Skip to main content

Out of My Mind...

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?

Comments

Post a Comment

Popular posts from this blog

My Experience in the Clinical Trial for the New FDA Approved Subcutaneous Levodopa Pump

  It took quite a while but the FDA has finally approved a new way for people with Parkinson's to get levodopa. It is a subcutaneous pump designed by AbbVie. The medication is Foslevodopa/Foscarbodopa and they have named the new pump Vyalev.   Back in 2021, I joined the clinical trial. It was time intensive and I had to drive almost an hour and a half to and from the trial site once a week but I was excited to be part of a trial that I thought might make a difference for people with Parkinson's.   In a nutshell, I only got to wear the pump for about a month. The doctor overseeing the trial recommended that I stop because I was having a lot of bruising and swelling at the injection site and the meds were sometimes pooling under my skin instead of going into my system. I was disappointed to have to stop but I was hoping that my experience in the trial gave the researchers some info that would be helpful. Now that it is on the market, I want to try it again. So what w...
Post a Comment
Read more

It's Time for Change

  At the end of a year, it is common to look back and take stock of what has been working and what needs to change.  This past year, 2024, marked the eight-year anniversary of my Parkinson’s diagnosis and the seven-year anniversary of being a dedicated, passionate, leader in my local Parkinson’s community. It also was my most difficult year living with the symptoms of Parkinson’s.  I ended the year exhausted, sick with Covid, and beyond frustrated with the status quo of Parkinson’s treatments, and our current healthcare system. People with a neurodegenerative condition like Parkinson’s should not have to fight so hard to get treatments they need. Even with all the research being done, and money being spent, Parkinson’s remains the fastest growing neurological disorder. It is still progressive with no cure. We are still having to fight to ban substances that we know cause Parkinson’s.    The scale has tipped for me this year. In 2025, I will spend more ...
Post a Comment
Read more

Are We Ignorant of the Toxic Facts?

I live in a lovely home in Orange County, California. My gated community is designated 55 and over, and the houses sell for well over a million dollars. Recently, I received an email from my HOA letting me know that one of the outdoor common areas was going to be refurbished and they were going to be spraying Lifeline Herbicide. The notice included the warning, "While the park will be taped off, we want to remind everyone to not enter the area for safety reasons."  After doing some research, I notified my property manager that the herbicide, whose active ingredient is Glufosinate-ammonium,  is  actually banned in over 30 countries due to health concerns.  I mentioned the increase in Parkinson’s cases and that researchers believe most cases are environmental in origin.  I said I was concerned that the toxins would get in our water supply and asked if there wasn’t some other way the task could be completed.  The response I got back was onl...
Post a Comment
Read more