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Wednesday, May 1, 2019

Parkinson's Awareness is Targeting the Wrong People

Today is May 1st and Parkinson's Awareness month is over. Many people around the world have taken time out of their lives to visit their city mayors, county supervisors, state and national government representatives to have April proclaimed officially as Parkinson's Awareness month. 

A few years ago, I was one of those eager people. Then I realized it was a waste of my time. Having politicians create a document does nothing to help those of us who actually have Parkinson's.


Does this help anyone with Parkinsons??

The same applies to writing Letters to the Editor. Who does it actually help?? Oh, if you mention that there is a local Parkinson's support group in your town, one or two people might find out something they didn't know. But if they really wanted to find a support group, all they had to do is Google "Parkinson's support group" and the name of their city. That's how I found my group. If your town doesn't have a group, you can start one yourself or join an online support group. The friendly folks at the Parkinson & Movement Disorder Alliance can help you. 

If you want to really know how to help people with Parkinson's, educate the health care people we have to deal with. Give scholarships to medical school students to choose neurology as a specialty. Then convince the top neurology residents to become Movement Disorder Specialists. Then give these specialists incentives to set up their practice in smaller towns and rural areas.

My blog is called Parkinson's Humor, but there is nothing funny about having to drive 200 miles and deal with big city traffic to see a Doctor who knows about Parkinson's. 

And it's not just the lack of quality neurologists that is a problem. Most primary care providers and non-neurological specialists know zilch about Parkinson's. It is up to you to educate them.   

So instead of visiting politicians and writing letters to the newspaper, I decided to try to get telemedicine for Parkinson's in Yuma, so we don't have to drive 200+ miles.

It took me six years, but I finally managed to get telemedicine in Yuma with a Movement Disorder Specialist based out of Phoenix. I reached out to several MDS' until I finally found one who was willing to give it a try: Maria Ospina MD. Then I did the local leg work, I went and found a local doctor who would allow use of his staff and office space. Now, several local Parkies see her via a computer screen right here in Yuma.    

And that to me is the best Parkinson's Awareness campaign there is. 

Now it's YOUR turn. 

Wednesday, January 23, 2019

YumaBev is a VIDEO star??

After almost two years of editing, the Lights, Camera, Action video my Wonderful Husband and I did about Medtronic DBS therapy for Parkinson's disease is finally available to be viewed. 

Click to play:


I had watched some of the other Patient Stories online and was expecting mine to be 1 or 2 minutes long. I wondered which parts of the hours and hours of filming they would use. A lot of what they filmed that day was a blur.

I remember talking about my DBS experience and how they kept having to stop because the landscapers were making too much noise outside. 

I remember laughing and being silly and talking about my Parkinson's Humor blog.

I remember circling around and around the hotel trying to get a good shot of me driving my bright yellow Chevy Sonic. 

But most of all, I remember being able to share my story in my own words, just like I do in my blogs.

I was expecting a 90-second video, instead they made an eight minute movie that tells the love story of me and my Wonderful Husband. Enjoy it. 

You can also find the video by searching Beverly's DBS Story on YouTube.

I'd love to hear your thoughts about it. Email me at yumabev@gmail.com

Clicking on the colored words will open a new window and take you to a different story or website. 

Monday, January 21, 2019

The Energeezer Parkie Will Need a New Battery...Soon

Several years ago, I wrote a story where I used rechargeable batteries as a way to describe what life is like with Parkinson's disease. Using my warped sense of humor, I changed the famous Energizer Bunny to the Energeezer Parkie. It thought it was a pretty good analogy. Once I had DBS surgery, my 'Parkie' battery was pretty close to 100% every day. 

I knew my Medtronic Activa-PC DBS generator battery would need to be replaced some day. The average lifespan is 3 to 5 years. Mine was six years old in October 2018. 

At the beginning of 2016, my battery level was 2.97v. At the beginning of 2017, my battery level was at 2.91v. At the beginning of 2018 it was 2.85v. It was averaging a drop of .06v a year, so I figured I'd have several more years until it reached the ERI (Elective Replacement Indicated) warning you get when it drops to 2.61v, I was wrong.

I had been in the habit of checking my battery level using my patient programmer about every three months. April was 2.83v and July was 2.81v, right on target. So you can imagine my surprise when I checked it at the end of October 2018 and saw that it was down to 2.76v.  

I started checking it monthly, then weekly and now daily and I wasn't liking what I was seeing. The amount of time between voltage drops was decreasing. 

As of today, January 21, 2019, it's now at 2.69v. That's a drop of .07v in less than three months. If the voltage drop continues to accelerate, I will get the ERI warning in a few months!!!

Jan 2019, battery at 2.69v

My neurosurgeon, Dr. Norton is in the same office as Dr. Bradley, my Movement Disorder Specialist and I have an appointment with her in mid-March. I have already contacted Norton's assistant because I didn't want to wait until March and then find out that he's going to be on vacation or something else that would make him unavailable. Norton's assistant said they could get me on his surgery schedule within two weeks, but I should call if I get the ERI warning before my March appointment. 

Looks like the Energeezer Parkie will soon be getting  a brand new generator. 

The generator won't stop working when the ERI warning appears. There's a built in cushion of time, it doesn't stop working until it gets to 2.20v.

If you have a Medtronic Activa DBS generator and don't know how to check it, click on the link above. You don't want it to suddenly stop working.

Clicking on the colored words will open a new window and take you to a different story or website.