Resources
Support Groups
Associations and Support Groups
You may find valuable information from organizations specializing in a specific disorder.
Many patients with chronic diseases find inspiration and information in support groups, which bring people with the same illness together in a group facilitated by a knowledgeable health professional.
Associations
- The Alzheimer’s Association is the leading, global voluntary health organization in Alzheimer’s care and support, and the largest private, nonprofit funder of Alzheimer’s research.
Support Groups
- The Alzheimer’s Association Orange County Chapter
- Online at ALZ Connected
Associations
- Carpal Tunnel Syndrome is one of the diseases addressed by the National Institute of Arthritis and Musculoskeletal and Skin Diseases.
Associations
- The Epilepsy Foundation leads the fight to stop seizures, find a cure and overcome the challenges created by epilepsy.
Support Groups
- The Epilepsy Foundation offers support for parents, adults/teens, and children, as well as hosts online community forums
- The Epilepsy Foundation also has a local San Diego Chapter
Associations
- The Hydrocephalus Association provides support, education and advocacy for people whose lives have been touched by hydrocephalus and the professionals who work with them.
Support Groups
- The Hydrocephalus Association has support via:
Associations
- National Multiple Sclerosis Society has a website that discusses multiple topics, including prognosis, treatment and research of multiple sclerosis.
Support Groups
- The National Multiple Sclerosis Society offers many types of support, including
Associations
- The Neuropathy Association is the leading national non-profit organization serving the peripheral neuropathy community. We provide support and education, advocate for patients’ interests, and promote research into the causes of and cures for neuropathy.
- The Willis-Ekbom Disease Foundation is a non-profit organization providing the latest information about Restless Leg Syndrome. The goals of the Foundation are to increase awareness, improve treatments, and through research, find a cure for RLS, a condition which severely affects the lives of millions of individuals.
- The Foundation for Peripheral Neuropathy works to educate the public and healthcare professionals, provide state-of-the-art treatment for patients with peripheral neuropathy, and will be the catalyst for advancing innovative therapeutic developments and accelerating a cure for painful neuropathies.
Support Groups
- The Foundation for Peripheral Neuropathy’s support group finder
Neurology and Pain Specialty Center Groups:
Parkinson’s disease and essential tremor support group: Parkinson’s in Balance, led by Allison Smith, provides education, support groups, fitness classes, psychotherapy, and community outreach programs at no cost.
In the region or online:
Associations
- The American Parkinson Disease Association (APDA) is the country’s largest grassroots organization serving the Parkinson’s community.
- The Dystonia Medical Research Foundation (DMRF) is a 501(c)3 organization dedicated to serving all people with dystonia and their families.
- For over half a century, the National Parkinson Foundation (NPF) has focused on meeting the needs in the care and treatment of people with Parkinson’s disease.
- The Vestibular Disorders Association (VEDA) serves people with vestibular disorders by providing information, offering a support network, and elevating awareness of the challenges associated with these disorders.
- The International Essential Tremor Foundation provides global educational information, services and support to those affected by essential tremor (ET), and to health care providers, while promoting and funding ET research.
Support Groups
- Parkinson’s Association of San Diego Support Groups
- Parkinson’s Association of Orange County Support Groups
- The Dystonia Medical Research Foundation offers in-person groups, as well as online support groups
- San Diego Chapter
- Online support, including a YouTube Channel, Twitter, and Facebook Groups for a variety of specific types of Dystonia
- The Vestibular Disorders Association offers:
- The Willis-Ekborn (RLS) Disease Foundation support group finder
Associations
- Foundation for PSP/CBD and Related Brain Diseases (CurePSP) assists patients and their families, increases public awareness, educates healthcare professionals and supports research toward better diagnosis, effective treatments, and eventual cures.
Support Groups
- CurePSP offers in-person, online and peer support groups
Associations
- The American Stroke Association is dedicated to prevention, diagnosis and treatment to save lives from stroke.
Support Groups
Research
To help our patients find programs and treatments to address their medical conditions, our staff participates in research studies.
Dr. Martinez is a lead investigator in the following studies:
PRISM (The Pseudobulbar Affect Registry Series). Pseudobulbar Affect (PBA) is a neurologic condition estimated to impact over a million patients and their families in the United States. PBA occurs secondary to an otherwise unrelated neurologic disease or injury, such as Alzheimer’s dementia or stroke. Symptoms of PBA include involuntary, frequent, and disruptive outbursts of crying and/or laughing. The goal of this study is to establish the prevalence and quality of life impact of PBA in patients with underlying neurologic conditions including:
- Alzheimer’s disease
- Amyotrophic lateral sclerosis
- Multiple sclerosis
- Parkinson’s disease
- Stroke
- Traumatic brain injury
Medtronic Implantable Systems Performance Registry (ISPR) is a database being created by Medtronic from patients who have received Medtronic implantable deep brain stimulators. The patients who obtain DBS have Parkinson’s disease, essential tremor, dystonia or Tourette syndrome. The purpose is to monitor the use and performance of Medtronic products, and to better understand what the patient needs. The data obtained will be used toward improving Medtronic’s products and developing new products and therapies in the future. They will also use the information to follow government regulations regarding product monitoring and safety. This study is ongoing and requires patient visits at least every six months.
Medtronic RECHARGE, sub-study to the ISPR, is a prospective, multi-center, open-label, non-randomized, interventional study that will assess the recharge system of the Activa RD System in subjects who are receiving DBS for Parkinson’s disease, essential tremor or dystonia (Europe only).