In Vino Veritas

We went out for a fabulous meal at an old friend's home. We hadn't got together since I had been diagnosed. Of course, I had wine, several glassfuls. Well, at least half a bottle. Now in the past, wine usually caused two things to happen to me (a) fall asleep rather quickly and (b) make two or three trips to the bathroom at night. That night however, I found it impossible to do two things (a) get to sleep at all (b) empty my bladder. Is it a coincidence that I have PD, take two new drugs, and when I indulge (or over indulge) in wine, I have bad insomnia and the polar opposite of incontinence?

I think not.

I enjoyed lying awake and listening to my satellite radio without having to take a bathroom break.

Pass the Asti Spumanti please.

The fog comes on little cat feet

A fog has settled over the city. It is not the type of fog I experienced when I lived in England, fog so dense you could barely see your hand in front of your face. This fog is not that bad, but it is denser than I have seen in a long time.

It mirrors the fog that sometimes stealthily sneaks into my brain as a result of PD. It is not that I lack anything, I can still do the crosswords, square numbers in my head, etc, - all the things I could always do but now, I am a little slower. I think that is a good adjective for PD - it slows you down. Fortunately, you can work around it and when you recognize it happening (it comes and goes, depending on the drug cycle), you can take steps to surmount it - at least I can at the stage I am in now.

It is said that one reason Hitler lost the war was he was suffering from PD that slowed down his thought processes. Could be, but probably the fact he was a homicidal megalomaniac surrounded by groupies was a greater factor.

Unlike Sandburg's fog, the fog over the city has yet to move on.

By the pricking of my thumbs.......

something wicked this way comes.

I was awakened at 3:30AM by a short spasm. It was not a bad one, but just bad enough that it woke me and I could not get back to sleep. As I lay there, my right hand started to twitch. My brain calmly told me,"take your drugs, idiot". But, I was relaxed and didn't want to get up, so gradually my pointing finger began to drum on the pillow and the twitch turned into a tremor. I arose and took the drugs. They do not bring immediate relief, so I decided to go for a walk (which usually calms the tremor). Sadly, the tremor remained for a good half hour until it finally stopped - a combination of the drugs and exercise working together to fool my brain.

This was the first time the tremor was bad in the morning. I have a feeling I will have to increase the dosage of the mirapex I am taking. Is this a foreshadowing of my future? Taking more and more drugs until they stop working altogether? Probably. Let's face it, there is nothing I can do about it so I might as well relax, but I am not looking forward to the evil that is PD.

Football & that old parkie feeling

Exciting football game last evening. The Bombers scored with less than a minute left to take the lead. They held on and won 26 - 25. It should have been a joyous occasion. Unfortunately, the stress of watching the game brought on an internal tremor in my right arm. I tried to ignore it but it eventually blossomed into a full blown right hand tremor. Combine that with familiar twitches in my left leg and you can see why I got upset. I sought refuge in sleep and by 8PM was sound asleep. I awoke at 4:30, took my medication, and went for an hour long walk. As I type this blog, it is 8:13AM and there is no sign of internal or external tremor (touch wood).

Those "myoclonic spasms" I have been experiencing arrive more often and with more force than ever before. I was awakened in the night twice. The first time, my arm seemed to jump off the bed and the second time, my leg did too. They are not high jumps, they just feel like momentary springings a few mm into the air. I don't think these are myoclonic spasms; rather, I think they are symptoms. Such is the joy of PD.

I have got to quit watching football games.

“The future is no place to place your better days.”

I have seen better days. The problem is not the present and only to some extent is it the future. It is the past. On my walk I got to thinking about the things I could do in the past which will be denied me in the future. Running fast enough that you create a breeze, swimming a mile, being able to stand upright, a steady hand, a feeling of well being - all just examples of what I am talking about.

Do I sound depressed? I am not. Even without PD, most things I could do in the past would not be available to me in the future. With PD, I may reach the "inability point" earlier than my healthy friends, but either way, we all get to it sooner or later.

I shall try to concentrate on the present and not project my degrees of wellness, or lack thereof, into the future.

I found out that if I don't take my medication at specific intervals (every 4 hours), I come to regret it. Yesterday, I forgot one dose and the result this morning was, on my early walk, my right hand attempting to do a solo merengue. Fortunately, after 20 minutes or so of walking, my hand calmed down and went back to normal. That felt better. Normal is good. Abnormal is just a state of mind. I will stick with feeling normal.

To quote Voltaire, "life is a shipwreck but we must not forget to sing in the life boats".

To study the abnormal is the best way of understanding the normal.

Feeling normal today. No shakes, normal amount of saliva, no cramping, relatively alert. Feels good! How long will it last?

Every normal man must be tempted, at times, to spit on his hands, hoist the black flag, and begin slitting throats. (H. L. Mencken)

You don't need a weather man to know which way the wind blows

I think I am getting mad cow disease. Yesterday, I forgot to take my medicine - twice. The inevitable happened. My tremor returned in my right hand. It was a weak tremor but a tremor nonetheless. Then, as I should have expected, I had a nocturnal visit from the beast. My right leg shot straight out and my calf muscle knotted itself into what felt like a sheep shank knot. The foot joined in the circus and I was forced to stand up - thinking I had better set an alarm on my cell phone to let me know when to take the medicine. And I will - as soon as I figure out how to do it.

Thinking about cell phones made me wonder what superman will do now that there are no phone booths.....

I've a grand memory for forgetting.

Got busy yesterday and forgot to take my medication at the appropriate times. The result was a sneak attack by the beast in the night. I was finally getting a decent sleep when my right leg went rigid and my right calf muscle spasmed. Mighty painful! Fortunately, it did not get into my foot and toes. I knew if I got out of bed, it would be a long time before I got back to sleep. I decided to try and ignore it and fell asleep in spite of the pain. The attack was a mere foray that was beaten back by a superior force.

The other result of missing my medication is my hand started to shimmy. That scared me as I was afraid the tremor would return. I took my meds and ran 3 miles and all appears to be well now.

I am forgetful; although I can usually remember three things: my wife's birthdate, other people's names and .....and.....Actually, I am only good at remembering two things!

Good news, bad news

The good news first - it seems, statistically speaking, that PWP are less likely to get cancers. The bad news is that applies to all cancers except one; apparently we are more susceptible to melanoma. That's not good, considering the number of bad sunburns I have had over the years.

An estimated 10,850 people will die of skin cancer this year, 8,110 from melanoma and 2,740 from other skin cancers. And, wouldn't you know it, older caucasian males are more likely to die from some form of skin cancer. That is people of my age and gender.

Good thing I get checked every year since, as Stephen Wright has said, I plan to live forever. So far, so good.

When I woke up this morning my girlfriend asked me, 'Did you sleep good?' I said 'No, I made a few mistakes.' Stephen Wright

My insomnia grows worse. A healthy 8 hour sleep eludes me. I sleep in 2 hour bouts in between 1-2 hour sessions of wakefulness. Even sleeping pills don't help. Last night I got 4 hours at best. At 4AM, I was out walking. That was 3.5 hours ago and now, on this Thanksgiving Monday, I am trying to get some work done.

And how about those "myclonic spasms"! I don't think that is what they are. When I lie down, various parts of my body will suddenly twitch. Could be a hand, a foot, my head or a calf muscle. They are harmless in that they are only momentary, but they do make me think the worst (PD paranoia) and some are massive jerks that awaken me just as I am falling asleep.

But I should count my blessings. There are many but chief among them is the agonist is working and I am tremor free (for now???).

Still: "Come to me now! O, come! benignest sleep! And fold me up, as evening doth a flower, From my vain self, and vain things which have power Upon my soul to make me smile or weep. And when thou comest, oh, like Death be deep."
(Patrick Proctor Alexander)

I may need an exorcist. Anyone seen Father Karras?

I know, I was going to take a break but I have to record what happened last night (besides the joy at having the Blue Bombers destroy Hamilton). I have been getting frequent myoclonic spasms over the past months. Everyone has them. They are annoying because they jerk you out of your sleep just as you are about to doze off. Yesterday, I had the mother of all myoclonic jerks. My whole body jerked such that, for a nanosecond, my body felt like it arched a centimeter or so off my bed, sort of like Linda Blair's body did in the Exorcist only not so dramatic. I have to say, it startled me, but I managed to get back to sleep. However, if the next time it happens, I start to float above the mattress, I am going to be looking for an exorcist. Although, it might be interesting to have my head turn backwards, seeing as how I can barely move it from side to side most days.

A little demonic possession might be good for my old tense muscles.

No news is good news

Nothing out of the ordinary has happened in the past 24 hours. Other than fatigue, I am asymptomatic (as long as I am medicated).

Here is an interesting video from the Oprah show:

http://www.oprah.com/health/Dr-Oz-on-the-Medical-Benefits-of-Stem-Cells-Video

It gives all of us suffering with PD some hope for the future.

If you have PD, you should also visit The Parkinson's Forum in the UK

Postings here may become sporadic unless my symptoms reappear. Please check back occasionally. Thanks to all who read this blog.

Something Old, Something New

Not too much excitement on the PD front, thanks to the mirapex/amantadine combo. However, I still get that familiar twitching in my right leg and sometimes in my right foot. Both are bothersome but certainly not a problem.

But, last night I encountered some new "moves". I was lying flat on my back with my right arm by my side, bent at the elbow such that the lower part of my arm and my hand were standing perpendicular to my body and supported by a pillow. I lay like that for several minutes when suddenly, my lower arm and hand, in one uncontrollable motion, snapped down and slapped my chest. That made me sit up and take notice. It also made me laugh - I was hitting myself for no good reason. Later, as I was about to fall asleep, I was in my usual position lying on my left side, my left arm under the pillow when suddenly, my right arm snapped across my body toward the floor. It took me 2 hours to get back to sleep.

Finally, I noticed one of my fingers on my left hand make one involuntary tap. Could this be a sign my left side will soon suffer the indignities of my right?
I hope not and I will try to remain optimistic because fear is a disease that eats away at confidence until there is no hope left.

Walk Don't Run and the danger of yawning

I finally got up the nerve to run a little ways - half a mile. It has been a few weeks but it still felt good. My groin pull still hurts somewhat, but I can live with it.

I like running because it gets the exercise over with quickly. If it weren't for that, I would hate running. In fact, I would hate exercising. Recently, I read that exercise is essential for PWP. That's good because I have been running for 40 years. I have a touch of OCD and if I don't exercise, I drive everyone crazy with my foul mood.

Now I discover that a recent study showed low impact exercises to be the most beneficial for PWP. In that study, the low impact exercise was slow walking on a tread mill for an hour. Oh, the horror! One hour on a treadmill - I might last one session. Other low impact exercises suggested were dancing (as if! I have two left feet and one doesn't work so well), aerobics (you need some sense of rhythm for that. Aerobics is out) or pilates (right! I'm not even sure what that is).

Thankfully, I don't mind walking. I just turn on the Ipod Touch and go for about an hour, now just 2 times a week. It is better than a treadmill because there are things to see. The other two days I do race walking for 2 miles on an indoor track and the stationary bike for 20 minutes (about 8 miles) and some resistance training.

But, what will happen when winter comes? Remember -20C is not unusual. We northern PWP just have another obstacle to overcome, compounded because in winter, I have a strong desire to hibernate.

The above was written late last night. At the moment it is approaching 5AM. I have been awake since 4AM. I was lying in bed in that twilight zone between unconsciousness and consciousness when I gave a huge yawn. This was a stimulus for my right leg to shoot straight and my calf muscle to knot up like a sailor's rope. The pain was something else. I rubbed at my leg but it was like rubbing an iron bar. I kept rubbing and it gradually subsided but the pain remains even now, an hour later, albeit not as gut wrenching. I remain tired and yawning.

A yawn is a silent shout.

I can't complain, but sometimes I still do......

Okay, I know I have written about this before, but it is driving me crazy. I cannot talk properly. My voice has all but disappeared. It would be impossible for me to shout "theater" in a crowded fire or anywhere else. I sound like Tony Bennett with laryngitis, only quieter.

89% of PWP have speech problems, the most common being hypophonia (reduced volume), monotone (reduced pitch) and dysarthria (problems with articulation).

I keep apologizing to people I am talking to when they ask me to repeat myself. People also pull back from me saying "I don't want to catch that cold" or words to that effect. I let it go because I don't want to go into long explanations.

I also hear myself talking and it is frustrating because I am used to my real voice. This new voice is going to take some getting used to. Pretty soon, people will refer to me as the "low talker", like that woman in the Seinfeld episode.

I have been scolded in the past with "You are just not listening!". Now, that is all I will be doing. Voiceless people don't talk; we just listen.

Don’t underestimate the value of irony

Just finished a difficult hour long workout. What bugs me is I have worked hard since my 20's to stay in shape - not Mr. Universe shape, but healthy shape. Other people I know get their exercise lifting their remotes and what happens! I get the incurable neurologic disease! Ironic, isn't it?

Symptoms are practically non-existent. Constant fatigue is the only one left - until the medication peters out. I may not be posting everyday until there is a change in my condition.

In the meantime, from Michael J. Fox:

I love the irony. I'm perceived as being really young and yet I have the clinical condition of an old man.

A catharsis. “Quit worrying about your health. It'll go away.”

People often ask me how I am doing. I am more concerned and upset over the fact that the Blue Bombers cannot score a touchdown from the one yard line (to win the game) than I am over my parkinson's diagnosis.

Of course, it is always there, in the back of my thoughts, that someday I will likely become incapacitated. To be honest, I think I will be dead before hitting stage 5. Small consolation. The thing is, I don't dwell on it. I still do everything I did before; I just do it earlier because my bed time is now around 8PM. For example, yesterday I did a 2 mile walk at 5AM. This was a little later than usual because I stayed up until 10PM watching the Bombers lose the nail biter the night before. They can't score from the one yard line! I mean, one yard! one lousy yard! Two tries to get into the end zone from the one yard line and they blow it!

It just doesn't make sense to worry about PD; afterall, I have no control over the disease, so there is nothing I can do about it. I will deteriorate over time but that's just the way it is - we all will deteriorate with age, I will just do it faster.

There are more important things to worry about. Like a football team that breaks my heart. Besides, to paraphrase somebody (I forget who)...Before going to sleep, I surrender all my worries to God. He is going be up all night anyway.

Better him than me.

The Good, The Bad & The Ugly of PD

Day one


BRADYKINESIA

Bradykinesia is a slowness of movement which gets worse over time. Here is what I might have to experience (not everyone gets them all)

The inability to start a movement (freezing)
The slow execution of a movement
The slowing down of an already slow movement until it stops and a freeze ensues
Reduced arm swing
A shuffling walk
Difficulties with speech
Difficulties swallowing
Constipation
Increased urine production
Reduced body movements
Reduced blinking
Reduced facial expression.

Of course, I have already experienced a few of these and so far they don't pose a great problem. In fact, as a person who used to experience frequent bouts of The Aztec Two-step, one of these symptoms (which I have) is a bonus!

Thinking too long about some of the other symptoms can be a little depressing but, onward and upward. Think positive thoughts. Be optimistic. Don't worry.

OK, but for now, please send in the clowns.