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.
Wednesday, May 29, 2019
Friday, April 19, 2019
Another Day Goes By
Yep, its that time of the year again. April is here and so is Parkinson's Awareness Month.
Some of you probably think I forgot, but nay, nay! I haven't forgotten my annual poem I always do this time of the year. This one is a little different of a poem, that I pray ends on a happier note than at first it appears it will. See what you think!
--------------------------
Another day goes by
Another day closer to the end.
Another day goes by
Another symptom grows stronger.
Another day goes by
Another disability appears.
Another day goes by
Another dopamine-cell dies.
Another day goes by
Another day to be alive.
Another day goes by
That I can spend with you.
Some of you probably think I forgot, but nay, nay! I haven't forgotten my annual poem I always do this time of the year. This one is a little different of a poem, that I pray ends on a happier note than at first it appears it will. See what you think!
--------------------------
Another day goes by
Another day closer to the end.
Another day goes by
Another symptom grows stronger.
Another day goes by
Another disability appears.
Another day goes by
Another dopamine-cell dies.
Another day goes by
Another day to be alive.
Another day goes by
That I can spend with you.
Friday, February 22, 2019
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!
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!
Saturday, December 8, 2018
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.
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!
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.
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.
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.
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.
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.
Saturday, October 13, 2018
The Dirty Secret
Today I've finally decided to discuss a dirty little secret, or not so secret as the case may be: constipation. I've been intending to write this article for some time, but it has been slow in coming. (See what I did there?)
A lot of people have this problem, but Parkinson's patients tend to be overly afflicted by it. I used to be and have a few solutions to tell you about how to deal effectively with this problem, whether or not it is due to Parkinson's.
I'm going to first discuss the basic problem, then am going to discuss the following potential solutions: The process, Diet, Supplements, Exercise, Medications, and DBS.
One of the more common "non-motor" symptom of Parkinson's disease is constipation. I put "non-motor" in quotes, because the reality is it is a motor system even though people don't think of it in that way. Your large colon is a muscle that pushes your solid waste down and out. But, being an automatic process that we usually don't think about, we don't tend to classify it as a motor symptom. But in reality, there are motor issues at play here that Parkinson's can affect.
But it isn't merely a motor issue either. Many Parkinson's patients are missing key bacteria in their gut that help to digest food. This can result in hardened stools. Getting the gut back in shape is one key component of dealing with PD constipation.
I've also read that PD can affect the smoothness and dryness of the colon wall. This will make it harder to move stools through the colon. I recall feeling that problem as well.
Most people who have constipation push with all their might to get it out. I've since discovered that this is counterproductive. Sure, it works sometimes, but it can cause worse and worse constipation as well.
Before I knew that bit of info, I would strain to push it out. My all-time record of sitting on the toilet and trying to get it out was a little over three hours. It was grueling. I was literally crying by the time it was over with in one big explosion. That was after cramming suppositories up there and all that. I feared at the time I would end up in the emergency room because I couldn't get it to budge, no matter how hard or how many times I pushed.
The problem with pushing hard is twofold. One, it puts stress on your internal organs. That can cause its own set of problems. Problems you don't want. Two, it can pack the stool into your colon in such a way as to exacerbate the problem.
The best process I've found is to: First, let your natural colon process take over and expel it on its own schedule. This is by far the best method and can make for the least stress on the body.
Second, if it needs a little help to get going, like when you feel the need to go, but it stops short of coming out, some moderate pushing is in order. What I've found works best is breathing deep with your stomach. That produces a natural shove and nudge of the stool. If you feel it is necessary, you can provide a moderate push at the deepest part of the breath. Nothing that will turn your face red type of pushing, just use as much as it may require.
Third, if it still doesn't come out, don't push with all your might. Sit there continuing to do deep breaths until you either expel the stool, or you are forced to give up and try again later. Whatever you do, don't push excessively in a straining manner as that will make it worse in most cases and you'll run the risk of damaging internal organs.
If after three attempts like this, it still won't come out, consider going to see a doctor.
Your diet plays a large part in what kind of gut bacteria you have. The types of bacteria you have in your gut are largely dependent upon what you feed them. So if you eat processed foods, the bacteria you'll tend to end up with are largely those that help breakdown sugar and fats. If you eat fiber rich foods, however, your gut will grow bacteria to process those types of nutrients.
It should go without saying if you eat a lot of fat and sugar heavy types of food, like meat, cheese, eggs, most processed foods, etc., that your constipation will get worse, not better. Take cheese, for instance, It is mostly a concentrated lump of fat. Around 90% saturated fat. I know from experience when I've eaten too much cheese in the past that I've had constipation problems. That was before I had PD. All that fat can gum up the works in your colon, especially if you are already prone to constipation by PD.
The type of diet that works best at reducing constipation is one that is starch and fiber rich. That means lots of bread, vegetables, fruit, and legumes of various types and forms. If you need to eat meat or meat products, and processed foods, serve them in very small portions and only occasionally. But it is best to eliminate them altogether. The more problems you have with constipation, the more strict you need to be with eliminating those foods. A plant-based diet will do more to correct your gut bacteria than most any other method.
Additionally, it is a good idea to stay hydrated. I usually drink plenty of water and other liquids each day. I tend to always have a water bottle full of water close by.
You can gauge how well you are doing based on the frequency of your bowel movements. Healthy individuals will have around one bowel movement a day. If you go two or three days without one, know that you are building up to a constipation episode and take preventative measures as soon as possible.
"But Rick, what about fiber supplements?"
Yes, they do help. When I had constipation on a regular basis, they were one part of my routine to help stave off that problem. All by themselves, they didn't do the trick, but they helped. Now I take them more for the B12 they contain than for the fiber. At any rate, if you can get your fiber from whole foods like I've listed above, you are far better off and will not need fiber supplements. That said, even if you are getting plenty of fiber from your diet, it won't hurt to add more from a supplement.
However, the most effective supplement I ever took for this problem was Magnesium. I took around 500 mg a day, which appeared to keep my stools soft enough. The only time I needed more fire power was when I was on Amatadine because that medication had the side effect of more constipation added on top of PD. However, magnesium was my primary supplement to fight against constipation. Also, it had the added benefit of helping my nervous system operate at peak performance.
The times I had the worst constipation was the days I forgot to take my magnesium for the day. There may be other supplements that work for other people, but those are the two that worked best for me.
"Aw, do I have ta?"
Yep, if you want to address the cause rather than just the symptoms. The colon, as I mentioned above, is a muscle. PD affects muscles, and it can affect the colon. It can interrupt the smooth movement downward of a stool. As PD progresses, it makes your muscles weaker due to the tremors and any dystonia affecting the muscle. The solution to this is exercising those muscles.
This was dramatically brought home to me back in 2015. In 2014, during our trip to Hattiesburg, MS from our home (at that time) in Marble Falls, TX, I was constantly stopping to use the bathroom. My bladder muscles had grown weak enough by that point that I frequently had a hard time holding it in. I had many close calls on that trip, and at least one or two misses. My need arose without warning and usually left me little time to find a restroom.
In Feb. of 2015, I had started to exercise regularly at the YMCA doing Zumba and Pilates. By the next fall when we left for Hattisburg, I had little problem and could go for quite a while before needing the bathroom. The reason? Mostly due to Pilates, because it works the core muscles. They got stronger, and therefore my bladder had more control. As a matter of fact, several of my muscles grew stronger during that period. I had several of my symptoms reversed because of it.
"But Rick, that's dealing with the bladder, not the colon."
Yes, but they are in the same area. It was harder to gauge the constipation. However, it was in 2014 I sat on the toilet for over three hours. I never had that bad of constipation since I've started exercising regularly, even when I took Amantadine. I know that it has been one of the things that has helped my constipation issues.
There are over-the-counter and prescription medications that one can use. The problem is that they can have side-effects and complications with other medications you may be taking. Be sure to check contradictions with other medications before taking even over-the-counter medications. By far, the best methods are the above ones, but in some cases that will not be enough and you may need more powerful methods. It is a good idea to check with your doctor before taking any additional medications, even over-the-counter ones. I personally have no experience with those, as I've never had need to use them.
DBS, or Deep Brain Stimulation, can help with constipation. It generally doesn't help non-motor symptoms, but as I've indicated above, the colon is a muscle that can be affected by PD, so there is some motor issues involved, even though there are also non-motor issues. All I know is currently, over the past year since my DBS surgery, I've had near zero problem with constipation. I am also doing the plant-based diet, so I know I'm getting plenty of fiber, but I no longer take magnesium and my stools and frequency of bowel movements are quite normal.
Now, am I saying get DBS to solve your constipation problems? No, there are other ways to deal with it. However, it could be one consideration in whether to get DBS or not. And I'm not saying for sure that it will solve it for you. It depends on why you are constipated and whether DBS will affect that or not. However, if it does affect it, it is one potential side-benefit of getting DBS.
That has been my experience with constipation to date. I'm sure as this disease progresses, I will deal with it again. But for now, I've conquered it using the above methods. Maybe it will help you too.
A lot of people have this problem, but Parkinson's patients tend to be overly afflicted by it. I used to be and have a few solutions to tell you about how to deal effectively with this problem, whether or not it is due to Parkinson's.
I'm going to first discuss the basic problem, then am going to discuss the following potential solutions: The process, Diet, Supplements, Exercise, Medications, and DBS.
The Problem
One of the more common "non-motor" symptom of Parkinson's disease is constipation. I put "non-motor" in quotes, because the reality is it is a motor system even though people don't think of it in that way. Your large colon is a muscle that pushes your solid waste down and out. But, being an automatic process that we usually don't think about, we don't tend to classify it as a motor symptom. But in reality, there are motor issues at play here that Parkinson's can affect.
But it isn't merely a motor issue either. Many Parkinson's patients are missing key bacteria in their gut that help to digest food. This can result in hardened stools. Getting the gut back in shape is one key component of dealing with PD constipation.
I've also read that PD can affect the smoothness and dryness of the colon wall. This will make it harder to move stools through the colon. I recall feeling that problem as well.
The Process
Most people who have constipation push with all their might to get it out. I've since discovered that this is counterproductive. Sure, it works sometimes, but it can cause worse and worse constipation as well.
Before I knew that bit of info, I would strain to push it out. My all-time record of sitting on the toilet and trying to get it out was a little over three hours. It was grueling. I was literally crying by the time it was over with in one big explosion. That was after cramming suppositories up there and all that. I feared at the time I would end up in the emergency room because I couldn't get it to budge, no matter how hard or how many times I pushed.
The problem with pushing hard is twofold. One, it puts stress on your internal organs. That can cause its own set of problems. Problems you don't want. Two, it can pack the stool into your colon in such a way as to exacerbate the problem.
The best process I've found is to: First, let your natural colon process take over and expel it on its own schedule. This is by far the best method and can make for the least stress on the body.
Second, if it needs a little help to get going, like when you feel the need to go, but it stops short of coming out, some moderate pushing is in order. What I've found works best is breathing deep with your stomach. That produces a natural shove and nudge of the stool. If you feel it is necessary, you can provide a moderate push at the deepest part of the breath. Nothing that will turn your face red type of pushing, just use as much as it may require.
Third, if it still doesn't come out, don't push with all your might. Sit there continuing to do deep breaths until you either expel the stool, or you are forced to give up and try again later. Whatever you do, don't push excessively in a straining manner as that will make it worse in most cases and you'll run the risk of damaging internal organs.
If after three attempts like this, it still won't come out, consider going to see a doctor.
The Diet
Your diet plays a large part in what kind of gut bacteria you have. The types of bacteria you have in your gut are largely dependent upon what you feed them. So if you eat processed foods, the bacteria you'll tend to end up with are largely those that help breakdown sugar and fats. If you eat fiber rich foods, however, your gut will grow bacteria to process those types of nutrients.
It should go without saying if you eat a lot of fat and sugar heavy types of food, like meat, cheese, eggs, most processed foods, etc., that your constipation will get worse, not better. Take cheese, for instance, It is mostly a concentrated lump of fat. Around 90% saturated fat. I know from experience when I've eaten too much cheese in the past that I've had constipation problems. That was before I had PD. All that fat can gum up the works in your colon, especially if you are already prone to constipation by PD.
The type of diet that works best at reducing constipation is one that is starch and fiber rich. That means lots of bread, vegetables, fruit, and legumes of various types and forms. If you need to eat meat or meat products, and processed foods, serve them in very small portions and only occasionally. But it is best to eliminate them altogether. The more problems you have with constipation, the more strict you need to be with eliminating those foods. A plant-based diet will do more to correct your gut bacteria than most any other method.
Additionally, it is a good idea to stay hydrated. I usually drink plenty of water and other liquids each day. I tend to always have a water bottle full of water close by.
You can gauge how well you are doing based on the frequency of your bowel movements. Healthy individuals will have around one bowel movement a day. If you go two or three days without one, know that you are building up to a constipation episode and take preventative measures as soon as possible.
Supplements
"But Rick, what about fiber supplements?"
Yes, they do help. When I had constipation on a regular basis, they were one part of my routine to help stave off that problem. All by themselves, they didn't do the trick, but they helped. Now I take them more for the B12 they contain than for the fiber. At any rate, if you can get your fiber from whole foods like I've listed above, you are far better off and will not need fiber supplements. That said, even if you are getting plenty of fiber from your diet, it won't hurt to add more from a supplement.
However, the most effective supplement I ever took for this problem was Magnesium. I took around 500 mg a day, which appeared to keep my stools soft enough. The only time I needed more fire power was when I was on Amatadine because that medication had the side effect of more constipation added on top of PD. However, magnesium was my primary supplement to fight against constipation. Also, it had the added benefit of helping my nervous system operate at peak performance.
The times I had the worst constipation was the days I forgot to take my magnesium for the day. There may be other supplements that work for other people, but those are the two that worked best for me.
Exercise
"Aw, do I have ta?"
Yep, if you want to address the cause rather than just the symptoms. The colon, as I mentioned above, is a muscle. PD affects muscles, and it can affect the colon. It can interrupt the smooth movement downward of a stool. As PD progresses, it makes your muscles weaker due to the tremors and any dystonia affecting the muscle. The solution to this is exercising those muscles.
This was dramatically brought home to me back in 2015. In 2014, during our trip to Hattiesburg, MS from our home (at that time) in Marble Falls, TX, I was constantly stopping to use the bathroom. My bladder muscles had grown weak enough by that point that I frequently had a hard time holding it in. I had many close calls on that trip, and at least one or two misses. My need arose without warning and usually left me little time to find a restroom.
In Feb. of 2015, I had started to exercise regularly at the YMCA doing Zumba and Pilates. By the next fall when we left for Hattisburg, I had little problem and could go for quite a while before needing the bathroom. The reason? Mostly due to Pilates, because it works the core muscles. They got stronger, and therefore my bladder had more control. As a matter of fact, several of my muscles grew stronger during that period. I had several of my symptoms reversed because of it.
"But Rick, that's dealing with the bladder, not the colon."
Yes, but they are in the same area. It was harder to gauge the constipation. However, it was in 2014 I sat on the toilet for over three hours. I never had that bad of constipation since I've started exercising regularly, even when I took Amantadine. I know that it has been one of the things that has helped my constipation issues.
Medications
There are over-the-counter and prescription medications that one can use. The problem is that they can have side-effects and complications with other medications you may be taking. Be sure to check contradictions with other medications before taking even over-the-counter medications. By far, the best methods are the above ones, but in some cases that will not be enough and you may need more powerful methods. It is a good idea to check with your doctor before taking any additional medications, even over-the-counter ones. I personally have no experience with those, as I've never had need to use them.
DBS
DBS, or Deep Brain Stimulation, can help with constipation. It generally doesn't help non-motor symptoms, but as I've indicated above, the colon is a muscle that can be affected by PD, so there is some motor issues involved, even though there are also non-motor issues. All I know is currently, over the past year since my DBS surgery, I've had near zero problem with constipation. I am also doing the plant-based diet, so I know I'm getting plenty of fiber, but I no longer take magnesium and my stools and frequency of bowel movements are quite normal.
Now, am I saying get DBS to solve your constipation problems? No, there are other ways to deal with it. However, it could be one consideration in whether to get DBS or not. And I'm not saying for sure that it will solve it for you. It depends on why you are constipated and whether DBS will affect that or not. However, if it does affect it, it is one potential side-benefit of getting DBS.
That has been my experience with constipation to date. I'm sure as this disease progresses, I will deal with it again. But for now, I've conquered it using the above methods. Maybe it will help you too.
Wednesday, October 3, 2018
Link Between Parkinson's and Tooth Decay
I went to the Dentist today (10/3/18). To put it bluntly, my teeth are falling apart. I was told today, that I have about five teeth that are worth saving, and even those were weak. The conclusion? To extract them all out for full dentures.
That prognosis caused my wife, Lenita, to ask when I started noticing the decay accelerating. I thought back, and it appeared to happen around the time my Parkinson's symptoms started appearing. I did a quick search on "Parkinson's and Tooth Decay" and came up with a series of articles. This scholarly article seems to put a definite correlation between the two. Indeed, another article talked about a study that compared tooth decay among differing types of neurological conditions, and the PD had the worst record of good health and healthy teeth.
So, I'm just saying, if you have or get PD in the future, you may want to pay special attention to your teeth and your dental hygiene. Your doctor is probably not aware of this information as there isn't a lot of studies done on this topic. It may be too late for my teeth, but not for yours.
My problem is finding the money to get this done. Could be a couple of years or more as we struggle to get back on our feet.
That prognosis caused my wife, Lenita, to ask when I started noticing the decay accelerating. I thought back, and it appeared to happen around the time my Parkinson's symptoms started appearing. I did a quick search on "Parkinson's and Tooth Decay" and came up with a series of articles. This scholarly article seems to put a definite correlation between the two. Indeed, another article talked about a study that compared tooth decay among differing types of neurological conditions, and the PD had the worst record of good health and healthy teeth.
So, I'm just saying, if you have or get PD in the future, you may want to pay special attention to your teeth and your dental hygiene. Your doctor is probably not aware of this information as there isn't a lot of studies done on this topic. It may be too late for my teeth, but not for yours.
My problem is finding the money to get this done. Could be a couple of years or more as we struggle to get back on our feet.
Monday, October 1, 2018
Year in Review with DBS
As of last Saturday, Sept. 29, was one year since my Deep Brian Stimulation (DBS). So I figured it was a good time to review the past year in relation to getting DBS.
It was a bit scary getting wheeled into the operating room. Waving bye to my wife, wondering if something went wrong, if it would be the last I'd see her. I know she was thinking the same thing. As they wheeled me down the hallway, I remember thinking, "This is my last chance. I could hop off this gurney and say I've changed my mind." But I didn't. Obviously. But I knew going in that though most of them go without a hitch, there is that small percent of a chance of hitting the wrong spot in my brain could cause a hemorrhage, and possibly death, or I could come out of it with severe brain damage. According to the statistics, around a 5% chance of it.
Thankfully, I wasn't one of those 5%. I even didn't get any infections or rejections. Everything went as smoothly as could have been expected. I thank God for his protection and guiding the surgeon.
And being on the table, knowing and feeling the pressure of him cutting into my head, and drilling through my skull, will be experiences I'll remember forever. While I know some come out of that surgery with PTSD, I was mostly curious and was paying attention to everything that was going on around me. Even when they probably thought I was under and out. lol. I recall saying to them at one point, "Should I be awake now?" As it seemed they were preparing to do some other surgical stuff that I would be out for. I even recall them debating about what route to take with the lead on the left side of my brain. One guy suggested putting a rod on my head to check if their new system was positioning it correctly. The head surgeon rejected that idea, thankfully for me. I wasn't too keen on getting a rod attached to my skull unnecessarily.
Of course, the recovery was slow going. It took a full six months as I slowly regained my balance, and abilities. At first, I was pretty wobbly due to having my settings turned up too high. All you have to do is go and look at the video on this blog I took shortly after my first setting and getting turned on. I had a real problem fixing myself lunch in the kitchen. One day, after bouncing off the counters and such, I had to give up. It was exhausting.
But after around four or five sessions with my movement disorder specialist, I finally landed on a setting that seemed to "work" for me. At least, it keeps me at a level I could manage. Except for when I did Zumba. That required a lower setting that barely controls my tremors, but is low enough that I can more adequately dance and play pickleball without my legs going crazy.
But the really cool things, is despite all that I've been able to do a lot more writing than I have in a long time. Since Sept. 29 last year, I've finished two novels I started working on and had partially completed, as well as compiling and writing a non-fiction work that I've tentatively titled, "Looking into the Orthodox Church." A book for inquirers into Orthodoxy. That's all in addition to some short stories I've written.
So I've been busy working on that. Also, I started a window cleaning business which was going well while we were in Marble Falls, but now that we are here in Denver CO, we are starting all over again. I've had one potential contact, but that's it so far. But, while in Marble Falls, I was doing around 5 to 7 jobs a month in addition to other jobs, like pressure washing driveways. And it was growing. Hopefully it will grow here too, once I start getting some clients.
Additionally, as several of you know, I will soon start my job at the YMCA here in Denver as a Zumba instructor. I've been patiently waiting for this to happen. Though it is nearing a full month since coming here. Long process, apparently. Anyway, I look forward to that. Not only for getting going in it, but we need the income!
So, I've been asked over and over again whether I would have done DBS knowing what I know now. And my answer has always been "YES!" Though there has been some difficulties here and there with it, the life it has restored in me is well worth it. Someday, my disease will progress to the point DBS is no longer effective, but my hope is with a good diet (as I talked about last post) and plenty of cardio exercise (which I'll be getting plenty of as a Zumba instructor), I can slow the progression down to the point where that will not happen for a few more years.
Stay tuned to this blog to find out what happens to me in the next few years.
BTW, I'm planning on doing NaNoWriMo (National Novel Writing Month) this November. First one I've done since 2010 I believe, 8 years ago. check out my writing blog for more news of that.
It was a bit scary getting wheeled into the operating room. Waving bye to my wife, wondering if something went wrong, if it would be the last I'd see her. I know she was thinking the same thing. As they wheeled me down the hallway, I remember thinking, "This is my last chance. I could hop off this gurney and say I've changed my mind." But I didn't. Obviously. But I knew going in that though most of them go without a hitch, there is that small percent of a chance of hitting the wrong spot in my brain could cause a hemorrhage, and possibly death, or I could come out of it with severe brain damage. According to the statistics, around a 5% chance of it.
Thankfully, I wasn't one of those 5%. I even didn't get any infections or rejections. Everything went as smoothly as could have been expected. I thank God for his protection and guiding the surgeon.
And being on the table, knowing and feeling the pressure of him cutting into my head, and drilling through my skull, will be experiences I'll remember forever. While I know some come out of that surgery with PTSD, I was mostly curious and was paying attention to everything that was going on around me. Even when they probably thought I was under and out. lol. I recall saying to them at one point, "Should I be awake now?" As it seemed they were preparing to do some other surgical stuff that I would be out for. I even recall them debating about what route to take with the lead on the left side of my brain. One guy suggested putting a rod on my head to check if their new system was positioning it correctly. The head surgeon rejected that idea, thankfully for me. I wasn't too keen on getting a rod attached to my skull unnecessarily.
Of course, the recovery was slow going. It took a full six months as I slowly regained my balance, and abilities. At first, I was pretty wobbly due to having my settings turned up too high. All you have to do is go and look at the video on this blog I took shortly after my first setting and getting turned on. I had a real problem fixing myself lunch in the kitchen. One day, after bouncing off the counters and such, I had to give up. It was exhausting.
But after around four or five sessions with my movement disorder specialist, I finally landed on a setting that seemed to "work" for me. At least, it keeps me at a level I could manage. Except for when I did Zumba. That required a lower setting that barely controls my tremors, but is low enough that I can more adequately dance and play pickleball without my legs going crazy.
But the really cool things, is despite all that I've been able to do a lot more writing than I have in a long time. Since Sept. 29 last year, I've finished two novels I started working on and had partially completed, as well as compiling and writing a non-fiction work that I've tentatively titled, "Looking into the Orthodox Church." A book for inquirers into Orthodoxy. That's all in addition to some short stories I've written.
So I've been busy working on that. Also, I started a window cleaning business which was going well while we were in Marble Falls, but now that we are here in Denver CO, we are starting all over again. I've had one potential contact, but that's it so far. But, while in Marble Falls, I was doing around 5 to 7 jobs a month in addition to other jobs, like pressure washing driveways. And it was growing. Hopefully it will grow here too, once I start getting some clients.
Additionally, as several of you know, I will soon start my job at the YMCA here in Denver as a Zumba instructor. I've been patiently waiting for this to happen. Though it is nearing a full month since coming here. Long process, apparently. Anyway, I look forward to that. Not only for getting going in it, but we need the income!
So, I've been asked over and over again whether I would have done DBS knowing what I know now. And my answer has always been "YES!" Though there has been some difficulties here and there with it, the life it has restored in me is well worth it. Someday, my disease will progress to the point DBS is no longer effective, but my hope is with a good diet (as I talked about last post) and plenty of cardio exercise (which I'll be getting plenty of as a Zumba instructor), I can slow the progression down to the point where that will not happen for a few more years.
Stay tuned to this blog to find out what happens to me in the next few years.
BTW, I'm planning on doing NaNoWriMo (National Novel Writing Month) this November. First one I've done since 2010 I believe, 8 years ago. check out my writing blog for more news of that.
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