Speak Up

My husband is 72 and has been living with Parkinson’s for 25 years. The general medical community knows so little about PD. We have seen many new drugs and treatments available to improve the quality of life for Parkies. When my husband was first diagnosed, there were very few Movement Disorder Specialists. Working with a Movement Disorder Specialist and therapists (physical, occupational, speech) who specialize in working with Parkinson’s patients is the key to a better quality of life.

My husband is in the hospital for a respiratory problem. Most hospital staff know little or nothing about Parkinson’s and the importance of continuing the home drug regime. First make sure to discuss all medications with the hospital staff doctor. Most hospital pharmacies do not stock Rytary, Azilect or rasagiline so you will need to bring them from home. My husband has a DBS so you will need to explain what a DBS is and what it does. Do not assume that the medical staff knows. Ask for a card from the hospital doctor so that you can connect the doctor if the nurses do not follow the home drug regime. Nurses like to talk about “windows of time” for giving medication; we know the importance of giving medication at the appropriate time. If the nurses do not follow the home medication regime, then I contact the doctor or I ask if it would be easier if I gave him his meds. I stay in touch with our movement disorder specialist via patient portal. I also ask questions about interactions of medications. My children and I take turns staying with him so that one of us is available to listen to treatment procedures or ask questions or to answer their questions. Do not be afraid to speak up and advocate for your loved one. You are the expert on your loved one and his/her PD.

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