EVERYTHING IS ALL RIGHT, UPTIGHT, OUTA SIGHT!

Some time ago, I read a column in the local newspaper about four men deciding how they wished to die. One of them answered "with dignity". Apparently he was a person with parkinson's.

Thirteen months ago, I was diagnosed with parkinson's.

About 20 years ago, I was in a plane about to land in Houston when we were told the nose wheel had not come down completely and we should assume the crash position.

As the airplane began its descent, I just assumed everything would be OK, even when I looked out the window and saw fire trucks racing toward us. Obviously, I was correct. Everything turned out OK. The nose wheel came down enough and we landed safely.

I am having the same reaction to parkinson's as I did with the potential plane crash. Everything will be OK and so far, so good. Nothing has changed in my life, now that the medication has taken away my tremor. Well, other than my pre-pubescent voice. I am working on that.

I hope the person who wishes to die "with dignity" achieves his desired goal; as for me, I intend to live lacking pessimism. I refuse to "go gentle into that good night".

When I do die, I want to be cremated and have my ashes spread on Michelle Pfeiffer.

5150 and counting - this weeks stats

Canada 119

United States 16

Russia 13

United Kingdom 11

Ireland 3

Germany 2

Bulgaria 1

France 1

Gabon 1

Indonesia 1

Despotism of the Ether Lords

You have noticed the change in the appearance of my blog. I didn't do it. Blogger did. They took off my old format and gave me some "classic" templates to choose from. This is what I chose.

The cybergods have gone on an ether binge.

Am I from a different planet? No, seriously.....am I?

This condition and/or the medication can cause some strange things to happen. One or both can lead to vivid dreams - a type of virtual reality. Unfortunately, all mine are eerie and rather disturbing. Two recent dreams;

1. I am walking through a forest. I can feel a cool breeze and it makes me shiver. Just past the entrance to the forest, green leaves begin to turn yellow and, as I continue my journey, the leaves change to orange and back to green. This pattern continues until the trees are leafless. Tall trees with stout limbs. In the distance I can see things hanging from the trees and suddenly, I find myself among the hanging things. I look at them. They are humans, hanging by their necks. All dead. As I walk, the hanging humans become more numerous and soon I am bumping into them and then....I wake up!

2. I, and somebody else, are being pursued by a man in a black car. We are in a small "very smart" car. I am driving. We head out of town and in the distance is the "forest reserve" (Shilo brats will know whereof I speak). We take a dirt road that runs along the north side of the forest. We careen down the road, dust flying everywhere, with the black car catching up when I realize I am no longer able to steer and my legs are too short to reach the peddles. My companion says nothing he/she (not sure which) just stares ahead. "Don't worry" I say, "I will turn on the automatic drive and GPS and the car will know where to go". The car turns to the right onto another dirt road and then....then I am in a dank basement, with my companion, who now is most assuredly a female dressed in blue velvet. There is a terrible odour. We are frightened. A presence in the room is forcing us toward a steel door. The smell is getting stronger. The door opens and we step inside. The presence is no longer with us and we relax. The odour is overpowering. I turn on the light and piled up on the floor are - I don't know, but whatever they were, they were things that stank. Anyway, my companion turns to me and I take her hand and we run toward the steel door but the presence is back and is chasing us. We pass through the doorway and I reach back to pull the door handle and close the door to keep me (the female is gone now) safe from the presence. Then......... I wake up to reality, sort of, with my right hand stretched out of the bed, reaching for that door! Only a dream! Kind of interesting. Even wide awake I try to imagine endings to the story but I get bored and start exercising before leaving for my daily walk.

All kinds of lunacy happens in dreams, all kinds. Or, maybe I am just a lunatic!

Zonin' in the Gloamin'

What follows could be attributed to one or all of the following:

1. PD
2. Mirapex
3. Mad Cow disease
4. The Twilight Zone

I am lying in our queen-sized bed in that state where you appear to be sleeping but you are aware of your surroundings and the people in it. I am lying on my side when I feel a child walking on the bed beside me. His footfalls are real to me. I can feel each one. I will myself to ignore the sensation because there are no children in the house and I must be dreaming. The phantom child continues to jump and then, as mysteriously as it had commenced, the child disappears. I return to trying to get to sleep when I "feel" a presence at the foot of the bed. It's not a child this time. It is an adult. She just stands there. I immediately sit up, my neck hairs bristling to attention. Nothing. Nobody is there. My heart is pounding and I now know the uncertainty felt by Poe's character in The Raven...Deep into the darkness peering. Long I stood there wondering, fearing; doubting, dreaming dreams no mortal ever dared to dream before..............

Probably just an overactive imagination in the twilight zone of sleep. But, I don't enjoy the results. I would rather trim my nose hairs with a weed whacker!!

And the hits just keep on coming!

Two new developments:

1. While I was lying down on the bed, the big toe on my right foot started jumping around.

2. I can feel a periodic, slight tremor starting in my left hand. It is nowhere near as bad as the right hand tremor but it does indicate a progression of the condition.

I had another voice therapy session today. It was quite enjoyable. One exercise involves making the "aaawww" sound into a microphone connected to a computer. The computer shows you the loudness of your voice and the quality of your voice as moving graphs across the screen.

The therapist is trying to get me to speak louder. I feel like she is having me shout, but a sound measuring gadget shows me that I am speaking too softly; my decibel range is well below the range of 65 to 75 decibels, the normal speaking range. With work and encouragement, she had me speaking normally. I had my doubts, so she turned the gadget toward herself and she spoke into it, in her usual conversation voice, and I could see she was in that normal range. That gives me a clue as to how I should sound (internally) to achieve normal loudness in my everyday speaking. I am actively trying to do that now, even though I still think I am shouting.

Oh well.....what's next?

The Internet is becoming the town square for the global village of tomorrow (Bill Gates)

This past week's page views:

Canada 64
United States 12
Ireland 8
United Kingdom 6
United Arab Emirates 2
Taiwan 2
South Korea 1
Latvia 1
Malaysia 1
Germany 1
Kuwait 1

Total to date 4,812

Thank you.

Inside Information!

23andMe is an organization that uses DNA to aid in the research of certain diseases/conditions, including parkinson's. They have a world-full of potential donors. If you contact them, they will send you a kit to collect your DNA and when returned and analyzed, they give you your DNA profile with respect to your health and future health possibilities. In the case of parkinson's, if you have the condition, the entire process, including shipping charges, is free; otherwise, there is a small fee.

I think 23andMe is a useful organization and will help in finding cures for several health problems. The organization recently published some odd associations between parkinson's and certain traits.

(from: https://www.23andme.com/about/factoid/pd_phewas_personality/)

We found that the disease is associated with certain personality traits including being more agreeable, more neurotic and anxious, and being less extroverted. Based on survey results, researchers also found that those with Parkinson's were less likely to have sky-dived or had liposuction, but more likely to prefer sweet foods over salty ones.

Oscar Wilde once remarked that it was quite sad that there was so little useless information. Hmmmm.

I am starting to prefer the history of the past over my dreams of the future.

I watched Muhammad Ali toss the first pitch in a baseball game. He was diagnosed with parkinson's in 1984 and now is all crippled up and shaky and unable to throw the ball. It looks as if he is totally dependent on others. That is a scary future; however it has been 28 years since his diagnosis. 28 years from now I hope to be pushing up daisies.

It is hard to believe that the most well-known person in the world can go from a brash Cassius Clay to a totally disabled shadow of a man. I remember him at the Oscars with George Foreman when the film, "When We Were Kings", won best documentary in 1997. He was expressionless (PD mask) and shaky but still able to walk, climb stairs and generally come off as being independent. So maybe I will get a good 15 - 20 years in before the game is over.

With ever more effective drugs, I hope to lead a fairly normal life. Things can change. 8 months ago my right hand had a mind of its own, today, thanks to drugs, it is so calm I wonder if I have PD, and in the future....who knows? I try not to dream about the future.

Although Ali has described his PD as his life's greatest fight, he has also brought a touch of humor to his condition.......

"I always liked to chase the girls. Parkinson's stops all that. Now I might have a chance to go to heaven." (Muhammad Ali)

Parkinson's has Ali on the ropes, but he continues to fight and is still the "Greatest".

I am so clever that sometimes I don't understand a single word of what I am saying. (Oscar Wilde)

You ask me how I am doing. Take a seat, and I will try to tell you. It is a tale of quiet optimism, occasional pessimism but rarely, if ever, fatalism

I am fairly lucky. The only noticeable PD symptom these days is my voice, or lack thereof. It seems to almost disappear at times. Thank goodness for speech therapy; although, I have a very sore throat and can't practise like I should.

So, you say, you are losing your voice! What's the big deal?

Well, sit back and I will tell you. The British Geriatric Society did a study in 2005 in which it asked PWP about how speech problems affected them. Here are some of their findings:

Central concerns were not that voice was monopitch, particular sound contrasts difficult, or similar. Except in the most severely affected speakers these restrictions could in extremis be modified, at least for brief stretches. Rather individuals focused on the impact changes exerted on ability to communicate, their view of themselves, and the detrimental effects of the effort required to overcome physical and mental limitations for anything beyond short periods.

Further difficulties with conversations linked to changes such as distractibility, diminished attention span, problems initiating speech movements, difficulty finding words and formulating ideas. These rendered it difficult to get into conversations and hold one’s place there, led to feelings of frustration at not being able to make one’s needs known and depression or annoyance at being neglected by others. A frequent consequence was withdrawal

You can see there is an effect. For a PWP, including me, the speech problems can be annoying, frustrating and embarrassing.

I am learning to cope with the problem, usually by remaining silent, but other times just going with the flow. But, as I said, it can be frustrating. It is like I am waiting for the tulips to bloom but I forgot to plant the bulbs.

You will have to excuse me, I am being called to dinner. Ever onward and upward and always on a full stomach.

Tire the sun with talking and send it down the sky

I went to my first voice therapy session today. It lasted one hour and consisted of me making an "aaaaahhhhh" sound for about 15 times, holding it as long as I could, reading words, trying to reach a certain loudness target and watching on a monitor how close I could come to that target. I didn't know I could make such sounds and it felt like (or "heard like") they were coming out of some dark, deep chamber somewhere in my body and although they were emanating from my mouth, some mechanism, other than me, was making the noise. I believe I might have been possessed.

The most common speech problems experienced by PWP are reduced volume (hypophonia), reduced pitch (monotone), and difficulty with articulation of sounds or syllables (dysarthria). If you are a PWP then you can’t speak as loudly as others, it is more difficult to convey emotion when speaking and it is a problem for you to form the words you are trying to pronounce.

The voice therapy I am involved with is called LSVT (Lee Silverman Voice Treatment. If you are of a mind to, you can see the treatment in action here.. It is quite intensive at 2 hours per week for 8 weeks (but I think I have already blogged about LSVT, So I am not going to go into detail). However, it should help me and lord knows, it is no use talking in a quiet voice that nobody can hear.

As that old Yankee, Yogi Berra, commented, "it was impossible to get a conversation going. Everybody was talking too much."

I have a sore throat!!! Too much aaashhhhing!

It is now 2 hours later and I have just returned from the law courts where a clerk said to me, "I'm sorry. I didn't hear you. You speak so softly."

WHAT! BUT I..... DAMN SORE THROAT FOR NOTHING!

I need to find an outlet for my frustration.