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Resources for Caregivers

Once again, hello. I was trying to decide what to focus on this month. I realized I have a lot of articles, books, YouTube videos, pamphlets, etc. I tend to assume everyone has all the same information, but based on my conversations with other PD fighters and caregivers, my assumption may be off. Therefore, I thought I would share some resources for all stages of this PD journey.

I found joining both the Parkinson’s Foundation (https://parkinson.org/) and the Michael J. Fox Foundation (https://www.michaeljfox.org/) invaluable tools. The Parkinson’s Foundation has booklets that you can also obtain. One of particular interest is called, Caring and Coping: A Caregiver’s Guide to Parkinson’s Disease. Below you will find organizations suggested in this booklet. The Parkinson’s Foundation also has a hotline (800-473-4636) where you can always call for up-to-date information about PD, referrals to healthcare professionals, emotional support, community referrals and more.

Services for Older Adults:

Aging Life Care Association https://www.aginglifecare.org/; 520-881-8008

National Association of Area Agencies on Aging https://www.n4a.org/; 202-872-0888

Alliance for Aging https://www.allianceforaging.org/; 800-963-5337

AARP https://www.aarp.org/; 888-687-2277

Next Avenue https://www.nextavenue.org/

Caregiver Associations:

Family Caregiver Alliance https://www.caregiver.org/; 800-445-8106

National Alliance for Caregiving https://www.caregiving.org/; 301-718-8444

Caregiver Action Network https://www.caregiveraction.org/; 202-454-3970

Medication Assistance:

NeedyMeds https://www.needymeds.org/; 800-503-6897

Partnership for Prescription Assistance https://www.pparx.org/

RxAssist https://www.rxassist.org/

Patient Access Network Foundation Parkinson’s Disease Assistance Program hhtps://www.panfoundation.org/parkinsons-disease; 866-316-7263

Adaptive Clothing:

Buck & Buck https://www.buckandbuck.com/; 800-458-0600

MagnaReady https://www.magnaready.com/ (my Dad loves these shirts and slacks which fasten with magnets instead of buttons); 866-635-8866

Medical Equipment:

Independent Living Aids, LLC https://www.independentliving.com/; 800-537-2118

In-Step Mobility Products, Inc. https://www.ustep.com/; 800-558-7837

National Seating and Mobility https://www.nsm-seating.com/; 615-595-1115

Reliable Medical Supply, Inc. https://www.reliamed.com/; 763-255-3800

Advance Directives:

American Bar Association https://www.americanbar.org/; 800-285-2221

**Ask for Toolkit for Advance Planning

Aging with Dignity, Five Wishes https://agingwithdignity.org/

National Hospice and Palliative Care Organization, Caring Connections https://www.caringinfo.org/; 800-658-8898

National Physician Orders for Life-Sustaining Treatment (POLST) Organization https://www.polst.org/; 503-494-4463

Mayo Clinic, Jacksonville https://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/living-wills/art-20046303

This is by no means an exhaustive list and there are a number of local organizations providing these services as well. But this is a beginning.

Until next month, be happy, be healthy, be good to yourself.

Annette


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