Advocating for Parkinson’s Disease in a Hospital Gown

Last week I had surgery. Little did I know that it would be a great time to advocate for Parkinson’s disease (PD).

It began with the registration process two days before my hospital check-in. The hospital’s admittance clerk called me with some last-minute instructions for my surgery, which took place two days after the phone call ended. 

The instructions were routine, such as not eating after midnight, not drinking after 6 a.m., and showering with that pretty, pink liquid soap. You know — the usual. While on the phone, we went over the medications I take, and the clerk asked me how one of my medications worked for me. 

Her husband is in his sixth year of battling Parkinson’s disease, and his symptoms have been worsening in the last year or so. We talked for about 10 minutes, and I felt I was able to encourage her and provide some pointers that might be helpful for them to discuss with his neurologist. She repeatedly expressed her gratitude and was appreciative that I took the time to talk to her.

Surgery day also presented opportunities to share my experience with Parkinson’s disease. 

I discussed with my pre-surgery nurse the dangers of antipsychotic medications such as Haldol (haloperidol) for people with PD. Potential side effects can leave Parkinson’s patients in worse shape than when they were admitted. This is why I wear a red allergy band when I have any procedure in the hospital. The woman had been a nurse for over 14 years and had never heard of Parkinson’s patients having adverse reactions to antipsychotic medications.

After surgery, I had the opportunity to speak with another nurse who asked all types of questions, as she has a close friend who has PD. The nurse was eager for any information to share with her friend. 

I told her about a support group, Rock Steady Boxing, our state’s PD resource center, a physical therapist who does the LSVT BIG program for PD patients, and more. I shared with her my Parkinson’s website, and she took down information to look into Parkinson’s News Today. Her response to the information I gave her was much like that of the admittance clerk: extreme gratitude. 

I reflected on these opportunities and was grateful to have been given them because sometimes I wonder if my experience with Parkinson’s has made a difference for those coming behind me. After looking back, I think so. At least, I hope so.

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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 Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.