If you have been living with Parkinson's for a while, you are likely living at the mercy of Parkinson's medications. Don't get me wrong, I am thankful that medications are available. Without them, life would be miserable much of the time. But don't get me wrong (again), even with medication, you may feel like you are losing your mind. Early on, you take your meds on schedule, you can pretty much count on how long they will last and know what to avoid with them (protein maybe).
As the years pass, and your symptoms progress, you would think you could either just, A. increase your meds or B. increase the frequency of your meds depending on what your doctor recommends. This seems logical to me. Sometimes this works, but eventually you end up with an E-ticket to the Dopacoaster. What is special about the Dopacoaster is that the tracks can change hour to hour. You took the ride yesterday and felt good. Life with PD was manageable. Today, you follow the same schedule. Pop your pills and hop on the ride and nothing is the same. And on it goes until it changes again and again, sometimes hour to hour. If there was an award for unreliability, I would give it to our "gold standard" for PD, carbidopa-levodopa (in all its forms). The scientists try to change it (extended release anyone?), but the result is often even more frustrating.
I don't write this to scare people or deter them from taking medications. Like I said previously, I am very thankful that I have meds to take. There are many places in the world that people with Parkinson's can't get any meds and that needs to change. I write this so that those getting on the Dopacoaster for the first time know that they are not losing their mind and they are not alone. There are millions of us on the ride, but we are often going in different directions.
So, how's your ride and have you figured out a way to smooth it out?
From the Michael J. Fox Foundation: “On July 28, 2022, the U.S. House of Representatives introduced the first-ever legislation solely devoted to ending Parkinson’s disease . The National Plan to End Parkinson’s Act (H.R.8585) will go through the traditional congressional process and will need to be voted on by the House. In case you haven’t yet, send an email asking your Representative to show their support by becoming a co-sponso r .” From Lauren at PD Buzz: This legislation is historic for the Parkinson's community and is the result of much work by the advocacy group at the Fox Foundation. The letter is already written for you . It only takes a couple of minutes to add your information, personalize it and hit the send button. I am urging you all to help this pass by letting your representatives know this is important to you. Please share this information with friends and family and ask them to do the same. I know we all want to find better treatments and a cure for Parkinso
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