There is a lot I should update you all on, but I want to keep this posting focused, so I'll have to do a fuller update later. Sorry for the delay on getting these out.
As I originally posted back in June of 2015, I started doing Zumba classes around the beginning of March 2015. So I'm approaching year two with this exercise program. I really enjoy doing it. Many of the classes one goes to, you do it because you know you need to, but often you don't look forward to doing it. Yes, some do, I know, look forward to Body Pump. I like the benefits it is giving me, which is why I continue to do it, but I don't exactly look forward to stressing my muscles out.
But I do look forward to doing Zumba. I guess that's why I go to every class available at the gym. I re-watched the video on that original post, and realized how far I've come. I obviously had a good case of dyskinesia while I did that dance along with a tremoring/stiff left hand. My movements were small and not very defined. I think if we were to do another video of me doing that same dance, you'd notice an improvement as well . . . as long as my meds were working as they should. Sometimes, inexplicably, they just aren't as effective as they normally are.
Of course, some of the dances we do are more athletically demanding than others. A good example is one of my favorite dances to do, Uma Thurman by Fall Out Boy. The linked video is the same choreography we do, aside from a couple of small differences, including all squats and lunges. I personally like the more active ones, but you've got to have the others to keep people from falling over with fatigue. Zumba tries to have a more varied interval workout.
The downside of the more challenging dances, especially for people with Parkinson's who may be more advanced in their disease progression, or others who simply don't think they can do that kind of stuff because of difficulty in moving, or they have balance issues, is it discourages them from trying. Reality is one can do what they can, adopt modifications for their ability, on any of the dances. We have some in our classes who don't twirl because they'd lose their balance, or will do modifications for moves they can't do, like in the above video, instead of doing the double-lunge and bouncing into the air while switching feet forward and backward, and landing into another double-lunge, and continue that for however long it lasts; they will instead just step forward and back. We even have one man recovering from a stoke in our class who can barely move his feet much, out there doing what he can.
But, many become intimidated by such dances and decide they can't do Zumba because they don't ever think they could do what everyone else is doing. But there is a Zumba program, called Zumba Gold, which are a modified version of Zumba specifically for senor adults and those afflicted with restricted movement or difficulty in movement. Zumba Gold even has a Zumba Chair version for those with balance issues or are confined to a wheel chair. Problem is, at our gym, there is no one certified to teach Zumba Gold. As a matter of fact, I did an Internet search and discovered there is only one person certified to lead that class in the Texas Highland Lakes area. She's associated with another gym and is currently not holding any classes for Zumba Gold that I could find.
I thought it would be great if our gym could offer that program because I know there are those there who might take advantage of it who don't think they can do the regular Zumba class. As a matter of fact, I talked with a fellow gym goer with Parkinson's today who thought it would be great if they had such a class, because she did feel intimidated by the regular Zumba class.
So, what to do? I began toying with the idea of becoming a Zumba Gold instructor. I checked out what it would require, I think I even briefly discussed it with my wife. That was back in September (2016). However, I didn't mention it to anyone else. In part because I wasn't sure if I should or not. Could I, who can be off on my meds at times and have trouble moving correctly, lead a Zumba class? I could see myself bring it up to someone and them saying, "But Rick, you've got Parkinson's, you can't lead a class. Everyone will think the shaking is part of the choreography and try to follow you." Also, I know our gym requires two certified instructors available before they'll think about putting a class on the schedule. Even then, there is no guarantee they'll put it on the schedule. So I decided to give it some more time before revisiting the idea, maybe next year once the potential Deep Brain Stimulation surgery had been done.
Then, a few weeks ago, one of our Zumba instructors approached me as to whether I'd be interested in becoming Zumba Gold certified. Maybe my wife had mentioned my interest to her. If so, no one's confessed that she did. The instructor, however, is herself interested in becoming certified in Zumba Gold, knew they'd need another instructor to put it on the schedule, and thought of me. I was a little surprised to be directly asked about it, since I had secretly been considering the idea. It helps to have someone who is doing it, believe you can also do it, as she is fully aware of my limitations. So getting certified was back on the table.
Only roadblocks now revolved around the cost of getting certified. One, the class itself cost at least $300 if you register early enough. Two, all the current classes for that certification were in cities far away from Central Texas. So travel, hotel, and if I flew, car rental, would be a hefty sum of money for someone like me who is barely paying bills and medications, etc.
The cheapest option was the class in Orlando, FL. In large part because my wife's parents live there, so we could avoid hotel cost, which is a big one. After calculating the cost for two round-trip airline tickets and car rental while there, vs. driving my truck there, it came out substantially less expensive to drive. So I estimated my cost to become certified would be $300 for the class, plus an estimated $250 for gas, and throw in another $100 for food (food will probably be more, depending on certain factors, but some of that would be cost of food we'd eaten if staying at home that would be freed up).
That put the needed money to get certified around $650.00. The class in Orlando is on January 14. I knew it would be near impossible for me to come up with the extra money to pull this off, but hoped there would be enough support among friends and family to make it happen. So I set up a "Square store" to take donations for this cause.
As of 12/28/2016, $160.00 has been donated. (Thank you so much!) A little over half of what I need to pay the cost of registration. Due to some promised donations, which so far have not materialized so I'm stepping out on faith here, and the desire to get the reduced price of $300 for the class (it was going up to $320 on Saturday), I floated $200, since by then I'd already collected $100, and registered for the class.
So yes, by hook or crook, I'm committed to going on January 14 to be certified. The question now is will I at least collect another $140.00 to cover the cost of the registration, and will I get the rest before embarking on the journey to Orlando? Time will tell, but all I can do is get the word out and pray God will provide. I know many are in our situation and are unable to give despite wanting to. Thank you for your morale and prayer support. But if you are able and willing to help me, I encourage you to visit my store and donate whatever you wish. Thank you in advance.
Once I've reached my goal total, I'll take the donation item out of the store. I'll use the comment section of this blog to update everyone on the status of reaching my goal, so if you'd like to receive notice of that, subscribe to this post's comments using the link in the upper right corner.
Hard to believe this is happening, but it is. I'm excited, and look forward to what 2017 has in store for my desire to help others through Zumba Gold. Thank you.
Thursday, December 29, 2016
Friday, November 4, 2016
Unplanned Med Changes
New update on what's going on with my PD journey. Some eye trouble and a med adjustment to deal with it. Details on the video. Thanks for watching!
Friday, August 12, 2016
Medication Juggling
Finally getting an update on the blog. So much going on the last few months, it's been hard getting to it. But here it is, in case you've been wondering how I'm doing and what I've been up to lately.
Wednesday, May 25, 2016
Lots of New News
Been a while since I've updated you all on my journey to date. I've been needing to get on here and update everyone on what's happening for some time, but have been too busy to do so. Since I have a few moments, I'm seeing if I can slip it in here today. So lets get to it.
The biggest news is the Amantadine ER (extended release) trial. In case you've forgotten, last June my neurologist put me on Amantadine, in the hopes it might help my dyskinesia--a side effect of the levadopa medication used to control Parkinson's symptoms, which causes uncontrolled movements in many cases, of which I was one. Mostly for me, it was in the neck and left leg/toes. While the medication did have some positive benefits--reduced stiffness in the left arm and fingers, reduced off times on the levadopa--it didn't have quite the desired effect on my dyskinesia. It did reduce the peaks of dyskinesia that typically came around the 5th hour of my 6 hour dose of levadopa, but it also spread the dyskinesia in a minor to medium level through most of the dosage period of 6 hours, save about 30 minutes on each end. Each individual responds to medication in different ways, so you never know what you are going to get.
It also came with some decent side-effects: increased constipation, which I was able to control with fiber and magnesium, swelling of my legs, and sensitivity of my eyes to light--I had to buy prescription sun glasses to help with driving in bright sunlight. It was manageable, though the increased dyskinesia time was annoying even as not having the so high peak at the end was a blessing. A mixed bag overall. But I had kept on it because it did help my left arm and enabled me to type easier, which for me was a big benefit, being a writer and all.
If you've been a regular reader of this blog, you'll know back in December I signed up for a clinical trial for a new drug: Anantadine ER, an extended release version of the same drug I was on. In order to do that study, I had to get off of the normal Amantadine. In so doing, my PD symptoms became worse, so that I now had to take double the amount of levadopa I had been taking previously to get relief from the left arm stiffness and the tremors. Complicating that, I had some delays in starting the study due to some low platelet reading on my blood work, so had to get that checked out to make sure there was nothing bad going on. Turns out there wasn't, I just have a low platelet count. But it wasn't until some time in February that I was able to start taking the trial version of the drug.
Once I started taking it, I knew the first day I did not get the placebo. It caused the effect with my dyskinesia identical to the first day I started Amantadine last June. It spread my peak dyskinesia of around 30 minutes to last most of the 6 hour dose. Only since it was a higher amount--originally was on 200 mg/day, the trial dosage was either 250 mg/day or 350 mg/day, never found out which one I was on--the dyskinesia was more intense. As the study progressed, that seemed to increase. Likewise, my side-effects were there, but became worse. For example, the treatment I used to offset the constipation from the regular Amantadine was failing me a few weeks into the study. However, the peak dyskinesia was reduced significant and the left-arm stiffness was non-existent, as was any off times on the levadopa. My leg swelling seemed to be worse, and I was concerned it would get bad enough I'd have to stop participating in the study.
As it turned out, I didn't have to make that call. The pharmaceutical company funding the study decided to end the trial due to lack of participation. So as of the last couple of weeks, I've been off of the study drug and back on the regular Amantadine. For the moment I'm on half of my previous does of 200 mg/day. I'm hoping it will be enough without increasing it, but after a week (next Monday) I can increase it to 200 mg/day again if I need it.
The good news is the trial doctor is a Movement Disorder Specialist: a neurologist who specializes in neurological diseases that cause movement disorders like Parkinson's and Multiple Sclerosis. When the study was ending, she said she'd like to have me as a permanent patient. And knowing I didn't have insurance, she offered a special price for the visits, making it affordable.
That was a blessing on two fronts. One, everyone was saying I really needed to see a MDS rather than a general neurologist. I'd been trying to figure out how to initiate that since I'd need a referral from my current neurologist and he didn't seem to think an MDS was necessary. This made it simple. Two, my patient assistance at Scott & White is about to expire, like tomorrow, and thanks to my new disability payments, I'm pretty sure my income will be too much to allow me to qualify for it again, though I'll try. In which case, I'd have to pay over $250 for each visit to see my neurologists. So this means I can avoid that cost while getting to upgrade to a MDS doctor at the same time!
Additionally, it also means I'll now have an MDS who can help me get deep brain stimulation done when I'm financially ready. She's certified to do the programming once they've installed it in me. And a few weeks ago I asked her if I'd be a good candidate for it, and she said yes. So all I need is to get the funding for it, which will definately happen by March of next year when I'll be able to go on Medicare. So that's all good news.
Meanwhile, the MDS and I have laid out a medication plan. One, is to wean me off of Azilect. So I've reduced my dosage down to 0.5 mg from 1 mg. After a month on that, I'll go off it totally unless the dyskinesia goes away while on 0.5 mg dose. Then I'm going on 100 mg dose of Amantadine while continuing my 6 levadopa pills/day as I've done since late December of 2015.
The hope is cutting out the the Azilect will get rid of the dyskinesia since that's what started it and it has only provided marginal benefits for my symptoms anyway. And taking half of my original dose of Amantadine will reduce the side-effects to a more manageable level while still giving me positive benefits for my arm stiffness. Time will tell.
So far, I'm doing okay with it. I have periods of off time in the sixth hour, and recently I've had to take some extra levadopa dose before bedtime to be un-tremory enough to go to sleep. Otherwise my hands are vibrating under my pillow, keeping me awake. There is also some dyskinesia during the 5th hour of the dose, but it isn't as bad as previously, probably due to lowering the Azilect dosage.
That's the update for now. One last note. A good friend of mine has suggested setting up a FundMe account to get money for a DBS surgery sooner than next year. If that becomes a reality, I'll post the info about it on this blog, as well as other places.
Thanks for reading!
The biggest news is the Amantadine ER (extended release) trial. In case you've forgotten, last June my neurologist put me on Amantadine, in the hopes it might help my dyskinesia--a side effect of the levadopa medication used to control Parkinson's symptoms, which causes uncontrolled movements in many cases, of which I was one. Mostly for me, it was in the neck and left leg/toes. While the medication did have some positive benefits--reduced stiffness in the left arm and fingers, reduced off times on the levadopa--it didn't have quite the desired effect on my dyskinesia. It did reduce the peaks of dyskinesia that typically came around the 5th hour of my 6 hour dose of levadopa, but it also spread the dyskinesia in a minor to medium level through most of the dosage period of 6 hours, save about 30 minutes on each end. Each individual responds to medication in different ways, so you never know what you are going to get.
It also came with some decent side-effects: increased constipation, which I was able to control with fiber and magnesium, swelling of my legs, and sensitivity of my eyes to light--I had to buy prescription sun glasses to help with driving in bright sunlight. It was manageable, though the increased dyskinesia time was annoying even as not having the so high peak at the end was a blessing. A mixed bag overall. But I had kept on it because it did help my left arm and enabled me to type easier, which for me was a big benefit, being a writer and all.
If you've been a regular reader of this blog, you'll know back in December I signed up for a clinical trial for a new drug: Anantadine ER, an extended release version of the same drug I was on. In order to do that study, I had to get off of the normal Amantadine. In so doing, my PD symptoms became worse, so that I now had to take double the amount of levadopa I had been taking previously to get relief from the left arm stiffness and the tremors. Complicating that, I had some delays in starting the study due to some low platelet reading on my blood work, so had to get that checked out to make sure there was nothing bad going on. Turns out there wasn't, I just have a low platelet count. But it wasn't until some time in February that I was able to start taking the trial version of the drug.
Once I started taking it, I knew the first day I did not get the placebo. It caused the effect with my dyskinesia identical to the first day I started Amantadine last June. It spread my peak dyskinesia of around 30 minutes to last most of the 6 hour dose. Only since it was a higher amount--originally was on 200 mg/day, the trial dosage was either 250 mg/day or 350 mg/day, never found out which one I was on--the dyskinesia was more intense. As the study progressed, that seemed to increase. Likewise, my side-effects were there, but became worse. For example, the treatment I used to offset the constipation from the regular Amantadine was failing me a few weeks into the study. However, the peak dyskinesia was reduced significant and the left-arm stiffness was non-existent, as was any off times on the levadopa. My leg swelling seemed to be worse, and I was concerned it would get bad enough I'd have to stop participating in the study.
As it turned out, I didn't have to make that call. The pharmaceutical company funding the study decided to end the trial due to lack of participation. So as of the last couple of weeks, I've been off of the study drug and back on the regular Amantadine. For the moment I'm on half of my previous does of 200 mg/day. I'm hoping it will be enough without increasing it, but after a week (next Monday) I can increase it to 200 mg/day again if I need it.
The good news is the trial doctor is a Movement Disorder Specialist: a neurologist who specializes in neurological diseases that cause movement disorders like Parkinson's and Multiple Sclerosis. When the study was ending, she said she'd like to have me as a permanent patient. And knowing I didn't have insurance, she offered a special price for the visits, making it affordable.
That was a blessing on two fronts. One, everyone was saying I really needed to see a MDS rather than a general neurologist. I'd been trying to figure out how to initiate that since I'd need a referral from my current neurologist and he didn't seem to think an MDS was necessary. This made it simple. Two, my patient assistance at Scott & White is about to expire, like tomorrow, and thanks to my new disability payments, I'm pretty sure my income will be too much to allow me to qualify for it again, though I'll try. In which case, I'd have to pay over $250 for each visit to see my neurologists. So this means I can avoid that cost while getting to upgrade to a MDS doctor at the same time!
Additionally, it also means I'll now have an MDS who can help me get deep brain stimulation done when I'm financially ready. She's certified to do the programming once they've installed it in me. And a few weeks ago I asked her if I'd be a good candidate for it, and she said yes. So all I need is to get the funding for it, which will definately happen by March of next year when I'll be able to go on Medicare. So that's all good news.
Meanwhile, the MDS and I have laid out a medication plan. One, is to wean me off of Azilect. So I've reduced my dosage down to 0.5 mg from 1 mg. After a month on that, I'll go off it totally unless the dyskinesia goes away while on 0.5 mg dose. Then I'm going on 100 mg dose of Amantadine while continuing my 6 levadopa pills/day as I've done since late December of 2015.
The hope is cutting out the the Azilect will get rid of the dyskinesia since that's what started it and it has only provided marginal benefits for my symptoms anyway. And taking half of my original dose of Amantadine will reduce the side-effects to a more manageable level while still giving me positive benefits for my arm stiffness. Time will tell.
So far, I'm doing okay with it. I have periods of off time in the sixth hour, and recently I've had to take some extra levadopa dose before bedtime to be un-tremory enough to go to sleep. Otherwise my hands are vibrating under my pillow, keeping me awake. There is also some dyskinesia during the 5th hour of the dose, but it isn't as bad as previously, probably due to lowering the Azilect dosage.
That's the update for now. One last note. A good friend of mine has suggested setting up a FundMe account to get money for a DBS surgery sooner than next year. If that becomes a reality, I'll post the info about it on this blog, as well as other places.
Thanks for reading!
Thursday, April 7, 2016
Why Me?
As I've been wont to do these past two years since coming down with Parkinson's Disease, I've written a poem for Parkinson's Awareness Month, which is April. Last year's can be found on this blog. I didn't want to let this year lose out, so I created one for it.
My wife said it was the best poem I'd ever written. Maybe, but it did make her cry, so that's a good sign. So I introduce to you this year's Parkinson's Awareness Month poem.
A somber doctor's face meets my eyes.
His wrinkled forehead foreshadows bad news.
My future transforms to shadows
As I hear the words echoing in my ears:
You have Parkinson's Disease.
I ask, “Why me?”
As limbs stop responding to my desires
While fingers take on a mind of their own,
In a body-wide rebellion against my will—
Popping pills works, sort of, but is not a cure—
Jealously I see others walk with steady ease . . .
I ask, “Why me?”
Watching the march of PD's progress,
Looking to science for a brain time-machine,
Finding no counter-attack to halt its surge,
I'm tempted to shelve future plans and goals,
To hunker down and survive day by day—
I ask, “Why me?”
But then the truth dawns on me.
Which of us are free from tragedy?
Rare is the one who escapes unscathed
From diseases, death, and shocks in life.
Why did I think, “It'll never happen to me”?
I ask, “Why not me?”
Actually, there is still much I control:
I can love and enjoy my wife and kids.
I can push the boundaries of my abilities.
I can fight against the overwhelming odds,
Like the brave soldiers of the Alamo.
I ask, “Why not me?”
Hardships teach us the reality we skip
In our daily hustle from birth to grave.
We are not alone, but interconnected.
So selfish dreams are replaced with
Empathy and compassion for others.
I ask, “Why not me?”
Who do I think I am to demand
An escape from the furnace of fire
That burns out ego-centric impurities—
Focusing me toward humble submission
To God and my fellow life-travelers.
So I say, “Here am I, O Lord.
Only You can make the bitter waters, sweet.”
My wife said it was the best poem I'd ever written. Maybe, but it did make her cry, so that's a good sign. So I introduce to you this year's Parkinson's Awareness Month poem.
------------------------------
Why Me?
R. L. Copple
A somber doctor's face meets my eyes.
His wrinkled forehead foreshadows bad news.
My future transforms to shadows
As I hear the words echoing in my ears:
You have Parkinson's Disease.
I ask, “Why me?”
As limbs stop responding to my desires
While fingers take on a mind of their own,
In a body-wide rebellion against my will—
Popping pills works, sort of, but is not a cure—
Jealously I see others walk with steady ease . . .
I ask, “Why me?”
Watching the march of PD's progress,
Looking to science for a brain time-machine,
Finding no counter-attack to halt its surge,
I'm tempted to shelve future plans and goals,
To hunker down and survive day by day—
I ask, “Why me?”
But then the truth dawns on me.
Which of us are free from tragedy?
Rare is the one who escapes unscathed
From diseases, death, and shocks in life.
Why did I think, “It'll never happen to me”?
I ask, “Why not me?”
Actually, there is still much I control:
I can love and enjoy my wife and kids.
I can push the boundaries of my abilities.
I can fight against the overwhelming odds,
Like the brave soldiers of the Alamo.
I ask, “Why not me?”
Hardships teach us the reality we skip
In our daily hustle from birth to grave.
We are not alone, but interconnected.
So selfish dreams are replaced with
Empathy and compassion for others.
I ask, “Why not me?”
Who do I think I am to demand
An escape from the furnace of fire
That burns out ego-centric impurities—
Focusing me toward humble submission
To God and my fellow life-travelers.
So I say, “Here am I, O Lord.
Only You can make the bitter waters, sweet.”
Friday, February 19, 2016
Exercise Benefits and What Not
It's been a year since I started my exercise routine to help combat Parkinson's. Has it helped? What improvements have I noticed if any?
I discuss that as well as updating you on a few other issues I'm dealing with in this video blog entry. Because of all the information, it is a little longer than usual (just over 25 minutes). But hopefully you'll find it informative. Thanks for checking in!
I discuss that as well as updating you on a few other issues I'm dealing with in this video blog entry. Because of all the information, it is a little longer than usual (just over 25 minutes). But hopefully you'll find it informative. Thanks for checking in!
Wednesday, January 6, 2016
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