Low-T Update

Hi folks. I promised some time ago to update everyone on the possibility of Low-T due to Parkinson's. I've seen the urologist and here is my prognosis. As I stated last time, I'll be divulging some personal information in this post. Nothing graphic, by far, but I will be discussing sexual feelings. So if that is an uncomfortable topic for you, you may want to pass on reading this.

I went to see the urologist, we discussed the situation in some detail. He finally said there are two things that would potentially eradicate any feelings and functioning of sexual satisfaction: low testosterone being one of them. The other was a hormone that affected feelings more directly. If that was low, it could also cause a problem. So, he ordered me a blood draw to test for both conditions. However, he said while low-T could affect feelings, it wouldn't necessarily affect erectile dysfunction.

So I had my blood drawn and it was sent off for testing. It came back and it had normal amounts of both hormones for my age. Now it appeared I was back to square one. However, the urologist had said something that gave me and him a clue. Because the recommended treatment for being low on the hormone (sorry, I forgot the name of it, but I recall it started with a P) that can more directly affect treatment was, get this, a dopamine-agonist! He said if that was the problem, he could prescribe me a low dose of this dopamine-agonist that I had never heard of or taken. Since I had a normal level of the hormone, then the urologist didn't prescribe it for me.

But it got me to thinking that dopamine may have something to do more directly with the lack of feelings. The fact that I hadn't needed to take any medication to control my tremors, thanks to DBS, left me dopamine depleted overall, only living on whatever my brain was able to still produce, which was obviously not very much.

And, I had not attempted to try a dopamine-agonist to help my low dopamine problems, which extended to more than lack of sexual feelings. I had been having problems with my drooling, and my voice had grown softer, mainly due to feeling like I was attempting to talk through a mouth full of cotton. (I know, I know. There are exercises I can do for that.) But I chalked this up to the lack of dopamine as well.

So, I decided that I would give a dopamine-agonist a try, being that it wasn't know to give people dyskinesia like levodopa does. I talked to my neurologist about it and he prescribed the same dopamine-agonist (being I already knew I could tolerate that one) that I had used before DBS. Amazingly, not only did my drooling lessen significantly, and my voice grew clearer (still have some issues with feeling like I have to yell to talk normal, but it significantly became better), but sexual feeling returned as well, to a degree.

Apparently, dopamine is involved in more than muscle control. I know, I can hear many of you thinking, "Well, duh. It is also involved in the reward system." Yeah, I knew that. However, I had picked up from somewhere that the reward system was separate from the actual feelings. The dopamine reward system goes something like this. You experience a pleasure, both sex and drugs do the same effect, the dopamine system tells your brain, "This is very desirable. You should want more of this in the future! Like, NOW!" This then convinces your will to accede to its demands, and it starts the reward cycle all over again. However, I had read somewhere that having more dopamine didn't equate to having the feelings which set off that reward cycle. Thus, up to this point, I had never considered that my lack of dopamine might factor into my sexual feelings.

But apparently that is the case in my situation. Exactly what the reason for that is, isn't clear. However, dopamine is involved as a neurotransmitter in the brain. It has many functions in that capacity, from sending signals to move a muscle, all the way to what a particular pleasure feels like. I know it can't generate pleasure, but it has the ability to identify some feeling as a pleasure by triggering certain synapses in the brain. That could magnify the sense of that pleasure. At least, that is one theory I have. Unproven as it may be, it at least has the sense of logic to it.

Then I had another idea. When I took the full 100 mg pill of levodopa, it barely gave me some dyskinesia. That should mean that I could tolerate a half dose of it with no dyskinesia. So, I tested it out by taking some older pills I had from Oct 2017. I knew they may not be as potent as fresh, but for the test, I figured it would work. I took 50 mg of levodopa 3 times a day, and again I noticed additional improvements in the non-motor symptoms I mentioned above. So I contacted my neurologist, told him what had happened, and he prescribed me a fresh set of pills of levodopa.

So the gist of where I'm at is that I've had feeling return as a result of increasing the amount of dopamine in my system. I don't have low-T, which is good on not having to have an infusion of that for every two weeks for the rest of my life. So I'm currently happy that my situation has improved in that regard and in other ways. And I still have the benefits of DBS, in that I don't have any dyskinesia, nor the ups and downs of medication on/off times. As a matter of fact, I find it is easy to forget to take my meds because I don't have worsening symptoms to remind me to take them.

I hope this can help others figure out what works for them, and other options. Of course, my experience may not be yours. Be sure to consult with your doctor about any of these issues. But the above is my experience, for what it's worth.

PD is Low-T

Howdy, everyone. I'll get to the bulk of this post right after I update everyone on how things have gone so far. I'll try and keep this part short. No, I'm not going to go over anything here but PD progress.

I recently had a visit with my new Movement Disorder Specialist. His name is Dr. Aaron Haug (I believe I've spelled that last name correctly). He appeared to be an attentive and knowledgeable doctor, and personable as well. I think we'll get along just great. At least as far as first impressions go. We went over my account of my medical history, correcting a few things that someone was wrong in it, like which side it started on. (It had the right side, when it was my left arm that started tremoring, though what might have been confusing is my right side ended up surpassing my left in its degree of tremors.) I like him so far. One of the things I feared is whether he was the trusting kind with my DBS settings. My former neurologist gave me a fair amount of leeway in allowing me to adjust my settings. I was afraid this doctor might be more restrictive than that. But he wasn't, he was fine.

He appeared to understand where I was coming from, and why I no longer took any medications. That's because the few times I've taken some levodopa, one pill, I had a slight return of my dyskenisa. Nothing most people would notice, but I could feel the old familiar pull on my neck. Apparently I'm very sensitive to that aspect, so I'm very thankful that the DBS works so well.

The rest of the update will be in the following article that I will go to now, about low testosterone in men with PD. Note: this does get into a more personal issue. Nothing graphic, but does involve a more personal matter. If that bothers you, don't read it. You have been warned!

One of the issues that many face when they get PD is a declining libido. However, I had not specifically had that problem. Yes, my libido had declined a little since I'd started showing PD symptoms, but I was still able to "function" around 50% to 70% of the time, depending on what else was going on.

Then, once I had my DBS put in, everything down below simply stopped working. At first, after some research, I figured I would need to wait around nine months and see where I was at. For those that haven't read/watched my DBS posts, it takes around three to six months for the swelling in the brain to go down. I found a study on sexual satisfaction after DBS, and it was around half who thought it improved, and half that thought it declined. Uh, I would be in the latter half by nine months out, the earliest the study would take someone. Apparently, they wanted to make sure that the people they took were around a minimum of three months of settling down after their brain swelling should have resided.

At the time, I thought, "Well, I'll just wait until nine months to evaluate this situation again. Meanwhile, I was prescribed generic Viagra to help, which it did, but not enough to "finish the job."

On top of that was my difficulty initially (and still exist, though not to the degree it did in the first six months) coordinating my movements. When nine months were up, I realized my situation had not really improved significantly. Some, but nothing that put things right again. So I figured it was due to that inability to control my movements, which my previous neurologist said made sense. So I continued on, trying to add levodopa back into the mix some, which didn't really improve things much, and like I said, sort of gave me a low form of dyskenisa.

So i had pretty much given up by that point. Figured this was the way things were. And I would gladly give that part of my life up if required to have a better quality of life in other areas.

Then one day recently, something made me wonder about testosterone. So I started to do some research, I typed into the search engine, "Parkinson's testosterone" and came up with some articles that described that PD often resulted in a lower testosterone levels in men than in control groups about the same age.

Then it hit me. "What if I have low testosterone?" So on that hunch, I did another search on "levodopa testosterone," and pulled up some articles that confirmed my suspicions: that levodopa helps raise testosterone in PD patients. Suddenly, it all made sense. I regularly took levodopa up until, I had DBS! Once I lost that extra dopamine flying around in my brain since DBS had taken over, my testosterone had dropped as well. I didn't have that much dopamine up in my brain any longer. Apparently, dopamine is one of the keys in the production of testosterone.

So, I've contacted my neurologist to refer me to a urologist to test that, as well as any other reasons I might be having problems. Of course, if I do have low testosterone, it could mean getting a shot every 2 weeks for the rest of my life. Ug. That is, unless my insurance will pay for the much more expensive gel drug and such. I have yet to go to the urologist, he/she hasn't even called me yet to make an appointment. So I'll try and get on here and report any diagnosis I end up with once I find out what that is.

At any rate, that might help someone who reads this and is having the same problem. Thanks for reading and I'll be back!

Time for an Update!

I know I'm overdue for an update for friends and family. I'm sure people would like to "see me" in a video, as that would tell more how I'm doing than I can describe on a blog post. Unfortunately, being we're staying with my daughter, there isn't a good place for me to create that video. So, this will have to do for now.

So, how am I doing?

Well, pretty good, overall. I know, I know, you were hoping for more info than that.

So I'll dig into the particulars.

DBS

So far, the DBS (Deep Brain Stimulation surgery) is still controlling my symptoms without any help from medications. That is, over a year later, I'm still medication free! I can still type well, though I'm feeling a little more resistance in my left arm due to the dystonia I have there. But not so much that it is affecting my typing a lot.

As a result, I'm still going full bore on writing. I currently have four books finished that I need to finish editing on and get published. The closest one that is ready, will be published any day now, is the fourth and final book in my Virtual Chronicles series, Reality Game. I also have another science-fiction title in the editing process: Rebellion. Additionally, I have two non-fiction titles: Healing Infidelity Through Faith, and Looking Into the Orthodox Church that are in editing. Probably the other three will come out early next year, except for that last one since I'm planning on submitting it to a publisher. They always tend to take more than a year to process anything once they've agreed to publish something.

I'm currently writing another science-fiction book as well: Deep Brain Invasion. I intended to get that done for National Novel Writing Month, which was this past month, but I got sidetracked into other projects and didn't finish it. That said, I seem to be getting more done without a schedule or time limits or other factors that NaNo provides. So, I'm still writing that book and should finish it early next year, probably will be published sometime late next year or early the following year.

So, yeah, my DBS is still operating as expected and I'm still happy that I had it done. I'm so, so glad to be off my medication roller coaster!

Diet

My plant-based diet is still working great. Plenty of energy and such. I do tend to take a nap in the afternoon, but I've been doing that since my DBS, so I attribute that more as a side-effect of the surgery rather than any lack of energy on my diet. The reality is that my diet provides me plenty of energy as long as I keep eating enough calories to keep my weight up. That was a challenge when I was on the keto diet as well. I'm clocking in around 153 lbs. currently. My lowest weight was around August of last year on the keto diet: 147 lbs. So I appear to be doing okay on that front at this time.

So can I tell whether the plant-based diet is helping my symptoms or not? Well, as far as I can tell, I feel pretty "normal" most of the time. I might be progressing a bit, in that I've had to turn up both sides one "notch" on my DBS once this year. But that would be minimal, I think. So it appears my progression is on a slow-track so far. As to whether the diet is helping with that, I can't say for sure (especially without any control groups to compare against--the Doctor would be helpful for that . . . yes, I'm talking about that Doctor, as in Who), but according to all I've read, it should be helpful in at least slowing progression. The gut health has a lot to do with Parkinson's symptoms, and I can report that my stools have been pretty normal and healthy, which would indicate that it is helping my PD symptoms in other areas.

One symptom that has always been a problem and still is, probably because it is one of those non-motor symptoms that DBS isn't supposed to help, is my chronic runny nose I've had ever since the first PD symptoms showed up. I must use around 50 tissues a day. Being indoors seems to make that worse, which I am indoors most of the time. So, I have this chronic runny nose issue still. Even after seeing my doctor about it and having a nasal spray prescribed. Well, if that is the worst thing, I'll survive.

TUCDA

I now have a confession to make. I haven't been taking this medication since I had DBS. I know I said I was going to do so, but it was hard to remember to take it three times a day without the regular medications to remind me, that I kept forgetting. Now that our income has changed with the move to Colorado, we simply wouldn't have the money to keep up with it anyway. As I indicated above, I've not discovered that my PD has progressed that much so far this year. Whether that would have happened no matter what, or whether the plant-based diet has slowed progression, who knows?

Anywho, I am sorry that I wasn't able to keep up the experiment, though it would have been difficult, if not impossible, to tell how much of an effect it would have had. There are simply too many factors to account for in my situation to know what has caused my slow progression to date: DBS? Diet? Exercise? ????

But I am very thankful that my symptoms have slowed down, whatever the cause, from the breakneck pace they were on for the first two to three years.

Exercise

Since getting my DBS done last year, the amount of exercise I was getting went down. Not totally gone, by any means, but the amount I was getting wasn't up to my pre-DBS standard. Not sure exactly why that was. Maybe because I now could write more, I spent more time doing that, and other things I wasn't able to do as often as before? I know the amount of window cleaning jobs I received was eating into my gym time, but that was its own form of exercise as well. You try holding a 30 foot pole in place for several hours and see how in shape you are!

Now, I thought moving to Colorado would get me back into the gym more. Why? Because I was fortunate enough to snag a job at the local YMCA here to do Zumba Gold classes. I went through their process and did all the training, But I wasn't scheduled for any classes. When I checked with the boss, she wanted to make sure I could cue well. That is, she wanted me to be able to point out where I was going next with my moves. No problem, I thought. At most it might require some refining of what I was doing.

To make a long story short, I discovered that she wanted me to cue all my moves four beats before I did them, and she also said that I needed to simplify my moves into three basic steps per song, and do more verbal cuing. I've tended to rely upon visual cuing because my voice isn't very loud and it gets too complicated to do the verbal cuing at the same time. With around 3 to 4 months of practice, perhaps. But not any time soon. So, based on my learning style, she was asking me to rework all my songs, which would take a minimum of three months, into more simpler steps, and to cue four beats ahead of any move, which I didn't know how to even practice that.

Combined for the fact I don't currently have anywhere to work on that, I felt I couldn't do what she felt I needed to do that her students would need and expect in order to do these dances. So I told her as much, apologized, and told her I couldn't do it. I sent that email to her back around mid-November. I've not heard anything from her since. So, I won't be doing any Zumba classes. Also, no job at the YMCA as far as I know right now.

Which also means I won't be going to the gym on a regular basis, and mostly I've been holed up in my daughter's apartment, doing writing and such, Which does exercise the fingers, but that is about it. I'm thinking I need an alternate plan if I'm going to get my cardio in. I'm seriously thinking about using some dumbbells to lift weights in a cardio way on my own. Maybe. We'll see. Because I know how important cardio is for slowing the progression of PD. So in my mind, I shouldn't neglect it for very long.

One avenue is my Parkinson's group that I've attended once since I've been here. They have  some programs going on which they were interested in me doing some Zumba for them. We'll see if that turns up anything. Another option is the Parkinson's program at the Y, but is its own thing separate from the Y, that does cycling, is looking for instructors for that. Maybe. So I have options, just a matter of figuring out what I should do. I'll let you know how all that ends up panning out.

Move to Colorado

We've been here for over three months now in Colorado. Getting colder all the time. It has snowed like around four times since we've been here. Always, ironically, on a Sunday morning. Last Sunday was the first Sunday in a while that we've not had snow. Looks like no snow for the coming Sunday either. That said, of late our lows have been in the lower teens. And winter has yet to officially start, though we are getting closer.

We are still staying with our daughter and her family. We're all getting along fairly well, with minimal problems. But, we do want to get into our own place as soon as possible. We're hoping by January or February we'll be able to do that as long as the pieces fall into place.

Lenita is working at a job she seems to love: being the "Sample lady" at the local supermarket chain. They keep her quite busy and provides the biggest amount of our income at current. Though whether that along with my disability and the amount we're getting for selling the company is going to be enough for us to live on once we get an apartment is questionable. She still wants to get into childcare, her original plan. How that will happen, though, is the question.

All we really need is for my books to hit the big time! Have a movie made based on them, or something.

All in all, we are happy here. The scenery is beautiful and all as well. We've gotten some medical help that we didn't get in Texas. Lenita is on Medicaid as well as Nathan. I've got my Medicare. The only glitch is that Medicare doesn't cover much in the way of dental unless you buy a plan specifically for that purpose. I was on Medicaid for the month of October, because they put you on it when you apply, and then they took me off of it because I received too much money from my disability. While I was on it, though, I was able to get eight infected teeth pulled. She wanted to pull them all and give me dentures, but alas, they only supplied enough dental money for one year to pull those 8 teeth. But at least I got those done before it ended.

So we've settled in. We've both have our Colorado driver's license and plates. So no one knows we're from Texas anymore merely by driving behind us. They would only find that out when I talk to them in my Texas accent.

I should be going back to Texas soon, for a not very good reason, though. I will be flying down to San Antonio to stay with my brother and his wife for a few days because my other brother, number 2, Rob, is dying of cancer. He is currently in a nursing home. Whenever they schedule his memorial service, that's when I plan on going down there for a few days. Hopefully I'll have some time to go visiting.

Forgive any typos in this posting. I'm going to give it a once-over before posting. I've got things to do! See you later.