Time Flies When You Are Having....

It's been about five years since my last post and it has been a busy five years. The Parkinson's is still there but has not changed much. The meds keep it pretty much under control even in the ninth year of symptoms.

Married a wonderful woman from California's central valley back in 2011 and we moved to the Dallas area initially but then down here to the Austin area where I was doing much of my work. We just built and moved into a beautiful house in a forested area southeast of Elgin, TX and we are blessed in every way.

Church has become my main focus over the last few years and it has been a blessing as well though balancing everything becomes tedious at times.

Life is what you make it with what God gives you and where He plants you. Has not always been easy but even with an incurable disease, I am extremely blessed!

Will try to do this sooner than five years next time...

Twitchy

Where has all the time gone?

It is "funny" that while our time on Earth is short, we definitely waste a lot of it (don't even follow me around to see how many light switches I leave on to see how much electricity I waste). Parkinson's has made me more aware of my limited time on this planet (not necessarily in time though we never know when our time will be up but in functionality due to the disease). I am about three or four years into this thing and I am at the apex of "busyness" in my life. I am extremely blessed on all fronts and thankful that I am able to the things that I pray God has set before me to do.

Concerning my Parkinson's, the symptoms have remained about the same. I have the same left side symptoms with a little bit occasionally on my right side. My medicine (Sinemet) has been increased and combined with another called Azilect to help make the dopamine stay in my body longer. The problem is that I started to get more and more side effects called dyskinesia. This is the involuntary movement caused by temporarily "overdosing" or "shocking" your system with the Sinemet. I have reduced the Sinemet to almost nothing right now because the periodic tremors are more comfortable for me than the dyskinesia.

Concerning the rest of my life, I still travel like, well, a bird who can't seem to stop migrating all over the place. I have seen a lot of changes in about every aspect of my life--some good, some not so good. I now go to a Church of Christ in my hometown and could not be happier. Divisions in the church have ALWAYS bothered me and to go where there is true unity and adherence to what scripture actually says about the worship, duties, and mission of the church makes me very happy to call myself simply a "Christian". My son lives with his mom again but with more stability than before. He is a freshman in high school and doing very well on all fronts. I have a very close friend and sister in Christ whom I love very much along with her kids. We have grown close though not in the type of relationship that the world would expect. I am thankful for all of them and, to be honest, needed them at this time in my life. I am wanting at some point to start a Parkinson's support group in my hometown because I think that socialization is a VERY IMPORTANT part of living with this disease. I couldn't imagine being alone with it.

Well...that's enough for now. See you in another year or so! :-)

Twitchy

May Post: The Good, the Bad, and the Ugly...

I visited my new neurologist in St. Louis this month and per the theme of the spaghetti western "The Good, the Bad, and the Ugly", here is what I was told. First, the bad: Very certain that I have Parkinson's Disease (PD) and that I have probably had the symptoms per my description for about 2 years. The good: It is likely I have a "good form" of PD in that those patients that have tremors versus those who do not in early stages tend to have a much slower progression of the disease. Further, tests for a disease called "Wilson's Disease" were negative (that would have been the "Ugly").

For treatment, they have started me on a regimine of a drug called Sinemet which is a combination of two drugs that the brain turns into Dopamine. The first week was at half dose and while the amplitude of tremors went down, the tremors persist on my left side. Now I am up to full dose and I am finding that spacing between the doses are important. We'll see how things go into June...

April Post

As for my April update, there have been some changes in my Parkinson's Disease (PD) related condition. First, as mentioned in March, I started on a dopamine agonist drug in patch form called "Neupro". This drug, while not a dopamine which is what I am lacking due to the PD, mimics the action of dopamine which is a "neurotransmitter chemical produced in the brain that helps in the transmission of messages between the nerve cells in the brain to produce smooth, coordinated movement" (http://www.pspinformation.com/medicine/individual/neupro.shtml). I started with a 2mg dose and then each week advanced to a 4mg and then 6mg dose per my neurologist in Texas.

Unfortunately, my tremors seemed to get worse and started in my thigh where I had not had a tremor before. Also, I had a rash develop anywhere the patch was located. A capsule form was also available but it was decided to go with the patch since it was a once-a-day thing versus 3 times a day for the pills. The neurologist decided to take me off the patch mainly due to the fact that I chose to see a more "local" neurologist in St. Louis at the Washington University Movement Disorder Center at Barnes-Jewish Hospital so that they could start with a "clean slate" when I started treatment there. That appointment is scheduled for May 21 currently.

I'll update the blog when I find out more from the new neurologist in St. Louis. As for the tremors, they remain in the same locations as in the last update of "Mr. Bill" (left wrist, left thumb, left calf). I have had a couple intense bouts of depression (just a general sadness) during that time but as quickly as they came on, they ended after about a week of duration. As there did not seem to be any reason for the depression, I believe it to be caused by the PD and the dopamine levels.

Take care from SE Missouri...
Jim

I'm Back!

Looking back at my last post, I realize it has been a few months since I last contributed to that phenomenon called the "blog" (and according to Google and their hit counter, only 2 other people know that :-). Just an update for now on my Parkinson's:

The Parkinson's actually got worse over the last few months. The shaking in my left hand/wrist is fairly constant all day long except when I sleep. When stressed, my left leg joins in. This week my neurologist started me on Neupro which is a "dopamine agonist" which "mimics dompamine" and hopefully will squelch my shaking. We shall see... I have just started the Rx and it will be slowly dosed up over the next 3 weeks.

More as I get back into blogging....

"Yuletide Blog"

Well, it is that time of year again when the government in their wisdom allows egg nog to be "legalized" for the short duration of the Christmas holiday and then to minimize its visibility at the grocery stores until cholesterol levels have been given time to drop back down to "normal" levels. Of course now--if anyone actually read this blog--the government will be shutting me down to cover up this conspiracy with the health care industry.

I actually love egg nog and the holiday season though its meaning has become very warped both on a national and familial scale. I know of no other holiday (than maybe Thanksgiving) which has become so stressful at least in its preparatory stages than it should. The stresses, of course, involve the gift buying, the gathering of families which seem to become more and more splintered, and the fact that Thanksgiving just passed and here comes another large meal! We always seem to take our holidays and throw on either a lot of crazy rituals (Easter egg hunt, I am looking at you) or unrealistic expectations (you got her the pot and pan set but she got you the high dollar iPod!).

I could go on and on about the holiday season (the hanging of lights, the displaying of fan driven, wind blown over snowmen and Santa's, the cutting down, display, and adornment of large outdoor plants indoors, etc.) but I will leave it that. On the more larger topic which this blog covers, I will say that the symptoms of my Parkinson's, despite the holiday stress, have lessened recently. The exercise routine seems to have helped with the stiffness and tremor levels. Mr. Bill stays as he was in October...

Have a safe and joyful Christmas!

"Snap, Crackle, Pop"

I guess it is the engineer in me that makes me buy a book on just about anything that I am about to tackle, experience, etc. My library is huge and contains subjects from computers, to aquarium fish, to electronics, to travel in Scotland, to the war in the Pacific during WWII, to Shakespeare...well, you get the idea. If I am going to do something that I am not familiar with, I buy a book. If I am going to go through a condition (such as Parkinson's), I buy a book. Although I don't think I would be in the minority with the latter, it would be my tendency anyway.

With all of that said, I have purchased at least three different books now on Parkinson's. All three stress the importance of exercise in helping with the muscle stiffness and potentially slow the progress/symptoms of the disease. To that end, I took up Tae Kwon Do (TKD) with my son and have started some modest body building. Has it worked? Yes, it does seem to help. I feel stronger and the stiffness in my muscles is not as bad as it was. Don't get me wrong... Parkinson's is a regressive disease and at some point the exercise will not help as much but for now, I am getting into better shape and hopefully prolonging the inevitable symptoms.

As mentioned in other posts, I have young-onset Parkinson's Disease (YOPD). This is actually a good thing for me because if I had to start an exercise program in my 60's when a majority of Parkinson's sufferers get this disease, I think I would be in major trouble. I say this because I have discovered over the last month or so that I am no "Spring chicken." At 41, the TKD and weight lifting is not as easy as it once would have been. My knees are making noises that not only I can hear but others can as well. If I throw a punch wrong in TKD, my shoulder makes a loud pop. This morning, after TKD practice last night, I could barely make it up the stairs (and back down) without having to heavily rely on the railing, wall, etc. So, while the exercise helps, it also reminds me of my age and why you don't see many athletes over the age of 40 (and believe me, they are in much better shape than me).

Forgetting the disease, it is really a let down when I see how much harder it is to do physical things now. My TKD class includes only one other adult (slightly younger) and the rest are kids. The kids run circles around me in terms of flexibility, ability, etc. It is funny to see the looks on their faces when I throw a kick that barely gets above my waist, if it all. When I was a kid, I could put my toe almost to my shoulder. I was not exactly Ray Guy, but I had some flexibility. Now, if my toe makes it over my belt line on a kick, I am celebrating (or getting Celebrex or something). Granted, I have had a lot of leg injuries over the years: torn ACL, Achille's tendon rupture, severely strained ankle, popped muscles, bone spurs in my foot, etc. With all of that, though, I always considered myself somewhat athletic. Yes, with my small stature, I usually have to pour more effort into what I am trying to accomplish and that has obviously taken a toll, but I thought I would have SOME of that left over.

Aging is not fun. I notice the changes over time but they tend to creep up on me. The physical ability changes seemed to come overnight (around 38). It is not to say that I cannot regain some of my abilities given my current regimen, but we shall see. In the meantime, I'll have to get use to "snap, crackle, pop".