A Checklist for Supporting Someone with Parkinson’s
Lately, I have met people who know someone with Parkinson’s. However, the message they delivered to me was somewhat distressful, not hopeful. Consider these comments: “I have a friend with Parkinson’s, and they’re stuck at their home, just frozen.”; “I know someone with Parkinson’s, and they just stay at home now.”; and “I have a good friend with Parkinson’s, and they’ve had it a long time, but he just doesn’t have a good attitude anymore, about anything.”
These comments got me thinking about what we can do to help these people with Parkinson’s (PwP). Each one was likely uniquely different from the other, and obviously, they were all under severe living conditions. Nonetheless, would a checklist help all of us to live better with Parkinson’s and stay renewed? Always try to embrace these words: “I choose to make the rest of my life the best of my life.” Louise Hay
Coping with Parkinson’s
We must remember that Parkinson’s is both a chronic and a progressive disorder. With time we may progress, and our symptoms may mature and get worse. It also means we may develop new symptoms. It could mean that you have had Parkinson’s for 20 or 30 years, and possibly you are worn out from dealing with reality.
Thus, mentally and emotionally, it can be challenging to live with Parkinson’s. However, take solace in these words from Glenn Schweitzer, “Behind every chronic illness is just a person trying to find their way in the world. We want to find love and be loved and be happy just like you. We want to be successful and do something that matters. We’re just dealing with unwanted limitations in our hero’s journey.”
This list is a wake-up call for everyone with Parkinson’s, or if you know somebody with Parkinson’s. It is time to re-engage them, boost their spirits, remind them that hope still exists. Remind yourself, or your friend with Parkinson’s, “Today renews your lease on the rest of your life, enjoy it (get up, get out, get going). Today acknowledge your Parkinson’s; give it a nudge, because you are ready for the battle and for life.” Frank C. Church
The checklist below is a simple reminder of what we can do to manage our Parkinson’s, to better our life outside the confines that Parkinson’s so desires of our bodies. Think about it this way: a sedentary person is what Parkinson’s gains strength from by their path of least resistance.
By contrast, the active person with Parkinson’s who brings hope, perseverance, and positivity provides the spark to hold Parkinson’s at bay. Focus on the words of Denis Waitley, “Don’t dwell on what went wrong. / Instead, focus on what to do next. / Spend your energies on moving forward / toward finding the answer.”
How to provide support
Please read over the list if you have Parkinson’s; hopefully, you can use it to remind yourself of some common goals to counter your Parkinson’s. If you are a friend of someone living with Parkinson’s, here is a chance to help. If you can spare a few minutes every-now-and-then, please use the checklist to visit your sedentary friend with Parkinson’s. Your goal is to help them re-activate and re-engage in their life.
Get outside and walk together
Drop by and say hello and get a feel for their mood. Are they frozen-in-form or just slightly rigid? The goal is simple, to go outside and, for example, walk to the mailbox and back. Tell them how valuable exercise is proven for people-with-Parkinson’s, no matter what stage of their disorder or their age.
Ask when they last saw their neurologist
Please remind them of the relative value of seeing their neurologist every six months. Although the progression of Parkinson’s may be slight or subtle, their healthcare provider is usually the constancy-of-care. The movement disorder physician can advise therapy and guide the treatment plan for the person-with-Parkinson’s.
Ask about their medication schedule
The ‘gold-standard’ drug Sinemet (carbidopa-levodopa) is best taken on an empty stomach (if possible), and 20-60 minutes before eating a protein-laden meal (again, if possible). Moreover, do they have a regular schedule during the rest of the day/evening to take their PD-specific drug?
Ask them about their diet
Proper nutrients (proteins, carbohydrates, lipids, vitamins, minerals) are all needed fuel for the person-with-Parkinson's. While there is not a Parkinson’s-specific-diet, the evidence is emerging favoring either the Mediterranean or a plant-based diet in an attempt to slow the progression of Parkinson’s.
Find out how well they are sleeping
It is vital to know if they are getting enough sleep every night. Why? Please think of the brain like a sponge filling up with fluid all-day long; during our time to sleep, we squeeze the excess liquid out and restore/refresh our mind. Insomnia is shared from both treatments and as a clinical feature of Parkinson’s.
Encourage them to join a support group
It should be a positive interaction when joining a Parkinson’s support group. The idea of having a well-trained and best-intentioned social worker organizing such a support group should be both reassuring and very supportive to all.
Learn who helps manage the condition
It is essential to find out if someone is helping manage aspects of their daily life. Alternatively, maybe the care partner is overburdened and in need of a break. Could you strategize with them to give the care partner time off, even for a few hours by you or someone else?
Plan for social interaction
Emerging data and information are revealing that socializing and social networking is a part of the formula for the neuroprotection of people with Parkinson’s. If there are no social interactions, it would be most beneficial to make a plan to include getting the person-with-Parkinson’s out with others.
There is recent information that exercise is neuroprotective but additionally, it has a positive effect on quality-of-life. Strenuous exercise is better than just exercising, which is far superior to no exercising. The ultimate goal is to help the person-with-Parkinson’s to begin exercising. However, the person-with-Parkinson’s should first consult with their neurologist and follow-up with a physical therapist before beginning to exercise.
Remind them to remain hopeful
Help them to remain hopeful, persistent, and positive. “Speak quietly to yourself and promise there will be better days. Whisper gently to yourself and provide assurance that you really are extending your best effort. Console your bruised and tender spirit with reminders of many other successes. Offer comfort in practical and tangible ways - as if you were encouraging your dearest friend. Recognize that on certain days the greatest grace is that the day is over and you get to close your eyes. Tomorrow comes more brightly...” Mary Anne Radmacher
Have you or your loved one had issues with medication timing?