10 Tips for Care Partners

Being a care partner for a loved one who has Parkinson’s Disease can be very stressful. It’s difficult to watch someone close to you suffer and you want to be able to do your best for them, but it’s important to remember that you also have to take care of yourself.

PFP has compiled a list of practical tips for care partners of individuals living with Parkinson’s Disease to make their lives easier and to help ease the stress.

  1. Be organized: Keep all of your loved one’s medical notes, insurance, records, appointments, telephone numbers of clinics and doctors, and medication details in a folder that can be easily accessed at any time. Take this folder with you to all appointments so you always have everything on hand.
  2. Take time for yourself: In order to be able to look after your loved one, you need to be physically and emotionally well. Take time off–it’s important to unwind and de-stress. Make sure you have time to relax. If necessary, enlist the help of other family members or even hire someone to assist you in providing care. Continue to meet with friends, participate in hobbies or groups, and maintain a schedule as normal as possible. You will not only feel more energized, but you will also be less likely to feel resentful.
  3. Understand the medical insurance: Make sure you fully understand your loved one’s medical insurance policy — what it does and doesn’t cover and how to apply for reimbursements of medical costs.
  4. Join a support group: By joining a support group, you will be able to ask advice and share your experience with others who are going through the same thing. You are there to listen to and support your loved one, but you also need a support person. Understanding that you are not alone and that someone else is in a similar situation helps you to feel nurtured. Learn more about PFP’s Care Partners Support Group
  5. Educate yourself about Parkinson’s Disease: Keep up to date with all the latest news about the condition, read up about symptoms and talk to your loved one’s doctor about what to expect with the progression of the disease. That way you’ll understand what changes to expect in your loved one’s behavior or symptoms and how you can best help when those changes occur.
  6. Expect changes in the relationship: Mood swings and depression are common in Parkinson’s disease and your loved one may even become resentful. It’s difficult to deal with these changes in the relationship, so open and honest communication is critical. You will both need time to adjust to your new roles in the relationship.
  7. Observe symptoms and report any changes: By caring for your partner on a daily basis, you will probably be the first person to notice any changes in behavior or worsening of symptoms. Report these to your loved one’s doctors as they occur so they can be addressed as soon as possible.
  8. Encourage independence: Try not to do too much for your loved one, they will want to hold onto their independence for as long as possible. Ask if they need help and respect their answer. Don’t try to do everything for your loved one. Allow them the time to complete daily activities on their own, such as dressing.
  9. Know your rights: Familiarize yourself with both care partners’ rights and disability rights. Find out if you are entitled to any disability or care partner’s benefits.
  10. Talk about the future: Although this is a difficult topic to broach, it’s important that you understand what your loved one wants further down the line. You need to discuss wills, treatment options and end-of-life decisions.
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My Story: Roxanne Self

Meet Roxanne!

Originally from Livingston, TN, Roxanne and her husband Gary currently reside in Cookeville, TN.

Roxanne is one of the founding members of the Cookeville Support Group and continues to be active, not only in her local group, but participates in several programs and events with PFP.

Here is what Roxanne has to say about her Parkinson’s journey.

I was diagnosed with Parkinson’s in May of 2011. Frankly, I didn’t know what Parkinson’s was, but I was already a very active person. When I had PD about 6 yrs., a friend in Franklin living with Parkinson’s, told me to look at the groups on Facebook. What information!!  I started going to physical therapy (PT) and I soon realized there were no resources for individuals living with PD in this area. I am very much a people person, so at the urging of my PT, I formed the Parkinson’s Support Group of Cookeville & Surrounding. I covered six counties. The Director of the Senior Citizens Center walked in one day, and said she had a room. I was able to form a Rock Steady Boxing Program and the membership grew quickly. Not only was I helping people, but I was having a wonderful time. I thought – Who was this woman!?

At this time I joined the PFP, and we became the PFP Support Group of Cookeville. The PFP introduced me to a Parkinson’s world that I had no idea existed. I made many, many new friends. When I asked what I should do, I was told ” Go do what you do!!” I don’t know what it was either, but ” My pleasure! ” When there were 65 people attending, the PFP came and formed a Steering Committee for the group. I decided to take a step back from leadership became greeter, and mentor.

We are now over 3 years old. I look back and think ” How on earth did I do that!?”. I think it was a God thing.

I did something that should be an inspiration to everyone. Just say ” Yes I Can”.

 

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PFP Joins #GivingTuesday 2021

FOR IMMEDIATE RELEASE

Nashville, TN November 12, 2021 – The Peterson Foundation for Parkinson’s has joined #GivingTuesday, a global day of giving that harnesses the collective power of individuals, communities, and organizations to encourage philanthropy and to celebrate generosity worldwide. More than 6,400 people in Middle Tennessee are diagnosed with Parkinson’s Disease PFP’s mission is to support and enhance lives of people with Parkinson’s, their care partners, and families to achieve their highest possible quality of life through awareness, education, and programs within a caring community. We can not do that without your help.

Occurring this year on November 30, 2021, #GivingTuesday is held annually on the Tuesday after Thanksgiving (in the US) and widely recognized shopping events, Black Friday and Cyber Monday to kick off the holiday season and inspire people to collaborate in improving their local communities and give back in impactful ways to the charities and causes they support.

“It is important the foundation continues to provide programs, events and support to the Parkinson’s Community,” states Brent Peterson, Founder and Board Chair of the Peterson Foundation for Parkinson’s, “The #GivingTuesday movement allows us to share this support beyond Nashville into the greater Middle Tennessee area and encourage others to join our mission.”

 

About PFP

Founded in 2009, the Peterson Foundation for Parkinson’s is a non-profit with a mission to support and enhance lives of people with Parkinson’s, their care partners, and their families to achieve their highest possible quality of life through awareness, education, and programs within a caring community.

About #GivingTuesday

GivingTuesday is a nonprofit organization that is dedicated to unleashing the power of people and organizations to transform their communities and the world.
To learn more about #GivingTuesday participants and activities or to join the celebration of giving, please visit:
Website: www.givingtuesday.org
Facebook: www.facebook.com/GivingTuesday

To learn more about PFP please visit:

Website: www.petersonforparkinsons.org
Facebook: www.facebook.com/PetersonFoundation
Twitter: twitter.com/PFParkinsons

Contact:

Debbie Lowenthal
Peterson Foundation for Parkinson’s
Executive Director
brent@petersonforparkinsons.org

My Story: Marsha Dunn

PFP had the opportunity to learn about Marsha Dunn’s Parkinson’s Journey. Marsha is a native Tennessean, graduating from Antioch High School and Middle Tennessee State University. She lives in Nashville with her husband and 2 daughters.

Marsha has been employed by Metro Nashville Public Schools for 35 years. In her free time to loves to be outside swimming or gardening. She enjoys reading, playing games and does some thrill seeking by riding rollercoasters and zip lines. Her favorite place to relax is on the beach.

Marsha was diagnosed with Parkinson’s Disease in September 2017. When asked what her primary symptoms were she said, “My left side, particularly my hand and fingers, sometimes will not follow the commands of my brain.   I smell only a few things such as Windex and cigarette smoke and I have trouble sleeping through the night.” After a Parkinson’s Meet-and-Greet Marsha, John Tso, and David Green met and the Active with Parkinson’s Group was created.

As someone who is very involved in PFP, we wanted to learn what this organization has done to support her through this journey.  Marsha said “I can sum this up with one word, friendships”.  She is able to speak to her support group members about concerns she may have regarding her symptoms or even just a quick question.

 

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