One of the biggest reasons for hospitalizations in the Parkinson’s community aside from medical emergencies and trauma (usually because medications not well adjusted) in my experience is acute side effects such as hallucinations, confusion, psychosis, or pain all stemming from improper intake of prescribed Parkinson’s medications.
One way to avoid unnecessary ER visits is to be informed about the medications we have been prescribed by our neurologists/MDS physicians.
Keep a detail record of all medications prescribed. This should include dosing, frequency, and duration as well as prescribing physician. Plus you should leave a space for comments on side effects next to each medication. Also include in this chart any research trials and the name and number of coordinator. PDF (Parkinson’s Disease Foundation) as well as NPF (National Parkinson’s Foundation) have charts which you can down load or you can make your own.
First, each time you visit your physician take your entire pill bottles including both prescription and over the counter medications. Even esoteric things like over the counter laxatives can be of importance. These can lead to dehydration and electrolyte abnormalities causing leg cramps which can be confused with potentially similar side effects with some PD meds such as Neupro patch which can also cause cramps. Other medications can interfere with prescribed Parkinson’s medications (e.g. certain muscle relaxants are contraindicated with intake of Azilect) causing potentially dangerous reactions.
Second: if you have trouble understanding or communicating bring someone with you to every visit which can serve as an interpreter and help remember and jot down instructions for you.
Third, when you receive a new medication take time to understand what is for. Find out if it be replacing another one? Will it be taken in conjunction with existing medications? How do you start it? Do you have to tapper up? If replacing another one do you simply stop existing medication or do you have to wean off? What is starting dose and target dose? Find out about potential side effects? What should you do if they occur? Find out if there are any dietary restrictions.
Fourth: are all medications in the class prescribed the same? Are there assistance programs if you can’t afford new medication prescribed? Are there similar medications if insurance won’t cover and no assistance programs? Get description of the plan.
Fifth, it is important that when you obtain your medications you maintain a regular schedule which is easy to do when things are going well but much more difficult when life starts throwing curve balls like unexpected sickness of a loved one causing you to travel outside of your comfort zone. I recommend getting a pill box to keep things organized. Always keep some extra (at least 2 weeks) in case of unexpected emergencies like in climate weather where you are forced to be shut in. Maintain an emergency medical kit ready at all times. You can get one from NPF. Don’t double medications if you missed a dose. If away from home and run out simply ask pharmacist to lend you some till you can contact your doctor. Remember, there are a number of gadgets and apps to remind you to take your medications on time. Do not self medicate. Sometimes unknowingly we may be making our symptoms worst. We feel bad so we take Sinemet or derivative thereof and then we feel worst when it runs out so we take more and we get in a vicious cycle. In cases of dyskenisias and PD symptom fluctuation sometimes LESS is MORE! The goal of treatment is to maintain as close a balance as we can to natural brain equilibrium as possible which means usually a cocktail treatment because our brain is run an in constant equilibrium between all the different neurotransmitters offsetting this delicate system is what gets us into trouble when we replace only one type of chemical in my experience!
Talk to your physician always before making any changes or adjustments to your regimen.
Finally, keep in mind differences in brand vs. generic although they are not supposed to be much difference between the two because according to the FDA generics are supposed to have same active ingredient leading to similar quality and performance however because they are not required to have same inactive ingredient there may be great variability noticed from person to person when switched and even between varying generics in the same individual. Always make sure to look at the prescription handed to you by pharmacist to make sure you are getting the right medication and dosage since pills may look very different month to month if getting generics leading to confusion and increase side effects especially if having dyskenisias; variation in medication maybe the greatest culprit. If having motor fluctuations stick to same generic or buy brand if possible. Teva makes the best quality generics.