Expect the Unexpected

When you (or your loved one) were first diagnosed with Parkinson’s, did anyone tell you that the future was going to be full of surprises? Like...poof...surprise, that medicine that worked just fine yesterday, has stopped working today but never fear, it may work again tomorrow. Or...surprise, your toes have taken on a mind of their own and are now dancing to their own tune. Not all the surprises are bad. Did anyone tell you that you might become part of a community full of resilient, caring, and determined warriors? Did you ever imagine that at your age...whatever that age might be, you would be stronger than you ever thought possible and would be spending hours a week in the gym and enjoying it? One thing for sure that Parkinson’s has taught me is to expect the unexpected. The only thing I can do to prepare for the unknown is to educate myself. By doing this, I am better equipped to handle whatever comes my way.

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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...

Big Dreams Not Happening

If only we could live in a world where everyone put their innate talents and gifts together and worked to solve problems, we might have a world with less illness and suffering. It would also be a world with less multibillion dollar companies. I understand that people need to make a living and I also understand that competition between companies can sometimes spur new thought and development of ideas. I understand the need for regulations and standards for safety. I understand that all of this costs money. But when you are living day in and day out with a degenerating illness that has very few treatments, and no glimpse of a cure, you really don't give a darn about any of that. You just want to get better. You want to be able to trust that you are being given the best advice about the best treatment and you don't have time to wait for it. I will continue to dream about my ideal world but I expect that it will just stay a dream....

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 ...

Rock Steady Fighter

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