User login
ATLANTA –
“With our medical team’s care, for the next 10 months we chased symptoms, but they were so elusive,” Mr. Williams’ widow, Susan Schneider Williams, said during a keynote address at the annual meeting of the American Neurological Association. “One hallmark of LBD is that symptoms appear and disappear randomly. The game whack-a-mole comes to mind. As soon as you think you are about to figure out a symptom, it disappears, and another one pops up.”
Mr. Williams’ medical team included one general physician, one neurologist, one motor specialist, two psychiatrists, one hypnotherapist, one physical trainer, and assorted alternative specialists. “We had been celebrating our second wedding anniversary when Robin started having gut discomfort,” Ms. Williams recalled. “He was tested for diverticulitis [but] the results came back negative. The pain eventually subsided but what was alarming was Robin’s reaction to it. He had a sudden and sustained spike in fear and anxiety unlike anything I’d seen before. By that point, we’d been by each other’s side long enough that I knew his normal baseline moods, fears, and anxieties. This was totally out of character, and I wondered privately: ‘Is my husband a hypochondriac?’ What I know now is that he was exhibiting a notable hallmark of LBD: new onset anxiety, sustained.” Lewy body disease is characterized by more than 40 symptoms, she continued, “and Robin experienced nearly all of them. He was particularly debilitated by fear, anxiety, delusions, paranoia, and as I came to find out later, hallucinations.”
The medical team continued running all sorts of tests, but everything kept came back negative, except for a very high cortisol count. By the late spring of 2014, however, Mr. Williams was diagnosed with Parkinson’s disease. “I was relieved to find out we finally had an answer, but I could tell, Robin was not buying it,” said Ms. Williams, who is a California-based fine artist, author, and brain health advocate. “The motor specialist said it was early and mild and that he’d be feeling better once he adjusted to the medications, [that] he had another 10 good years.”
In an attempt to treat the Parkinson’s and what was assumed to be depression, his care plan involved adjusting Parkinson’s medications, combined with an antidepressant. His physician also recommended a visit to the Dan Anderson Renewal Center in Minnesota, “for enhanced 12-step work to augment his sobriety,” Ms. Williams said. “The hope was this might help with fear and anxiety. Robin was clean and sober for 8 continuous years when he passed. I watched how he gained spiritually in so many ways from all the work he’d been doing, but his brain biology was going in the exact opposite direction. He tried desperately to join the parts of his heart, mind, and spirit, but his brain was pulling him apart. I felt like I was watching my husband disintegrate before my eyes, and there was nothing anyone could do about it. There came a day when we were getting ready to go to one of our dear friend’s birthday party. I came and saw Robin as he lay on our bed, imprisoned by fear and anxiety. Through tears, he pleaded, ‘I just want to reboot my brain!’ I promised him, ‘I know, honey. I swear we’re going to get to the bottom of this.’ ”
The couple was about a week away from choosing which neurocognitive testing facility to go to for further evaluation when Mr. Williams took his own life in his Paradise Cay, Calif., home on Aug. 11, 2014. “Robin was exhausted from the terror coming from his brain,” Ms. Williams said. “He took [his own life] before it could take any more of him.”
About 3 months later, the underlying cause of death was revealed: diffuse Lewy body dementia, “one of the worst cases they’d ever seen,” she said. “Because Robin’s disease pathway was extreme and unfolded the way it did, it highlights quite strikingly this disease spectrum. He had a perfusion of Lewy bodies, the essential underlying shared biology between Parkinson’s and Lewy body disease, scattered throughout his entire brain and brain stem.” She added that her husband’s prior history of depression from earlier in life “added to the challenge of getting a proper diagnosis. That single symptom of depression was being treated as its own illness, rather than part of the larger neurocognitive disease. It seems that one of the biggest challenges to getting an accurate diagnosis is that LBD symptoms have tremendous crossover with normal human psychology and behavior, mood, cognition and sleep issues. All of us experience fear, stress, anxiety, paranoia, trouble sleeping, mild depression, and other issues from time to time. We would hardly be human if we didn’t. The challenge of LBD is seeing the giant constellation that it is, rather than just a few of its stars.”
In early 2016, Ms. Williams received the “Commitment to Cures Award” from American Brain Foundation, honoring work she’s done raising awareness for Lewy body disease since her husband’s death. “The day I accepted that award and told our story to a room full of neurologists, my path was forever changed,” she said. “The ABF’s mission of connecting donors to researchers and curing brain disease was an alignment with my mission and hope.” She currently serves as vice chair of the ABF’s board of directors.
“From my own research and from the myriad of letters and information that has come to me, I have distilled what I think are the top three overlooked ideas in this disease space,” Ms. Williams said. “1. Diagnosis: The norm seems to be misdiagnosis, switched diagnosis, or no diagnosis at all. 2. Symptoms: They are being treated independently, apart from the neurological disorder. 3. Suicides: If more autopsies were done, more suicides would be attributed to this disease.”
She concluded her address by reflecting on the impact of her husband’s death has had in bringing an international spotlight to LBD. “When I meet individuals who have lost someone they loved to LBD, I see the pain in their eyes, but I hear the determination in their voice as they chart their own course toward making a difference,” Ms. Williams said. “I have been blessed to learn over and over again that I am not alone. I believe that Robin’s death in this battle against these diseases holds a profound purpose. There was tremendous power in what he suffered, and I saw that power up close. I’m here doing all that I can to see that power transformed into something good.”
ATLANTA –
“With our medical team’s care, for the next 10 months we chased symptoms, but they were so elusive,” Mr. Williams’ widow, Susan Schneider Williams, said during a keynote address at the annual meeting of the American Neurological Association. “One hallmark of LBD is that symptoms appear and disappear randomly. The game whack-a-mole comes to mind. As soon as you think you are about to figure out a symptom, it disappears, and another one pops up.”
Mr. Williams’ medical team included one general physician, one neurologist, one motor specialist, two psychiatrists, one hypnotherapist, one physical trainer, and assorted alternative specialists. “We had been celebrating our second wedding anniversary when Robin started having gut discomfort,” Ms. Williams recalled. “He was tested for diverticulitis [but] the results came back negative. The pain eventually subsided but what was alarming was Robin’s reaction to it. He had a sudden and sustained spike in fear and anxiety unlike anything I’d seen before. By that point, we’d been by each other’s side long enough that I knew his normal baseline moods, fears, and anxieties. This was totally out of character, and I wondered privately: ‘Is my husband a hypochondriac?’ What I know now is that he was exhibiting a notable hallmark of LBD: new onset anxiety, sustained.” Lewy body disease is characterized by more than 40 symptoms, she continued, “and Robin experienced nearly all of them. He was particularly debilitated by fear, anxiety, delusions, paranoia, and as I came to find out later, hallucinations.”
The medical team continued running all sorts of tests, but everything kept came back negative, except for a very high cortisol count. By the late spring of 2014, however, Mr. Williams was diagnosed with Parkinson’s disease. “I was relieved to find out we finally had an answer, but I could tell, Robin was not buying it,” said Ms. Williams, who is a California-based fine artist, author, and brain health advocate. “The motor specialist said it was early and mild and that he’d be feeling better once he adjusted to the medications, [that] he had another 10 good years.”
In an attempt to treat the Parkinson’s and what was assumed to be depression, his care plan involved adjusting Parkinson’s medications, combined with an antidepressant. His physician also recommended a visit to the Dan Anderson Renewal Center in Minnesota, “for enhanced 12-step work to augment his sobriety,” Ms. Williams said. “The hope was this might help with fear and anxiety. Robin was clean and sober for 8 continuous years when he passed. I watched how he gained spiritually in so many ways from all the work he’d been doing, but his brain biology was going in the exact opposite direction. He tried desperately to join the parts of his heart, mind, and spirit, but his brain was pulling him apart. I felt like I was watching my husband disintegrate before my eyes, and there was nothing anyone could do about it. There came a day when we were getting ready to go to one of our dear friend’s birthday party. I came and saw Robin as he lay on our bed, imprisoned by fear and anxiety. Through tears, he pleaded, ‘I just want to reboot my brain!’ I promised him, ‘I know, honey. I swear we’re going to get to the bottom of this.’ ”
The couple was about a week away from choosing which neurocognitive testing facility to go to for further evaluation when Mr. Williams took his own life in his Paradise Cay, Calif., home on Aug. 11, 2014. “Robin was exhausted from the terror coming from his brain,” Ms. Williams said. “He took [his own life] before it could take any more of him.”
About 3 months later, the underlying cause of death was revealed: diffuse Lewy body dementia, “one of the worst cases they’d ever seen,” she said. “Because Robin’s disease pathway was extreme and unfolded the way it did, it highlights quite strikingly this disease spectrum. He had a perfusion of Lewy bodies, the essential underlying shared biology between Parkinson’s and Lewy body disease, scattered throughout his entire brain and brain stem.” She added that her husband’s prior history of depression from earlier in life “added to the challenge of getting a proper diagnosis. That single symptom of depression was being treated as its own illness, rather than part of the larger neurocognitive disease. It seems that one of the biggest challenges to getting an accurate diagnosis is that LBD symptoms have tremendous crossover with normal human psychology and behavior, mood, cognition and sleep issues. All of us experience fear, stress, anxiety, paranoia, trouble sleeping, mild depression, and other issues from time to time. We would hardly be human if we didn’t. The challenge of LBD is seeing the giant constellation that it is, rather than just a few of its stars.”
In early 2016, Ms. Williams received the “Commitment to Cures Award” from American Brain Foundation, honoring work she’s done raising awareness for Lewy body disease since her husband’s death. “The day I accepted that award and told our story to a room full of neurologists, my path was forever changed,” she said. “The ABF’s mission of connecting donors to researchers and curing brain disease was an alignment with my mission and hope.” She currently serves as vice chair of the ABF’s board of directors.
“From my own research and from the myriad of letters and information that has come to me, I have distilled what I think are the top three overlooked ideas in this disease space,” Ms. Williams said. “1. Diagnosis: The norm seems to be misdiagnosis, switched diagnosis, or no diagnosis at all. 2. Symptoms: They are being treated independently, apart from the neurological disorder. 3. Suicides: If more autopsies were done, more suicides would be attributed to this disease.”
She concluded her address by reflecting on the impact of her husband’s death has had in bringing an international spotlight to LBD. “When I meet individuals who have lost someone they loved to LBD, I see the pain in their eyes, but I hear the determination in their voice as they chart their own course toward making a difference,” Ms. Williams said. “I have been blessed to learn over and over again that I am not alone. I believe that Robin’s death in this battle against these diseases holds a profound purpose. There was tremendous power in what he suffered, and I saw that power up close. I’m here doing all that I can to see that power transformed into something good.”
ATLANTA –
“With our medical team’s care, for the next 10 months we chased symptoms, but they were so elusive,” Mr. Williams’ widow, Susan Schneider Williams, said during a keynote address at the annual meeting of the American Neurological Association. “One hallmark of LBD is that symptoms appear and disappear randomly. The game whack-a-mole comes to mind. As soon as you think you are about to figure out a symptom, it disappears, and another one pops up.”
Mr. Williams’ medical team included one general physician, one neurologist, one motor specialist, two psychiatrists, one hypnotherapist, one physical trainer, and assorted alternative specialists. “We had been celebrating our second wedding anniversary when Robin started having gut discomfort,” Ms. Williams recalled. “He was tested for diverticulitis [but] the results came back negative. The pain eventually subsided but what was alarming was Robin’s reaction to it. He had a sudden and sustained spike in fear and anxiety unlike anything I’d seen before. By that point, we’d been by each other’s side long enough that I knew his normal baseline moods, fears, and anxieties. This was totally out of character, and I wondered privately: ‘Is my husband a hypochondriac?’ What I know now is that he was exhibiting a notable hallmark of LBD: new onset anxiety, sustained.” Lewy body disease is characterized by more than 40 symptoms, she continued, “and Robin experienced nearly all of them. He was particularly debilitated by fear, anxiety, delusions, paranoia, and as I came to find out later, hallucinations.”
The medical team continued running all sorts of tests, but everything kept came back negative, except for a very high cortisol count. By the late spring of 2014, however, Mr. Williams was diagnosed with Parkinson’s disease. “I was relieved to find out we finally had an answer, but I could tell, Robin was not buying it,” said Ms. Williams, who is a California-based fine artist, author, and brain health advocate. “The motor specialist said it was early and mild and that he’d be feeling better once he adjusted to the medications, [that] he had another 10 good years.”
In an attempt to treat the Parkinson’s and what was assumed to be depression, his care plan involved adjusting Parkinson’s medications, combined with an antidepressant. His physician also recommended a visit to the Dan Anderson Renewal Center in Minnesota, “for enhanced 12-step work to augment his sobriety,” Ms. Williams said. “The hope was this might help with fear and anxiety. Robin was clean and sober for 8 continuous years when he passed. I watched how he gained spiritually in so many ways from all the work he’d been doing, but his brain biology was going in the exact opposite direction. He tried desperately to join the parts of his heart, mind, and spirit, but his brain was pulling him apart. I felt like I was watching my husband disintegrate before my eyes, and there was nothing anyone could do about it. There came a day when we were getting ready to go to one of our dear friend’s birthday party. I came and saw Robin as he lay on our bed, imprisoned by fear and anxiety. Through tears, he pleaded, ‘I just want to reboot my brain!’ I promised him, ‘I know, honey. I swear we’re going to get to the bottom of this.’ ”
The couple was about a week away from choosing which neurocognitive testing facility to go to for further evaluation when Mr. Williams took his own life in his Paradise Cay, Calif., home on Aug. 11, 2014. “Robin was exhausted from the terror coming from his brain,” Ms. Williams said. “He took [his own life] before it could take any more of him.”
About 3 months later, the underlying cause of death was revealed: diffuse Lewy body dementia, “one of the worst cases they’d ever seen,” she said. “Because Robin’s disease pathway was extreme and unfolded the way it did, it highlights quite strikingly this disease spectrum. He had a perfusion of Lewy bodies, the essential underlying shared biology between Parkinson’s and Lewy body disease, scattered throughout his entire brain and brain stem.” She added that her husband’s prior history of depression from earlier in life “added to the challenge of getting a proper diagnosis. That single symptom of depression was being treated as its own illness, rather than part of the larger neurocognitive disease. It seems that one of the biggest challenges to getting an accurate diagnosis is that LBD symptoms have tremendous crossover with normal human psychology and behavior, mood, cognition and sleep issues. All of us experience fear, stress, anxiety, paranoia, trouble sleeping, mild depression, and other issues from time to time. We would hardly be human if we didn’t. The challenge of LBD is seeing the giant constellation that it is, rather than just a few of its stars.”
In early 2016, Ms. Williams received the “Commitment to Cures Award” from American Brain Foundation, honoring work she’s done raising awareness for Lewy body disease since her husband’s death. “The day I accepted that award and told our story to a room full of neurologists, my path was forever changed,” she said. “The ABF’s mission of connecting donors to researchers and curing brain disease was an alignment with my mission and hope.” She currently serves as vice chair of the ABF’s board of directors.
“From my own research and from the myriad of letters and information that has come to me, I have distilled what I think are the top three overlooked ideas in this disease space,” Ms. Williams said. “1. Diagnosis: The norm seems to be misdiagnosis, switched diagnosis, or no diagnosis at all. 2. Symptoms: They are being treated independently, apart from the neurological disorder. 3. Suicides: If more autopsies were done, more suicides would be attributed to this disease.”
She concluded her address by reflecting on the impact of her husband’s death has had in bringing an international spotlight to LBD. “When I meet individuals who have lost someone they loved to LBD, I see the pain in their eyes, but I hear the determination in their voice as they chart their own course toward making a difference,” Ms. Williams said. “I have been blessed to learn over and over again that I am not alone. I believe that Robin’s death in this battle against these diseases holds a profound purpose. There was tremendous power in what he suffered, and I saw that power up close. I’m here doing all that I can to see that power transformed into something good.”
REPORTING FROM ANA 2018