Monday, June 5, 2017

Parkinson's and the Ketogenic Diet

Realizing I'd forgot to talk last time about a different diet that I've been doing since mid-January, the Ketogenic Diet, I did this follow up to my last video. I discuss what the diet is and does, how it is expected to help slow down the progression of Parkinson's, and how I've done on it since January.


Tuesday, May 30, 2017

PD: Dream Destroyer?

A common symptom of Parkinson's is depression. There are two types of depression resulting from PD.

One, brain chemicals get out of balance due to PD's effects on brain functions. Frequently, this is one of the, if not the first, symptoms a PD patient will experience. It can also appear down the line as the disease progresses. Doctors will often prescribe anti-depressants if this is the case, or use other means to normalize the functioning of the brain. This isn't a depression due to circumstances, but is something the patient can't easily control. It certainly compounds any negative circumstances to make them seem even worse.

Two, the destruction of a planned future and grieving that loss. One of the stages in the grieving process is depression. Needless to say, plans for the retirement years are trashed. I envisioned myself cranking out 2-3 books a year well into my 80s, and my wife and I had a dream to travel the country with a travel trailer in tow, staying wherever for however long we wished. All that is unlikely to happen now. At least as how I planned it. As that truth dawns upon a Parkinson's patient, and instead of the happy retirement years one is faced with increasing pain, disability, dependency upon others, and a loss of independence at an earlier age than expected.

Coming to grips with that reality often results in loss of hope. A fellow Parkinson's sufferer recently commented, "How do you make any plans for the rest of your life?" You know you can't win this fight, so the conclusion often is to give up now. Sit in front of a TV and wait for the inevitable doom to descend upon you. The prognosis is grim, and so are you. It is an easy outlook to sink into and never finish the grieving process to arrive at acceptance so you can move forward, because you think there is no forward to move toward.

However, that mindset is a trap. As tempting as it may be to make depression a way of life, here are the reasons why you shouldn't.

1. Realize PD may require some big adjustments to the remaining years of life, but there should be no real difference as to how one approaches that life than one did pre-PD.

At first this may sound silly, if not offensive to someone struggling with debilitating PD symptoms. If so, you didn't read the above statement carefully. I didn't say there is no difference in how one's life will be lived out, but in how one approaches the living of one's remaining years.

You see, the raw truth is all of us are going to die. We will all depart this existence one way or another. The only differences are when and how that will happen. Prior to PD, we may not have thought about it much, but any of us could be gone tomorrow. Some reading this blog only have hours or days to live because there is a drunk driver on the road with your name on him.

Yet, we all tend to plan for the ideal: living into old age and all the things we're going to do during that time. But we rarely giving passing thought to the fact that we could die today, tomorrow, or next month. So when PD forces us (or any chronic, progressive disease, especially those without a cure) to face that the ideal view of your retirement years will never pan out as you had thought, instead of continuing the same approach as pre-PD, we give up. Instead of finding out what we can do, we focus on what we can not or will not be able to do. So we stop doing long before we need to.

There is a frequent prayer that many monks use before going to sleep: in essence that God be with them if they should die in their sleep. Even as kids, many of us prayed the prayer, "Now I lay me down to sleep . . . and if I should die before I awake, I pray the Lord my soul to take."

If we approached PD-life as we did our life before PD, we might lose some goals, might modify others, but also find new dreams that we would have never found. We'd find out what we can and want to do instead of giving up on life.

You may not be there yet. We all go through some depression and loss of hope and it is a natural part of the grieving process. But the problem is getting stuck there. The problem is surrendering to an unfulfilling life, what is left of it. The problem is never arriving at acceptance, adjusting your future plans to fit the new circumstances, and moving forward.

To do that, at some point we need to exit living in victim mode, and approach life by looking to the future, reduced though it may be.

2. You can create new dreams to fill the void left by PD.

Yes, PD is a dream destroyer. However, it is also a dream creator.

My own example will suffice to illustrate. If you've followed my blog, you may know this, but I'll summarize. Prior to PD, I was going to be one of those authors writing 2 or more books a year. I'd spend my retirement years doing something I enjoyed and it would provide some retirement income to boot.

Then a different major life-crisis hit and that dream was put on a shelf temporarily. Before I could pull it back off that shelf, PD hit. My typing speed was cut in half. Worse, I found it difficult to be motivated to write. On top of that, I could no longer spend the amount of time writing that I did when I was going strong because I'd neglected some important issues and people to do that, and I could no longer go that route.

Of course none of that means I won't continue to write. (Hey, I'm doing that now!) It just means I'm not going to put out near the volume I intended and my "writing career" will end earlier than it would have otherwise. So I have to adjust. I need to prioritize what to write because I won't be able to do it all. (I'm still working on the fourth book in a series for about five years when before it took me a month to write one.)

But the interesting thing is, I now have new dreams I'm excited about, thanks to PD. Once I looked for what I could do to slow down this PD train, I discovered that to date only cardio exercise has proven to do so in clinical trials. And the best type of cardio exercise for PD is dance. That led me to start participating in Zumba classes in Feb. 2015. This past January, 2017, I ended up becoming a licensed instructor in Zumba and Zumba Gold because I had a desire to help others in my situation as I've been helped.

For my whole life, I didn't care for dancing. I avoided it. I'd resist efforts to be pulled into it. Even just three years ago, if you'd told me I'd be a Zumba instructor in three years, I would have thought you were crazy. Without PD, I would have never had the motivation to join that first Zumba class. I'd still be sitting at my desk, weighing a lot more, much more physically unfit, and not enjoying the benefits of dancing, both physically and mentally.

So yes, once one gets past depression and starts actively deciding what they can and want to do with the rest of their life, there are new dreams that even something like PD will lead you to. But you'll never find them by living in victim mode.

3. There is something you can do to slow down the inevitable.

As mentioned above, cardio exercise has been clinically proven to slow PD's progression. Not stop it, but slow it down. I can say the past two years of exercising, while I've noticed some progression (thus needing to adjust my medications), it has not been at the pace of the first three years. The end result is it means I'll be able to squeeze some more productive time out of this life.

It is interesting to me (and I used to be there, so I know) that we'll search for the magic pill to fix this disease. We'll try this or that supplement, or treatment that promises to slow, reverse, and/or cure PD. We'll spend a lot of time seeking that easy fix. Look back on this blog and you'll see all my notes on what supplements I've taken, what I've tried. And I still take most of them.

While I have my reasons for taking them, and maybe I'll do a post on that subject soon, and I believe they're helping, I know they won't slow or stop PD in its tracks. Meanwhile, the only thing that has been proven in clinical trials to slow PD progression is frequently dismissed.

Because of my exercise routine--Zumba 4x a week; Aqua Zumba, Body Step, and Body Pump once a week; and about 11 hours of Pickle Ball a week; plus I now teach a Zumba class--my resting heart rate is in the upper 40s and I've regained a lot of muscle lost to PD during those first 3 years, enabling better bladder control and fewer small movements.

What is the best exercise for you? The one you'll enjoy doing and look forward to. For me it was Zumba. For you it may be something else.

4. Our focus should turn from "poor O' me" to being concerned for family and friends who may become caregivers in the future. Ask, "What can I do to make it easier on them?"

For me, a primary motivation for doing Zumba to slow this disease down is my wife. Someday, she'll be my caregiver, should we both live that long. If I sit on a couch watching TV or piddling on my computer all day, it means she'll have to take on that burden much sooner. Likewise, without exercise, I'm much more likely to develop dementia, which would make it that much harder for her.

I'm doing this for her primarily. I know at some point I'll lose this battle with PD and she'll have to do a lot of things for me. The longer I can delay that day is a win in my column because it means the more quality time she'll have with me; the less she'll have to struggle with the hardships of being a caretaker.

5. Getting Parkinson's doesn't mean life is over. It only means you know one way life will end should you avoid all the other conditions and events that could kill you.

The real question once you've worked through the grieving over lost dreams and depression is "What new dreams and goals can I still work for and achieve before PD makes it physically impossible to accomplish them?" Answer that question, and you'll discover PD doesn't destroy having dreams and goals for the rest of your life, it means trading in some dreams for new ones and making the most of the time you do have left.

We're all going to die of something and it could happen at any time. That doesn't stop us from planning on living life now and into the future. That shouldn't change even if the plans change.

Go on, live your life. Don't let Parkinson's win by giving up.

Be a victor, not a victim!

Monday, May 29, 2017

Finally, an Update

I'm way overdue on updating blog followers how me and Parkinson's are getting along lately. I apologize for the delay. My focus over the last few months on getting licensed in Zumba Gold® and getting a class going in addition to the rest of life hasn't given me much time for this blog.

But I thought I'd try something new on the video blog front. I've been making videos and uploading them to YouTube. With advent of live streaming, I thought it would be cool to do my video blog that way so people would have opportunity to ask questions and interact in real time.

I investigated YouTube's live streaming, but it is more complicated than Facebook's. You have to download a third-party app to encode it and send it to YouTube, etc., etc., etc. They are working on building it into the YouTube app, but isn't out yet. With Facebook, you simply click a link and in seconds you're on the air.

The big downsides to using FB for this is, one, it will change the location of my PD videos, which are all on YT. Two, I'm unsure how well the FB video will embed in this blog. But, after wasting the morning hours trying to find and set up YouTube's livestream, I gave up and opted to give FB livestream a try. So we'll see how this works. Maybe once YT simplifies their livestream, I'll give that a go and evaluate.

At any rate, check out my first live-streaming video blog post. Don't know how this will work, but it may require you to log in to FB. If you're one of those few people without an FB account and you can't see it because of that, let me know in the comments and I'll see if I can find a solution for you.


Tuesday, April 4, 2017

Dream Births

It is that time of year again: Parkinson's Awareness Month (April). As I've done for the past few years, I've written a poem for the occasion. However, this one is a bit different in that it doesn't address Parkinson's Disease directly, but could apply to any number of tragic happenings and conditions that threaten our future and dreams, leaving many hopeless and feeling helpless.

Yet based on my own experience dealing with such events and diagnosis these past six years, I think there is a different perspective to absorb. With that thought in mind, I present my 2017 Parkinson's Awareness Month poem for your digestion.


Dream Births

by R. L. Copple

I checked the map,
I picked my goal,
I planed my path,
I was ready to roll.

The road was wide
providing the room
to fulfill the desires
sucking me into gloom.

The way was easy
so I struggled less
and enjoyed addictive
pleasures, I confess.

Then tragic detours
force-dumped my rare
bucket-list of hopes
into a grave of despair.

Leaving my only route
a narrow, climbing path:
rocky, exhausting, austere—
drenched in grief’s wrath.

Among peaks and valleys—
hardened by sun, droughts,
freezing ice and snow—
I clawed through my doubts.

Yet somewhere within,
I found the inner drive
to put one foot forward
rather than let it slide.

I’m not going to lie,
the trip was a pain,
the struggle: surreal—
it drove me insane.

But when I crested a peak,
panting from thirst,
more dreams were born
as they did at the first.

Dreams more precious
despite all the loss;
they became more valuable
due to the high cost.

Now I know that my
destiny is given wings
when my dreams die
and are no longer kings.

I allowed divine passion
to gestate fresh life,
birthing new dreams—
carved by His knife.

Thursday, December 29, 2016

Zumba for 2017

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.

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.