The Neuropsychiatric Patients’ Association (NPA) of Newfoundland and Labrador, serving residents across the province and beyond, is a non-profit organization founded in January 2008 by Dr. Hugh Mirolo, Neuropsychiatrist, as an offshoot of the province’s only Neuropsychiatry Clinic. This unique association offers Newfoundland’s neuropsychiatric patients an opportunity to address service shortfalls in the healthcare system, particularly in the area of Neurocognitive Rehabilitation.
Our mission is to provide members with education, materials, and services to assist in caregiving; to establish linkages with healthcare providers and public services in aiding caregivers; and most importantly, to provide an open forum of mutual support and understanding for individuals, parents, relatives and friends of persons who are afflicted with neuropsychiatric conditions.
· Neuroplasticity promotion via Neurocognitive Rehabilitation programs employing cognitive recreational activities.
· Awareness and advocacy creation regarding neuropsychiatric issues.
· Therapeutic milieu provision fostering spontaneous support among patients and families.
· Scientific contribution through Neuropsychiatry research.
· Professional development through academic opportunities for students and NPA members.
· Liaison establishment with various entities affected by neuropsychiatric issues.
· Patients and community members reported benefits from NPA’s member-run Neurocognitive Rehabilitation sessions.
· Contacts with various community resources have begun to increase awareness regarding neuropsychiatric issues.
· A self-support network was formed creating cohesive ties among members.
· A research committee was created composed of NPA members and students involved in neuropsychiatric projects.
· Academic opportunities were provided for research volunteers.
· Numerous linkages were established throughout the community.
Despite its recent establishment, NPA already plays an integral role in the health and well being of neuropsychiatric patients in Newfoundland and Labrador and across Canada.
What are Neuropsychiatric Conditions?
The NPA exists to help individuals and families coping with all forms of Brain Injury, including those of a physical nature (“concussions”, car accidents, falls, etc.), biological nature (Parkinson’s, Huntington’s, Stroke, Multiple Sclerosis, Lyme Disease, etc.) as well as chemical nature (neurotoxicant inhalation, substance abuse, etc.). It is not commonly known that these patients suffer an often-inconceivable level of neuropsychiatric problems including, but not limited to, sleep problems, mood changes (“depression”, apathy, aggression, etc.), impulse dyscontrol (suicide/self-harm, criminal behaviour, etc.) and many more.
As alluded to above, Brain Injuries can result from many forms of physical and non-physical head trauma, such as by inhalation of toxic chemicals, sports injuries, Huntington’s disease, etc., and are unlike mental illnesses widely treated by psychiatrists and other specialists in this field of medicine. Many people are not aware that Brain Injuries can come from a number of different causes, including, but not limited to:
· sports injuries (e.g. body checks, falling on ice, snowboarding/skiing accidents, skateboarding accidents),
· motor-vehicle (including moose) accidents,
· neurotoxicant inhalation (including carbon monoxide poisoning),
· viruses or other infections,
· heart disease,
· genetic conditions (e.g. Huntington’s disease),
· chronic use of alcohol/cigarettes/drugs,
· failed suicide attempts,
· physical abuse or fist fights,
· and many others.
Brain injuries can even come from injuries to the neck, face, chin, and even tailbone, and can occur even if one doesn't specifically remember hitting their head! Brain Injuries touch each of our lives to a much greater extent than many of us realize...Autism, Huntington's, Stroke, Parkinson's, Multiple Sclerosis, Epilepsy/Seizures, Dementia/Alzheimer's, Brain Tumours, and countless others. The number of people that could be helped by the NPA, with proper resources, is astronomical since Neuropsychiatry covers a surprisingly large number of conditions as alluded to above, and even extends to areas such as attention deficit hyperactivity disorder (ADHD), bipolar disorder, schizophrenia, eating disorders, sleep disorders, anxiety, depression/apathy, migraines, post-traumatic stress disorder (PTSD), suicide, addictions, crime, and many more. Our reach goes way beyond what's typically referred to as 'mental health', and into an area we prefer to call 'brain health', or more simply ‘health’.
The NPA helps people deal with many different types of Neuropsychiatric problems. Whether one has one or more of a wide range of potential Neuropsychiatric conditions, such as Traumatic Brain Injury (including the repetitive sport-related ‘concussions’, as recently highlighted in the media, both nationally and internationally), Autism, or a Sleep Disorder, the NPA is there to give rehabilitation, support, education, awareness, and hope to individuals and families with Neuropsychiatric conditions.
Unfortunately, the numbers of brain-related conditions is increasing exponentially, both in Newfoundland and Labrador and across the country. Even worse, healthcare providers aren’t always given the tools they need to ensure these patients have access to neuropsychiatric services when needed. Given the long waiting list for the Neuropsychiatry clinic, we would like to give these particular set of patients and their families some building blocks to begin their journey towards optimal brain health, as well as educate the public about what to look for in themselves, as well as friends and family and how to deal with troublesome symptoms they may be experiencing.
The NPA’s activities are currently centred on 3 main program areas:
· Neurocognitive Rehabilitation to promote Neuroplasticity (brain healing) and optimal recovery in neuropsychiatric patients
· Advocacy for neuropsychiatric patient issues and Awareness regarding Neuropsychiatry and Brain Injury
· Research into Neuropsychiatric Semiology and Brain Injury
The NPA currently holds weekly Neurocognitive Rehabilitation/ Neuroplasticity promotion sessions, including Painting, Needlework, Quilting, Gardening, Scrapbooking, and various other arts and crafts for neuropsychiatric patients. These, along with daily individual brain exercises, are to promote brain healing, or ‘Neuroplasticity’, in response to cognitive stimulation in an effort to foster recovery from a wide variety of brain symptoms. Through various grants and fundraising initiatives the NPA hopes to further develop our Neurocognitive Rehabilitation program for those in the community suffering from a wide variety of brain related problems. In 2020, we hope to be able to hire various community professionals to enhance our Neurocognitive Rehabilitation programming. Our long-term goal is to offer a full calendar of programming for every day of the week.
This program has been in existence without external funding since 2008 and will continue to exist without additional financial assistance, however, at a greatly reduced level. We have just begun to grow our organization by accepting numerous community volunteers and have several fundraisers (including additional grant applications) planned for 2020 and beyond. We hope to improve upon and increase accessibility of our Neurocognitive Rehabilitation program to those on waitlists for services as well as the general public by offering better and more elaborate Neurocognitive Rehabilitation activities that are now greatly constrained by financial limitations.
Advocacy and Awareness
The NPA wishes to develop our community outreach materials to work with healthcare professionals and others directly or indirectly affected by Brain Injury. The NPA also feels it is crucial to provide insight and education to professionals working in primary care, regarding the needs of this, often invisible, Brain-Injured population. We hope to hold monthly information sessions for each of the future patients now on a 25+-year waiting list to enter the Neuropsychiatry clinic, for the general public, and for healthcare professionals. The NPA would like to address questions and answers for the patients on the waiting list in particular, directing them toward activities for Neurocognitive Rehabilitation and promotion of Neuroplasticity in an effort to alleviate some of their suffering, while being on an ever-growing and incredibly long waiting list. Given the long waiting list for the Neuropsychiatry clinic, we would like to give these particular set of patients and their families some building blocks to begin their journey towards optimal brain health, as well as educate the public about what to look for in themselves, as well as friends and family and how to deal with troublesome symptoms they may be experiencing.
Our research in Neuropsychiatry has the potential to change not only the practice of neuropsychiatrists, but also practitioners from every field, providing a better understanding of the brain and offering new knowledge to the future of medicine. This process will encourage more specialists in Neuropsychiatry by creating a niche in medicine for these highly trained practitioners. If medical professionals are better able to recognize neuropsychiatric sequelae in patients, they will be better able to provide help to the large number of the population suffering from these conditions. Medical professionals will also have a better appreciation of the level of thorough analysis that must be applied to gain a complete understanding of a patient’s neuropsychiatric history along with their symptoms and aetiology. Neuropsychiatry practiced as a Specialty in its own right has enormous potential in terms of comprehensively treating a plethora of brain-related conditions.
The current gap in appropriate medical services for Neuropsychiatric patients in Newfoundland and Labrador is great. Due to the fact that the NPA has been endeavouring to provide the above-noted services since its inception in 2008 without any form of external funding to support its efforts, the NPA is confident that, with the help of additional funding and donations, it can make a significant improvements in its weekly Neurocognitive Rehabilitation program, as well as increasing awareness of Neuropsychiatric issues for both the public and the medical community. Our membership consists of neuropsychiatric patients and their families. Many of these patients are unable to work or have very meagre incomes. For this reason, we do not charge membership fees to increase access to our programs and services. The NPA currently relies on donations that would enable us to continue with our Neurocognitive Rehabilitation meetings, to expand to monthly meetings for the patients now having to wait many years to receive much-needed help, and to one day offer a full calendar of daily activities for Neurocognitive Rehabilitation.