Rock Steady Fighter

  Lessons learned from my recent ER visit:   • Lesson #1 Remember that the medical staff likely knows little about Parkinson's. Try to have patience when they tell you to "STOP MOVING!" to put in an IV. I promise you, if I could have stopped moving, I would have. A lesson for the staff: Stress makes Parkinson’s symptoms worse. Even in high pressure medical emergencies, patience and compassion go a long way and result in less bruising. • Lessson #2 Be your own advocate. Don’t hesitate to ask questions, remind people you have Parkinson’s, or ask for things to be repeated. Patience is required on both sides in these situations, but is often in short supply, when you or a loved one are hurting. Remember, you and the staff have a common goal: to get you treated and out of there as fast as possible. • Lesson #3 Be proactive and trust your instincts. In my situation, I was told me to “follow up with my gastroenterologist.” Urgency was not stressed. I knew so...

After my recent emergency medical visit, I realized the importance of having a “Go Bag.” This is a bag filled with the things necessary for a hospital visit whether planned or an emergency.     My recommendations for a Go Bag are below.   ·        Fill out the pages in your  Hospital Safety Guide   ( today…don’t wait for an emergency ) and highlight sections that are important to you. You can download the guide for free from the Parkinson’s Foundation or order one at no charge ( https://www.parkinson.org/resources-support/hospital-safety-guide ) ·          Make sure your medication list is current .  My medication list is long and changes regularly, so instead of writing it in the guide each time, I keep a list of meds on my computer. I print it each time there is an update and staple a copy into my safety guide and give my husband a copy just in case. I also write the date on the li...

It has been almost ten years since my Parkinson’s diagnosis.     I have worked hard at staying well.     I exercise, watch what I eat, stay connected to friends, and spend time helping others do the same.     I have watched hundreds of webinars and talked to dozens of groups. ChatGPT told me that it is generally accepted that when someone studies a subject for 10,000 hours, they are an expert.     I have had Parkinson’s over 85,000 hours (ChatGPT did the math too). I guess that makes me an expert…at being a Parkinson’s patient at least.   A couple of weeks ago, I made a rookie mistake.  I ended up in the ER in the middle of the night. I woke up with severe abdominal pain. Before leaving for the hospital and as I was lying on the bathroom floor, I was yelling at my husband to grab this medication, and that medication, grab supplies for my Vyalev pump,  make sure to get my insurance cards.   After arriving in ...

  Anytime PMD Alliance comes to town, I am happy to jump in and help.  I have been an ambassador for them for over 7 years now. Recently, Parkinson's Orange County (POC) partnered with PMD Alliance for a Community Connection event hosted at Capriana Senior Living in Brea.  The event included a networking reception on Friday evening, followed by a full day workshop on Saturday.  Not wanting to travel back and forth from South OC, my husband, Jeff, and I stayed the night in a local hotel.  The weekend started out great at Friday's reception.  I was back at my hotel and in bed early so I could be back at Capriana in the morning with plenty of time to unload my car and get our vendor table set up.  Since I was staying in Brea, I had assured Erin Angelo, POC's Executive Director, that I could get there before her, so I had all our supplies in my car.   As many of you know, Parkinson's often throws a wrench into the best laid plans, I woke up on Saturda...

In a perfect world, a person with an illness or a disability would easily be able to get needed services and treatments. We do not live in a perfect world and often the healthcare system is littered with red tape. Patients or their care partners are tasked with jumping through hoops, waiting countless hours on hold with pharmacies or insurance companies, and waiting months to see specialists. I wish I had the solution to this problem but unfortunately, I only see it getting worse. You need to be an advocate for yourself.   Here’s what has helped me: ·        Be persistent, be firm and be polite.  ·        Call often.  A squeaky wheel gets attention. ·        Stay on hold.  It is frustrating but sometimes it is the only way. ·        If someone doesn’t have the answer you need, ask to speak with someone who does.  ·   ...

I jest.  You have to keep a sense of humor when you are living with a condition like Parkinson's.  I am actually very thankful for new treatments even if they aren't pink and pretty.

Closing in on two weeks with my pump and we have already had some wonderful times together. And we have had some really not so great times. I have had a couple of days when that old feeling of "normal" peeked around the corner and made a swift fly by. I have had many days of frustration, symptoms that won't stay under control, injection sites that burn and sting, skin that is swollen and sore. Those moments of near normal are enticing enough to put up with the bad side so far. Near normal is such a very good feeling. I am still early on in the process and have lots to learn. Praying the good times increase and the hard days be tolerable. Near normal...I'm coming after you.   #fueledbyvyalev   #vyalev   #parkinsons  

  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...

 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....

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...

  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 ...

  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...

  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

  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...

When you sleep straight through the night, you would think it would be nothing but a good thing. Parkinson's is selfish and can't just let a good thing be good. Going that long without meds makes for a morning of tight muscles, curling toes and tremors to set off the richter scale. Don't worry, once your meds kick in, you will feel better but your meds schedule is blown for the day along with your eating schedule because you slept through breakfast also so who knows what Mr PD has planned for the rest of the day. Hopefully you like surprises!   #parkinsons   #parkinsonsdisease   #movementdisorder #parkinsonsawareness   #parkinsonsblog  

  We had a very rainy, cool winter in SoCal this year. So much so, that I was getting a little tired of the rain and gloom. But I knew this would happen...summer strikes, we get temps in the 80's and 90's and I melt. Temperature extremes are a real bugger to deal with when you have Parkinson's. I hydrate, use cooling towels, even wear a personal fan at times and yet...I sweat. If you need to find me before October, I will be hanging out in the A/C somewhere.  #parkinsons   #dailyridewithpd #parkinsonsdisease

  Today brought us another exciting headline: "Scientists Discover Drug Already Approved by FDA May Slow or Stop Parkinson's."  Yippee, Yahoo, right? The reality is that it has only been tested in mice and "there is more research to be done." The research results will likely be many years away. I already feel like a lab rat using the current medications and treatments as doctors often admit, "we don't really know how it works." How do we speed up the research process? Too many people are suffering while waiting for treatments to get approved.   #parkinsonsresearch   #parkinsons   #scientificresearch #labrats   #frustratedmouse

                      It’s been almost eight years since I heard those four words…you have Parkinson’s disease. Back then, I heard doctors and researchers say that there was more research being done than ever before and they were hoping for a breakthrough treatment in the next 5-10 years.     Well, that 5-10 years seems to get pushed down the road a lot.     At first, I was encouraged but it gets harder and harder to hear it.     One of the issues with having a lot of friends with Parkinson’s is that you lose a lot of friends with Parkinson’s. Not all of them have 5-10 years.     Especially on the tough days, we hang on to the slightest sliver of hope that some clinical trial is going to show significant positive results in stopping the disease or even maybe reversing it.     Even when a trial shows some good results, it takes many years to get through the clinical trial process and ...

I was never much of an athlete so when I found out that I had to exercise to stay well with Parkinson's, I was dismayed. Sweat and I never got along and still don't. Why can't Parkinson's be beat by eating M & M's? That sounds like much more fun. When I realized what a difference exercise made in my quality of life, I was sold. Intense exercise had to be part of my life like it or not. In fact, it helped so much that I wanted to help others realize it, and I got certified to help coach at the gym. I was feeling like a bad ass and that attitude has served me well.  My Parkinson's has progressed over the past seven and a half years, although slowly, and some days can be pretty rough. I still find that calling out that bad ass chick inside me helps get through the tough times. I may have many more years to deal with Parkinson's so I hope that bad ass chick sticks around. My dear, sweet husband made this design and put it on a shirt for me. It is my reminder...