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Friday, May 31, 2019

Decisions, Decisions, Decisions: Rechargeable or Not?

When I had my DBS surgery for Parkinson's disease in October 2012, I had a choice of either a regular Activa™PC generator (the thing in my chest that controls the leads in my brain) that would last from 3-5 years or I could choose the rechargeable Activa™ RC with a 9-year lifespan, but it would require me to charge it up on a daily/weekly basis. 
Rechargeable on left, regular on right

I knew lots of people who had the regular one and most were getting it replaced every 2-3 years. I only knew one person with the rechargeable and she said the charging equipment was bulky and didn't even come with a cute carrying case (She has a great sense of humor too.) 

Dr Norton, my neurosurgeon recommended the regular one. He said you will get the newest technology with each replacement. So, I took his advice.  

Well, it's May 2019 (6.5 years later) and I will soon be facing this decision again. If I were to have replacement surgery today, I'd be getting the same technology that was available back then. As of today, there's nothing new for the patient from Medtronic, except the 9-year rechargeable lifespan has been increased to 15-years. I am told, however, that a new charging system, a new patient programmer and even a new regular generator will be coming to market soon. How soon? Your guess is as good as mine.

Can I wait? Maybe. 

While I wait and check my current battery status (2.57v) on a daily basis, I keep weighing the pros and cons of my choices.

The advantage of a regular unit like mine is you just forget about it for about 3 years and then you get a new one. Mine is over 6.5 years old, so mine lasted way longer than the average. There's no guarantee the next one will last that long.

The disadvantage, for someone as thin as I am, is that it really sticks out. 

This is my DBS IPG 

I am not a very vain person and just the fact that it shows doesn't bother me. What bothers me is that one top corner. 

IPG is sticking out 
Do you see how the skin is really tight in that one area? I worry that it may break through my skin one day. 

Close up of that corner

I must be very careful when buying shirts, there can't be any seams in that spot. The same thing goes for bras, the straps can't rub across that area. I have to carry my purse on my left shoulder or across my body from left to right. I have to be careful when I am in the right passenger side of autos because the seat belt goes right across that spot. 

If I want to give someone a hug, I have to watch out for glasses or cell phones in shirt pockets, purses hanging on their shoulders, sometimes even bulky jewelry can cause me pain. I even have to be careful about the position I sleep in. Sometimes I feel some discomfort in that spot when I am stretching my arms. I have to always be aware of it. 

I have held both choices in my hands, I have taken comparison photos. The rechargeable is definitely smaller and more importantly for me, thinner.

It's definitely thinner

And of course, now I know more people who now have the rechargeable unit. Some charge it daily, some twice a week, some less than that. Most agree the charging apparatus is bulky, especially if you travel often by air, which I don't. Most charge theirs when they are laid back in a recliner watching TV. It apparently just sits on top of the unit in their chest. This could be a potential problem for me because I prefer to sit up straight. I can't sit in a recliner, I find them very uncomfortable. 

The other advantage of the rechargeable is the now 15-year lifespan. This means less replacement surgeries and any time a Parky can avoid surgery, it's always a good thing.

To further complicate things, I could also replace my Medtronic device with one from Boston Scientific or Abbott, but I have ruled this choice out. I have a good relationship with Medtronic and am happy with the way my device works. Switching might cause problems. 

I still have some time to decide, but I am leaning towards the thinner rechargeable. Maybe one of the new devices will be ready soon. 

Help me decide, what do you think?

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.