A gift for the Caregiver

When someone gets diagnosed with Parkinson’s Disease, attention naturally leans in their direction. After all, the Person with Parkinson’s (PWP) is the one living with the condition every day, right? Yes, that is correct. But that’s not the whole story.

Family, friends, co-workers, etc. are also greatly impacted by a Parkinsons diagnosis. Most notably, the primary caregiver/care partner. This person may be a spouse, a child, a sibling, a friend, or other. This person will also experience, through a different lense, the ups and downs of having an uninvited chronic condition move in. Typically the focus on the caregiver/care partner is one of what they can do for their PWP. But what can PWP give back to their care partner?

For me, the number one thing I can do is try my hardest to live well. The better I function, the less responsibility my care partner has to assume. Parkinson’s is a chronic condition and over time the care partner will naturally have to assume more responsibility. But, to the degree a PWP can control, living well is the best gift you can give your care partner.

As my symptoms took a steep trajectory downward recently, my decision to have DBS was partly made based on the fact that the less I was able to do, the more my husband was having to take over. As much as I want to feel better, I also want to function better and relieve some of the extra responsibilities my husband has had to assume.

ALERT: if you are a care partner to somebody recently diagnosed with Parkinson’s, Don’t Freak Out. Parkinsons can bring unintended strength and joy to your relationship. The door may close in some areas, but windows may open in others. I doubt you’d see my husband and I riding up Red Rock Canyon on our tandem every week, if it weren’t for Parkinson’s; this was a very large window for us.

November is Caregiver Awareness Month. I am posting some resources that can help caregivers better understand their role as well and give them some additional support. There are many resources available, this is short list, but it will get you started.

PMDAlliance Caregiver Symposium on Friday, Nov. 9 here in Las Vegas. Click the link to get registered. This is a great opportunity to learn more about Parkinsons and caregiving, but also to connect with other caregivers.

https://mailchi.mp/pmdalliance.org/pmdalliance-renew-retreat-update-free-953403?e=0114f53c66

Great article by a couple in northern Nevada. They have a unique story as both spouses have had to assume the role of caregiver at different times.
https://www.davisphinneyfoundation.org/blog/parkinsons-care-partner-partner-needs/

Invigorate Physical Therapy and Wellness is doing a live Facebook videos each Monday in November titled “Taking Care of the Parkinson’s Caregiver”. Jump onto Facebook and follow Invigorate Physical Therapy and Wellness.

Written by - Cidney Donahoo

Parkinson's Place