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Monday, March 26, 2018

An Update of the Update of My Update

Here is the promised video blog containing my new choreography for Numa Numa Lei! Need I say more? Here's the vblog, v-dog. <g>

Friday, March 23, 2018

Overdue for an Update

Hi everyone. Yep, I've been busy of late. That's mainly why I've not put out a new update for a while. So I thought I would put up this brief update. No video, though I do have some video of me doing choreography to Numa Numa. And no, before anyone asks, it isn't me pumping my hands up and down and swaying back and forth, as funny as that would be to see. (New chair Zumba, anyone?)

Nope, this is real Zumba choreo that I created. I plan on revealing it at the Zumbathon.

Oh, you haven't heard about that? Well, let me fill you in as it is directly tied to the purpose of this blog.

First, what is a Zumbathon? It is a "marathon" Zumba dancercise in order to raise money for a cause. I'm hosting this Zumbathon at the Cottonwood Shores Community Center and Park: 4111 Cottonwood Dr., Cottonwood Shores, TX.

The "cause" I'm doing it for is to raise money for the Burnet County Parkinson's Support Group, to give them funds to do more programs and the like. Everyone who can come is welcome. There is a suggested donation (IOW, you don't have to donate, but put in whatever you are able) of $15.00 per person. It is scheduled to take place on 4/21/2018, from 2 to 4 pm. Come for the whole thing, leave early, or come late. Whatever you are able to do.

Leading the dances will be yours truely, Amanda Jaynes from the Burnet Y, and Meredith Jowers from the Rockport Y (formerly also from the Burnet Y too). In addition to us three, we may have a couple (or more) special guest Zumba leaders join us. So if you're in the area or can be on that Saturday afternoon, we'd love to have you come dance with us and support our cause!

Okay, so there is that. What else? Well, on my DBS progress, that is coming along nicely. I've become smoother in my motions more and more. The doctor told me it would take 3 to 6 months for the swelling in my brain to go down from the surgery. On the 29th of this month, it will officially be 6 months. So aside from some minor smoothing out of my motions, I guess this is about as good as it is going to get. How good? Well, I'll save that for the next video.

I've made some fine tuning of my settings recently, but am still not on any medications. I find it amazing still that if I turned off my unit, I would be a crazy shaking person. Instead, I'm typing right now about as smooth as I ever have.  And the cool thing is I'm this way all the time, every day! Sometimes I almost forget I have Parkinsons.

I did have one minor set back of late. Not even sure I should call it a setback as I don't know for sure if it affected me at all. I was going to change out a light bulb over the washer and dryer, which are in a closet area of a room in the house. So I set up the step stool and ascend it, only to have my head bump full speed into a door frame of where the doors would be if it were a closet.

It hurt, and I almost fell off, but instead ended up sitting on the bed (yep, the guest room is also our laundry room, weird house for sure). I waited to see if anything would happen. Upon feeling the top of my head where it hurt, I could tell I'd scratched it up pretty good. Luckily, it missed the spots where the appliances were installed, so no damage there. That would have been the worse case scenario, potentially requiring surgery to fix whatever might have been busted. The only other thing I  was worried about was potential swelling of that area of the brain. I haven't noticed any changes in my thinking or ability to move. So I think the fluid around the brain did its job in protecting it.

At any rate, I believed I dodged that bullet. I worry about what might happen if the appliances ever take a direct hit. Could even shift the leads enough to make them ineffective. I also scratch my head more where the wire goes down along the left side of my head. I worry if I could scratch enough that a hole appears and exposes the wire. I know logically that isn't likely to happen, but I still worry about it.

There are only two PD symptoms to date that DBS hasn't had any effect on. One, my runny nose. I had a constantly runny nose ever since the fall of 2012 when I first started showing signs of getting PD. I had a cold at the time, the cold ended but the runny nose didn't. And even though I've not had any cold since (thanks to the Vit C I take nearly every day, and the Zinc) my nose runs almost constantly. Some days are better than others, but I always have a box of kleenex next to me at my desk.

At any rate, this is a symptom that the drugs didn't even help with. The doctor at first thought it was allergies, but that medication didn't help relieve it. Then I ran across a study saying around 60% of PD patients also have runny noses. But it makes sense that this very non-motor symptom would still be there, being that DBS only helps with motor symptoms.

Some motorish symptoms, like constipation, I was also warned DBS might not affect. However, in that area DBS has definitely improved. I still take magnesium to aid in other areas, but I don't have any serious constipation problems anymore. Your mileage may vary if you have PD.

However, another motorish symptom hasn't been helped by PD. That is swallowing. Now, I do have pretty good swallows. My main area has been in taking pills where problems occured. Even that has improved some, and I usually now take them with Walnut milk, which has Omega-3 oils in them, which helps to not only provide more "slide" but also is thicker than water, so it makes the pills easier to swallow.

Where it is most evident, however, is in drooling. Everyonce in a while, I find myself trying to slurp drool back into my mouth. Doesn't happen all the time, so I guess normally it isn't a big problem. However, on occasion, it escapes! This is a symptom I know the carbadop/levadopa took care of. I could gage it I was overdue on my meds before on whether I would start drooling.

So the DBS has had some effect on that symptom as well. If it didn't, I'd be a drooling fool for sure. But it isn't 100% as good as the medications. I can hear my speech therapist saying, "Swallowing exercises." Yep, I need to do more of those to strengthen those muscles. I know that would help.

Other than those two things, however, I feel pretty normal most of the time. The only time it shows up more is when I'm playing pickle ball. I have it turned down as low as I dare to increase my ability to move smoother and play smoother, so the stress of playing often has my right arm tremoring somewhat. What they call "break-through tremors." But that happens to some extent (just not as bad) when it is up higher and I'm holding anything with my right hand. For some reason, that activates some tremors. If I'm not holding anything, it is steady. So since I'm holding the racket in my right hand, it would make sense that it would tremor somewhat. Once I start moving my right arm, though, it goes away.

Though I've wondered if that is also due in part to brain swelling. Mainly I say that because lately I've noticed at my regular setting, that it doesn't happen as much. I just picked up a pin and held it out, and no tremors. Before, it would have started tremoring. So that is some of the fine tuning that is happening as the remaining bit of brain swelling goes down.

On the cataract surgery side of things, nothing new to report there. I can still see great out of that eye. Good as new! Thank goodness.

The other news is the progress on my work. I probably mentioned that I started adding window washing to my wife's cleaning business back in December. Since then, work has gradually started to pick up. I just did a 2 hour job today. (Actually, yesterday as it is officially 12:04 am.) I did a full day job earlier this week, and a pressure washing job about mid-week. So work is coming in. Business is growing. I have an ad coming out in the local paper soon that is scheduled to run for 7 weeks. So that is likely to generate some extra work. It had better! I need that to pay for the ad.

Also, I'm zeroing in on getting two new books ready to publish, hopefully a fiction book by the end of the summer. It will be the forth and final installment of my Virtual Chronicles series. The first three are: Mind Game, Hero Game, and Virtual Game. This one will be Reality Game. The other one will be a religious non-fiction book that I hope to get published through a publisher,  called: Looking into the Christian Orthodox Church. It is basically a book designed for Orthodox inquirers and answers some of their questions. Very limited audience, I'll admit. But it is a book that has been on my mind to put together long before I started writing fiction in 2005. Figured I needed to get this out now if I was going to do it, since who knows how long I'll be able to write once the DBS isn't able to keep me stable enough.

So that's my "brief" update. Yea, yea, I know. Not so brief. But I'll have more, including me dancing on my next video when it comes out. Hopefully next week. Until then, imagine the unimaginable! (My favorite saying from my new book.)

Monday, December 18, 2017

My Parkinson's Journey: DBS and Cataract Surgeries Update

I've delayed getting  an update on my cataract surgery. Not because of anything bad happening, but just real busy it seems. So here it is, without further notice, here is my video!

Friday, December 1, 2017

I'm Doing Great So Far.

I've been doing great!

Just wanted to give everyone a heads up who has been following this blog. I can tell, so very slowly, that I'm getting more stable. Still doing steady enough and can type well enough, that I just finished around 25K words on my novel during the second half of November. Woot!

But still not quite good enough to do Zumba. But I can tell when I helped vacuum at a job the other evening, that wasn't quite as erratic in vacuuming as I was the time before. So there is some progress, however minor it may be. I was actually encouraged by a study on DBS. They wanted to see what people's experiences were before and after DBS surgery. The evaluated them shortly before their DBS surgery, but then waited between 9 and 12 months after their surgery before evaluating them again. Supposedly, by the time that rolls around, a lot of the getting used to it and settling down of the extremities should have happened. IOW, in around 6 months, when my doctor says is the outside time frame when I can expect to be back to normal, is when, well, I can get back to my normal life before DBS, except without the tremors!

I'm also going to have my cataract surgery on Dec. 13th. Two Wednesdays from now. I'm praying that I'm not one of the very few who end up with any complications. I know it chances of happening are pretty slim, and most come away from it seeing great, but there is still that chance. It may not be brain surgery (had it, survived it), but it is eye surgery. So pray that everything goes well.

That's the updates for now. I'll be checking back in with you shortly after the 13th.


Friday, November 3, 2017

My Parkinson's Journey: Post Deep Brain Stimulation Update

Hi. Time for another update. Some new news to report, as well as updating for old news.

Tuesday, October 17, 2017

My PD Journey: Week 2 of DBS Programming

After one week from, that place where the Devil shines, with my new DBS settings going crazy on me, I'm finally at a normal place since yesterday, returning to semi-normal, or about as close as I believe I ever could.


Sorry for yelling, but I'm so happy to be here!

On with today's video, so you can see for yourself!

Tuesday, October 10, 2017

My DBS Journey: Day 16 - Final Results, Success!

The title says it all. After going through two surgeries, today I get to experience the results, a success!

Thank you for your prayers and support.

Here's the video;