I came across a Parkinson’s Foundation podcast on hospital safety recently and it brought out some interesting points. In the podcast, Edie Simpson, a retired neurology nurse talks about how hospital staff who have the best of intentions may not have the best understanding of the unique needs of someone with Parkinson’s Disease. Hospital staff, as well as staff who work in rehab or respite setting, may not speak the same language we do when it comes to PD. For example, telling admissions personnel that my husband takes Parkinson’s medication 6 times a day will probably put him on a pre-set schedule which may or may not fit his actual needs. If I instead tell them that my husband takes his PD pills at 7, 10, 1, 4, 7 and 11, his actual timeframe and the importance of it can be entered into their system.

This would lead into a discussion of his response to the medications he takes and on versus off periods. They will need to know what they can expect from my husband if his meds aren’t working properly. I need to tell them that when he misses his medication his muscles get stiff, he has more trouble communicating, his balance and tremors are worse. The left side of his face and body are more impacted which can mimic a stroke, we don’t want them rushing him to the ER or giving him other meds that might make things worse. It may be necessary to give them the list of medications that are contraindicated for people with PD to ensure this doesn’t happen.

Finally, I know how difficult it is for my husband to ask a stranger for help especially with the more delicate or personal tasks. It’s much easier for me to have an upfront conversation to explain areas where he will definitely need help and those where he may need assistance. I also need to share any tips or special accommodations we are using that he might need while he is away from home. They also need to know those areas where he is fully able to care for himself so they can know when to step back and let him be.

For more visit Episode 76: Practicing Hospital Safety | Parkinson’s Foundation on the Parkinson’s Foundation website to hear Edie Simpson, a retired neurology nurse from the Muhammad Ali Parkinson Center, describe how hospitals typically operate and explain why we must educate hospital staff to ensure the best care possible.

For a current list of medications that People with PD should not be taking visit https://www.apdaparkinson.org/wp-content/uploads/2018/05/APDA-Meds_to_Avoid.pdf.