Rock Steady Fighter

  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....