Thank you Poland. I hope you become (a) regular reader(s)
counter
Sunday, 6 November 2016
Friday, 4 November 2016
Defying Gravity
While travelling with my younger son, the topic of my future came up and I opined that I might lose all control of my body, but I was going to try hard to stay healthy.
"I will be there for you, I promise," he said.
To say I was choked up would be an understatement.
Over the next few days I began to see the possibility of that bleak future but I have rejected it outright. I will be one of the lucky ones. I will defy expectations and PD will advance slowly. I might hit stage four, but I doubt it. I will probably be dead before that unthinkable outcome And, if I do get into four and five, I will have support.
What stage am I at now? Good question. Every victim is different, so I can't count on the averages of the amount of time spent in each stage set out below. I can only guess at my own position.
Here is a summary of what I know of the condition. I go over it occasionally to see how I am doing.
Early Stage Parkinson’s (stage one perhaps)
"I will be there for you, I promise," he said.
To say I was choked up would be an understatement.
Over the next few days I began to see the possibility of that bleak future but I have rejected it outright. I will be one of the lucky ones. I will defy expectations and PD will advance slowly. I might hit stage four, but I doubt it. I will probably be dead before that unthinkable outcome And, if I do get into four and five, I will have support.
What stage am I at now? Good question. Every victim is different, so I can't count on the averages of the amount of time spent in each stage set out below. I can only guess at my own position.
Here is a summary of what I know of the condition. I go over it occasionally to see how I am doing.
Early Stage Parkinson’s (stage one perhaps)
- ----Movement problems are noticeable to the victim but he/she can handle them. They can be inconvenient and sometimes embarrassing but do not present an obstacle to daily living.
- For example, my movement problems first presented on the right side of my body as a tremor in my right hand and impossible contortions of my right leg and foot that left me aghast at the pain brought on by hideous and sustained cramps. A condition known as dystonia (see 2011 posts).
- ----Parkinson's drugs work well to suppress these symptoms completely - if you remember to take them regularly, something that is easily missed, to one's detriment, for which I can vouch.
- ----Regular exercise helps suppress the symptoms and is believed to be the one thing that can slow the progression of the disease. If you are a long time reader, you will know all about my exercise regime and are probably sick of hearing about it. I won't burden you with it until a later date.
Early Moderate Parkinson’s (stages two and three maybe)
----Oh, no! Movement problems appear on the other side of the body. I can sometimes feel
them as a tremor in my left hand, but they are insignifican
----Oh, oh! Movement problems appear on the other side of the body. I can sometimes feel them as a tremor in my left hand; but, they are so insignificant that I cannot say for certain I have darkened the door step of stage two. The thing is, the drugs are so efficient at keeping my symptoms at bay that I might be on the porch.
----Oh, no! Movement problems appear on the other side of the body. I can sometimes feel
them as a tremor in my left hand, but they are insignifican
----Oh, oh! Movement problems appear on the other side of the body. I can sometimes feel them as a tremor in my left hand; but, they are so insignificant that I cannot say for certain I have darkened the door step of stage two. The thing is, the drugs are so efficient at keeping my symptoms at bay that I might be on the porch.
- ----Movements slow down. Aye, there's the rub. My body move movements are the speed of the tortoise.
- ----First signs of lack of co-ordination appear. I have to admit, I am having slight problems with balance but PD does not yet affect my daily routines.
- ----They tell me that“Freezing” episodes may occur in the later part of these stages. Kind of an interesting condition, but not one I wish to experience. Or, maybe I do. I am just not sure.
- ----You may encounter "wearing off" of the drugs in your cycle - i.e., the drugs are not as effective and their protective duties are weakened before you take your next pill.
- ----Some PWP will develop dyskinesia from the use of drugs. Dyskinesia is involuntary movements sure to cause problems. It is important to note that not all victims will be subject to this annoying facet.
My Situation Today
- I think that after approximately 7 years post DX, I must be in the early part of stage 2.
- Right now I could live independently without any problems and I think I will probably remain in stages 2 and 3 for awhile.
Advanced Parkinson’s (stages 4 and 5, no doubt)
- ----A PWP cannot lead an independent life. The body may have deteriorated to the point of requiring a wheel chair. Assistance will be required toward the end of stage 4 and into 5.
- ----This is when real hallucinations occur, as opposed to my nano second, early morning visions.
- ----About 20% of PWP will develop cognitive problems.
- ----Medication will be less effective and side effects will become more prominent.
- Sounds pretty devastating, doesn't it? Check out this study at www.viartis.net/parkinsons.disease/news/100312.htm, a study that concluded that while lengths of time in each stage are not predictable, the average time spent by their subjects in the study was:
- 1. stage one to two = 1 year 8 months
- 2. stage two to three = 7 years 3 months
- 3. stage three to four= 2 years
- 4. stage four to five = 2 years 2 months
- The writer hastens to add,"Progression is not inevitable. Some people with PD have either: stayed the same for decades, reduced their symptoms, rid their symptoms, or worsened at a rapid rate."
- Let's all plan to defy the "worsened at a rapid rate" portion and vow to stay the same for decades.
- Positive thinking is a required treatment. I think I have written about positive thinking in earlier posts. If not, I shall burden myself on you down the road.
- Say with me: "I'm through with playing by the rules of someone else's game." and get on with life without the dark cloud of despair hanging over our heads.
- Before I forget, "Everyone deserves a chance to fly."
- Got it?
- Yes?
- Then lecture completed.
Tuesday, 1 November 2016
"J'ai steef"
I was at a track meet in Quebec City some 20 years ago, and I heard a young female athlete moan to her friends, "J'ai steef" (I am pretty sure she meant "stiff"). Frenglish? or is "steef" part of the French-Canadian language now?
But I digress. Pour moi, je suis raide (or maybe "rigide". I am not sure which is correct.)
Yup, I am"raide" all over. Perhaps you are too, especially if you have PD. I have read that stiffness is another curse sent to us by our pesky condition.
Getting out of bed after a night's sleep, or what slightly resembles a sleep, is a chore. Legs don't bend that easily. From the bed to the toilet, I am a perfect Frankenstein. You know, stiff arms, stiff legs. After less than a minute, I reach the point where I can bend my limbs. So what now? I do some stretching, followed by 30 - 60 minute workout. Et voila! Movement becomes easier - an easier stiffness.
Foxfeed did an article with recommendations to help ease PD stiffness. The following is a summation:
1. Move - don't stay in one place too long. I ignore this because I am at my computer for hours on end and guess what? J'ai steef!
2. Develop and maintain an exercise regime. I did and do. I credit it with slowing the advancement of my PD.
3. Have a hot bath to relax your muscles. I do this almost daily and almost daily, I fall asleep in the tub. It does help relieve some stiffness; but, one caution. Don't try to read a book. You may never learn what happens in the end. I speak from experience.
4. Try weight lifting - not sure if that doesn't add to the stiffness, but I do it anyway as part of my exercise plan.
5. Try Yoga - I will do so as soon as it has been reliably ascertained that hell has frozen over. Those yoga contortions are impossible. I am sure yoga is beneficial, but I can't do it. Just not in the ballpark.
Maybe if I could do yoga, my circumstances would change but until then, or until I do at least 4 of the 5 regularly, the following will be my history and my future:
I was steef, I still am steef and I will be steef until I am a steef.
But I digress. Pour moi, je suis raide (or maybe "rigide". I am not sure which is correct.)
Yup, I am"raide" all over. Perhaps you are too, especially if you have PD. I have read that stiffness is another curse sent to us by our pesky condition.
Getting out of bed after a night's sleep, or what slightly resembles a sleep, is a chore. Legs don't bend that easily. From the bed to the toilet, I am a perfect Frankenstein. You know, stiff arms, stiff legs. After less than a minute, I reach the point where I can bend my limbs. So what now? I do some stretching, followed by 30 - 60 minute workout. Et voila! Movement becomes easier - an easier stiffness.
Foxfeed did an article with recommendations to help ease PD stiffness. The following is a summation:
1. Move - don't stay in one place too long. I ignore this because I am at my computer for hours on end and guess what? J'ai steef!
2. Develop and maintain an exercise regime. I did and do. I credit it with slowing the advancement of my PD.
3. Have a hot bath to relax your muscles. I do this almost daily and almost daily, I fall asleep in the tub. It does help relieve some stiffness; but, one caution. Don't try to read a book. You may never learn what happens in the end. I speak from experience.
4. Try weight lifting - not sure if that doesn't add to the stiffness, but I do it anyway as part of my exercise plan.
5. Try Yoga - I will do so as soon as it has been reliably ascertained that hell has frozen over. Those yoga contortions are impossible. I am sure yoga is beneficial, but I can't do it. Just not in the ballpark.
Maybe if I could do yoga, my circumstances would change but until then, or until I do at least 4 of the 5 regularly, the following will be my history and my future:
I was steef, I still am steef and I will be steef until I am a steef.
Thursday, 27 October 2016
Up the snakes and down the ladders
My life is turning upside down. I've got PD and my wife had cancer (her operation was a success). The problem is, our family has always been lucky. Somebody once described us by saying, "You guys could fall in a bucket of shit and come out smelling like roses". I can handle the PD and I expect in 5 years time, significant progress will be made in all brain disorders. Therefore, my condition has never really bothered me, once I came to terms with it; but, when my wife came home from the doctor and announced, "It is not good news", I felt the earth shudder. But even that has not dampened my optimism for either of us. Our future's so bright, we have to wear shades (to quote somebody).
Now, if only I can find a bucket of shit.
Now, if only I can find a bucket of shit.
Monday, 24 October 2016
Sunday, 23 October 2016
Viewing a movie is a moral law. It gives soul to the universe, wings to the mind, flight to the imagination, and charm and gaiety to life and to everything.
Okay. Vivid Dream #5 or so, subtitled "My friend the switch dodger"
My fiend, who shall be referred to as "B" herein, got a job, post-retirement, teaching students in a dark cave (subconscious Plato maybe). I was jealous of B's initiative and wanted in. At first he was ready to accommodate me but when I told him I wanted the students to turn their desks around so they could see the movie playing at the front of the cave, he became resistant.
"School is no place for movies! Their desks will remain as is and if you don't like it, shove off"
Such language! I was determined to impose my advanced methodology on him and have the students reverse their desks in order to see the light cast by the movie projector. There was no movie currently playing but the projector's light would give the young people a different experience. I decided to violently force B to change his philosophy and so I sought out my father's military, ceremonial sword and went on the hunt.
Unfortunately, B's body guards, two young women, one an experienced poisoner, the other an experienced swordsman using a straight blade sword and one of those curved weapons like you see on TV, had learned of my plan. They were waiting for me at the mouth of the cave. Just as I glanced into the dark, only to see the class looking in the wrong direction, B's body guards jumped me and surrounded me (B had joined in the fight but was only using a library card & and erlenmeyer flask). A terrible fight ensued but I was holding my own. My sword blocked every attempt they made. I parried viciously and accurately but I did no damage and I was getting tired. My arms began to flail in all directions. With one last roar, I put all my energy into one last parry only to....
"Wake up. Wake up. You are having a dream." My wife said and repeated, "It's only a dream."
"I was sword fighting," I explained.
"Oh, that explains the noises and the flashing of arms. Go back to sleep."
As I lay back down, unsuccessfully trying to recapture and restart the dream, I had to admit to myself I had failed. For all I know, those students still have not seen the light, doomed as they are, to face the darkness of the cave for eternity.
Stand by for a sequel. These parkie dreams are unpredictable.
My fiend, who shall be referred to as "B" herein, got a job, post-retirement, teaching students in a dark cave (subconscious Plato maybe). I was jealous of B's initiative and wanted in. At first he was ready to accommodate me but when I told him I wanted the students to turn their desks around so they could see the movie playing at the front of the cave, he became resistant.
"School is no place for movies! Their desks will remain as is and if you don't like it, shove off"
Such language! I was determined to impose my advanced methodology on him and have the students reverse their desks in order to see the light cast by the movie projector. There was no movie currently playing but the projector's light would give the young people a different experience. I decided to violently force B to change his philosophy and so I sought out my father's military, ceremonial sword and went on the hunt.
Unfortunately, B's body guards, two young women, one an experienced poisoner, the other an experienced swordsman using a straight blade sword and one of those curved weapons like you see on TV, had learned of my plan. They were waiting for me at the mouth of the cave. Just as I glanced into the dark, only to see the class looking in the wrong direction, B's body guards jumped me and surrounded me (B had joined in the fight but was only using a library card & and erlenmeyer flask). A terrible fight ensued but I was holding my own. My sword blocked every attempt they made. I parried viciously and accurately but I did no damage and I was getting tired. My arms began to flail in all directions. With one last roar, I put all my energy into one last parry only to....
"Wake up. Wake up. You are having a dream." My wife said and repeated, "It's only a dream."
"I was sword fighting," I explained.
"Oh, that explains the noises and the flashing of arms. Go back to sleep."
As I lay back down, unsuccessfully trying to recapture and restart the dream, I had to admit to myself I had failed. For all I know, those students still have not seen the light, doomed as they are, to face the darkness of the cave for eternity.
Stand by for a sequel. These parkie dreams are unpredictable.
Thursday, 20 October 2016
Home is the sailor, home from sea
When our family crossed the ocean on the Empress of Britain so many years ago, one of our survival abilities was to learn how to walk on a ship, particularly in rough seas. We managed to get our sea legs quite quickly and strolls around the ship still were adventures.
The Empress of Britain (1955 I think)
Being young, following a brutal bout of seasickness, we would go to places children should have been wary of, but that is for a later blog. We explored every inch of that ship, using our land legs to bounce from wall to wall until we got our sea legs - a very strange phenomenon akin to not being in control of your body and then regaining it with a kind of upright duck walk.
I am entering a phase in PD where l need my sea legs back. There are moments when I am glad we have walls, so that I can carom off them to get to my destination. This is common in the morning but when I take my meds, l start to feel normal again - legs work like they should, no pinball action of bouncing from wall to wall. I start to feel good once more, like when we got over the seasickness and were able to conduct our explorations.
I want to still be able to explore but I am a realist. PD may someday retire that little gift, removing my ability to walk; but, as the captain of the Empress of Britain correctly predicted, when the sea got rough, there was coming a slow wind that would quiet the sea. Now, I too can sense the coming of a cool, calming breeze. My "spidy sense" thinks it is bringing with it, a cure.
In the meantime, I still have a need to explore while my legs still work! Too bad there are no ocean liners; it is difficult to explore airplanes. Seen one, seen them all.
Being young, following a brutal bout of seasickness, we would go to places children should have been wary of, but that is for a later blog. We explored every inch of that ship, using our land legs to bounce from wall to wall until we got our sea legs - a very strange phenomenon akin to not being in control of your body and then regaining it with a kind of upright duck walk.
I am entering a phase in PD where l need my sea legs back. There are moments when I am glad we have walls, so that I can carom off them to get to my destination. This is common in the morning but when I take my meds, l start to feel normal again - legs work like they should, no pinball action of bouncing from wall to wall. I start to feel good once more, like when we got over the seasickness and were able to conduct our explorations.
I want to still be able to explore but I am a realist. PD may someday retire that little gift, removing my ability to walk; but, as the captain of the Empress of Britain correctly predicted, when the sea got rough, there was coming a slow wind that would quiet the sea. Now, I too can sense the coming of a cool, calming breeze. My "spidy sense" thinks it is bringing with it, a cure.
In the meantime, I still have a need to explore while my legs still work! Too bad there are no ocean liners; it is difficult to explore airplanes. Seen one, seen them all.
Subscribe to:
Posts (Atom)