For immediate Release
ESSENTUALE Founder Rob Cummings Recovers Completely from Mysterious Brain Disorder.
February 20, 2003 - Laguna Niguel, CA - In a miraculous turn of events, Rob Cummings, ESSENTUALE Founder, is recovering completely from the undiagnosed sudden illness that was expected to take his life last August 2002 after he was brought in by girlfriend Cindy, and initially admitted to South Coast Medical Center for observation.
Problem was sudden legs paralysis. Not knowing what to do, or what it was, he was checked for stroke or heart attack yet had neither. Sudden headaches and back pain preceded this.
Released a day later in Cindy's care, Rob
Cummings returned to South Coast Medical Center with a diagnosis
unknown, and his condition rapidly deteriorating. This time unbearable
headache, back and neck aches requiring maximum doses of morphine in a
drip - and still in great pain.
On August 12, Dr. Vincent Duda, Rob's primary care physician, ordered Rob rushed by life support ambulance (about the size of a UPS truck) to UCI Medical Center, a world-renowned research hospital located in Orange, California, where he was admitted to the NICU (Neurological Intensive Care Unit).
Rob remained in '4 North', the Neurological Intensive Care Unit at UCI Irvine, for 35 days (very few patients require a stay in a Neurological Intensive Care Unit for that length of time).
Suffering from severe and excruciating pain in his head and back, the swelling of the blood vessels in Rob's brain (known as cerebral vasculitis) caused complete paralysis of face and limbs, and intense hallucinations.
An increasing number of spots on Rob's brain were appearing in near-daily MRIs and CT scans.
Daily blood tests revealed nothing. Seven spinal taps revealed little, other than a worsening condition. Hundreds of tests showed no cause, and ruled out early diagnoses.
By day 20 of his stay at UCI, experts from the Centers for Disease Control, as well as hundreds of Neurologists, specialists, interns and scholars, remained baffled as to the cause of Rob's mysterious sudden illness, and therefore could not recommend a treatment.
Rob was put on life support off and on, and was not expected to live.
Rob experienced vivid and extremely
believable hallucinations during nearly all of the first 25 days as a
result of the blood vessels expanding in his brain (cerebral vasculitis)
- and no cause found.
Frequent unannounced bedside visits from various people in street dress identifying themselves as being from the CDC (Centers for Disease Control) caused Rob even greater alarm. Apparently there was some thought that Rob may have been 'patient 1' in some sort of bio-terrorism attack test as the date was not long after the anthrax problem, however this was never explained.
On top of that, knowing he was partly hallucinating, many did not always believe Rob's 'stories', like telling Cindy people had visited him at night claiming to be from the CDC. That 'story' Rob told about the CDC turned out to be entirely true, and as you will read below, for whatever reason UCI chose to spend over one million dollars to attempt to cure Rob, a very fortunate thing.
Other things Rob said of course were not true. For example, he never flew to Miami, and he never was tied inside a slowly sinking ship, or trapped on a sail boat, or in a bed in the back of a fire house, or a submarine base, or flying helicopters, or riding on trains - flatbed and coach - or a lot of other 'stories' he shared with doctors, nurses, and Cindy.
As a result of Rob's vivid and detailed descriptions. doctors, nurses and Cindy knew of Rob's hallucinations and 'trips' in vivid and specific detail. In some cases, not realizing the nature of his hallucinations, some reinforced them. This caused greater confusion.
Remarking later, Rob said "in a strange way, the hallucinations helped me get through this. They were like movies - and so real (plus sometimes innocently reinforced by staff) that I grilled Cindy for months afterwards trying to separate what really happened from what was imagined."
Like green screen, these 'movies' seamlessly combined the reality of what was actually happening in the room, and people in the room that actually were there, with other auditory and visual elements Rob imagined - and not there. A nurse Rob was conversing with was actually there, and Rob was answering the questions in a lucid manner, yet to Rob, the nurse appeared as a stewardess, or male nurse as a pilot, and the background was an airport. Rob was paralyzed and immobile and could not look side to side or behind him - for 35 days.
"I had no reason not to believe what I experienced had not actually happened, but I certainly went many places - in my mind" said Rob after release.
Based on detailed stories Rob told to nurses, doctors, and Cindy in regards to his 'escapes' and 'adventures', it was clear that Rob believed these 'movies' actually happened.
Over and over in the months that followed Rob's release from the hospital, Cindy needed to explain to Rob that he never once left his bed at the UCI Irvine facility - though he was certain he had - and on numerous occasions to numerous locations - due to the vivid hallucinations.
As Rob later remarked "these
hallucinations were so real, I could not imagine any of them not having
truly happened, especially since the people in my room were in
them - and did exist."
Following scores of MRI's, CT scans (approximately 12 MRI's and 22 CT scans to Rob's head), seven spinal taps, and constant blood testing, the treatment for Rob's continuing decline, without a diagnosis as to the cause, remained elusive.
Over 350 tests for every possible disease, condition, and virus, virtually every one known to man since the beginning of mankind, were performed. None proved positive, none offered clues other than helping to dismiss diseases, conditions, viruses and causes that did not cause this mysterious illness - many that had not been seen for centuries
Though Rob presented symptoms of Bell's Palsy, Guillain-Barre Syndrome, meningitis, encephalitis, and other neurological diseases, tests revealed none of these to be the cause.
Rob was free of any known disease, yet dying, with more spots appearing on his brain.
Neurologists said "we tested for every disease known to man, Mr. Cummings has none of these."
To rule out every possibility, UCI Irvine even tested the newly manufactured ESSENTUALE Shampoo, Conditioner and Body Wash formulas, as well as 'Toodles', Cindy's bird.
The ESSENTUALE bathing system products received a clean 'bill of health', as did Toodles.
after exhausting all avenues, a large group of Neurologists and related specialists (about 100) analyzed
Rob's condition as he sat propped in a wheelchair in an amphitheater at
the UCI Medical Center Campus and 'voted', as a group, on Rob's
"Hallucinating yet aware, I thought this was some kind of show I was acting in or auditioning for. Desperately wanting to go home, and not understanding what was really going on, I put on one of the best performances of my life. I popped up from paralyzed to fully animated - for about 10 minutes. I also did not realize I was barely alive at the time." said Rob.
The actual purpose of this meeting of so many Neurologists and Specialists, approximately 100 in the UCI Amphitheatre, was to 'take a group vote' on Rob's potential course of treatment since there was still no diagnosis (other than cerebral vasculitis) and no identifiable cause.
The situation was so grave, serious and
and the team at UCI Irvine so committed to saving Rob's life, they
ordered 'one-on-one' nurse supervision day and night - meaning a nurse
is assigned to do nothing more than to sit at the edge of the patient's
bed and watch.
Another aspect for caregivers to understand is a brain
patient's desire to escape.
Once told about brain problems, patients like Rob then wonder, with a brain problem, what are they thinking with? Rob believed his brain was somewhere around his abdomen.
By the 25th day, a combination of steroids (prednisone) and chemotherapy (cyclophosamide or cyclophosphamide (Cytoxan), first administered by IV two days before, resulted in Rob finally showing signs of some improvement.
As Rob commented looking back at the time "what I felt contributed more than anything to my coming back, as I came back, were the prayers of so many, and the love of my girlfriend, Cindy, an angel I truly believe was sent to me by God. I have always believed in God, yet not connected with any specific religion."
Rob has described a day where he felt he was given the choice of living or passing on.
Interesting for caregivers to understand,
the pain was so severe that the choice in Rob's mind was close to 50/50
live or die.
Rob chose to live, and shortly after saying 'yes, I've chosen to live', remembers 'waking up' [as if from a dream] completely paralyzed, as the 'someone' said he would be, yet feeling hopeful.
Rob commented "I was incredibly frightened at the thought of being paralyzed for the rest of my life. I wondered what I would do and how I would live, yet I was oddly hopeful I might somehow overcome this - at least to some degree."
Rob's miraculous recovery stunned the medical center, his doctors, and CDC experts.
As one lead Neurosurgeon told Rob's girlfriend Cindy, when she asked how it was that Rob recovered so suddenly, he confirmed that he did not believe it was the treatment.
He looked up toward the heavens. "Someone else had a hand in this", he said.
With seven more days of treatment, Rob was finally able to leave his room in the neurological intensive care unit (NICU), leaving 4 North, and down to acute rehab.
Rob had prayed for the day he could get out of NICU and into acute rehab. "The day they wheeled me down two floors was absolutely huge" Rob remarked.
Rob spent 10 days in acute
rehabilitation, learning to walk, talk, eat, and regain his motor skills.
tools in acute rehab resembled the brightly colored toys of pre-school
It was disorientation i.e. not being able to orient himself in a three-dimensional space, meaning not being able to process where the ground was, and therefore how to step and where to step. A strange feeling, difficult to overcome.
After intense evaluation, a chief Psychologist determined that Rob had not lost any of his mental capacity, which, he said, appeared to be quite high before the event, and [lack of loss] was amazing under the unusual circumstances.
UCI released Rob under Cindy's care on September 19, 2002, still without a diagnosis.
The conditions identified during his hospitalization were cerebral vasculitis (swelling of blood vessels in the brain), meningitis (inflammation of the outside lining of the brain), and encephalitis (inflammation of the interior region of the brain).
Barr� syndromes, Multiple Sclerosis, and numerous other conditions considered earlier, were ruled out. Rob was one of the few ever to be released from UCI with a diagnosis unknown.
Since this was a single, isolated and unique case, the senior Neurological staff has told Rob that it is likely the cause of his illness will remain unknown forever.
UCI was considering writing a white paper and investigating further yet chose not to once UCI determined no one else in the world had whatever it was that Rob had.
All consider Rob's recovery to be a miracle.
UCI Medical Center staff nicknamed Rob 'the million dollar patient'.
The final amount actually billed to insurance was $335,000, though the President of UCI Irvine Medical Center confirmed the actual cost easily exceeded $1 million.
Rob attributes living to the research done to cure him, well beyond typical treatment.
Though most said that as much as a year could pass before Rob's final outcome would be known, Doctors were surprised to see him walking into their offices less than a month after being released.
Not walking well, but able to walk, without a wheelchair or a cane.
Now, nearly five months later (the date of this writing), Rob is returning to his work, can type on his computer, can walk.
The paralysis of his face and arm that plagued him during and shortly following his stay, has disappeared.
Rob Cummings said "I want to thank
everyone who prayed for me, sent cards and letters, replied to and sent
emails to Cindy, and helped Cindy to help me through this. I had only
met Cindy in person a mere three weeks before all this happened. Just as
I felt I had found the love of my life, I feared I would not be around
to enjoy her. As things have turned out, it was nearly dying that showed
me the meaning of true love, of Cindy, of my long-time friends, of my
family, and of the incredible people involved in ESSENTUALE, whom I
realized were all dear and true friends.
And of course, Dr. Vincent Duda, who Rob feels is an exceptional family physician and human being, and amongst the best and brightest and most thoughtful Rob has ever come to know.
"Dr. Duda made every right decision every step of the way, knowing what to do, and when, and how, and who to contact, and how to make all work out - plus talk to Cindy and the family in the best possible way. I feel I owe my life to Dr. Duda" said Rob.
Rob Cummings will be back to work, and plans to prove to all involved in ESSENTUALE that he has recovered 100%, and that their faith was not unfounded.
For more information please contact Rob Cummings at 949.249.2519.
P.S. If anyone in the World reads this Press Release and
has had an illness identical to Rob's, which remains undiagnosed and
appears as if it may forever, please contact