Young family torn apart by a sudden and debilitating disease

Egbert Gaye

I take the children to see him as regularly as I can. The last time we were there, he looked really good… smiling and playful. The children drew and colored some pictures for him. He looked as if he appreciated them.”

When Melissa Manly speaks about her husband David Clarke, there’re hints of resignation and acceptance of his condition.
You get the sense that she might have come to terms with the fact that he might be spending the rest of his life in a hospital bed at a long-term care institution, unable to recognize her or any of the people he loves, and incapable of doing anything for himself.
She says: “You always have hope and you have to continue to pray, but the reality is and from what we have been told, chances of recovery are not as good as we’d like them to be. So it’s up to me to continue to do what’s best for my family.”
So for the past four years, Melissa has had to adjust her life and those of her two children, ten-year-old David Jr. and seven-year-old Daniella since their dad has been diagnosed with Anti NMDA Receptor Encephalitis, a rare auto-immune illness during which the body’s immune system produces anti-bodies that attack receptors in the brain.
The illness was only recently identified (in 2007) by a doctor associated with the University of Pennsylvania and the University of Barcelona, Spain, and Clarke is just one in a handful of Montrealers who have been diagnosed with it. He was 29-years-old in July 2014 when his family received the dreaded news.
Since then, the once aspiring chef/caterer spent more than a year in a comatose state at the Montreal Neurological Institute before he regained consciousness and was transferred to the Father Dowd Home where for the past two years or so, he has ****** been living with around the clock care.
“You can never be prepared for something like this,” Manly told the CONTACT. “You expect this type of illness when someone is in their advanced years, not in the prime of their life.”
As such, she is left to grapple with figuring out the way forward for herself and her young family without the man who for the past 10 years has been a pillar of support, a provider and a friend.
“David is such a good man,” she says. “Fun-loving and caring to family and friends. Can’t think of any faults, except too big of a heart.”
They met as members of the youth choir at Imani Family and Full Gospel Church and bonded immediately.
“It was easy because he is a cool guy, respectful and easy to talk to.”
After dating for two years, they were married in August 2008 and began their life together.
And for six years “it was all good” as they raised their small family as staunch members of the church, where David continued to serve as Youth Pastor and also coached junior football.
Dave worked at the Lindsay Institute and took care of the kids in the evening while
Manly, a licensed practical nurse worked the evening shift at St. Mary’s Hospital where she has been for 14 years before her husband fell ill.
Before June 24, 2014 thoughts of David’s debilitating illness never really creeped into their minds. Although for much of that week, he complained of a lingering migraine.
“He had been to see the doctor on several occasions because of those migraines and was been followed, but wasn’t seeing too much improvements,” Manly remembers.
She also remembered how quickly his condition deteriorated on June 23 when they went to his brother’s house for supper. (That morning he had called the doctor to tell her that he wasn’i feeling well and was a little depressed.)
According to Manly, during the dinner her husband’s speech deteriorated and she had to finish most of his sentences. On the way back home, he insisted that she drive.
Manly says the one memory that remains with her from that night is driving past a motorcyclist wearing a Mohawk-style helmet and David’s convulsive laughter upon seeing it.
“Even when we reached home, he couldn’t stop laughing. It was an hysterical and troubling laugh,” she says. “Then he started squeezing his hands and stamping his feet, also hysterically, because of the numbness. I decided it was time to take him back to the hospital.”
Faced with an illness with which they were not familiar and because of David’s erratic behavior, the initial thinking of the health professionals at the hospital was of a psychosis, a mental disorder.
They also thought it might have been meningitis, which at the time Manly thought might have been a better diagnosis, given the potential life-long effects of mental illness.
“It was so distressing not knowing.”
She says David’s condition deteriorated quickly at the hospital, and by the time he was transferred to the Montreal Neurological Institute on June 30, doctors began exploring the idea that he might be stricken with the dreaded and unfamiliar ailment.
The final diagnosis came almost a month later when the results from a spinal tap test came back from a lab in Alberta.
Manly says the doctors were excited to give the diagnosis of Anti –NMDA Receptor Encephalitis because the prognosis is usually good.
“We were told that the disease affects more women than men and it usually manifests itself in a tumor from which the anti-bodies flow. It’s treated with anti viral medications and chemotherapy. “
Sadly, David did not respond well to his treatment, and after years of leading a dynamic and robust lifestyle is today bed-ridden, unable to recognize or respond in any meaningful way to those he loves.
As expected the impact on family and friends is life changing.
His father is said to have made an almost daily routine to the institution to shave his son, trim his hair and apply lotion to his body.
His mom, Linda Nourse relocated to an apartment near to the institution and goes three to four times a week to try to talk to him, read to him and seek other ways of   stimulating him.
Manly goes as regularly as she can. She also takes the children so that they can draw pictures for their father and also talk to him. She decorates his room for special occasions and does what she can to celebrate with him. Her on-going concern is the children.
“They still talk about when daddy comes home…” she says. “At some point, I might have to have a different conversation with them, as they get older.”
For now her focus is on the changes that have been so impactful on their daily lives, not the least of which is the financial consequences of her husband’s illness on the household income.
“What was coming in is now being taken out,” Manly says, referring to the monthly payment that government demands to house David at the institution.
She talks about how relentless they are going after whatever family resources they can identify.
Issues such as ‘power-of-attorney’ and ‘legal-mandates’ are now as relevant as ever, she says.
“They’re things I’ve never bargained for and wasn’t fully prepared to deal with,” Manly says.
Much of her dependence is heaped on the shoulders of her mom and dad and other family members who are close to her.
And it means getting the children up at 6 AM and getting them over to her parents who now have the responsibility of getting the children to school every morning and helping to prepare meals for the family.
“It’s an adjustment because David was such a big part of our lives, but we have to continue to live.”
And David remains an integral part of her life and those of their children as she looks forward…
“I live my life in the moment. I do not dwell on what happened. In the beginning there was sadness around birthdays, holidays and anniversaries, now those days are filled with good memories of what we’ve been through…”

 

What is Anti-NMDA Receptor Encephalitis?

by Linda Nourse

The purpose of this article is to bring to your attention a “new” disease that’s affecting people, young and old, around the world.
Anti-N-methyl-d-aspartate receptor (NMDAR) encephalitis was identified in 2007 by Dr. Josep Dalmau, Adjunct Professor of Neurology at the University of Pennsylvania and Senior Investigator at the Catalan Institution for Research and Advanced Studies (ICREA), Institut d’Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS), Hospital Clinic, University of Barcelona, Spain.
“Dr. Dalmau is a world authority on autoimmune and paraneoplastic disorders affecting the nervous system, a group of immune disorders that attack the brain and spinal cord and can affect people of all ages, including infants and children.”

Congratulations Dr. Dalmau


It was the same Dr. Dalmau who confirmed the diagnosis of Anti-NMDA Receptor Encephalitis shortly after my son, David, was hospitalized at the Montreal Neurological Institute & Hospital in June 2014. At that time, David was 29 years old, married, and the father of two young children. He was trying to launch a career as a chef/caterer while working full time and serving tirelessly at his church, Imani Family & Full Gospel Baptist Church, with several of its ministries.
Briefly, Anti-NMDA Receptor Encephalitis (ANMDARE) is “a disease occurring when antibodies produced by the body’s own immune system attack NMDA receptors in the brain. NMDA receptors are proteins that control electrical impulses in the brain. Their functions are critical for judgement, perception of reality, human interaction, the formation and retrieval of memory, and the control of unconscious activities (such as breathing, swallowing, etc), also known as autonomic functions.” http://www.antinmdafoundation.org/the-illness/what-is-anti-nmda-receptor-encephalitis/ (emphasis mine)
Like most life-threatening diseases, ANMDARE does not discriminate on the basis of gender, race, culture, or geography. However, of the known cases, approximately 90% are women and about 40% are children. Neither the cause nor the cure are known at this time but varying levels of success have been achieved from immune-suppressing and/or modulating treatments such as steroids and/or IVIG as well as certain chemotherapy drugs.
The road to recovery is sometimes long, and David’s battle continues. But there IS hope. The Anti-NMDA Receptor Encephalitis Foundation, Inc. exists for the sole purpose of providing information and support to ANMDARE patients and their families as well as to medical practitioners. The Foundation was established in 2012 by Mrs. Nesrin Shaheen, following the diagnosis of her then 12-year-old daughter. Since then, the Foundation has worked tirelessly to raise awareness and funds for research.
Your help is needed! While we are aware that there’s no shortage of worthy causes, we urge you to consider lending your support, whether by donations to the Foundation or as a volunteer. Please join our efforts to promote the accurate diagnosis and successful treatment of this catastrophic disease that has disrupted the lives of so many people, some as young as 2 years old, and their families!
To learn more about ANMDARE, read patient’s stories, and to learn how you can help, please visit www.antinmdafoundation.org. See also our pages on Facebook, Twitter, and YouTube.

ARTICLES

Congratulations Dr. Dalmau


https://www.frontiersin.org/articles/10.3389/fped.2017.00250/full
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5311041/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2607118/

BOOKS
Brain on Fire: My Month of Madness by Susannah Cahalan (This book was made into a movie produced by Charlize Theron and co-starred Tyler Perry. The movie was screened at the Toronto International Film Festival in September 2016)
In Sickness and In Health by Wesley Thompson
The Girl on the 6th Floor: Awake Through the Nightmare by Brian Nichols

VIDEOS
https://toronto.ctvnews.ca/video?clipId=283333
http://www.espn.com/video/clip?id=21570426&sf174505449=1
https://www.youtube.com/channel/UCGb6-Qa_g3cBG5AFGZ7lUuw

TV
On August 27, 2017, HLN network dedicated an episode to Anti-NMDA Receptor Encephalitis as part of its documentary series entitled Something’s Killing Me, which explores “diseases and symptoms that result in a life or death struggle.” The program followed the cases of 19 year old Emily Gavigan and 6 year old Madison Jensen.