First Call Resources for Parkinson’s and Related Support in Albany, NY Region

These resources offer up-to-date information on Parkinson’s disease, referrals to healthcare professionals, emotional support, community resources, and free publications. Contacting any of these will connect you with knowledgeable people to assist with a variety of non-emergency needs.

Resource Name & Contact Description Website / More Info     

Parkinson's Foundation Helpline 1-800-4PD-INFO (473-4636) General PD support and referrals   

Catholic Charities, Francine Meade Caregiver support +1 (518) 372-5667     ccrcda.org Albany County Services   

Albany County Department for Aging - 

Amy Neumann - Directs to resources including other counties 518-447-7198  

Alzheimer’s Association - Shannon Lawler Caregiver and referral services for Alzheimer’s and Parkinson’s, and related conditions (518) 867-4999 ext. 306   

Albany Neighborhood Naturally Occurring Retirement Community (NNORC) Supports seniors 60+ to age in place by coordinating community services and maintaining quality of life 518-514-2023     jfsneny.org NNORC   

Albany County NY Connects Assistance for homebound older adults including home-delivered meals 518-447-7177   

LifePath (formerly Senior Services of Albany) Provides aging-related programs and support 518-694-3511     lifepathny.com/programs   

NY State Office for Aging Statewide aging assistance, referrals, and advocacy 1-800-342-9871     aging.ny.gov   

Housing Options for Senior Adults (Capital Region, Albany Guardian Society) Information on senior housing options 518-434-2140  albanyguardiansociety.org/housing   

Statewide Senior Council Advocacy and resources for seniors statewide 

518-436-1006

Please remember that for any health-related inquiries or emergencies, consulting a healthcare professional is essential.

Parkinson's disease (PD) is a chronic brain condition that causes progressive damage to brain cells over many years. It's characterized by low dopamine levels, a neurotransmitter that helps the brain control movement and coordination. Symptoms can include:

• Unintended or uncontrollable movements, such as tremors, shaking, stiffness, and difficulty with balance and coordination

• Slow movement

• Painful muscle contractions

• Difficulty speaking

• Swallowing problems

• Chewing and eating problems

• Sleep problems, such as waking up frequently throughout the night, waking up early, or falling asleep during the day

There is a rich selection of books offering diverse perspectives on Parkinson’s Disease, ranging from personal memoirs and poetry by people living with PD to practical guides for patients, caregivers, and healthcare professionals. These books provide education, inspiration, coping strategies, and raise awareness about the condition. Notable works include memoirs by Michael J. Fox and Alberto J. Espay, poetry collections, and guides addressing both the emotional and physical aspects of living with PD

kinson’s. It wasn’t easy but it was worth it.

“Parkinson’s is not our fault, it’s an unsolicited chal

A "Must Have" book  

https://davisphinneyfoundation.org/blog/davis-phinney-every-victory-counts/

• Information on the spectrum of Parkinson’s symptoms ranging from diagnosis through advanced stages

• Ways to manage your health and symptoms, including tips for exercise, diet and nutrition, emotional health, and other therapies

• Stories from over 50 Parkinson’s patients who share their personal insights and experiences

• Worksheets for tracking and managing your symptoms and disease progression

If I Can Climb Mt. Kilimanjaro, Why Can’t I Brush My Teeth? Courage, Tenacity and Love Meet Parkinson’s Disease’ by Nan Little

In this honest and emotional memoir, cycling enthusiast Nan Little shares how the sport helped her become physically and mentally stronger after her Parkinson’s diagnosis – in the hope that others will take inspiration from her experience.

“Having Parkinson’s is not easy,” says Nan. “We never know what the next day, or hour, might bring. My book shares my efforts to regain some control of my life through exercise. Even though my fingers couldn’t hold a toothbrush, at age 65 I climbed Mt. Kilimanjaro with a group of people with MS and Parkinson’s. It wasn’t easy but it was worth it.

“Parkinson’s is not our fault, it’s an unsolicited chal

My Degeneration: A Journey Through Parkinson’s’ by Peter Dunlap-Shohl

This humorous graphic novel by former US news cartoonist Peter Dunlap-Shohl guides readers through Peter’s experience of Parkinson’s – from his battle with depression to the impact of the condition on his relationships.

“I resisted the idea of writing a book about Parkinson’s for years,” says Peter. “As novel as the comic format might be in the area of Parkinson’s literature, I didn’t want to merely echo what was already out there in a different form. Then a friend said to me, ‘But you treat your Parkinson’s as an adventure.’ That unlocked the gate for me to write ‘My Degeneration’.

“I hope that readers find inspiration and credible hope in this story, as well as a guide to what their experience of Parkinson’s might look like.”

Shaky Hands – A Kid’s Guide to Parkinson’s Disease’ by Dr Soania Mathur

This book by Canadian writer Dr Soania Mathur is aimed at helping children better understand Parkinson’s – from explaining what it is to offering guidance on how they can help loved ones with the condition.

“The challenges of Parkinson’s extend beyond those diagnosed, to the whole family, including children,” says Soania. “This book is written with contributions from my three daughters, who were all born following my diagnosis of Parkinson’s at the age of 27. Since we fear what we don’t understand, my book serves to enlighten children about all aspects of Parkinson’s and empower them to make a difference.

“Talking about the condition, addressing their concerns and encouraging them to take action – be it going for a walk with their loved one or being patient if activities take longer than expected – can make diagnosis less scary for children.”

You will find some local care partner support groups here [ https://www.cdparkinsons.org/nearby-groups ]

Parkinson’s disease (PD) is a chronic, progressive neurological condition that gradually impacts movement, cognition, and non-motor functions. Caregiving for someone with PD often starts gently—helping with tasks the person may have difficulty with early on—but as the disease advances, caregiving demands escalate. Caregiving encompasses:

• Physical assistance (help with mobility, daily activities, medication management)

• Emotional support (navigating fluctuating moods, depression, anxiety)

• Practical tasks (appointment scheduling, financial and legal planning)

Roles and Evolution of the Care Partner

The Parkinson’s Foundation outlines caregiving as extending beyond obvious physical tasks—often including emotional and spiritual care, advocacy, and coordination with healthcare teams. Early on, caregivers may not identify fully as “caregivers” because the person with PD can still function independently; however, this role becomes more defined as symptoms progress.

Caregiving often evolves through stages:

• Early stages: learning about PD, adapting to diagnosis, managing mild symptoms

• Middle stages: increasing assistance with mobility, communication, daily living tasks

• Advanced stages: tending to complex medical needs, possible decisions around residential or hospice care

Challenges and Burdens of Caregiving

Caregivers frequently encounter:

• Emotional stress and burnout: The ongoing demands can lead to fatigue, anxiety, and depression. Sometimes, caregivers experience “compassion fatigue,” a depletion of emotional resources due to constant empathy and caregiving demands.[2]

• Physical strain: Assisting with mobility and personal care can be taxing physically.

• Social isolation and lost opportunities: Caregivers may reduce social activities and feel isolated.

• Financial strain: Time off work, medical expenses, and other costs add burden.

Importance of Self-Care for Caregivers

Supporting the caregiver is as important as supporting the person with PD. Self-care practices might include:

• Accessing peer support groups and educational resources

• Taking breaks and respite care to prevent burnout

• Practicing stress reduction techniques

• Seeking counseling or mental health support as needed

Available Resources and Support

Organizations such as the Parkinson’s Foundation provide extensive resources for care partners, such as:

• Helplines and educational programs

• Local support groups and online communities

• Guides on how to prepare for medical appointments

• Tips for caregiving in different PD stages and practical safety measures

Health Disclaimer

Please remember that while caregiving guidance can help, every person’s Parkinson’s journey is unique. It is essential for care partners to work with healthcare providers for personalized advice. Also, caregivers facing significant stress or burnout should seek professional support.

Find them here:

https://www.cdparkinsons.org/nearby-groups

Davis Phinney Foundation

https://davisphinneyfoundation.org/resources/parkinsons-care-partner-resources/

The Parkinson’s Foundation Care Partner Program is designed with care partners in mind and is recommended for anyone caring for someone living with PD, including spouses, partners, children or friends. 

The Care Partner Program: Building a Care Partnership

This Series of Online Courses for Family Care Partners are: Completely Free and available for anyone with an internet connection

Self Paced – each can be completed in 1-2 hours in a single sitting or spread out over days, weeks or months

Designed by the Care Partner Program Committee, made up of current and former Parkinson’s Care Partners

Read more at https://www.parkinson.org/Summit

APDA REaources for care partners

https://www.apdaparkinson.org/resources-support/for-caregivers/