Improve your Routine with Helpful Advice & Tips from People with PD & Care Partners
Last month, I hosted Dr. Joseph Friedman, a movement disorders neurologist and the Medical Director of the APDA Rhode Island Chapter and Information & Referral Center, for a conversation about small changes in your routine that can have a big impact on quality of life, which you can view here. He shared a wealth of hacks, tricks, and medication tweaks that can help improve your movement and your day – everything from how to deal with a runny nose caused by PD to tips for weight gain.
Many of Dr. Friedman’s tips are things he’s learned and observed in his own patients over the years. Knowing how resourceful people can be when they need to be, I reached out to our Parkinson’s disease (PD) community – people with PD and their care partners – for the ways that they have found to improve their quality of life. Sometimes a small adjustment can make a tremendous difference so I am eager to share some of the great answers and ideas I received so we can all learn from each other.
Swapping strategies to overcome the challenges of PD is one of the wonderful benefits of joining a support group or an online patient community such as Smart Patients. To see if APDA hosts a Parkinson’s support group near you, visit our Community page or call us at 1-800-223-2732.
Tips & Tricks for Living With Parkinson’s Disease
(Some of the answers below have been edited for clarity)
Diet and Nutrition Tips:
- I eat healthy meals.
- I try to stay hydrated.
- I remove the stress and anxiety around taking medication and eating.
- Nausea takes away appetite and contributes to weight loss. So, if there is nausea, make sure that you eat food with your medications.
- APDA tip: Use keyword “nutrition” to search for helpful information on our website, including a recent blog post about the MIND and Mediterranean diets for people with Parkinson’s.
Exercise Tips:
- As always, I continue to exercise!
- I space out my physical activity throughout the day and take it easy in the evenings.
- I swim about four times a week, about 30 minutes each time and feel this is essential for me. I have a lot of back pain that makes it hard for me to walk any distance, so swimming is a great option for me.
- I always remember to keep moving – especially when the fatigue seems overwhelming.
- I try to listen to my body and exercise during the peak of medication effectiveness.
- I start the day with exercise.
- When I start feeling off, I get up and do some exercises or go for a walk.
- If my leg gets tight, I focus my mind and can consciously relax it.
- I invested in a really good pair of golf shoes that improved my stability when I play golf. They were more expensive than a lot of golf shoes, but not as expensive as having to have another hip surgery from falling!
- APDA tip: Check out the Let’s Keep Moving With APDA video series on Parkinson’s fitness advice, and Be Active & Beyond, our exercise booklet made specifically for people with PD.
Medication Tips:
- A pill container organizes the pills I take at different times of the day.
- My doctor told me to take half-pills at more frequent intervals, to better cover the day.
- My Smart Watch can be programmed so I don’t forget my medication doses.
- I use Miralax for constipation and it works beautifully!
- In the evening, my mouth can be dry from the medication. I don’t want to drink a lot of liquid at that time, so I suck on an ice cube.
- I use Psyllium for constipation.
- I use an online pharmacy which helps me keep my prescriptions organized.
- Taking my medications on time makes all the difference to me.
- I take an extended-release medication just before bedtime which helps me through the night.
- APDA tip: Keep our Medications to Avoid list handy, as there are certain medications that people with PD should not take, or should be used with caution.
Mental Health Tips:
- Every day is different. I try to listen to my body. If I feel extra tired, I don’t push myself.
- I remind my spouse with PD to relax and be realistic.
- I stay calm.
- I try to just have a good attitude.
- As a care partner for someone with PD, I try to keep positive thoughts going and encourage my wife to exercise.
- I try to take each day as a new day and start each day on a positive note – even though at times it is difficult.
- I nap for at least 20 minutes a day to get rejuvenated.
- I make sure that there is a lot of lighting around the house as well as music. This gives an upbeat atmosphere to the home.
- APDA tip: Take a look at our Mental Health fact sheet for helpful information and advice on addressing mental health concerns with your doctor.
Other:
- I stay as busy as I can!
- I schedule bathroom trips.
- We use side rails and pillows to prevent injury from active dreaming (REM behavior sleep disorder).
- When my feet get stuck, I count out loud – this often works to get unstuck. Once I’m moving forward, I am doing well. I still fall more than I like, usually backward. I’ve learned to just never go even one step backward without hanging on to something, like one of the many grab bars I’ve had installed.
Tips and Takeaways
- Small changes in your routine can have a big impact on quality of life in PD
- Joining a support group is a good way to hear about the strategies that others use to overcome the challenges of life with PD, and share some tips of your own
- Support and resources aren’t just for people living with Parkinson’s – explore our resources for PD care partners as well
- You can hear about more helpful ideas in our recent conversation with Dr. Friedman