When Your Partner is Diagnosed with Parkinson's: A Caregiver's Story

Meghana Giridhar - April 19, 2016 11:34 AM

April is National Parkinson’s Awareness Month.

Here is an interview with Angela Robb is wife and carepartner for her husband, Karl, who has young onset Parkinson's disease (PD).  Angela speaks and writes about dealing with caregiver/carepartner issues. She has spoken at the 3rd World Parkinson Congress (Montréal),  Davis Phinney Foundation Victory Summit (Richmond & Charlotte), Partners in Parkinson's DC, NPF Young Onset Parkinson Network conferences, and various regional PD conferences. She has written on the topic of caregiver self-care for the Davis Phinney Foundation's Every Victory Counts manual. 

In 2015, she was honored as a White House Champion of Change in Parkinson’s Disease. She is an advocate as co-Assistant Director (11th District - VA) for the Parkinson's Action Network (PAN) and board member of the Parkinson Voice Project. Professionally, she is a certified Reiki Master/instructor and co-owner & Creative director for RobbWorks, publisher of the Amazon bestseller, A Soft Voice in a Noisy World - A Guide to Dealing and Healing with Parkinson's Disease. She has a B.A. in Political Science/Public Policy from West Virginia University.

•    How did you feel about your role as a care partner when you found out about your husband, Karl Robb’s Parkinson’s diagnosis?

My perspective is a little different than probably most carepartners/caregivers. I met my husband, Karl after his diagnosis.  He was diagnosed with young onset Parkinson’s disease at the age of 23 in 1991.  I met Karl 4 years after his diagnosis and had already moved to Washington DC.  A Parkinson’s diagnosis did not come as a shock to me, more a surprise. My knowledge of Parkinson’s disease was that only older people had Parkinson’s.  When I fell in love with Karl, I fell in love with the man, not the disease!

•    How did it affect your physical and emotional health?

The biggest thing for me to focus on is taking time for myself.  I do my best to carve out an hour each morning to take our dog, Lily out for a walk in our town.  I accomplish many things on this walk: 1) exercising myself and Lily, 2) getting a respite from home, 3) enjoying the morning peace and calm, and 4) getting time to ready my mind and spirit for the days.  Without this “mental and physical health time”, I think I would be in bad shape overall.  I also make time to get to my regular check-ups both for the doctor and the dentist.

•    What has been the biggest challenge, so far?

Our biggest challenge at this point in our lives is taking care of ourselves and prioritizing our day (as we work for ourselves).  It is so easy to get lost in the day to day chores that we forget to exercise, eat well, drink water, or even breath sometimes.  Karl and I do try to keep ourselves taken care of because we know that lack of self-care can make his symptoms worse along with shorten my patience.  We try very hard to keep things in balance.

•    Did you find it easy to ask for help?

I’m sure like many carepartners/caregivers out there, sometimes it is easy to ask for help, sometimes it is not.  I try to be open and accepting of help when it is offered. Karl’s Parkinson’s is not that advanced, at this time. He does most of his activities of daily living (ADLs) on his own.

•    How did you tap into your network of family and friends to help your situation?

We live over 300 miles away from our family. We are very fortunate to have wonderful friends who are our neighbors.  A few years ago, when I had my gallbladder removed, they were wonderful.  One neighbor came by with dinner than night for Karl.  We also had neighbors who looked after our dog as well.  A childhood friend of Karl’s came down and spent two nights in our home during that time in case we needed any help.  We are truly blessed with wonderful friends!

•    What tools did you use to ensure self-care?

As a Reiki practitioner, I have a tool that I can use anytime, anywhere to help myself and my loved ones.  Reiki is a modality that anyone can learn to use to help oneself to reduce stress and help enhance our own personal energy. I use Reiki self-treatments daily to help myself maintain emotional balance, reduce stress, and help my physical well-being.  I am fortunate that my husband, Karl practices Reiki and gives me Reiki sessions too!

I do receive regular massage and reflexology treatments. I also practice meditation, yoga, and exercise to work on my physical well-being.  Even a few minutes of personal time a day, helps make a BIG difference in my personal well-being and self-care.

•    Did you use any government/national resources? Which ones would you recommend?

The national Parkinson’s organizations have a bounty of resources available, free of charge to anyone.  We consider them our go-to resources for Parkinson’s information in our community.  Here’s just a small sample of what they have to offer:

Davis Phinney Foundation – davisphinneyfoundation.org – Has a manual called Every Victory Counts, which an excellent living well with Parkinson’s guide – and it’s free in print and electronic formats.

National Parkinson Foundation – parkinson.org – Has a national hotline (1-800-473-4636) available along with many caregiver resources online along with print materials including a Caring and Coping book for caregivers.

Parkinson’s Disease Foundation – pdf.org – Has fantastic online reference guide and monthly webcasts with caregiver topics.

Michael J Fox Foundation for Parkinson’s Research – michaeljfox.org – Great resource for research in Parkinson’s disease.

There are many more local, regional, national and international resources available.  

•    What is your advice for those who have recently been thrust into the role of caregiving?

You can live a full and rewarding life as a carepartner/caregiver!  I’ve found these 3 approaches have always helped me.  I hope they can help you too:

Flexibility – Always have an alternative plan in your pocket.  Rigidity causes stress which makes everything worse! The more flexible you are, the less stress you will have.

Always be asking questions – Asking questions is the only way you can be a good advocate for yourself and your loved one! As a carepartner/caregiver, you are an integral part of your loved one’s health team.  

Being Mindful – Mindfulness is a way for all of us to listen to ourselves.  We get so used to serving others we forget to serve ourselves.  By listening within, even for a few minutes a day, we can strengthen our mind, body and spirit!

Meghana Giridhar serves as Content Manager and is part of eCareDiary's founding team. In her role, she oversees and edits content across all of eCareDiary's media platforms.

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