Parkinson’s support can come in many different forms
A columnist offers ideas for how best to support a loved one with the disease
My husband, Arman, and I are fortunate to have family locally who are always there for us. Most of our family members live within a 10-minute drive from our home. We also have a fantastic group of friends who are just as close to us as our family. I know many caregivers and patients are fighting the Parkinson’s battle alone, without the support of loved ones, and I salute you wholeheartedly.
Throughout the years, we’ve been amazed at the solid foundation surrounding our family. When Arman was diagnosed with early-onset Parkinson’s disease in 2009 at age 38, my sister, my best friend, and a large group of local women got together to form a nonprofit organization with a mission to raise funds and awareness for Parkinson’s. We named our group “Parkinson’s Pals.”
Our entire community supported our efforts, and we raised over half a million dollars in less than five years. It was a fantastic way to make a difference in the Parkinson’s community while raising necessary funds for research.
Thankfully, there’s an abundance of research dedicated to Parkinson’s disease. Many treatment options are also available for patients at every stage of the disease. When there’s a new approved treatment or research we might not be aware of, friends and family always send us information to alert us. It feels good to know they’re always thinking about us.
While all of the above are fantastic ways to be there for loved ones with any chronic illness, what else can be done? What could you do to give the patient and caregiver a better day? The answers to these questions are closely tied to what stage of Parkinson’s the patient is at and the amount of time the caregiver needs to dedicate to them.
Other ways to offer support
At Arman’s current stage, I can fully care for him full time. My other responsibilities include managing a small business, writing my weekly column for Parkinson’s News Today, volunteering (I tutor young adults with Down syndrome), and running our household. In addition, I need to squeeze in some time for myself. This usually involves Pilates classes and playing mahjong with my chicks. At this point, Arman is still comfortable with me leaving him alone at home for short amounts of time. However, I know I’ll eventually be caring for him 24/7, as most caregivers inevitably do.
For our family, one of the best gifts anyone can offer us is their time, as this helps both Arman and me. Living with a chronic illness can be lonely and isolating, so visiting often and taking the time to simply talk with Arman is beneficial. In addition, since Arman struggles with his speech, large gatherings can be challenging and overwhelming for him. Including him in conversations and having the patience to hear what he has to say is another gift, as he sometimes seems to be alone and overlooked in a group.
When planning activities that include a friend or family member with Parkinson’s, consider their abilities and what would be safe and enjoyable for them. Learn as much as you can about the disease to plan Parkinson’s-friendly outings.
Lastly, and possibly most importantly, the easiest thing you can do for a loved one with any disease is to treat them just like anyone else. They don’t want special attention or to be treated differently. They’re the same person they were before their diagnosis and want to be treated as such.
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.