Care for the Caregivers
Sometimes life is what happens while you’re making other plans. Coping with a diagnosis of Parkinson’s Disease is not high on most people’s list of preferred retirement activities. But that is the situation Carol and Samuel Goldenberg found themselves facing a few years ago when Sam’s diagnosis of Parkinson’s rearranged their priority list. It soon took precedence over any plans for further world travel or other adventures in their “golden years.” It continues to do so as his condition progresses.
After a rewarding career in the field of Psychology, Sam now finds speech difficult, and is frustrated when he is unable to communicate his thoughts and ideas. His wife, Carol has gradually assumed more caregiving tasks on his behalf. They are a loving couple who enjoy each other’s company and get along well. They have supportive and helpful friends and neighbors, yet it is difficult for Carol to leave their home for more than brief jaunts to the grocery store.
Carol has had her own health issues. She is a cancer survivor. Just as she finished chemotherapy and was preparing to start radiation treatment, they learned about Sam’s diagnosis. As her health recovered and she grew stronger and better able to manage, Carol was persuaded to look into respite care so she could continue to pursue some of her own interests. She was reluctant at first, as she was used to taking Sam with her everywhere. They had loved hiking together, and while it saddens her that Sam is no longer able to join her on a hike, she missed taking trips to the wilderness to explore nature. Carol has been involved in a history study group for some time. She particularly missed her walking group, both socially and for the vital physical exercise she needed to reduce stress and maintain her own health.
Since enrolling in the Respite Care Program (administered by the City of Seattle, Human Services Dept., Aging and Disability Services) a couple of years ago, the Goldenberg’s look forward
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Seattle Post-Intelligencer PD Articles
This is a series of articles that the NWPF instigated. A very good piece of coverage for general public consumption.
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WA State Governor's PSA on Parkinson's disease
The current WA State Governor, along with three past Governor's, join together to raise awareness around Parkinosn's disease and the many resources, services and care that is now available for the Northwest Parkinson's community.
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NWPF's PD Glossary
The NWPF's Parkinson's Disease Glossary of Terms. A comprehensive listing of words used in discussion of PD.
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Parkinson's Disease Association of San Diego
PDASD is a separately incorporated and independent Parkinson's organization that also houses the San Diego Chapter of the APDA I&R Center. The primary role of the center is to provide information on Parkinson's Disease and local resources to Parkinson patients. This is an excellent resource for those located in Southern CA and beyond.
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DBS Programmer Database
is an online databse of those that are expert in programming DBS implants. Each time someone expresses interest in finding a DBS programmer in a specific state, we add that state to the list. When a programmer actually registers, the state becomes an underlined link to a programmer.
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Creativity and Parkinson’s Project
AA program of the Parkinson’s Disease Foundation, the Creativity and Parkinson's Project exists to explore, support and encourage the therapeutic value of creativity in Parkinson’s. Click the link above to learn more or to view the online gallery, which showcases the beautiful and inspirational artwork of over 250 artists, all living with PD.
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Parkinson's Caregiver
Full of resources for Parkinson's caregivers. The CareGiver's Pages list many general resources that are available on the Internet for CareGivers
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Washington Assistive Technology Foundation
Our mission is to promote access to technology and economic opportunity for individuals with disabilities in Washington State. The Washington Assistive Technology Foundation (WATF) is a 501(c)(3) nonprofit and Community Development Financial Institution (CDFI).
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The Movement Disorder Society
The Movement Disorder Society is an international professional society invested in the research and care of patients with Movement Disorders, including Parkinson’s disease, Parkinsonism, Dystonia, Chorea, Huntington’s disease, Ataxia, Tremor, Myoclonus, Startle, Tics, Tourette syndrome, Restless legs syndrome and Gait disorders.
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Parkinsons Disease and Movement Disorder Society of India
Parkinson’s Disease and Movement Disorders Society (PDMDS), a non profit organization, was developed to work towards improving the quality of life of people with Parkinson’s and their care givers. The society provides support services, aid and information to persons with Parkinson’s and other Parkinsonism conditions.
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National Family Caregivers Association
NFCA is a grassroots organization created to educate, support, empower and advocate for the millions of Americans who care for chronically ill, aged, or disabled loved ones. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships and different life stages to address the common needs and concerns of all family caregivers.
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Video Caregiving
A visual education tool for family caregivers of loved ones with Alzheimer’s Disease, strokes or other physical disabilities featuring 20 videos with real family caregivers sharing their life stories and learning how to best care for their loved ones. The videos are the primary messenger on the site, but informative tips and educational text are also available.
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Victoria Epilepsy and Parkinson's Centre
The VEPC is dedicated to enhancing quality of life for those whose lives are touched by Epilepsy or Parkinson's. Our primary focus is to provide high-quality, reliable information and services for those living with Epilepsy or Parkinson's and their family members.
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Tremor Action Network
Tremor Action Network is dedicated to advocating for the millions of diagnosed and undiagnosed children, adults, and next generations affected by essential tremor and tremor related neurological disorders.
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Melvin Weinstein Parkinson’s Foundation
The MWPF purchases equipment and supplies necessary to maintain a safe and healthy environment. This, in turn, provides emotional support for Parkinsonians and helps them to maintain their independence, self-esteem, and dignity. The MWPF has been contacted by individuals, support groups, and many other charitable organizations throughout the world. Our website (www.MWPF.org) has made us easily accessible.
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International Essential Tremor Foundation
Great site on Essential Tremor.
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Parkinson's and Pregnancy
A website with information on being pregnant while living with Parkinson's.
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Movers and Shakers, Inc.
is a grassroots support organization for those dealing with Young Onset Parkinson's and other movement disorders.
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Parkinson's Association of the Carolinas
The Parkinson Association of Mecklenburg County is an education, advocacy, referral and support organization for Parkinson's Disease.
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Washington State Chapter of the APDA
The Washington State Chapter of the APDA is here to help people who deal with Parkinson's disease, whether patients, family members, or caregivers.
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Restless Legs Syndrome Study
Ongoing Clinical Trial
Volunteer who have been diagnosed with moderate to severe Restless Legs Syndrome 18 to 85 years of age and have the ability to follow study instructions.
To participate call 425-899-3126 or 425-899-3115
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Washington State Parkinson Disease Registry
The purpose of the Washington State Parkinson Disease Registry is to make Parkinson disease (PD) research happen faster by connecting people with Parkinson disease to the research community.
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Kids and Parkinson' s Disease
A site for kids who are coping with Parkinson's.
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SeniorServices.org
A resource for finding a care home with the specific skills to care best for your family member.
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WellSpouse.org
A resource for caregivers
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Caregiving.org
A resource for caregivers.
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Parkinson's Caregiver's Website
is a wonderful compilation of PD caregiver resources. Very helpful.
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Caregiver resources on the web
Thanks to Murray Charters for the great link to Caregivers resources, Parkinson's & Care-Partners & Support Groups
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PD Trials
This is a listing of current clinical trials and the contact information for the clinics.
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FDA' s Tips for Taking Medicines
Medication management is rarely as simple as "take two and call me in the morning". A comprehensive guide to managing your meds.
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Exercises for the PD Patient
Handy tricks and exercises to improve walking, sitting, rising, balance, and more.
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Parkinson' s Patient at Home
A paper that helps the patient and family to achieve better adjustments to home living.
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Doctor' s Guide to PD Information and Resources
News and information for PD patients, their friends, and their families.
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Michael J. Fox Foundation
The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson's disease within the decade through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson's today.
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Parkinson's Disease & the Art of Moving
From this link you can purchase John Argue's "Parkinson's Disease & the Art of Moving" Book and/or VIDEO COMPANION (ten graduated lessons, each about 20 minutes) and get a wealth of information about Parkinson's exercise.
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Parkinson's Disease Foundation
The Parkinson’s Disease Foundation (PDF) is working for the nearly one million people in the US who live with Parkinson’s disease (PD) by funding promising research to find the causes of and a cure for PD while supporting people with Parkinson’s, their families and caregivers through educational programs and support services.
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American Parkinson's Disease Association (APDA)
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National Parkinson Foundation (NPF)
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Parkinson Alliance
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