APDA Salutes Parkinson’s Disease Care Partners

Care Partner Tributes and Stories for Family Caregivers Month

November is National Family Caregivers Month — a time to recognize and honor family care partners across the country. We all know how integral care partners are to each Parkinson’s disease (PD) journey and while they should be celebrated year-round, now is a great time to give them the special focus they deserve.

Many describe their role as a care partner to be rewarding and fulfilling, but it can also be overwhelming and stressful. We want all care partners to know that they are seen, appreciated, and that their efforts – big and small – make a world of difference. If you know someone who is a care partner, now is a great time to check in on them, applaud their efforts, and see if they need an empathetic ear.

In celebration and appreciation, we dedicate today’s blog to saluting the care partners who stand by the side of someone with PD – and who best to explain the impact a care partner has than people with PD themselves. We asked our PD community to send us tributes to these special people and this is what we heard:

Care Partner Tributes from the Parkinson’s Community

Don & Elyse
  • My care partner is Elyse, my wife. She has made changes to her lifestyle in order to assume a role as my caretaker due to me being diagnosed with Parkinson’s disease.  Because of her love and commitment for me she has assured me that as the symptoms progress and new needs arise, she will add them to her routine as needed.   — Donald F. 
  • My care partner is my wife, who is also my eyes, ears, drill Sargent and coach. She is always with me at Doctors’ visits and clinical trials. My wife provides critical and objective input when I cannot see some of my own problems objectively. I truly gain when she corrects my posture, and other PD-related actions, although I may have some attitude at the time when it is given. She is my sixth sense and I love and appreciate all that she does for me.  — Bob
  • Observing patients with Parkinson’s elicits a variety of emotions, but what is the view from the patient’s eyes? Generally, we are overwhelmed, self-conscious and somewhat withdrawn.  It is the strength, love, and persistence of our doctors, caregivers, and families that support us.  We would be lost without them.  Thank you for not giving up on us – we love you. – Randy T.
  • My PD journey is better thanks to the support of my incredible wife Heather. Whether keeping me on track (like a Drill Sargent) with exercise, feverishly taking notes at my medical appointments, or lending guidance and support to others in our support group, I am incredibly fortunate to have her by my side from the first day we heard “Jeff, you have Parkinson’s” eight years ago. — Jeff B.
John & Fran
  • My caregivers are my wife Fran and my daughter Tara. Fran is my rock and my memory, going to all my doctor appointments with me, remembering every detail I do not, and sharing the journey hand-in-hand. Tara is the “Gibbs” to my “Tony” (fans of NCIS will get it) and my Rock Steady Boxing coach, keeping me from getting down when times are tough, or I start with the “woe is me” story. Together we’ve taken the leap of faith into DBS. Without them, I would not be the positive person I am about my PD prognosis. – John
  • Despite not being a natural caregiver, my husband has embraced the role — to do what he would normally not do.  With the support of our daughter, he has improved with each new request I have asked of him.  I had always said if each person can do what he/she can, the world would be a better place.  It is because he tries; patience is what we both have now redefined as “in sickness and health….” — Beatrice
  • Bless my husband and sister who always try to meet my needs and wants. Which are many – especially when I am demanding. I love them for everything they do. My appreciation to all the aides, nurses, and doctors who help me every day. – Gail

These quotes are just a sampling of the love and appreciation that people with PD feel towards those who care for them, support them, and don’t give up on them.

Care Partner Resources

As a care partner, it is important to know you are not alone. See below for many APDA resources to support our care partners:

Care partner basics:

Our Becoming a Care Partner supplement is a great overview full of useful guidance for all PD care partners, including tips for taking care of yourself as well as a helpful list of resources for additional information and support. 

A Conversation with a Care Partner:

In this episode of Dr. Gilbert Hosts, we talk with Lianna Marie, a trained nurse, PD care partner, PD advocate and author, for an insightful and personal conversation about navigating care for people with PD.

Care Partner Perspectives:

  • Being a care partner for someone with PD can be whirlwind of challenges, responsibilities, setbacks and victories. Here, three care partners share their perspectives to our readers who might be grappling with similar issues.
  • Kevin Klos has unique perspective that combines 20 years of experience taking care of people with PD as a doctor with his personal experience as a care partner for his mother who has PD. He is committed to helping his fellow caregivers with education and support to guide them on their journey with their loved one. Enjoy this Q&A and his main message that care partners, despite all their misgivings, generally do an excellent job. 

Planning for the What Ifs:

Our special blog series Parkinson’s Disease: Planning for the What Ifs discusses issues related to advanced Parkinson’s disease (PD). This particular post may be helpful for care partners who want to plan for the future and be prepared despite the uncertainties ahead. We spoke with an expert who has spent her career working with those who are planning for the uncertain future, like those with a progressive neurological condition, like PD. 

Common Care Partner Questions:

Care partners are often the ones to notice when a symptom has changed, to cajole their partners to improve their lifestyles, to encourage their partners to follow doctor’s orders, to investigate the newest treatments – in short, to act as another set of eyes and ears along the PD journey. Here are some of the most common questions we receive from care partners.

Tips and Takeaways

  • November is National Family Caregiver Month — a great time to acknowledge the impact care partners make every day.
  • Thank you to the many care partners who advocate on behalf of those with PD. We salute you!
  • APDA has a wide range of resources to support care partners in their vital role.

Do you have a question or issue that you would like Dr. Gilbert to explore? Suggest a Topic

Dr. Rebecca Gilbert

APDA Vice President and Chief Scientific Officer

Dr. Gilbert received her MD degree at Weill Medical College of Cornell University in New York and her PhD in Cell Biology and Genetics at the Weill Graduate School of Medical Sciences. She then pursued Neurology Residency training as well as Movement Disorders Fellowship training at Columbia Presbyterian Medical Center. Prior to coming to APDA, she was an Associate Professor of Neurology at NYU Langone Medical Center. In this role, she saw movement disorder patients, initiated and directed the NYU Movement Disorders Fellowship, participated in clinical trials and other research initiatives for PD and lectured widely on the disease.

A Closer Look ArticlePosted in Care Partners

DISCLAIMER: Any medical information disseminated via this blog is solely for the purpose of providing information to the audience, and is not intended as medical advice. Our healthcare professionals cannot recommend treatment or make diagnoses, but can respond to general questions. We encourage you to direct any specific questions to your personal healthcare providers.