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.

Enjoy!