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Dear Parkinson’s Care Partners

dear-parkinsons-care-partners

Dear Parkinson’s Care Partners

Dear Parkinson’s Care Partner,

Being a care partner to someone with Parkinson’s isn’t easy. It takes time, effort, energy and love, and chances are, it’s not what you signed up for. However, if you’re reading this post, no matter how you found yourself in this position, you stand together with hundreds of thousands of people around the world who identify as care partners and who give so much of themselves day after day to help the ones they love.

According to the National Alliance for Caregiving, 86% of care partners are untrained. They simply learn as they go. But it’s no small learning curve, which is why today, on behalf of our people with Parkinson’s who share with us via emails, comments, conversations and donations how grateful they are to have your in their lives, we want to call you out for being awesome.

Thank you for…

  • Being able to switch roles on a dime – from spouse/child/friend to care partner
  • Loving me despite often feeling tired, frustrated, overwhelmed, tapped out and unable to tend to your own life
  • Taking me to EVERY doctor’s appointment! 
  • Doubling and tripling up on household responsibilities
  • Adjusting your routines to make life easier for me
  • Recognizing the subtle motor and non-motor changes I don’t always see
  • Having uncomfortable conversations with me and my doctors
  • Expressing your concerns and letting my care team know so they can address them sooner rather than later
  • Teaching others about Parkinson’s and spreading the word about how important it is that we pay attention to it… and helping others who are traveling a similar path
  • Reminding me to speak up and advocate for myself
  • Managing medications, appointments and my care teams
  • Questioning medications my doctors prescribe and their treatment plans
  • Navigating a very complex and always changing healthcare system
  • Battling insurance denials
  • Keeping our home accessible and safe
  • Encouraging me to do more than I think I can and reminding me that there are still so many things I CAN do
  • Celebrating ALL of the victories with me
  • And so much more…

And, because we wanted to call some specific people out for being awesome, we asked some of our Davis Phinney Foundation Ambassadors to share how grateful they are to the care partners in their lives.

As far as I know, I am the luckiest person in the world for not only the love and support you give me, Lily but also how I get to learn and grow with you daily. – Brian Reedy (Brian and Lily Reedy pictured above with Brian’s service dog, Dempsey.)

 

I must say a very special thank you from the bottom of my heart to you, J. Our wedding vows, like many others, included the phrase “in sickness and in health.” That was long ago, and we still live up to our commitment. I witnessed your care for your parents and know you will do the same for me as time goes on. I am very grateful for such unconditional love and am especially glad that you hold me accountable to exercise (6,000 miles by April 2020 to honor me and benefit the Davis Phinney Foundation!), take my meds and live well. Tha daily commitment you make to me and to us far exceeds my day-to-day expectations and illustrates your sacrifice to walk beside me no matter what. – Lorraine Wilson

 

I would love to give a shout out to you, Leisa Ames for all you do for me and our family. You are a source of strength that I don’t know what I would do without. I love you Leisa!Carl Ames

 

Thank you for supporting me on my journey to live my best life and for allowing me to focus time and effort to help others do the same.Marty Acevedo

Marty Acevedo - Davis Phinney Foundation Ambassador
Marty Acevedo and her husband

You live out your marriage vows every day…who knew you would have to take care of me in this way. – Carol Clupny

Carol Clupny - Davis Phinney Foundation Ambassador
Carol Clupny and her husband ride to live well with Parkinson’s

To my care partner Ken Hill. I adore you and am to my core grateful for you and for us. I am a better person with you. Your kindness, humor and patience enable me to not feel like a PWP, I feel loved for being me. Forever…..Kat 

 

I’d like to thank you, Amy. No one knows what they’re in for when they first get married.  It’s a leap of faith, and you usually find yourself living through experiences you didn’t anticipate, both positive and negative. Neither you nor I expected to live out the later years of our lives together this way, but I am so fortunate that you’re making this journey with me. I trust you with my life and my well-being, and I’m constantly amazed by the depth of your strength in the face of adversity and your ability to rise to the new daily challenges that Parkinson’s brings to us both. You take on new responsibilities and new tasks every day.  You aren’t immune to fear, frustration, or irritation, but rather than letting them overwhelm you, you use your other resources to manage them and keep going. I rely on you, and I am grateful to be able to. You’re the strongest person I know, and I know how blessed I am that you’re with me. – Corey D. King

 

To my care partner (and partner in life), Sharon, You have always been there for me – regardless of the significance of my need for help.  For the first eight years after my diagnosis, I didn’t need much from you, but recently I’ve needed more. Due to my extensive back issues, you do the bending and twisting moves I should not do. Your spirit is indomitable and you have now become an active member of the Care Partner Support Group here in Boulder. You are there for others, besides me, and you offer sound advice and feedback to those who seek you out. I couldn’t be luckier to have you in my life. – Rich Wildau

 

Darling Barbara, I don’t know what I would do without you. I derive so much of my strength from all of the little things you do for me. This means I have extra strength to devote to Parkinson’s advocacy and supporting others. – Joe O’Connor

 

To my husband Pat, who is not only a care partner but also an enthusiastic and passionate advocate for people with Parkinson’s. You are passionate about helping people with Parkinson’s live well, and it has become something that we do together.  We have discovered so much on this journey with Parkinson’s together. We both have come to love cycling, and you are my biggest advocate. When I have Parkinson’s apathy, you get me up and going. It has not been easy for you to understand all of the changes that have occurred over the last 10+ years, but you listen and take it all in until you do. In the words of a dear friend and advocate, Michael Fahning, “I am a blessed “wo”man.” – Cidney Donahoo

Pat and Cidney Donahoo - Davis Phinney Foundation
Pat and Cidney Donahoo

Thank you to all of the Parkinson’s care partners out there who help people with Parkinson’s live well, live long and live joyful lives.

 

Additional Resources for Parkinson’s Care Partners

If you or someone you know is a care partner, here are a few of the resources and content we’ve created for you.

Advice for Parkinson’s Care Partners 
How to Build Resilience While Living with Parkinson’s
Rewriting the Rulebook for Parkinson’s Care Partners 
Parkinson’s Care Partners: Rewriting the Rulebook
Care Planning for a Parent Living with Parkinson’s
How to Stay Healthy and Avoid Burnout as a Parkinson’s Care Partner
How to Be the Parkinson’s Care Partner Your Partner Needs
The Parkinson’s Care Partner Digital Toolbox
Sexuality and Intimacy for People with Parkinson’s and Their Care Partners

1 Comment on “Dear Parkinson’s Care Partners

    • Colleen Harker

      November 30, 2019 at 12:05 pm Reply

      when I married Mike 12 years ago ,..he was in deinel “it was just a trimmer “he says.. but over time with meds he has had DBS .. 3 upper scrop, . his sllwoing was REALLY gettting bad we have good days and some NOT so good, but “WE ARE HANGING IN THERE,” the lord is on our side..,. MIKE I love you very much ! even with Parkision he is still my rock..

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