He's Here.........!

1982. Remember being a little shook up by the movie "Poltergeist"? (Poltergeist: "a mischievous ghost" which, in the movie, was a little more than mischievous). Well I think there is one in my bedroom. Twice now I have been wakened by kicks to my back, once with a poke in the neck and recently, I was jabbed in both sides simultaneously. Poltergeist? Maybe. But that would make me move out of my house. Instead, I blame it on PD (as I do every ache or pain that comes along). It might be a defence mechanism ("defense" to our cousins south of us), but I think not. I think it is similar to the myoclonic spasms that usually occur as I am falling asleep.

I find it odd that these things only happen at night but then, it is easier not to believe in poltergeists in the daylight. Is it a ghost? Naw, that's just my imagination. It is only another onslaught by my uncomfortable enemy, PD.

Anyway, that's my explanation and I am sticking to it!

Let's hear it for the USA and Michael J.

I was at a junior high basketball game some years ago and the crowd was chanting "All right, all right, all right, let's go". It was quite the thing to hear and it really got to the opposition, leading to a hometown win.

So, Michael J., you good ol' Canadian boy, all right, all right, all right, let's go. With funding from Michael's foundation, an American drug company has invented a Levodopa inhaler that will really help those who suffer from on/off problems.

I was asked recently if I would go to the USA for amantadine (there is a shortage here). Having done so in the past (unrelated to PD), I, of course, answered in the affirmative. Let me assure you that if I ever do suffer from wearing off, and the inhaler is not approved by Canadian authorities, I will be in Grand Forks, North Dakota, with bells on, whatever the cost. Their health system might be way more expensive than ours, but it seems to me that most innovations come from the States (sometimes with the help of a good ol' boy from Canada).

The American politician, Mike Ferguson, once said, "America's doctors, nurses and medical researchers are the best in the world, but our health care system is broken." Broken? Maybe, but right or wrong, I ,for one, am glad Grand Forks, ND, is only 150 miles south of us.

I'd rather there was a surplus

Somebody (I don't know who)once said words to the effect that if the government were put in charge of the Sahara Desert, within 5 years there would be a shortage of sand.

Well guess what! My amantadine prescription needed refilling but my wife was told by the pharmacy they only had 87 tablets (I take 4/day) and wouldn't get anymore until September because there was a shortage. Now I believe that amantadine, that much maligned drug, is the reason my right hand has ceased to have a life of its own, over which I have no control. Without amantadine, I would be a mess. I needed 252 of those little life savers to make it to September and they only had 87 and said other pharmacies were in the same spot. I wouldn't even make through July. Fortunately my wife has my back and managed to scrounge up another 199 and so we are set for the time being. I can make it to September, but what happens if come September the shortage has not been resolved. Well there is always L-dopa, but for some reason, I want to stay on amantadine and mirapex for as long as I am able.

Mark Twain once said "When you are angry, count to four, when very angry, swear". Well shit, I don't know who is responsible for the shortage (when in doubt blame the government)but get off your asses and get it done.

Parkinson's - the quaint designer disease.

(Thursday) If I make it through the night, I will turn 67 in the morning. I have no problem with that because for the past year I have been telling people I was 67 when all along I was only 66; therefore, I have gained a year. Oh, I may have occasionally told someone I was 66, but that would have been rare.

Memory problems are a part of parkinson's but fortunately, I don't really have a real problem with my memory. Now stupidity. Well that's another matter all together.

(Friday) Whew, I made it. I am now officially 67 for the second year in a row and I am already exhausted (it is 8:13am). I woke up at 4AM today, did some work - no exercise today - took my mother to the hospital and now I am back at my desk, ready for bed. It is the parkinson's - it is making me ache for a nap. Slumber! An extended period of dormancy or even hibernation. That is what I need. So I will be off to the cottage for 3 days, living a hermit's life. You get the picture.

PD is called a designer disease because it affects everyone differently. It can cause tremor or no tremor; it can affect one side only or maybe ravage both; it can progress rapidly or maybe slowly; it might cause exhaustion or maybe a just little tiredness, etc, etc. Well here is my design (so far)

• Mind numbing exhaustion at certain times of the day, usually between 1pm and 4pm. It disappears and reappears around 8pm
• Tremor dominant - this is thought to be the most benign form of PD and is, for me, easily controlled by drugs
• Affects, to date, only my right side
• slows me down
• affects my speech and word recall abilities, especially when in public or under stress
• appears to be progressing slowly (touch wood)

All-in-all, I am not bad off for a 67 year old victim, or is that 68 years old? I forget.

“I had to stop driving my car for a while... the tires got dizzy.” (Sephen Wright)

I get foggy and a little dizzy later in the day. That is my cue to take a nap. Even after 10 or 15 minutes, I can awake feeling relatively relaxed. That was the good news. The bad news is the tendency to nod off is getting worse. Watching TV. In the bathtub (where I have ruined a book that landed in the water when I entered my short hibernation). And sitting in a chair. Part of the problem is my seemingly inability to sleep past 4:30 AM again. So, this weekend, my wife and I isolated ourselves at the cottage. Here, I hoped, I would be totally relaxed and would sleep past my "normal" time.

No such luck. Nope, 4:30 arrived and I was, furiously, wide awake. What to do? What to do?

I decided to get up, do my stretches and go for a walk.

Now, except for a couple of little incidents back in the winter, a walk is not difficult for me. Today, however, I felt a little dizzy and I realized I was bent at the waist. I forced myself to walk like I had a rod up my butt, but that only lasted as long as I concentrated on doing so. At last, shaken by what appeared to be a new symptom, I needed to sit down. I needed to relax. I chose a bench overlooking the lake.

The morning was warm and the sun was rising out of the horizon. The lake was perfectly calm and as I sat there, I too calmed down, accepted my fate, arose from the bench, stuck that proverbial rod where the sun don't shine and completed my walk.

When I reached the cabin, I cheered myself up by watching an episode of season 3 of "Pretty Little Liars". I would tell you what it was about, but sadly, I fell asleep.

(keep scrolling down)

The lake at 5AM

More PD Blogs

Here are a couple of more blogs I follow:

1. Wearing Off - by Chris et al. Chris also used to have an excellent forum, but it suddenly disappeared into the ether
2. The Jelly Chronicles Wobbling through life with parkinsons

Cramping my style

Here is the situation; but before I continue let me observe that while a woman may well suffer pain stoically, I am a male and dammit, I am here to complain.

While walking along in downtown Winnipeg, avoiding all the strange people who haunt the streets of our city, my right leg began to cramp. Initially, I ignored it but it got worse until I was forced to limp. AND, let me tell you, IT HURT. IT HURT LIKE HELL! I am beginning to take a disliking to the pains of PD, insistent as they are. Notice it was my right leg, which figures; the "disease" has only affected my right side, with short, manageable forays into my left. Anyway, I finished my business, went home and soaked in a hot bath. The problem subsided and at the moment, I am living happily ever after, watching TV, drinking a coke, hoping to hear the last of the Kardashians and thanking the gods that I am not equipped to have a baby.

Feelin' Groovy

If you don't count the exhaustion, today is one of those days where I feel good. Up at 5, one mile run, 2 mile walk/run. It is getting easier. At my desk by 6:30. Got my work done by 9:15. Even took my medication on time! Of course, I still feel tired but that is the only symptom at the moment (here I touch wood for luck). It is a different feeling. Yesterday, I felt wobbly (again) and getting up from the couch was not easy. Total opposite today. What a strange condition! Here today, gone tomorrow, but always there, lurking.

Well anyway, today I got no deeds to do, no promises to keep. I'm dappled and drowsy and ready to sleep........ That is just what I intend to do today, right after a couple of more hours of work.

I am grateful people read this blog. Knowing I have readers helps the healing. Here are some statistics on my catharsis:

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Page Views to Date - 13,391. Thank you

All I have to do is dreeeaaaeemmm. Dream dream dream....

I had another one of those virtual, technicolor dreams that PD is famous for (or maybe it's the medication - don't know; don't care).

In this one, a threatening man entered our bedroom and came toward me. In my dream, and at the same time, in real life, I awoke, sat up and started swinging wildly. Like an out-of-control windmill. Then I realized it was only a dream and I said aloud, as I laid my body down, "This is crazy. I am going nuts!" and just to prove I was correct in that assessment of myself, I got hooked on the TV show (Netflix), "Revenge", that can only be described as a soap opera for the slightly demented. Fourteen episodes so far and I see there is a second season. Help me!

Take these wobbly bones....

Definition of "Wobbly"
/ˈwäb(ə)lē/
Noun or Adjective

Wobbly (n): A member of the once-powerful syndicalist union, the Industrial Workers of the World. They are in favour of revolutionary unionism and see authoritarian control (such as bosses and politicians) as oppressive. Many wobblies subscribe to some form of anarchism.

Whoops! wrong definition; although, having read it, it is rather enticing - except for the anarchism part. No, this is the definition I am looking for:

Wobbly(adj) Tending to move unsteadily from side to side.
Weak and unsteady from illness, tiredness, or anxiety.

I went to the cottage this weekend, for a little R & R, avoidance of stress - just what the doctor should order for PWP. Had a great time with my wife, daughter and granddaughter. All seemed well - until I tried to arise from a sofa or chair. I would have to take two or three tries, falling back each time until successful and then, once standing, I wabbled. As the weekend progressed, I progressed to wabbling while walking, especially if taking a corner. Today, I am still wabbling, but it has diminished. I guess this another of PD's little joys, another example of God's sense of humour.

I am getting tired of laughing.