I had two symptoms I had noticed early on that seemed strange, but I didn't think a whole lot about it. It was only in retrospect that I realized they were the first symptoms of PD. I had almost forgotten about them, really, until my right arm started doing the same thing this year. One of them I have a general idea when I first noticed it. The other, I don't recall with any certainty. So I don't know for sure which came first and second.
My hunch is this one came first. My best guess on when I first noticed it was in early 2012, though it might have been at the end of 2011. I do recall noticing it while driving. During that time, my youngest son, Jeremy, was in his first year at the University of Texas in Austin. So we were constantly making trips to Austin, approximately one hour each way, for this, that, and the other thing.
On one of those trips, I noticed my left hand was clamping onto the steering wheel uncomfortably, instead of relaxing as it usually did. It felt like my hand muscles wanted to contract. I had to keep forcing my hand to relax, but as soon as I thought about something else, I'd realize my hand was clamped on it again.
I figured this was a passing thing. But it didn't go away. I did, however, get used to it doing that. What I would later find out is stress brings out PD motor symptoms. Driving is definitely stressful. So the only time I noticed this was when I drove anywhere. I adjusted and moved on. However, as time went on, the uncomfortableness extended to my whole arm. Now, even with medication, I can still feel a tightness that produces pain in my left arm. Without medication, it would feel much worse.
The second symptom that hit me happened while swimming. My wife and I, at the time, were members at a local gym. We'd go there most weeknights to swim and sit in the hot tub together. It was good exercise, and someday we'd like to do that again. But around late spring or early summer of 2012, I started to notice a pain in my left arm when I swung it over the water. Felt like a really sore muscle.
I thought maybe I'd over exerted the muscle, and it would get better. It didn't. Each evening while swimming, it felt as sore as it did the day before. But I only noticed it while swimming. Something about swinging that arm up and over that brought it out.
Despite the longevity of those symptoms, it had yet to dawn on me that anything was seriously wrong. None of it affected my day-to-day activities. I only noticed them when doing those two activities.
In August of 2012, I bought a new laptop to replace my aging one. When I started using it, I noticed I had a tendency to double-enter, E's especially. I suspected it was a cheap keyboard. Well, there is that, but I now know it was also the beginning of PD affecting my typing. Through September, that became worse, and other letters started having the same problem, all left-hand keys.
By October, I began to notice difficulty getting my left hand to type smoothly. I frequently had to hit the backspace button because my hand didn't type the right thing. My fingers were misbehavin'. It began to dawn on me something wasn't right with my left hand. What, I had no idea.
But the realization came in November. Most years, you'll find me writing a novel for National Novel Writing Month in November. For the past years, I would log into a NaNo local chat. We'd have timed speed tests, usually 20 minutes. A bot would start the timer. At the end of the time period, we'd all report our word count to see who had the highest. Usually in a 20 minute period, I could type 4 to 5 hundred words. Others were much faster than me, but occasionally I'd win one if everyone else had an off time.
When I began doing those races in November of 2012, I was consistently hitting in the 200s, the 300s on a good run. I realized whatever was wrong with me, it had cut my typing speed in half. I knew then that something was wrong. But I didn't say anything to my wife or anyone, hoping the symptoms would go away. Still, I finished a 50K+ novel that month (currently published, Virtual Game). In the past I had generally passed the 50K mark around Thanksgiving. I passed that mark in the last three days of the month.
The last indicator was a funeral in December and hanging with my brother and sister-in-law on New Year's Eve. In both instances, they noted that I didn't seem as engaged, and looked "out of it." For the funeral, I figured that was because I had received very little sleep the night before. So naturally I didn't feel much like engaging. Plus, I've never been a big conversationalist anyway.
But later I learned that one of the symptoms of PD is one's face can often get that "I'm checked out" look, even when I'm not. So what seemed normal engagement to me may have looked like I wasn't paying attention to what was going on, even if I did.
That said, I did notice after that having moments when I felt confused about what I was doing. Not merely forgetting what you came into a room to do, but confused about it. Like for a moment, you don't even remember that you had a reason to be there. PD can create dementia. Are these foreshadowing that? Not sure. The likeliest PD patients to get dementia are those who start showing symptoms in their 60s or later. So I should be at a lower risk, but obviously not no risk. Time will tell.
Overall, I believed I was experiencing the beginnings of weakness and fatigue, another PD symptom. It wasn't strong, but there. Sort of a feeling of giving up and going with the flow, but feeling you were giving up something important that would make you happy, so you felt a little like a martyr. How much of that was PD and how much was lingering wisps of how things used to be before the changes infidelity brought on, I don't know.
The mental confusion doesn't happen as much now. I'll explain in a later post why I think that is.
At this point, I didn't know what was wrong. Tremors hadn't developed yet. I had no clue. Only that something was wrong, and with the advent of a new year, I made plans to see a doctor. I hoped we'd find a remedy for it, and I would get past it. As you know now, that was not to be.
The events for 2013 will be in the next post.
Saturday, March 29, 2014
Friday, March 28, 2014
My Perspective
Michael J. Fox, a long time Parkinson's patient, actor, and founder of the Michael J. Fox Foundation that funds research on Parkinson's Disease, notes how important a positive attitude is in dealing with this disease.
It has developed in the nearly a year since I heard the words from my doctor's mouth, "There is a high likelihood you have Parkinson's," before he refered me to a neurologist for confirmation. By that point I knew something was wrong with me, but I didn't have a name for it until then. I promptly went home and started researching what I was up against. I knew a little about it, but not much.
I'll explain what it is in a bit, but the main points I learned was in most cases, they don't know what causes it, they don't have a cure for it, it is a progressive disease--which means it will get worse and worse--and all they do is treat the symptoms. I also learned that it is a very individual disease. Different people deal with different symptoms that progress at various rates. IOW, I could be in a wheel chair in 5 years, or playing tennis in 20.
Which leaves one with a lot of uncertainty. For all I know, they could announce a cure this month. Or maybe not in my lifetime. A new treatment could be on the horizon that would more effectively deal with symptoms. Or Sinemet could remain the most effective route for years to come. Who knows?
Being a Christian, I've asked God for healing. However, I'm not in the "if you don't get healed it is because you don't have enough faith" camp. Rather, I'm in the Meshack, Shadrack, and Abendego faith camp. I know God can "save" me from this disease, but even if he doesn't, I'll still love and serve Him. If He doesn't take this "thorn" from me, it is for my benefit, so His grace and glory will be revealed in my weakness.
Faith isn't a tool to get what you want. It is a trust in God that what He wants for me is also what I want, even when I wouldn't have chosen that path for myself. Faith is an attitude and orientation on life. For me, it is having a positive attitude that . . .
I've been pretty healthy all my life. To date I've never been admitted to a hospital. I've rarely needed to go to a doctor. Until last year, I rarely took many pills save for vitamins and a few other such pills.
Born in 1960 (making me at the point of writing this, nearing 54 years old). Raised as a Southern Baptist PK, my family stopped going to church all together around 1967-68. Returned to church myself in 1976, getting saved in a Nazarene vacation Bible school. I graduated high school in Austin, TX in 1979. Went to what was then called Bethany Nazarene College (now Southern Nazarene University) in 1979 to major in religion. Found myself a wife while there. Married in May of 1982. Graduated college in 1984.
My first child was born in 1985. Then another in 1988. Finally went to seminary in 1989, and attended part time for three years before they raised the rates so high it was impractical for me to continue. Took my first pastorate in 1992. Ordained in 1994, but not before having our third child that same year. I also left to pastor my second church that year.
1996 was a major shift for me and my family. Due to my convictions, I resigned my pastorate and moved back to Austin in order to "convert" to the Orthodox Church. In 2000 we moved to our current house. I supported my family for over 15 years doing bookkeeping while my wife earned extra cleaning houses.
I could list a lot of things that's happened since then, but the following two are key in understanding me. In 2005, I "accidentally" wrote my first novel of 94K words in the month of October. That experience convinced me I wanted to be a writer. I've been working hard at it ever since. Currently have six fantasy/science fiction books published, an anthology of my short stories and flash fiction, and two non-fiction books. That makes a total of 9 books on sale at Amazon and other retailers. You can find out more about that at my author website, http://www.rlcopple.com.
The other major event that has totally changed my life is my wife's affair in 2011. Because of that, we've both made major changes in how we interact with each other and have grown personally through that difficult time. The rebuilding of our marriage and relationship has proven so successful, that I did what any writer would do. I wrote a book about it, with my wife's approval. You can find it under the title Healing Infidelity. I also keep up a blog on the topic where I post weekly.
It was the following year, 2012, that I first started noticing the symptoms of what I would later learn to be Parkinson's.
A good brief definition is found at http://www.parkinsons.org:
Of course, much more could be said about it all. Visit that site for more information than I can provide here. In the following blog posts, I'll be relating what symptoms I've had so far and what steps I've taken to deal with it.
So What Is My Attitude?
It has developed in the nearly a year since I heard the words from my doctor's mouth, "There is a high likelihood you have Parkinson's," before he refered me to a neurologist for confirmation. By that point I knew something was wrong with me, but I didn't have a name for it until then. I promptly went home and started researching what I was up against. I knew a little about it, but not much.
I'll explain what it is in a bit, but the main points I learned was in most cases, they don't know what causes it, they don't have a cure for it, it is a progressive disease--which means it will get worse and worse--and all they do is treat the symptoms. I also learned that it is a very individual disease. Different people deal with different symptoms that progress at various rates. IOW, I could be in a wheel chair in 5 years, or playing tennis in 20.
Which leaves one with a lot of uncertainty. For all I know, they could announce a cure this month. Or maybe not in my lifetime. A new treatment could be on the horizon that would more effectively deal with symptoms. Or Sinemet could remain the most effective route for years to come. Who knows?
Being a Christian, I've asked God for healing. However, I'm not in the "if you don't get healed it is because you don't have enough faith" camp. Rather, I'm in the Meshack, Shadrack, and Abendego faith camp. I know God can "save" me from this disease, but even if he doesn't, I'll still love and serve Him. If He doesn't take this "thorn" from me, it is for my benefit, so His grace and glory will be revealed in my weakness.
Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered. And he that searcheth the hearts knoweth what is the mind of the Spirit, because he maketh intercession for the saints according to the will of God.
(Rom 8:26-27 KJV)
Faith isn't a tool to get what you want. It is a trust in God that what He wants for me is also what I want, even when I wouldn't have chosen that path for myself. Faith is an attitude and orientation on life. For me, it is having a positive attitude that . . .
All things work together for good to them that love God, to them who are the called according to his purpose.
(Rom 8:28 KJV)
A Little About Me
I've been pretty healthy all my life. To date I've never been admitted to a hospital. I've rarely needed to go to a doctor. Until last year, I rarely took many pills save for vitamins and a few other such pills.
Born in 1960 (making me at the point of writing this, nearing 54 years old). Raised as a Southern Baptist PK, my family stopped going to church all together around 1967-68. Returned to church myself in 1976, getting saved in a Nazarene vacation Bible school. I graduated high school in Austin, TX in 1979. Went to what was then called Bethany Nazarene College (now Southern Nazarene University) in 1979 to major in religion. Found myself a wife while there. Married in May of 1982. Graduated college in 1984.
My first child was born in 1985. Then another in 1988. Finally went to seminary in 1989, and attended part time for three years before they raised the rates so high it was impractical for me to continue. Took my first pastorate in 1992. Ordained in 1994, but not before having our third child that same year. I also left to pastor my second church that year.
1996 was a major shift for me and my family. Due to my convictions, I resigned my pastorate and moved back to Austin in order to "convert" to the Orthodox Church. In 2000 we moved to our current house. I supported my family for over 15 years doing bookkeeping while my wife earned extra cleaning houses.
I could list a lot of things that's happened since then, but the following two are key in understanding me. In 2005, I "accidentally" wrote my first novel of 94K words in the month of October. That experience convinced me I wanted to be a writer. I've been working hard at it ever since. Currently have six fantasy/science fiction books published, an anthology of my short stories and flash fiction, and two non-fiction books. That makes a total of 9 books on sale at Amazon and other retailers. You can find out more about that at my author website, http://www.rlcopple.com.
The other major event that has totally changed my life is my wife's affair in 2011. Because of that, we've both made major changes in how we interact with each other and have grown personally through that difficult time. The rebuilding of our marriage and relationship has proven so successful, that I did what any writer would do. I wrote a book about it, with my wife's approval. You can find it under the title Healing Infidelity. I also keep up a blog on the topic where I post weekly.
It was the following year, 2012, that I first started noticing the symptoms of what I would later learn to be Parkinson's.
What is Parkinson's Disease?
A good brief definition is found at http://www.parkinsons.org:
In the normal brain, some nerve cells produce the chemical dopamine, which transmits signals within the brain to produce smooth movement of muscles. In Parkinson's patients, 80 percent or more of these dopamine-producing cells are damaged, dead, or otherwise degenerated. This causes the nerve cells to fire wildly, leaving patients unable to control their movements. Symptoms usually show up in one or more of four ways:
- tremor, or trembling in hands, arms, legs, jaw, and face
- rigidity, or stiffness of limbs and trunk
- bradykinesia, or slowness of movement
- postural instability or impaired balance and coordination.
Of course, much more could be said about it all. Visit that site for more information than I can provide here. In the following blog posts, I'll be relating what symptoms I've had so far and what steps I've taken to deal with it.
Thursday, March 27, 2014
And So It Begins--The Blog, That Is
Hello. My name is Rick Copple, and I have Parkinson's Disease.
Not like I'm addicted to it like an Alcoholic's Anonymous Association member. I only wish it was that easy to get rid of. Alas, at this time it is still an incurable disease.
But before I dive into what this blog is about, I want to convey why I'm writing this blog and what any subscribers can expect.
I don't plan on keeping a regular schedule of posting. I'll post when new information arises. Doctor visits and what resulted from them. Changes in medication. Any significant progression of the disease and/or new symptoms--as well as remissions. Hey, miracles still happen. I'm not shutting that door. Anything related to the disease I find enlightening or important, like new medicines and procedures to treat it.
There may be weeks I post two or three times. Other times, I might go months without posting anything. Just depends on my schedule and whether I have anything of value to report. Therefore, if you want to keep up with my experiences with Parkinson's, be sure to subscribe by RSS feed or follow by email. Both links are in the top-right corner.
During the coming month, I'll post more frequently as my schedule allows since I've got to catch the blog up over the last two years of PD events, as well as establishing a foundation to launch from.
If you want to join me on my journey until I can no longer keep the blog up, for whatever reason, you're welcome to do so. Thank you for your prayers and support. More to follow soon.
Not like I'm addicted to it like an Alcoholic's Anonymous Association member. I only wish it was that easy to get rid of. Alas, at this time it is still an incurable disease.
But before I dive into what this blog is about, I want to convey why I'm writing this blog and what any subscribers can expect.
I have multiple reasons for writing this blog.
- Recording my history and progression with the disease. Several years down the road I won't forget details and dates. Already some of the early symptoms aren't precise when they started, since I didn't realize at the time they were the beginning of anything.
- Journaling helps me to process what is happening and deal with it better.
- For my doctor, if he and she so desire to get an overview of what is going on with me (though they probably don't have the time).
- For my family, both immediate and extended who want to keep tabs on how it is going with me.
- Anyone else who is simply interested, though I don't expect that list to be huge.
- Finally, who knows? Someday this may become the material for a book if it ends up proving of interest to people.
I don't plan on keeping a regular schedule of posting. I'll post when new information arises. Doctor visits and what resulted from them. Changes in medication. Any significant progression of the disease and/or new symptoms--as well as remissions. Hey, miracles still happen. I'm not shutting that door. Anything related to the disease I find enlightening or important, like new medicines and procedures to treat it.
There may be weeks I post two or three times. Other times, I might go months without posting anything. Just depends on my schedule and whether I have anything of value to report. Therefore, if you want to keep up with my experiences with Parkinson's, be sure to subscribe by RSS feed or follow by email. Both links are in the top-right corner.
During the coming month, I'll post more frequently as my schedule allows since I've got to catch the blog up over the last two years of PD events, as well as establishing a foundation to launch from.
If you want to join me on my journey until I can no longer keep the blog up, for whatever reason, you're welcome to do so. Thank you for your prayers and support. More to follow soon.
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