LBD Loving & Living Inside Disease That Contributed To Robin Williams’ Death

Inside the disease that contributed to Robin Williams’ death.

By HuffPost

Pat Snyder tried 12 doctors over seven years before she found one who could properly treat her husband, John.

John Snyder began experiencing lapses in memory, a change in personality and muscle rigidity in 2000, when he was 61; he’d been suffering from severely disrupted sleep since his 40s.

After diagnostic twists and turns that included suggestions like thyroid issues, low testosterone, depression and blood pressure problems, his 11th doctor finally diagnosed him in 2007 with Lewy body dementia, a progressive brain disease that’s commonly mistaken for Alzheimer’s and Parkinson’s disease.

But then the doctor refused to treat John, saying that he was afraid to make a mistake.

“Some doctors don’t treat it because they don’t know how to treat it,” Pat Snyder told HuffPost from her porch in Forest City, North Carolina.

“That’s part of the dilemma — it’s a very common disease, but it can be very unknown.”

Doctors describe Lewy body dementia as “the most common disease you’ve never heard of,” citing symptoms like visual hallucinations, sleep disorder, muscle rigidity and dementia that are easily mistaken for other conditions.

The National Institutes of Health estimates that more than one million people in the U.S. have LBD;  the Lewy Body Dementia Association pegs it at 1.4 million.

Like Alzheimer’s and Parkinson’s, there is no cure — only treatment — for LBD.

Beloved actor Robin Williams had the disease, though that was only confirmed after his death.

Williams’ widow, Susan, described the LBD as a “nightmare” that eventually took her husband’s life in a recent interview with ABC.

Like John Snyder, Williams reportedly experienced a year of baffling and seemingly unconnected symptoms before his doctors tentatively arrived at a diagnosis for Parkinson’s Disease.

“Her story is our story,” Snyder said. “You’re playing whack-a-mole, getting symptoms you don’t understand [and] you’re going to doctors who don’t understand, don’t diagnose it.

I am thrilled that she has been willing to step out and tell the story and make America more aware of this, because it’s very common.”

“You’re playing whack-a-mole, getting symptoms you don’t understand [and] you’re going to doctors who don’t understand”. Pat Snyder

Thankfully, John’s 12th doctor, Daniel Kaufer of the University of North Carolina School of Medicine, knew exactly how to approach his care.

Because of the treatment regimen Kaufer recommended, the Snyders were able to extend the milder “early” stage of LBD for five years before John’s mind and body began giving way to the more severe aspects of the disease.

Kaufer was different from the other doctors, Snyder said, because he gave the couple hope that certain LBD symptoms could be treated, with the goal of preserving as much of John’s “personhood” as possible for as long as possible.

John died five days ago on Nov. 5, eight years after his diagnosis.

It was precious time he was able to spend with his wife, their two children and four grandsons.

Strange and confusing symptoms

John’s symptoms began in 2000, soon after surgery to remove his thyroid.

Because he’d just had an operation, his doctors chalked some symptoms up to hormone imbalances related to the gland’s removal.

But in retrospect, said Snyder, the symptoms of LBD started long before his surgery — about 20 years before.

Like many people with LBD, John developed REM sleep behavior disorder, a condition in which sleep becomes violent and disruptive.

His sleeping body began acting out the fantastical dreams he was having — like being a pirate in a sword fight on a ship, or a fleeing soldier in a world war — and the sleep-movements would knock him out of bed.

Other times he would laugh in his sleep.

As the disease progressed, John’s body stiffened up, and he began walking with a shuffle.

The highly intelligent, inquisitive trial lawyer started off his days “sharp as a tack” and would end them lost in a foggy confusion, Snyder said.

He started to withdraw from family gatherings, sitting alone in a chair when previously he would have been right in the middle of the party.

The scariest moment for Snyder came when John called police to deal with a bear on their property.

It turned out to be a tree stump.

“That’s when I had a meltdown,” Snyder recalled. “I was like, ‘Oh my goodness, you’re working with these police and telling them you saw a bear, and there’s no bear!'”

This confusing set of symptoms is typical of LBD, explained Dr. Joe Quinn of the Parkinson’s Disease and Movement Disorders program at Oregon Health and Science University.

It’s why doctors and even some brain experts struggle to initially diagnose the disease, named for abnormal packets of protein called Lewy bodies that appear in the brain.

There is no cure, but there is treatment

Because there’s no blood analysis or brain scan to test for the condition, physical confirmation comes only in death, when doctors performing an autopsy analyze slivers of brain under a microscope.

In this way, too, LBD is very similar to Alzheimer’s disease, which is confirmed in autopsy by finding plaques and tangles in the brain, and to Parkinson’s disease, which is confirmed in autopsy by Lewy bodies in the areas of the brain that affect movement.

While a patient lives, however, clinicians are left to sort through a mess of symptoms that might seem like Parkinson’s (muscle rigidity, which Quinn called “Parkinson-ism”) or Alzheimer’s disease (dementia).

“If you have the combination of Parkinson-ism and visual hallucinations, and the person is having trouble thinking clearly, that’s an instance where you make a diagnosis of Lewy body dementia with great confidence”. Dr. Joe Quinn

Quinn sometimes explains LBD symptoms to others as a blend of both diseases: Patients will struggle to move, and may also suffer mentally.

He himself has initially diagnosed patients with Alzheimer’s, only to revise that diagnosis to Lewy body dementia a year later when more symptoms come to light.

One major tell for LBD is visual hallucinations that aren’t caused by medication or pre-existing mental illness.

“If you have the combination of Parkinson-ism and visual hallucinations, and the person is having trouble thinking clearly, that’s an instance where you make a diagnosis of Lewy body dementia with great confidence,” he said.

But for people like John, whose visual hallucinations didn’t come until much later on in life, that Lewy body diagnosis can be a long time coming.

Often, as Snyder discovered, educating doctors about LBD fell to her as the caregiver.

For instance, she had to monitor medications because many doctors didn’t realize that common antipsychotics prescribed for the hallucinations are actually very dangerous for people with LBD.

“It’s just a very complex disease to treat, and there are very medical people who just don’t have an understanding,” she said. “And that causes huge stress for caregivers.”

As John’s disease progressed, Snyder slowly transformed into a de facto expert on the disease.

She did her own research on the brain and figured out how to unlock parts of John’s mind that were slipping away to dementia.

When he started to lose his ability to speak, she learned that parts of the brain that control singing can escape the brain damage from certain diseases.

She had some success drawing John’s words out of him by singing the “Happy Birthday” song, she said. And she worked hard to keep positive and proactive about John’s care, which she credits for the five years he managed to remain suspended in the earliest stages of LBD.

Brain scans could one day provide a more accurate diagnosis

Hope for a better diagnosis process may be on the horizon, said Quinn. Scientists have made progress with PET scans to identify plaques in the brain of a living patient who has Alzheimer’s disease, and Quinn hopes that parallel efforts to create brain scans for Lewy bodies can one day help neurologists diagnose LBD early and with certainty.

Until that day, Snyder hopes that going public with her family’s experience — and the Williams family speaking of theirs — can raise awareness and put the condition front and center for doctors who may encounter this set of puzzling symptoms in a future patient.

In 2012, she self-published a book about her experience, and for a year has moderated an online support group for spousal caregivers of LBD.

Indeed, when HuffPost reached Snyder by phone for this story, John had died only the night before, but she insisted on maintaining the interview to get the word out about LBD.

For now, though, she’s taking a moment to savor the 41 years of marriage she enjoyed with John, and is surrounded by family in their home.

Because she managed to stay so close to her husband throughout the progression of his disease, she was able glimpse moments of his “personhood,” as she called it — jokes, smiles and a “twinkle in his eyes” — to the very end.

“He told me two days ago that he loved me so very much, and he said it so clearly with so much expression,” she said.

“And just so you know, he was one sweet guy, and that showed to the very end.”

Voluntary Assisted Dying One Step Closer Australia

Voluntary assisted dying is now one step closer to becoming a reality in Victoria, after the bill was passed by in the lower house.

After a 24 hour meeting – where MPs had a debate overnight that ran well into Friday morning – the Voluntary Assisted Dying Bill passed 47 votes to 37, after a conscience vote.

The decision came just after 11am on Friday, with the sitting over the bill beginning on Thursday at 9.30am.

The marathon meeting went throughout the night and MPs only took two short 30-minute breaks during the whole session.

“My colleagues and I are very proud,” Premier Daniel Andrews said on the steps of Parliament.

“We have taken a very big step towards giving many, many Victorians the dignity and compassion they have been denied for far too long,” he said.

“This is extraordinary and public life is about getting the big and important things done and this is big and it’s very, very important.”

Those in support of the bill included the majority of Labor MPs two Greens, two independents and a small number of Coalition MPs

However, this isn’t the end of the line for Assisted Dying laws, as the bill now has to be passed by the 40-member Upper House.

It is expected that this will occur in a fortnight.

“We still have a way to go,” said Andrews.

“I don’t take anything for granted there … but this is needed and the time has come to write this into law”.

Should the laws pass, Victoria would be the first state in Australia to offer an assisted dying regime.

It would mean that those who are suffering from “a serious and incurable condition and at the end of their life” will be allowed to seek voluntary euthanasia. However, the law won’t come into effect until 2019.

It is also required that the person is over 18 years of age, a Victorian resident and an Australian citizen.

Only those with decision-making capacity and are at the end stages of their life are qualified for assisted death.

Previously against assisted dying, Andrews views changed following the death of his own father after a long battle with cancer.

Andrews told Fairfax media that he hoped “that this debate is conducted in the spirit of respect. My own conscience tells me that this is the change that needs to be made.”

Health Minister Jill Hennessy is also supporting the bill, with her own personal family tragedy shaping her views – her mother’s life long battle with multiple sclerosis.

Andrews praised Hennessy for championing the bill, while other colleagues congratulated Hennessy for her work guiding the legislation through the lower house.

Euthanasia advocate Andrew Denton was among members of the public in Parliament to watch the vote.

Cold Hard Facts: Life Before Death With Lewy Body Dementia Australia

Trevor Crosby has Lewy Body dementia.

But he wants to show people, that “you can live well with dementia”.

Lewy Body dementia is one of the lesser knows kinds of Dementia, and is also known as DLB.

Abnormal clumps of protein, known as Lewy bodies, develop in the main part of the brain, the cortex, which results in dementia.

Lewy bodies can only be identified by examination of brain tissue after death, so there is no way of testing their presence to confirm a definitive diagnosis.

At Dementia Australia’s “Be the change” Conference, Trevor told his story.

“I was 64 in 2014 when I was initially diagnosed with Lewy Body dementia. I had been a very fit, active contributing member to society,” Trevor said.

“My wife and I ran a farm in rural NSW, along with two other businesses, for more than three decades.”

“I was a long-serving member of a committee that manages water resources in Central NSW, was an active member of my local golf club, serving as President of the club for three years, was a keen supporter of the Primary Club in rural NSW for many years, and much more.”

“Having Jill, my wife, beside me helped tremendously in handling this news. I became strong enough to ask the hard questions, ‘how long do I have to live’, and ‘how many quality years?’”

“The answer didn’t please me, but I now believe it is possible to make changes to your life that can help you to live well while still living with this dreadful disease.”

Trevor then shared a story of the father of one of his friends, Viv – her father died from complications of Lewy Body Dementia by choking on his food.

“He had not been diagnosed till very late in the progression of his disease and the family were unable to afford the proper choices he and they deserved.”

“Antipsychotics had been administered to him in heavy doses and he spent a good time of his last years bed ridden due to Parkinson’s disease, but Lewy Body dementia, was not mentioned.”

Viv’s dad died in a short period of time – he had not been diagnosed early enough.

“No one knew he had Lewy Bodies till it was too late. If Viv and her father had known earlier something could have been done to improve his quality of life he may not have died so quickly.”

“Viv’s dad and her family were not offered options that might have changed his life and care, I am determined to find options that will change mine.”

“Although things have no doubt changed for the better in 10 years we still have a long way to go. Amongst other suggestions my specialist advised me to consider enrolling in the Living with memory loss program with Alzheimer’s NSW, now Dementia Australia.”

“This suggestion was a worthy one which Jill and I followed but I needed more. I was not going down without a fight and it was clear to me I needed to be proactive in making changes in my life that would improve my situation.”

“Almost every part of my life has changed in three short years of living with a Lewy Body dementia diagnosis mostly for the better.”

“Sure, the early big hit momentarily knocked us for six, however, the 156 weeks of rewarding advocacy work with Dementia Australia along with pleasurable, entertaining activities and importantly having family and friends new and old treat me as if it’s “business as usual” allows me to live a fulfilling, meaningful and enjoyable life.”

What Trevor Believes Helped Him “Live Well”

“First acceptance, acceptance that something is wrong and seeking support. I found doing Alzheimer’s Australia NSW’s, now Dementia Australia, Living with Dementia course to be very beneficial.”

“Second getting a diagnosis. I was fortunate to have obtained an early diagnosis after experiencing early cognitive problems, and without an early diagnosis the benefits and the quality of life I have since attained would not have been realised to their potential. I strongly recommend that anyone experiencing cognitive issues get it checked out as soon as possible.”

“The medication I was prescribed by my neurologist has helped lead to clearer thinking, better memory retention, better social ability and more”

“Next, positive thinking which can sometimes be hard, but I believe this and recognition that tomorrow is as far ahead as we need to be, today and tomorrow are what it is all about – has also been a vital component to my ongoing wellbeing.”

“Finally, getting on with life and occupying myself fully with activities I enjoy. This means spending time with my family, engaging in cultural experiences, participating in regular sport and exercise activities and also ongoing Alzheimer’s advocacy work.”

Trevor’s Active Life

“I participate in a wide range of activities, including yoga, cricket, sailing, golf, bridge and dementia advocacy work.”

“I have found yoga to be one of the most valuable activities I’ve experienced in my fight against dementia. An hour of yoga at any level can improve your spirit, your inner feeling of peace, your flexibility and fitness.”

“Yoga brings out the best in me, has introduced me to friendly and compassionate instructors who have focused on my wellbeing and classmates who have provided subtle and sincere support.”

“In the words of my yoga instructor, ‘Trevor has built physical strength and flexibility during this time, but also strength of will and resilience’.”

“‘I know him to be benefiting from the support of the group setting, and the breath and movement practices which anchor the spirit into the body, and calm the mind, allowing him to arrive at acceptance of the changes in his world.”

“At 67 years of age, I am still playing cricket! I have a lifelong passion for the sport and continue to enjoy participating. I recently attended a reunion of my 1970 under 23s comp-winning side, and am the only member still playing.”

“I have signed up for the Primary Club Oldies Cricket Teams – this will be my 59th season, hopefully one where my contribution to the team will continue to be a positive one.”

“I also crew weekly on good friend’s 10m yacht, Sydney Harbour is the backdrop and all six of us on board never cease wondering how lucky we are soaking up the atmosphere that this spectacular harbour exudes.”

“What sailing does for me is it gives me self-confidence, improves co-ordination and balance and introduces me to a new circle of friends.”

“Three times a week, I play golf. While out on the course I feel happy, sharing the camaraderie of fellow golfers.”

“I don’t think about my diagnosis, unless there is a joke to be made about dementia and my ability to score correctly.”

“I decided to also exercise my mind whenever possible. So just over two years ago, with the desire to give my brain the opportunity to broaden its reach and have an activity that doesn’t require physical involvement (in case I am less mobile in later years), I began taking Bridge lessons and playing socially, which I have found to be both stimulating and fun. Dementia and bridge: who’d have thought!”

“On the scale of activities that have helped revive my quality of life so far, spending time with my family rate number one – they have been able to absorb the bad news and at the same time keep a cheerful facade.”

“An enormous plus – when I think family, I think happy and this thought process helps keeps out negative feelings.”

“My message today is that like me you can be the change by living well and changing the face of dementia in the broader community…you can make the change to find the support you need and to do the things you enjoy that make your life meaningful and enjoyable.”

“Let me remind everyone with a quote from Richard Gere ‘none of us are getting out of here alive so live the day as if it was your last’.”

Beware: Dementia Patients Can Wander Away From Home

AgingCare

Wandering is one of the many new behaviors that occur in dementia patients. I hear sometimes,

“My mom won’t ever wander; I am with her 24/7.”

The thing about wandering is, if your loved one hasn’t done this, what you should say is,

“They haven’t done it yet.”

My take on this is the person who is wandering is trying to get somewhere.

They could be trying to get away from where they are, or they could be trying to get somewhere that is familiar to them.

The bottom line is they want to feel safe. If they do not feel safe where they are, the chances of them wandering increase tenfold at any given moment.

Making sure they feel safe and secure is the key. The slightest thing can trigger a sense of danger in a dementia patient.

The volume on the TV being too loud, the sound of a train in the middle of the night, an alarm going off, the phone ringing—all of these are things we hear on a daily basis.

But when you have dementia, any of these could easily startle you.

All you want to do is get away from that noise.

When a patient is found after they have been wandering, you will often hear them say they were trying to get home.

Their idea of home is not what you would think.

It could be their childhood home that they lived in long before you were even born.

Which you, as their child, may have no idea where it is located.

It could be in an entirely different city.

Or, by some miracle, they could find the home they were looking for and not even recognize it.

I tell people all the time, never take for granted what your loved one says or does. They could complain of hunger and have just finished a meal. They could say they can’t sleep, but have just woken up from a full night’s rest.

They could tell you that someone or something is following them. You know all of these things are not correct, but to them, they are real as rain.

And if you do not do something to ease their fear, they will do what they can to escape their current situation and get to a safe place.

Remember, if your loved one has never wandered, you need to think, “They haven’t wandered yet.”

In my EMS and law enforcement careers, I have seen numerous patients just walk out of a facility that was deemed secure.

Dementia patients who want to get away from where they are get this idea in their head, and that is the only thing that matters to them.

They spend their entire day and night wanting to get out, whether it is their own home or a facility.

And, chances are, they will get out. I have heard of families putting locks on doors to keep their loved ones in. This in itself is dangerous.

If, God forbid, there was a fire, and in the chaos you are incapacitated by smoke inhalation, there is no way your loved one could get out of the house on their own.

I’m not a big fan of locking anyone in a house. However, I do recommend alarms.

You can buy alarms for when they get out of bed, when they open certain doors in the house, or even for every door.

You can purchase motion detectors to alert the caregiver of movement in the house during the night.

But, like I said, every facility I have been in for dementia patients has a security system of some sort. Most have locked doors that require a code to enter or leave.

All the other exits have alarms on them, yet patients still manage to get out.

They do because of one reason: human error.

Someone may have left a door ajar, or didn’t arm a door with the proper code. Or, for whatever reason, someone just wasn’t paying attention.

As a caregiver, you are required to watch your loved one 24/7.

They only need a moment to be out of your eyesight and be gone.

Has your child ever slipped away from you in a crowded environment, even if just for a moment?

That sick feeling you get in the pit of your stomach is exactly what it feels like when an elder you love wanders off.

If they do wander off, hopefully it’s not in the dead of winter, or they don’t have access to a vehicle.

I once located a man in his eighties who had crashed his truck through a steel gate into a private golf course at about three in the morning.

When I located him, he was still driving the truck around in circles.

He couldn’t (or didn’t know how to) stop it.

Thankfully, we got the vehicle stopped and attended to him.

He was from a town over 400 miles away and had been missing for more than eight hours.

To say his family was relieved was an understatement.

But the man himself was in a state of shock.

He knew no one, had no idea where he was, had no idea where he came from, and was visibly shaken by the whole ordeal.

It took his family five hours to get to the hospital where he was taken, and he was still in such a state he didn’t recognize them when they arrived.

This happens all the time with dementia patients.

It should never happen, but it does.

Devise a plan, and then have another for backup.

Take a picture of your loved one every morning with what they are wearing so, if by chance they do get out, you will have exactly what they look like and what they are wearing ready for the police instead of trying to rack your brain for answers.

A cell phone picture is perfect. It can be taken in a matter of seconds, but could end up saving your loved one’s life.

And, if your loved one should wander, call 911 immediately. Don’t waste precious time looking for them yourself. Get the authorities involved as soon as you can.

They have the necessary resources, technology and man power to search for them. If you look for your loved one for thirty minutes on your own, that is thirty minutes that they have to be out, traveling farther, and who knows in what direction.

Call 911 immediately. If they are found in the basement later, or just in the backyard, wherever, it’s better to have the authorities looking with you than to bring them in an hour after your loved one came up missing.

Take this wandering thing seriously.

It can be fatal.

And it is always traumatic to the patient and their family members.

World Dementia Council Global Care Statement

 

Statement on Importance of Care and Support

World Dementia Council

All persons affected by dementia – those living with
the diseases that cause it, their care partners, and their
family and friends – have a right to receive the highest
quality care and support possible to meet their needs.

They have the human right to be treated with dignity
and respect. And they are entitled to full and effective
participation and inclusion in society.

These rights transcend national boundaries and cultures.

Person-centered, high-quality care and support
should respond to the unique, individual needs of
each person and include rehabilitation and disability
support.

It should be delivered by well-trained
individuals, whether professionals or family and friend
care partners.

Such care and support can result in improved health
outcomes and quality of life, enhanced comfort, and
decreased stress for persons living with dementia.

For their care partners, it can enhance their health
and strengthen the informal support system. And, by
lessening the burden on health and long-term care
systems, it can help to lower costs.

Principles of High-Quality Care and Support

To ensure the right to high-quality care and support for people living with dementia and their care partners,

the following principles should guide the provision of care and support in all countries:

1. Individuals receive a timely and accurate diagnosis
– and are told of that diagnosis and its realistic
consequences. This is the gateway to making
informed personal life decisions and decisions about
medical treatment.

2. People living with dementia are entitled to respect
and dignity with full recognition that dementia in
no way diminishes the personhood of the individual
who has it.

3. Communities are inclusive of people living with
dementia, thus ensuring the opportunity for
participation and engagement by those living with
dementia, and empowering and enabling them to
remain in the community as long as possible.

4. Care is person- and relationship-centered.
Person-centered care is a philosophy of care
based on knowing the person, developing and
maintaining authentic relationships, providing
a supportive, culturally-sensitive environment
that includes opportunities for meaningful
engagement, and recognizing the person’s reality
and individual needs.

5. The provision of person-centered care is based on
continuous assessment and individualized care
planning designed to maximize independence,
develop effective strategies for communication,
minimize behavioral and psychological symptoms,
and identify available support for people living with
dementia and their care partners.

6. People living with dementia and their care partners
are involved as active participants in care planning
and decision making and have access to information
and support throughout the continuum of their
disease from diagnosis to end of life.

7. Medical and care professionals have adequate
knowledge of all aspects of dementia and work
across disciplines to ensure a holistic approach to
disease management. This will ensure that people
living with dementia are provided appropriate
medical care, psychosocial care, and disability
support – for both their dementia and their
co-morbid conditions – throughout the course of
the disease.

8. Care coordination and collaboration occurs
between all care providers, including medical and
allied health and social care professionals, health
systems, family care partners, paid caregivers,
community services, and volunteers. Governments,
non-governmental organizations (NGOs), and
patient advocacy groups have an important role
in building collaboration among care providers
and in monitoring and evaluating the care and
support provided.

Create your website with WordPress.com
Get started
%d bloggers like this: