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Monday 29 December 2014

Take it easy, but take it.

I said I would put my legs to the test today and I gave it a good try. Instead of 2 trekking poles I only used one (on the recommendation of my brother, a serious trekker who has forgotten he is 65). One is better than two. You can't go as fast; therefore, you don't experience the onset of festination, which usually occurs when I move quickly.

Alas, sadly, it wasn't much of a test. With the wind chill, the temperature was - 37C. I dressed warmly but hey, how much can a person wear and still be able to move. After 1.5km, I turned and went home, half frozen. The 3k in total were uneventful. I felt no urge to fall forward, so things are looking up as far as my daily 3 mile walk when we go to South Beach. I was afraid I would not be able to walk too far without falling. I am going to go for the full 3 miles and I will only use the one trekking pole. I will be fine if I can force myself to just take it easy.

Statistics for the Past Week (pageviews)


  1. United States 55
  2. Canada 42
  3. France 34
  4. United Kingdom 23
  5. Poland 6
  6. Russia 4
  7. Germany 3
  8. India 1
  9. Turkey 1
  10. Ukraine 1
Grand Total to date: 28,745

"All truly great thoughts are conceived while walking.” ― Nietzsche,

Sunday 28 December 2014

Round and round the world goes round. We can't stop it my friend"

Hallucination: when you see, hear, feel, smell or even taste something that doesn’t exist. Hallucinations can affect all of your senses, not just your sight.

I have had a couple of auditory hallucinations lately - somebody calling my name; loud knocks on the door (nobody there); laughter. It is unsettling and I believe it is too early in the deterioration PD process plus, they occur when I am tired, I don't know if I am in the twilight zone surrounding the entry to erobus, land of Hypnos. Fortunately, if they are hallucinations, I can "think" them away and they cause me no worries; however, they have the potential to poison my life if or when they become "real" hallucinations. So far, so good

I can't stress enough the need to take your medication on time. Yesterday, I forgot to take my second dose of the day until 8 hours after the first. The result was the symptoms returned. That which the drugs held prisoner, escaped, and my right hand started to tremble while my right leg rippled on the inside and was noticeably weaker on the outside. When I stood, I wobbled around as it had when I first drank lemon gin. Well, it wasn't that bad. The room did not spin as it did when........ This time the dizziness was only momentary, lasting nano seconds, but sound enough that I won't forget to take my pills on time. Today all is good.

I seem to be getting loath to leave the house for fear I might fall. I will fight the need to remain housebound and will put my legs to the test in the morning. The problem is, and I hate to say it, but vertigo is the dizziness of my imprisonment. I will put my effort into a new definition - ie - vertigo is the dizziness of my enlightenment.

Thus endith the metaphors.

Sunday 21 December 2014

Don't want to end up a cartoon in a cartoon graveyard

Well, we are off to Paris in September. I am not looking forward to the trip over the Atlantic. It is not the first time I have been overseas and I give away my age by telling you travel in those days was by ship. We crossed the ocean both ways on The Empress of Canada, an ocean liner. It took us 5 days each way. It wasn't so bad. My brother and I were young and a ship is a fabulous playground. We were impervious to danger, even after the life boat drill, complete with floating vests and having to go to our stations. The thought of a disaster never occurred to us. And to make it all the better, we had our own stateroom. It was a splendid, slow and luxurious way of travel.

Unfortunately, this trip to Paris will not be by ship of course.

Flying is not my favourite way of traveling. I expect it to be the hell I have found flying to be. Getting through security can be a long, tedious, process, especially if you have PD. Once on the plane, if you are not up front with the elite, you are behind the curtain with the babies. There are always babies or impatient little ones. Usually they don't bother me but if I don't get any sleep flying over the ocean, I will deplane a tired, miserable and cranky old man.

And then there is that little doubt about how that heavy time machine can change from a roaring locomotive into a metal bird. I understand the physics of flight but occasionally I doubt that it is real and see myself falling into the ocean. These are fleeting doubts and logic and statistics tell me dropping out of the sky is unlikely. After all, in the words of Shelly Burman, "flying is the safest way to fly". And, "I don't know how much consideration they have given to walking when they say flying is the safest way of travel" And "why do they have to call the airport a 'terminal".

For the most part, I have not had a fear of flying for 30 years, until now. It has nothing to do with the plane and everything to do with customs. If I become one of the "chosen ones" to be checked, the little stress it might cause could turn me into a quivering mess ("he seems nervous about something") and when forced to talk, my speech would be quiet and punctured by long pauses as I look for the right words ("I think he is hiding something, let's check his luggage")where they would find my medicine, in prescription bottles, and ("hmm. Do you think we should check if they are really what the bottle says.")

Now, I have travelled to the USA many times and have never encountered this, but as my condition worsens, you never know. I can hear myself getting off the plane, exhausted and angry, and turning into a fair facsimile of Foghorn Leghorn when confronted by a young customs officer. "Pay attention son, look at me when I am talking to you son, I have PD, I say PD. You don't know what I am talking about? Well son you are just about as sharp as bowling ball. Is any of his sinking in. I have the shaking palsy"At that point I might be arrested. No, that wouldn't happen because by my nature, I will do everything they ask and more, in a very pleasant manner.

Perhaps I worry too much but I am pretty sure this will be my last trip overseas. I just don't have a Marco Polo nature.

Speaking of traveling overseas, here is a quote from Britney Spears.

"The cool thing about being famous is traveling. I have always wanted to travel across seas, like to Canada and stuff"

Pretty and talented, but as Foghorn would say. "Kind of reminds me, I say, of Paul Revere's ride ---- a little light in the belfry."

Tuesday 16 December 2014

Wake me up before you go go

I am taking it easy these days, doing pretty near nothing. I picked up an article on Grizzly Bears. Ursas Horribilus - there is a middle name too but it had no impact on me. I read that there are about 50,000 grizzlies in North America with only about 1800 in the southern USA. You know what that means! The rest are in Canada or Alaska. I vote they all move to Alaska. I have an irrational fear of grizzly bears. You gotta know it's irrational because I hardly ever leave the house. The chances are I will never meet one.

I am so tired these days. I can hardly lift my legs and I have begun to shuffle. You can hear me coming like a well fed zombie. I was lying on my bed feeling exhausted. I drifted off and lo and behold, my dream was of a grizzly bear attacking me. Fortunately, I woke up with a start just when the bear was rising on his hind legs with outstretched arms and I was going to have to wrestle with it, but I was too tired.

I looked at my clock. Only 5 minutes had passed since last looked at it. Short sleep. Long dream.

"A wrestling match with a bear!" I thought, "Ridiculous".

I got up and zombie walked to the kitchen to finish my crossword puzzle. I was half asleep when it came to me. It wasn't a bear I had been wrestling with; rather, it was PD. The bear was just a metaphor for the evilness of Parkinson's. Eureka! I had outdone myself. In my exhausted state, I had twisted a dream encounter about a bear into a parable about PD.

So, what was the lesson we should all take from this parable. Well first, if you are wrestling a grizzly the match will be over when he gets tired, not when you do (PD never stops attacking) and secondly......well.....there is no secondly. So I will leave you with this advice, If you go out in the woods tonight, prepare for a big surprise. If you go out in the woods tonight, you better.......(you know the rest)

Thursday 11 December 2014

Every day a blessing

So you have been diagnosed with PD. Well, boo hoo. You are alive and have a future and believe this, the fear of a future with PD is worse than the future itself. And there are people worse off than us.

I met with a family yesterday. It was a sad meeting. Two ladies and their mother who were meeting with me to talk about their future, without their father. The mother had arrived home a couple of days earlier to find her husband dead. An aneurysm or massive stroke and sudden death. He was the picture of health when I did some work for him a year ago. I will take PD any day.

I consider myself lucky that all I have is PD. I can live a fairly normal life with the shaking palsy. I could have one of the other forms of parkinsonism.

From the European Pakinson's Disease Association, here is the low-down on parkinsonism. You will understand why I feel lucky:

What is Parkinsonism?

Parkinsonism is the generic name given to a group of conditions that feature the main characteristics of Parkinson’s: tremor, rigidity of muscles, mobility problems and bradykinesia (slowness of movement).

About 85% of people with parkinsonism have the most common form, Parkinson’s disease (also known as PD or idiopathic Parkinson’s disease).

The other 15% of people with parkinsonism have different, much rarer conditions.

Corticobasal degeneration (CD)

CD is a rare type of Parkinsonism that can affect mental processes, personality and behaviour, as well as causing Parkinsonism symptoms. It tends to be asymmetrical and causes an ‘alien limb’ phenomenon, where the person’s arms or legs can seem to move without control, as if with a mind of its own. CD has some similarities with Progressive Supranuclear Palsy (PSP).

Dementia with Lewy bodies (DLB)

DLB shares features with Alzheimer’s disease and Parkinson’s. Because of its similarities with the symptoms of dementia (such as memory loss and variations in alertness and attention) it is often confused with Alzheimer’s. But about 75% of people with DLB also develop Parkinsonism symptoms, in particular being susceptible to falls.

Drug-induced Parkinsonism

Some people develop Parkinsonism after they have taken certain medications and people with Parkinson’s may also find their symptoms worsen when they are treated with these medications. This is known as drug-induced Parkinsonism.

The medications involved are generally those that block the action of dopamine, the neurotransmitter that is depleted in the brains of people with Parkinson's. These include antipsychotic/neuroleptic medication used to treat schizophrenia and other psychiatric problems, prochlorperazine (Stemetil) used to treat dizziness and nausea, and metoclopromide (Maxolon) used to treat nausea and indigestion.

Essential tremor (ET)

ET is a common neurological condition, often misdiagnosed as Parkinson’s. Its cause is unknown, but can run in families, resulting in fast, rhythmic trembling in the hands, head, legs, trunk or voice. Whilst the tremors experienced by people with Parkinson’s are apparent during rest periods, ET is an ‘action’ tremor - it is more pronounced when the affected part of the body is being used, for example in the hands when writing.

Multiple system atrophy (MSA)

MSA is a progressive neurological disorder that causes problems with movement, balance and the automatic functions of the body, such as bladder control, sweating and blood pressure.

Progressive supranuclear palsy (PSP)

PSP is also a progressive neurological disorder. It predominantly affects balance, but also impairs mobility, vision, speech and the ability to swallow. A particular feature that many people with PSP experience is difficulty in moving the eyes when trying to look up or down.

Vascular (arteriosclerotic) Parkinsonism

A form of ‘atypical Parkinsonism’ in which Parkinson-type symptoms are produced by one or more small strokes, rather than by a gradual loss of nerve cells.

Several small strokes in the Corpus Striatum in the brain (the part that receives information about position and movement) can cause Parkinsonism symptoms, such as Rigidity and slowness, walking with short, shuffling steps and speech problems. This is known as vascular (arteriosclerotic) Parkinsonism and can be difficult to distinguish from Parkinson’s. However, Stroke symptoms tend to appear suddenly and do not progress, whereas those of Parkinson’s are gradual in appearance and worsen over time.

Every day a blessing

There are worse things than parkinson's so stop worrying. You can do nothing about the future except plan to live life to its fullest.

Sunday 7 December 2014

Ups, Downs and Horizontals

A friend took me to my 2nd hockey game of the year on 5th and I was confronted with a problem that most PWP have experienced. The angle of the upper level seating area in the arena approaches 60 degrees, a veritable Mount Everest when you have balance issues. I had to ascend and descend and worse, I had to navigate a narrow path to reach my seat and there was nothing between me and the row below to stop me falling into it if I lost my equilibrium. The stairs are narrow but at least they have a handrail so the climb was not too bad. The path to the seats was a little unsettling, but I made it to my seat, without incident, where I remained ensconced for the duration of the game, without any liquid sustenance for fear that mother nature might call and I only wanted to descend once.

The game ended with our team victorious and we moved toward the stairs. You can relax, I didn't fall, but I noticed that the people around me, especially the young ones, virtually bounced down the stairs while I gripped the handrail with two hands and moved at glacial speed. I made it. I had held up the people behind me, probably not as much as I thought I did, for nobody complained. That lack of confidence and the feeling that everyone is watching, is rampant within PWP, especially if outwardly they are symptom free. You can feel the people around you getting annoyed with you slowing things down. A touch of paranoia - that's all it is, nothing more.

Hockey, when played by skilled players, like the olympians, is poetry in motion. Our team is improving but, as with most of the teams, there are maybe 6 - 8 very skilled players who dominate the game and occasionally, the frustration of the lesser skilled leads to fights, turning the game into a poor version of the roller derby. Most fans cheer at these fights. I hate them and I think they degrade the game.

This time, although we won easily, there were a couple of moments when mayhem ruled the ice. The result of the win and the fighting, stressed me somewhat and got my hand going. I could also feel "sparks" in my left arm. I rode home fearing the worst - I was entering stage 2 a year before I had hoped for. This feeling, I think, became a reality when I lay in bed experiencing trembling and twitching in both legs. By morning the symptoms had disappeared and I relaxed, for they have not returned. I know it is inevitable but, except for moments like this, I remain positive.

Hands up if you have a question. Nobody? Allow me. I know what you want to ask. How, you wonder, do you get stressed over a hockey game, especially when your team is victorious???

The answer to your question is easy. Emotionally, I have turned into a child, probably of the female persuasion. I get choked up at the most ridiculous of things, a sad song, the winner of a TV talent show, a movie where everything goes wrong, or even when everything goes right. A victory in a hockey game is just one of a long list of emotional triggers. I have turned into a wimp! If you are newly diagnosed and get teary eyed at the sight of linoleum, stay calm, it is just another of PD's little presents.

Occasionally, I can still get a laugh. For example, reading Wayne Gretzky's take on the game of hockey. According the The Great One, "Ninety percent of hockey is mental and the other half is physical."

What's that? Ich verstehe nicht? I think he must have had a brain cramp. We PWP know all about brain cramps, don't we!

Thursday 4 December 2014

So, whaddya think?

While surfing the forums, I came upon a fellow who had not been diagnosed but he wondered if he had PD. He felt he had it. He listed his symptoms:

  • External tremors in my arms and legs
  • Shaking and jolting while asleep
  • Foot Dragging
  • Swallowng issues
  • Masking- it used to upset me why people thought I was always so angry.
  • 'Vibrating' feeling over the whole body
  • Falling if I stand quickly
  • Not having complete control of my hand when taking coffee out of a jar etc
  • Bursting into tears at the smallest thing
  • Lack of arm swing when walking

Sounds like classical PD to me, but in a later post he said his doctor thought otherwise and sent him for tests. I will let you know the outcome, if he posts it.

I've got nothing against doctors, they are good people, especially if you are not sick. If this doctor hadn't asked for tests. I would question his competence. Good doctors listen to their patients. For PD, that is the best method of diagnosis because there is no clinical test for the condition. The accepted test is diagnosis from the patient's observations and complaints. I will bet the doctor is fairly certain his patient has PD and the tests are to rule out any other condition, in which case, I might be worried, because there are worse things than PD that have the same or similar symptoms. I kind of hope his doctor was right and wrong at the same time.

In any event, if he has shaking palsy and once he gets over the shock, I hope that he won't dwell negatively on the future and lose the present. Positive thoughts are required to slow this disease.

That, and drugs. Prescription, of course.