatic yet as well,” he said.
Until treatments become available, presymptomatic gene carriers like me will continue to face the extremely difficult decision about whether to take supplements.
I’m grasping at creatine and other supplements in the hopes of delaying onset until researchers succeed.
I’m grasping at creatine and other supplements in the hopes of delaying onset until researchers succeed.
Wednesday, February 05, 2014
The knowledge that I carry the Huntington’s disease genetic mutation and will inevitably develop devastating, ultimately deadly symptoms has led me to intensify my search for the meaning of life, especially after the death of my mother from HD eight years ago this month.
Dr. Martha Nance (photo from HDSA website)
As a historian tracking neuroscience developments and the quest for an HD treatment, I am also deeply interested in the nature of the mind and consciousness. This growing field of inquiry is full of new insights and challenges.
In 2010, I wrote an article titled “God, Huntington’s disease, and the meaning of life,” in which I explored human evolution as the cause of the HD mutation but also the impetus towards greater consciousness of our species, a vast network of thinking beings.
HD may serve “a purpose as of yet undiscovered,” I wrote. “HD people have a huge cross to carry, but they should see their lives as part of the evolutionary surge towards a better life for all.”
I saw that thought partially confirmed in Brazil last September at the sixth World Congress on Huntington’s Disease, where renowned HD researcher Dr. Elena Cattaneo noted that the normal huntingtin gene, present in all humans and many other species, has a “social function, because it brings cells together…. Huntingtin is a good gene.”
Dr. Cattaneo offered an insight from a study of 300 normal brains: the greater the expansion of the huntingtin gene’s DNA (HD happens when the expansion is too great), the greater the amount of gray matter, or neurons, and therefore the larger and potentially more complex the circuitry of those brains. (Click here to watch Dr. Cattaneo’s presentation.)
Thus, because brain enlargement has played a key role in human evolution, the huntingtin gene might have had a part in the creation of human intelligence.
In my 2010 article, I also explored the oft-denied nexus between faith and science and the centrality of consciousness in the human experience by analyzing the life and writings of the so-called Catholic Darwin, the Jesuit paleontologist-priest Pierre Teilhard de Chardin.
In other articles, I have described how faith has given me the courage to confront the many challenges posed by HD.
An intriguing title
A large part of my focus on spirituality involves its effectiveness as a coping mechanism.
Last year, I augmented my morning meditation with a reading from Living Faith: Daily Catholic Devotions. Based on Biblical passages, the practical spiritual advice offered in this booklet helps me focus on meeting life’s challenges and becoming a better person.
Like many believers, however, I haven’t thought much about heaven and the afterlife – until last month a book title flashed across my TV screen and intrigued me with its seemingly incongruous combination of two words: “heaven” and “neurosurgeon.”
I felt moved to almost immediately download onto my Kindle Dr. Eben Alexander III’s account of his near-death experience (NDE) and purported encounter with God, the bestseller Proof of Heaven: A Neurosurgeon’s Journey into the Afterlife.
I knew almost nothing about NDEs other than what I glimpsed on TV programs about them over the years, but now that a neurosurgeon had experienced one and written about it, I felt the need to take the matter more seriously.
Because of my HD advocacy, I have delved into the world of neuroscience research, where scientists seek to explain phenomena such as NDEs purely in terms of the brain. Many scientists reject the supernatural, although notable exceptions do exist such as Dr. Francis Collins, the head of the National Institutes of Health and one of the individuals responsible for the discovery of the huntingtin gene.
Quite frankly, thanks in part to the intellectual rigor of both believing and non-believing scientists as well as my own experience as an academic and historian, I have also learned to keep an open mind with regard to practically any question or mystery.
As an HD advocate, I was also anxious to learn what Dr. Alexander might have to say about the brain and disease.
I had another, very important reason to read Proof of Heaven. Seeing a title that hinted at the existence of scientific proof for heaven fulfilled a growing desire for hope stirred in me by the approach of old age and especially the inevitable onset of HD.
Discovering the soul
According to Dr. Alexander, he had lain in a coma for a week, his brain under a severe attack from an untreatable, unique form of meningitis. He should have died, but, in the words of one of the attending physicians cited in the book, staged a miraculous recovery.
Dr. Alexander claims that, during his time in coma, he was transported to another realm, where he encountered a kind of guardian angel and learned truths about the universe and the overwhelming power of love. He explains that he found many of those truths extremely difficult to describe in the language of earthly existence.
Once a typical, scientifically oriented skeptic about the spiritual dimension, Alexander became a man of deep faith committed to revealing the significance of NDEs.
Dr. Eben Alexander III (photo from author's website)
“Science – the science to which I’ve devoted so much of my life – doesn’t contradict what I learned up there,” Dr. Alexander writes. “But far, far too many people believe it does, because certain members of the scientific community, who are pledged to the materialist worldview, have insisted again and again that science and spirituality cannot coexist. They are mistaken….
“In fact, I feel confident in saying that, while I didn’t even know the term at the time, while in the Gateway and in the Core (heaven), I was actually ‘doing science.’ Science that relied on the truest and most sophisticated tool for scientific research that we possess: Consciousness itself.”
According to Dr. Alexander, during his NDE he had discovered the existence of his own soul – a form of consciousness outside of the body and the brain-generated mind.
He summed up the message from heaven: “Love is, without a doubt, the basis of everything. Not some abstract, hard-to-fathom kind of love but the day-to-day kind that everyone knows—the kind of love we feel when we look at our spouse and our children, or even our animals. In its purest and most powerful form, this love is not jealous or selfish, but unconditional.”
A convincing yet disappointing story
As I read Dr. Alexander’s account and gained hope for the future, I became ecstatic. Finally, I thought, I can truly look forward to the afterlife! I will continue to fight for the cure of HD, but I don’t have to worry about dying! Finally, someone has nailed down proof of heaven!
As I read the book, however, I also felt disappointed at how little Dr. Alexander could say about God and heaven, because of the admitted human limitations in describing the experience.
At about 200 pages, the book also struck me as very short for a topic of the utmost importance.
In addition, his description of the cosmos seemed to echo scientific hypotheses put forth on earth. Of course, in reality scientific ideas and divine revelation about the cosmos should coincide. However, I wondered whether his perception was a true insight from God or simply a projection of his professed love for physics and cosmology.
Despite these criticisms, I found the book highly convincing.
But then I thought some more and dug more deeply.
Jesus was the son of a carpenter. Eben Alexander III is a neurosurgeon who taught many years at Harvard University.
Here on earth, Dr. Alexander’s status validates the idea of the NDE. People crave such validation when considering an idea – or buying a book – even though the idea could stand on its own when carefully considered.
Wanting to see what others thought of Dr. Alexander’s book, I discovered the expected response from some in the scientific community. An article in Scientific American, for instance, concluded that Dr. Alexander’s experience was “proof of hallucination, not heaven.”
Esquire magazine contributing editor Luke Dittrich wrote a long, unflattering expose of Dr. Alexander’s departure from Harvard, his status as a defendant in a series of malpractice lawsuits, the suspension of his operating privileges, publisher Simon & Schuster’s manipulation of and shortening of the original manuscript, and inaccuracies in Proof of Heaven. Dittrich describes Dr. Alexander as a self-proclaimed “prophet,” a man in reality seeking in the time-honored American tradition to remake himself in the wake of legal and professional difficulties.
Dr. Alexander’s website contains a rebuttal to the piece by Esquire, which it accuses of “journalistic malpractice.”
In Proof of Heaven, Dr. Alexander states that material success became unimportant to him after his glimpse of the afterlife. Aside from some bracelets for sale with half the proceeds intended for charity, I could find nothing about the destination of the presumably millions of dollars in royalties Dr. Alexander has earned from sales estimated in mid-2013 at nearly two million copies.
For me, the jury is still out on Dr. Alexander’s story.
The larger context
Ultimately, only God would know exactly what happened to Dr. Alexander during his near-death experience.
For me, the book is important because it contributes to the effort to create a synthesis of faith and science.
Proof of Heaven also rekindled my interest in the afterlife and introduced me to the seriousness and breadth of NDEs. Whether one believes in the soul or not, NDEs can and should be studied in the larger context of understanding how the brain and consciousness work.
Seeing patients as persons
While I can’t judge the veracity of Dr. Alexander’s NDE, reading his book made me reflect on my mother’s final days in January and February 2006. Proof of Heaven has also helped me come to a fuller and more compassionate understanding of Huntington’s disease patients.
My mother struggled with HD for nearly two decades.
In the HD community, because we need to build awareness, we are so used to emphasizing the devastation of the disease. The devastation is real. But there is more to the person. Some readers of this blog have reminded me that I have not recognized this.
I regret not having the emotional strength and presence of mind to have seen my mother more as a person, with a consciousness and perhaps even a soul, and less as a mind and body racked by the symptoms of Huntingon’s. Because I had tested positive for the mutation, “my fear of HD kept me from sitting down with her and attempting to converse,” I wrote in a blog entry titled “Saying good-bye to Mom.”
My mother’s astonishing gesture
Only near the end of her life did I really perceive that a powerful life force continued in my mother.
The first evidence of this came in a phone call from my California home to my mom’s nursing home in suburban Cleveland. I wrote: “The nurse bluntly revealed an emotional bombshell: Mom had said that she was ‘not afraid to die.’”
I was struck by that revelation, because for years she had not spoken in any intelligent manner.
Looking back on our good-bye, I now see more clearly the increased presence of her consciousness and the degree of her “cogency” (Dr. Alexander’s word to describe another situation) as she prepared to die. Demented elderly people on their deathbed sometimes achieve an “astonishing clarity of mind” known as “terminal lucidity,” he notes.
I wrote: We then wheeled Mom to a reception room with more comfortable furniture. There we took some pictures.
Then I asked my sister and father to leave the room briefly so that I could say my final farewell to Mom.
I told Mom that I was saying goodbye and that I might not see her again. I told her what an excellent mother she had been, and I apologized for all the times that I had not been the best of sons.
I looked her in the eyes.
I hugged and kissed her.
I put her hand on top of mine on top of the tray that was part of her special chair.
I told her I loved her. She said she loved me too.
In the past couple days Mom had not moved her hands at all. When we asked her to point out things, she had been unresponsive. But then, inexplicably, Mom started to move her left hand upwards. Slowly it moved until it touched my face.
I took her hand and pressed it against my face.
Miraculously we had touched each other’s hearts.
I felt a warm glow of love and relief.
A wonderful gift
Wanting to know a Huntington’s disease specialist’s assessment of my mother’s cogency, I asked Dr. Martha Nance, a neurologist and the director of the Huntington’s Disease Society of America Center of Excellence at Hennepin County Medical Center in Minneapolis, to comment via e-mail.
“I don’t know what to say about consciousness independent of mind and body,” Dr. Nance responded. “My work and personal worlds do not operate on that plane, if there is such a plane of existence.”
However, Dr. Nance has heard extraordinary stories about and from patients suffering from neurological disorders, like the woman dying from progressive supranuclear palsy who on her last day had a vodka martini with her husband and their best friend from college days.
As Dr. Nance told it, the patient “raised her hand that hadn’t moved in a week, and took her own glass. She then raised the glass up in the air – a toast to life – and put it to her lips. She died quietly that night.”
What causes these moments of lucidity? Science hasn’t yet found the answer, Dr. Nance replied.
“If you play your cards right, this kind of thing can and does happen,” Dr. Nance wrote. “The point is, if you acknowledge the coming of death, perhaps even embrace it, that it can be at least peaceful, and sometimes beautiful. And strange moments of lucidity or awareness shortly before the final moment do seem to happen (sometimes, not always) – and are a wonderful gift to the family when they do.”