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Getting Pumped!

  I finally got my Vyalev pump. Like anything else with Parkinson's, the road has been bumpy. I started in the clinical trial about four years ago. That only lasted a month or so because of the skin bruising, swelling and medication pooling. At the end of last year, the FDA approved the pump and recently Medicare started covering it. I was anxious to try again. So now I am on day 6 and here's the good, the bad and the ugly: I am having much less off time. I am still in the phase of getting my rate adjusted and anticipate that this will improve even more. On occasion, I still use my Inbrija to get me over a rough patch but I'm not using it much and I anticipate I will need to continue to have it on hand in the future because life with PD, well, life in general, is unpredictable. I have had some trouble with the medication pooling and my skin bruising and looking bumpy and swollen. Thankfully, there is an online community of wonderful people sharing tips and tricks for dealin...
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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....
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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...
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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 ...
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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...
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Can I Live on Lettuce and Water?

  Just when you think you have your dietary restrictions figured out, another doctor hands you a list of what you shouldn’t be eating.     To keep it simple, only drink water made from happy angel tears and eat dark, leafy greens grown in the blue zones protected by Jedi Knights trained in pesticide forcefield installation. #parkinsons #chronicillness #lifestylemodification #foodismedicine #chronicillnesshumor
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We Have to Make Wellness Happen

  As I inch closer to the eight-year anniversary of my diagnosis, it becomes clearer every day. If I want to continue to live well with Parkinson's, I must work intentionally at it. I need to figure out (with the help of my care team) what is needed and then do it. That might mean going to speech therapy. It might mean switching up my workouts or adjusting my diet (again). It definitely means that I will have to do some things that I don't feel like doing and if I want to stay well, I will need to continue this for the rest of my life (unless of course a cure comes soon). I have seen the result of hard work in myself and in many, many friends. Those who are putting in the effort are doing better than those waiting for something to happen.  We have to make wellness happen and it is hard to do every day. That is one of the reasons I think it is so important to be part of a community of others with Parkinson's. They are the ones who understand and the ones that can kick you in...
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