The Bells of Hell go Ting-aling-aling

I am sitting with my father in the care home. He is trying to tell me something but it isn't coming out. It is all nonsense, no real words, no structure, his hand waving in the air as if that will help. I pretend to know what he is talking about. He stops abruptly and says the first intelligible thing in a long time, "Ah, Doug," he sighs, "I have gone to Hell." He had momentarily looked out of his lost world and caught a glimpse of reality. But, it went away as quickly as it had arrived.

Altzheimers is like that. A life in hell with the occasional taste of reality.

I don't have Altzheimers, and I am glad of that. I doubt I ever will come down with it. I also doubt that I will ever come down with Pd related dementia. But still, I have my own personal hell.

Medications make my day relatively normal, but all PD medications are cloaking the fact that parkinson's continues to attack. Eventually the medication does not do a thorough job and the symptoms begin to return. You go along with your life, confident that the medication will keep the symptoms away (especially "the beast" found in my earliest entries)but you know there will come a time when a voice will say They're here . That voice has awakened me the past two nights.

The first night, I suffered a painful cramp in my right calf. It woke me up but I was able to ignore it and fall asleep. Not to be outdone, it attacked my left calf. This was the first time my left side has been victimized. I stood and the cramp left me. I had won.

The second night, my right leg shot straight out. The tibialis muscle, or whatever the muscle on the exterior of the leg is called, became rock-rigid and my toes began to curl down as my foot was in the process of curling inward and upward. The beast was back! I cursed and jumped out of bed. I stood for about 5 minutes until it let go of me. I got back into bed, still cursing and then, ironically, I remembered what somebody said, "you can talk all you want about your religion, but if it does not teach you to love the beast as well as mankind, your religion is a sham".

Well kids, I sure ain't lovin' that beast and nor am I too fond of old time religions that offer no explanations for the existence of the dainty hells found on earth.

Heathen: "If I did not know about God and sin, would I go to hell?"
Priest: "No, not if you did not know."
Heathen: "Then why did you tell me?"

Situation Tolerable

I work out of my home and when clients come to see me, they sit on a couch and I sit in front of them on a stool and hand them the papers they need to sign. It was no different last night - 3 clients, husband, wife and wife's father.

I was not expecting them that night (mix up, probably my fault)so when the doorbell rang, I was slow to answer in case it was somebody trying to convince me that Jesus walked among North American Indians. I took my time getting out of my pyjamas (pajamas), and puling on some "sweats." Looking all disheveled, I answered the door to find my clients patiently waiting for me. Fortunately, they were courteous and didn't react to my appearance and equally fortunately, all the papers they had to sign were ready. I invited them in. The husband and wife sat on one sofa and the father sat in another one across the room. I sat on the stool between them.

When I say I "sat", I did so only after having PD momentarily hit me. As I was going down to sit on the stool, I lost my balance. The feeling of helplessness lasted only a nanosecond, but it was enough, and I fell backward onto the floor.

"Are you OK," the wife asked, genuinely concerned.

"Yes," I replied and I explained to them that I have PD and lately have had some balance problems. The situation was embarrassing, but tolerable.

The PD forums are full of people who won't divulge they have the condition for one reason or another, but embarrassment is prominent among those reasons. I tell anyone & everyone (obviously - anyone can read this blog) and I ask you, if your lawyer fell off a stool, creating a scene, would you, as his client, be more comfortable with a diagnosis of PD as opposed to alcoholism or worse, plain stupidity?

At least now, I have an excuse, one that everybody sympathizes with, when I act foolish

Drinking makes such fools of people, and people are such fools to begin with, that it's compounding a felony. ~Robert Benchley

This & That & The Other Thing

I haven't much to write about and I guess that is a good thing. I do get the occasional cramp in my right leg. They're not so bad. I just stand up and, for a few minutes, I go to my happy place until the cramp decides to leave me be. Where is my happy place? I don't remember. It is different every time. I wouldn't want my imagination to get into a rut.

When I am resting, my body can jerk around like a marionette that is being manipulated by a drunken puppeteer, but, in some twisted way, I enjoy those. Some times, they can be brutal and for a moment, I feel like how that girl in The Exorcist must have felt, a part of me momentarily suspended in the air. It is only for a nano second, but it is an experience. Most of the time, the twitches are just gentle reminders that all is not well with my brain. Either that or I am possessed.

One possible foreshadow - I get a little off balance when I stand. So far, I control it but, in the future, who knows?

Finally, the one symptom that bothers me is my mouth can't keep up with my brain. My wife says I speak quietly and don't enunciate. Problem is, I can do neither and so at times, I sound stupid - at least to myself; therefore, I figure the same perception goes to the recipient of my stunted mutterings. Thank God for the computer and the fact that I took typing as an option in high school, no doubt to avoid a more onerous subject. It has served me well.

Time to watch the American election news. It fascinates me. For one of the candidates, (two if you count his VP), Napolean's remark, that in politics, stupidity is not a handicap is highly appropriate. To avoid insulting any American friends,I won't say which candidate(s).

Good night and good news.

Walk Like a Man

Researchers speculate there might be a connection between a person's gait and the possibility of dementia at some point in his life. The shorter the gait, the greater the possibility of dementia. So naturally, being the hypochondriac that I am, I took notice of my gait on this morning's walk. I concluded that my gait was normal, if not better than it has been, following a few months of strolling around the neighbourhood at 5 in the morning. No dementia for me! I should have known, as I can still perform fairly complicated math in my head and crosswords are not particularly challenging; however, when I speak, my mouth can't keep up with my brain and I sometimes think I sound like I am not playing with a full deck. Can't be helped and anyway, the noise level, in any group in which I am a participant, is seriously lessened by my silence. That must be a good thing, right?

Speaking of gait, I was downtown yesterday at about 1pm to go to the Land Titles Office. This can be a real adventure as there are some fairly exotic(?) people who lurk in the shadows of the office buildings. I have been accosted many times and have survived. My technique is to keep my eyes wide open, look straight ahead, don't respond to the ravings of these denizens and above all, increase my stride and the speed of my walk. Perhaps fear is what is causing my gait to exceed normalcy!?

{At this point in my writing I was interrupted by the Fed Ex guy with a Blackberry Playbook I got off ebay}

Excuse me. Where was I? OK.....Right.....I was talking about going downtown yesterday.

All right then, to continue with the story. It was midday and cool enough that I wished that I had worn gloves, so I was hurrying along (good gait, nice pace). I came out of the parking lot and there in front of me was a drunk, weaving down the side walk. Great! Now what? I slowed down, stayed behind him and watched as he staggered along, but I knew that I would have to pass him at some point. I took a deep breath, eyes straight ahead, determined not to answer if he said anything, increased my gait and hence, my speed, and passed him without incident. My gait was great, well above my usual and relative to the drunk, I was moving at light speed. I was the Flash in plain clothes, my speed blindingly fast and hiding my PD. No dementia here!

On the other hand, the drunk may have had more brain power than I thought. You see he was staggering in a perfect sine curve. I guess he must have been practising his trigonometry. At least, I hope that was the case because nobody should be that close to unconsciousness at 1 o'clock in the afternoon, or maybe, looking at his gait, he may have been entering the mindlessness of dementia. Who knows and coldly, who cares?

On my return he was still there, stumbling along with another street creature, not nearly so drunk, who said to him, "C'mon. Hurry up. Walk like a man."

I prefer to think he knew he as marching in a Sine curve with visions of trig functions in his addled brain!

Just another little chapter in the saga of our downtown jungle.

The Man from U.N.C.L.E.

U.N.C.L.E. - the union of newbies ceasing to live effortlessly.

Do you know that feeling you get when you have had a little too much to drink, (or for all you tea totallers out there, when you spin around a few times), and then you rise from where you were sitting or try to walk a straight line, and you kind of stumble?

Of course you do! We have all experienced that uncertainty a few times in our lives. We always recovered without any effort and went on our way.

Well, my life contract has been amended to add a clause requiring me to occasionally go through the experience and to have to exert some effort in the recovery phase. When I arise from sitting, I momentarily stumble about 25% of the time, without having been drinking or spinning. I always catch myself so I don't consider it a problem.....yet. If it does become a problem, hopefully L-dopa will keep it in check. I am avoiding L-dopa as long as possible because, it is thought that after prolonged use, L-dopa loses its effectiveness. Some experts deny this is the case. I figure, why take the chance? So I will continue on dopamine agonists until they no longer work. It is just the way things are - bad today, worse tomorrow.

Sounds depressing, so lets change the topic. Let's chat about dyskinesia!

The simplest definition of dyskinesia is "the inablility to control movements, characterized by spasmodic or repetitive motions or lack of coordination." Well, late last night, I experienced the mother of all spasmodic episodes. I was on my bed, in the gloamin of just drifting off, while listening to the BBC on the satellite radio, and was just entering sleep mode, when I was rudely awakened when all the muscles of my entire upper body decided it was time to release any pent up aggression they possessed toward me in one simultaneous giant twitch, shudder, tremor (one or all of them). A myoclonic spasm of the nth degree.

I have to conclude these twitches I have been experiencing are not the run-of-the-mill myoclonic spasms we all have visit us from time to time, but rather; I have been introduced to a form of dyskinesia. It is becoming a nightly event. I knew it might come at some point along my journey but I would have preferred not to have to welcome it so soon. Nothing is quite so sure as change in PD. That is the rule, but it is not my ruler.

There's just no point to it!

I no longer point to things with my right hand. It is too embarrassing. Not only does my hand shake, but my pointing finger gets into the act as well, vibrating up and down at lightning speed. I can usually hit a target I am aiming for, such as the touch screen in my vehicle, but it takes a few seconds. Fortunately, I have voice command for the radio stations I know the call letters to, but otherwise it is a waste of time, and dangerous (I take my eyes off the road), to try to use the menu while driving with one hand while the other hand gets its exercise.

The result is, I no longer point because there is just no point to it.

My pointing finger also operates the left hand button on my mouse. While my finger doesn't have a continuous vibration when it is on the mouse, it does have a way of clicking the button without my input, or hitting a letter twice when I want it to strike only once. These little joys can be quite frustrating. For example, one time I was writing a long report and about 3/4 of the way through, my finger hit the button 3 times. The report disappeared and I don't know where it went or what caused to go away. I don't know what happened, but whatever it was, it happened very quickly. I need to find a way to harness that energy!!

The body continues its inexorable journey of deterioration. But, today, I feel good and who cares what tomorrow may bring. To paraphrase Mark Twain I can easily endure adversity.......... Another man's, I mean.