I need a "Parkinson's support group" for care-giving family members. My mother is rapidly approaching advanced Parkinson's disease and I need some personal support with all of it! I Was told that hospice can help but am unable to find a support group in Healdsburg, Calfornia. Can you direct me?
Expert Answer by Paula Spencer
You're right that a support group can help provide practical and moral support. The American Parkinson's Disease Association offers a directory to its local chapters at its website www.apdaparkinson.org, and these chapters can give you leads to local groups -- and will definitely have other resources to share. Also check with your local area agency on aging, your mom's doctor, or the major hospitals in your area. Hospice programs typically are geared more to end-of-life support than chronic disease support.
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For spouses who are caring for a husband, wife or partner with Parkinson's (or any other chronic illness and/or disability) you can get peer support, from those who have "been there done that" here: Well Spouse Association: http://wellspouse.org.
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The National Parkinson Foundation (NPF), http://www.parkinson.org, has a large array of local chapters and support groups, all listed on their web site. While the APDA offers a great service, NPF has support groups linked directly from the home page (under "Find Resources" at the top of the page) and has many more local chapters (for example, there are four NPF chapters in California to APDA's one). Both NPF and APDA have a greater focus on care and caregivers than other Parkinson's disease-focused organizations.
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Please ask your doctor if he/or she can recommend a support group. They often form around physicians and hospitals that specialize in PD. You may also want to check www.parkinsonresearchfoundation.org for more information on groups in your area.
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