Resources

Events

This year we transformed our annual community event into a series of webinars. Each month will cover a different theme and include presentations from experts along with time for questions.
Registration is required for each event.

• Living with Parkinson's – Day 3
  Saturday, May 15, 10:30 a.m. to noon
  Register or see the flyer.
• Living with Parkinson's – Day 2
  Saturday, April 10, from 10:30 to 11:35 a.m.
  Register or see the flyer.
• Day 1: Saturday, March 13, 2021 
  Overview of Parkinson's Disease with Drs. Irene Litvan and Stephanie Lessig.
  Watch the recording of this presentation:

Transportation

• Americans with Disabilities Act (ADA) is federal law that requires public transit agencies to provide comparable services for persons with disabilities who are unable to use the bus or rail.  An application must be submitted on their site.

• Most movement disorder patients can benefit from having a disabled parking placard or license plate issued by the California Department of Motor Vehicles (DMV).  The application must be completed by the patient and disability certification must be signed by the physician.

Disability

• SDI is a partial wage-replacement insurance plan for California workers. The SDI programs are State-mandated and funded through employee payroll deductions. Workers covered by SDI are covered by two programs: Disability Insurance and Paid Family Leave.

• The Disability Insurance (DI) program provides affordable, short-term benefits to eligible workers who suffer a loss of wages when they are unable to work due to a non-work-related illness or injury.

• The Paid Family Leave (PFL) program was established for workers who suffer a loss of wages when they need to take time off from work to care for a seriously ill spouse, parent or registered domestic partner.

Home Health Care

• NAHC is a nonprofit organization that represents the nation's 33,000 home care and hospice organizations. NAHC receives requests from members, other health care providers, government officials, journalists, scholars, and industry analysts for the latest facts and figures on home care and hospice. NAHC provides information to help its members maintain the highest quality of care and is committed to excellence in every respect.

Support Groups

• For patients and their caregivers dealing with atypical Parkinsonian disorders like PSP, CBD, MSA, OPCA, SND, SDS 
• Location: 8555 Aero Drive #3308, San Diego, CA 92123
• Meeting Time(s): 3rd Thursday of every month from 1 – 2:30 p.m.
  
• Facilitator: John Jenkins (619) 787-2760, jenkins356@sbcglobal.net

• For patients, their family and friends that would like to be part of the Dystonia Support Group and attend meetings
  
• Location: Alvarado Hospital, 6655 Alvarado Rd., San Diego, CA 92120
• Meeting Time(s): 3rd Saturday of every other month (Jan, March, May, July, Sept & Nov) from 1 p.m. – 3 p.m.
  
• Leader: Martha Murphy
• Website: Dystonia Foundation

• The San Diego Essential Tremor Group is a place to come together learn about essential tremor and shake up awareness in our community.
• Location: TBA
• Meeting Times(s): Quarterly
• Leader: Carolina Conway
• Website: http://sandiegoessentialtremor.weebly.com/

¡Juntos Unidos! Is a peer-led outreach program designed to provide information, education and support to the Spanish speaking Parkinson's disease community. This program is supported by a community grant from the Parkinson's Foundation. For more information on the monthly worskshops please contact Adriana Gonzalez at 858-822-0791 or acg008@ucsd.edu.

¡Juntos Unidos! Un programa dedicadi a proveer informaciòn, educaciòn y apoyo a la comunidad de Habla Hispana. El programa se ofrece gratuito a la comunidad gracias a una subvenciòn comunitaria de la Fundaciòn de Parkinson. Para mas informaciòn sobre los talleres por favor comunìquese con Adriana Gonzàlez 858-822-0791 o acg008@ucsd.edu.

Parkinson's Disease

• Parkinson's Association of San Diego has a list of PD support groups and resources.
• Parkinson's Disease Support Groups

• Leader: jjspooner@cox.net

Botulinum Neurotoxin

There are programs in place to help people access botulinum neurotoxin and to assist patients with or without medical insurance achieve appropriate reimbursement for their treatment.

• This program includes a Botox Hotline and Botox Patient Assistance Program to assist patients who are receiving Botox injections. The hotline is designed to respond to reimbursement questions and help individuals access Botox. Visit Botox Reimbursement Solutions or call 800-44-BOTOX, Option 4 or 800-530-6680 for more information.
• The Botox Patient Assistance Program is dedicated to helping financially eligible patients gain access to Botox. A special website offers information about the program, who may qualify, and how to apply. Visit Botox Patient Assistance or call the Botox Hotline at 800-44-BOTOX, Option 6.
• The Botox® Saving Card Program provides prepaid cards per treatment to help qualified patients meet their Botox® out-of-pocket expenses. Eligible patients, had out of pocket expenses like co-pays or co-insurance for toxin and receiving treatment for chronic migraine, upper limb spasticity, cervical dystonia, or blepharospasm.

• The Cervical Dystonia Fund is dedicated to assist insured patients who cannot afford the out-of-pocket costs associated with any FDA-approved treatment for cervical dystonia. The program is sponsored by Allergan and administered by the National Organizations for Rare Disorders (NORD). NORD can be reached at 800-999-6673, Option 3 or 800-44-BOTOX, Option 6.

• Solstice Neurosciences has created a Service & Support Center to provide information and address questions regarding reimbursement for their product, Myobloc. The Service & Support Center can be reached at 888-461-2255. Certified Medical Insurance Specialists who understand the regional nuances of Myobloc reimbursement staff the Service & Support Center.

• Ipsen has developed a reimbursement program that provides comprehensive access and support for U.S. patients and healthcare providers. PACE (Patient Access, Care, and Education) offers a customer service call center to assist people seeking information about Dysport. For more information, call 888-525-2423.

• The XEOMIN Patient Savings Program is designed to support eligible, commercially-insured patients with their actual out-of-pocket XEOMIN medication costs and related administration fees.
  

Other Resources

• Article: Coping Tips for Caregivers
• ClinicalTrials.gov
• Health Insurance Counseling and Advocacy Program (HICAP)
• National Institutes of Health (NIH)
• National Institute of Neurological Disorders and Stroke (NINDS)
• U-Step Walking Aids

Parkinson's Disease

• American Parkinson Disease Association  
• Article: Living with Parkinson's Disease
• Michael J Fox Trial Finder
• Morris K. Udall Centers of Excellence for Parkinson's Disease Research
• National Parkinson Foundation 
  
• Parkinson's Association of San Diego (PASD)
• Parkinson Study Group
• Understanding Your Medications

Atypical Parkinsonian Disorders

• Cure PSP

Dystonia

• Dystonia Medical Research Foundation

Huntington's Disease

• Huntington Study Group
• Southern Caregiver’s Resource Center (SCRC): (858) 268-4432 
• The Access and Crisis Line: (800) 479-3339 
• Aging and Independent Services: (800) 510-2020 
• HD Society of America, San Diego: (760) 752-1844 
• HD Society of America (800) 345-HDSA 
• Genetically Handicapped Person’s Program, Dept. of Health Services: (800) 639-0597 
• Legal Aid Society of San Diego: (619) 262-0896      

Tourette Syndrome

• Neurology Division at Rady Children's Hospital San Diego
• Tourette Syndrome Association

Other Movement Disorders

• Alzheimer's Disease Research Center - UC San Diego
• National Ataxia Foundation
• National Spasmodic Dysphonia Association
• Pediatric Neurotransmitter Disease Association