A seasoned caregiver’s top tips for living well with Parkinson’s
Some hard-won wisdom about caring for a loved one with the condition
I recently began attending a support group for Parkinson’s disease caregivers. Although I may have been one of the group’s youngest members, I’ve been a caregiver for longer than most, as my husband, Arman, was diagnosed with young-onset Parkinson’s in 2009. It was nice to be a resource for other caregivers who may be starting their journey with the condition.
The group inspired me to think about the tips and tricks that have helped Arman and me over the years. Following is my advice for caring for a loved one with Parkinson’s.
Laugh through the hard times; it’s way more fun than feeling sad.
Even when dealing with difficult situations, there’s usually a reason to laugh. Finding humor is a great distraction, even if you have to laugh at yourself.
Treat every inconvenience as a learning experience. Make adjustments so you can do better the next time around.
If your loved one with Parkinson’s falls, discuss how to avoid that scenario. Talk about how and why it happened and make detailed plans to go about the task differently next time.
Try to stay a few steps ahead of the Parkinson’s beast, and always plan ahead to ensure your loved one’s safety.
Before going on an outing, think about what you can do to make it safe. Discuss specifics and create a workable plan. Will there be stairs? Will there be a crowd? What can we do to make this a safe and enjoyable event?
Keep some perspective; things could always be worse.
Although Parkinson’s is a royal pain in the backside, things could always be worse. We have lost so many friends to various illnesses and accidents over the years, and living with Parkinson’s is an easier pill to swallow (no pun intended).
Be flexible, as Parkinson’s will often surprise you with a curveball.
Always prepare for the unexpected. For example, I keep bandages and first-aid cream in my purse in case of a fall. Before leaving the house, I always check that Arman has his medications and a water bottle.
Advocate for your loved one with Parkinson’s.
No two Parkinson’s patients are the same, and no one knows your loved one’s experiences better than you and them. Communicate with your medical team to ensure you’re receiving the best care possible. Never assume that your physician and specialists know everything; they need you to educate them on your personal experiences with the disease.
Educate yourself about everything Parkinson’s.
There is much to learn about Parkinson’s, and many valuable resources are available to help. (Parkinson’s News Today is the best one I know!) It’s important to be informed about the diagnosis, medications, treatment options, nutrition and exercise recommendations, and so much more. Your physicians and specialists are also a fabulous resource. Go to appointments equipped with a list of questions, and write down the answers so that you remember them.
Get to know your local Parkinson’s support groups and services and take advantage of them.
Many cities offer Parkinson’s support groups for patients and caregivers. We can also virtually connect with people all over the world, especially since the pandemic halted many in-person meetings. If there isn’t a group near you, you can try searching for online groups and events.
Explore all types of therapy for Parkinson’s.
Many different types of therapy can benefit Parkinson’s patients, including physical, occupational, and talk therapy. Ask your physician to connect you with these helpful resources. It can make a difference.
Remember that everyone is fighting their own battle.
Sometimes it feels like we may be the only ones struggling. However, it’s essential to remember that most people deal with something. It may not be as evident as Parkinson’s, but everyone has their struggles. I make a point to try to be kind in all situations. And because I always look on the bright side, remember that something as simple as a smile can brighten a stranger’s day.
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.
Chritine de los Reyes
Thank you Jamie. Your advice and tips will go a long way in helping me and my husband.
Virginia L Maas
I am the Parkinson's patient. The doctor who diagnosed this, was long on sympathy and short on patient information. I am not knowing what to expect. I have a tremor that affects both hands. I have cramps in my feet, and today, a cramp in my right thigh,just above and to the left of my knee. I miss words when I speak (forgetting the name of a movie or piece of music). I'm not knowing when I'm experiencing Parkinson's symptoms or something else. However, my heart is beating, my lungs are breathing; I can bend over to tend the dishwasher, descend and ascend the stairs to do laundry, and practice the piano (I am a school music accompanist).How can you help me?