The value of in-person Parkinson’s caregiver support
A recent Cleveland Clinic event offered helpful tips and chances to connect
Having been born and raised in Cleveland, I’m accustomed to living in a city with top-notch healthcare. This didn’t mean much to me as a child and as a young adult, because I was extremely fortunate that none of my close family members or I had any major medical issues to contend with.
When my husband, Arman, was diagnosed with early-onset Parkinson’s disease, the value of living near the world-renowned Cleveland Clinic hospital system quickly became apparent to me. A quick, 25-minute drive lands us at one of the top-rated neurological restoration centers in the country.
Not only is our local hospital equipped with fantastic specialists, surgeons, therapists, nurses, and support staff, but it also offers valuable programs and support groups for Parkinson’s patients and caregivers.
I recently decided to participate in one of the Cleveland Clinic’s local events, called Care Partner U. Now that I am a Parkinson’s News Today columnist, I felt it was my duty to attend. I hoped to bring back some helpful information and insight for my readers.
My top takeaways
The event was held on a recent Saturday at a hotel on the other side of town. I woke up early that day, excited to learn more about how to become the best possible caregiver for Arman.
When I arrived, I checked in and put on my caregiver-colored name tag. Apparently, people with Parkinson’s also were welcome, which I didn’t realize until I arrived. (Sorry, Arman!) I received a folder with the day’s schedule, as well as lots of helpful materials about support groups, safety, and even a caregiver bill of rights. Several breakout sessions featured informative speakers throughout the day.
I took a seat alone in the hotel banquet hall. I think most people assumed I was the daughter of a Parkinson’s patient, not a wife. The event provided each caregiver with a goodie bag filled with treats like a coffee mug, candies, a notebook, and inspirational quotes. This was a really nice touch.
The first speaker discussed preparing for the future. This topic was helpful but scary, so I found myself tuning out. I try not to think too much about the future because the unknown is overwhelming. This might be a naive response, but it’s the best way for me to manage.
After feeling a bit uneasy, I was excited to listen to the next speaker talk about self-care for caregivers. The woman was upbeat and lifted my mood completely. She discussed the caregiver bill of rights, which contained many points, but the following are a few that resonated with me:
- Taking care of yourself is not selfish.
- Seek help from others, even if your loved one objects.
- Expressing emotions is important.
- Take pride in your accomplishments and applaud your personal courage.
At least two dozen booths that attendees could visit between sessions had vendors and information. As I was perusing these, I met two nice ladies. We started talking about our stories and the similarities and differences between them. I felt at ease, and the three of us decided to sit together at the lunch that was provided. We chatted for a long time and cried together for our husbands and for one another. We even exchanged numbers and hope to connect again soon.
Effective communication with Parkinson’s was the next speaker’s topic. I learned that it’s important to minimize distractions while communicating. It’s also helpful to speak face-to-face instead of over the phone or shouting from a different room. The suggestion to take a deep breath while waiting for your loved one with Parkinson’s to speak was a good one.
The day ended with a presentation about preparing for emergencies. Basic life support certification is important, as choking is a concern with Parkinson’s. The speaker recommended speech therapy, occupational therapy, and physical therapy to help avoid choking, falls, and other potential dangers associated with the disease.
I drove home feeling great about the day. It was helpful to learn new tools that will allow me to be more proactive in caring for Arman, as well as for myself. Plus, I was excited that I made new friends! I definitely plan to attend Care Partner U again next year.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
About the Author
Comments
Lisa Koslow
Thank you for your insight. I have avoided caregiver support groups for a multitude of reasons, but I would love to participate in a "Care Partner U" day. I will see if it is offered anywhere in our area. Good luck on this journey.
Jamie Askari
Hi Lisa! I did enjoy the day, and learned a lot. It felt good not to feel so alone in this. I hope that you can find in your area. Thanks for reading!
Kay
My husband was diagnosed with Parkinson's in 2019 at the age of 75. We live in a city that has excellent care and programmes for PD patients, and their caregivers. I too, do not dwell on what may or may not happen in the future. I live the here and now, and this is a good coping mechanism for me. My husband attends a gym, which is staffed by physiotherapist trained in working with clients who have neurological issues. While he is at the gym, I visit with a friend, which is for me a lifeline. To date, we are managing well. My husband continues to do the routine chores that he has always done, and this might not always be the case, but we'll cross that bridge when we arrive there.
Jamie Askari
Hi Kay! It sounds like you have a great attitude, its so important! I am with you on the future, I try not to dwell as well. Glad you are managing well. Thank you for reading!
Donald L. Stegemoller
I am a Parkinson's patient, one program that has really helped me id Rock Steady Boxing. They are nationwide. The workout promotes flexibility, coordination, reaction time, and muscle tone. They encourage care givers to participate as "corner men" Early stage PD patients probably won't need caregiver participation, advances patients most certainly will.
Jamie Askari
Hi Donald, that is wonderful that you are benefitting from the Rock Steady Boxing program. I have heard many positive stories about it. Thanks for sharing your experience. I appreciate you reading!
Ana Maria Tamayo
Dear Jamie, thanks for sharing your recent experience at Care Partner U.
I live in Lima, Perú.
Ray, my husband lives with pd for the last 12 years, so we are a couple and a family together with our younger teenage daughter living with pd at home.
To be able to share similarities and be aware of differences with other carepartner experiences i believe very important.
We need to take care of ourselves as a priority. Absolutey, I agree, self care is not selfish at all.
We find resilience in community as in support groups.
Here in Lima, Ray and I are co facilitating our support group, nuestro Grupo de Ayuda Mutua para personas con parkinson y sus seres queridos.
Greetings, and please keep sharing your insights with us.
Ana María ([email protected]) Celtinkas living with PD
Jamie Askari
Hi Ana Maria! How wonderful that you and Ray are working together on a support group, that is inspirational to me! I know how hard it can be on your daughter as well as you. Thank you for reading!!