counter

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.

Saturday 29 November 2014

Possible Disease-Modifying Therapy for Parkinson’s One Step Closer to Patients

Posted by Rachel Dolhun, MD, November 26, 2014 on Michael J. Fox Foundation site.

CBS News in New York shined a spotlight on Parkinson’s research yesterday evening — for good reason. A promising disease-modifying therapy is getting closer to reaching people with Parkinson’s.

Isradipine — a medication currently approved to treat high blood pressure — is being studied to determine if it can influence the course of Parkinson’s disease (PD). Researchers believe the drug works to prevent the death of dopamine-producing cells and therefore might slow the progression of disease. Previous studies have confirmed drug safety and tolerability so testing will now move into a Phase III clinical trial — the largest, and last, stage of drug development testing. The STEADY-PD trial is recruiting over 300 participants with early PD, each of whom will take either isradipine or placebo and be monitored for three years.

Todd Sherer, CEO of The Michael J. Fox Foundation, told CBS News that isradipine is one of several active research areas in Parkinson’s. The Foundation has invested millions in helping to advance isradipine from the earliest testing in preclinical models to the current Phase III trial testing. Positive results from this study would move a disease-modifying therapy for Parkinson’s one step nearer to pharmacy shelves.

This is good news; however, why must we wait 3 years if it is a drug that is currently approved for the treatment of high blood pressure? Let's give it a shot. Like chicken soup for a cold. Can't help. Can't hurt. I guess if something is worth waiting for, you can bet you will be waiting for it.

As grateful as I am for the efforts of Michael J and the scientists working on PD treatments, I say, with respect, I am ready now.

I was reading "Waiting for Godot"(you can find the entire play on line). At first, I thought it kind of stupid. It's not. If I am right, Godot is all those things you are waiting for in life. Well, my Godot is a cure or some drug/treatment that slows down PD's seemingly inexorable attack. That's first on my list of Godots. Second is a burning desire to win the Mega Lottery and, you know, one of these days I might just buy a ticket. I am told that the odds of winning the Mega are the same as being placed on a football field, blindfolded, and given a pin. An ant is released somewhere on the field and the odds of you sticking a pin in the ant rival the odds of winning the Mega lottery.

Hmmm. I hope the odds of discovering a cure, or new treatment, are not as long as that.

Monday 24 November 2014

The Cost and Prevalence of PD in Canada

The Cost of PD in Canada

According to the data gathered by Health Canada, the total cost of Parkinson’s disease to the Canadian economy is $558.1 million per year. That figure includes direct costs to the economy such as hospital care, drugs, physician care, and research. It also includes indirect costs such as lost production due to disability and premature death.

The report also highlights the immediate costs to individuals living with Parkinson’s. Estimates place the cost of medicine at $1000 per month for the typical Canadian living with the disease. Surgery, a helpful option for selected individuals with Parkinson’s, costs an estimated $15,000 - $20,000 per procedure. However, because of the high costs, and the limited accessibility of experienced neurosurgeons, many of the people who qualify for surgery never undergo the procedure.

I say thank goodness for socialized medicine.

Health Canada’s original EBIC report shows that seniors (people over the age of 65) account for almost 25 per cent of the total Nervous System / Sense Organ disease costs. The same report states that seniors account for 90 per cent of the total Parkinson’s costs. This is a particularly troubling statistic considering many seniors live on a fixed income and the number of people over 65 is expected to rise dramatically over the next 30 years. .

<

Prevalence of Parkinson’s disease

An estimated 55,000 Canadians aged 18 or older living in private households reported that they had been diagnosed with Parkinson’s disease. This represented 0.2% (95% CI: 0.2%, 0.3%) of the household population, unchanged from the 2000/2001 CCHS prevalence estimate. As well, 12,500 residents of long-term residential care facilities—4.9% (95% CI: 4.8%, 5.0%)—reported a Parkinson’s diagnosis. Among the household population, 79% with Parkinson’s were 65 or older; in institutions, almost everyone (97%) with the condition was 65 or older.

Overall, men were more likely than women to have Parkinson’s disease: 0.3% versus 0.2% (p < 0.05) for those in private households, and 6.6% versus 4.0% (p < 0.05) for residents of institutions.

In general, the prevalence of Parkinson’s disease increased with age, although in the institutionalized population, prevalence decreased in the oldest age group. This may reflect greater disease severity and higher mortality among older people in institutions compared with those in private households. As well, being male and the presence of symptoms such as severe motor impairment, psychosis and dementia have been associated with earlier death among people with Parkinson’s.

Sources- Cost - Parkinson Society of Canada
Prevealence - Statistics Canada>

Do Yourself a Favour


Check out these Exercises brought to you by Parkinson Society of Canada.

Saturday 22 November 2014

Who would'a thought!!!!

It took me about 3 minutes to get out of bed in the middle of the night. Thank goodness there is nothing wrong with my bladder.

Granted, the bed is high, but that's not the problem. The problem is the sheets grabbing on to me and my weak arms failing to defend me. It's my own fault. I dared sleep facing in and had to roll over to face out. Doesn't sound to difficult, right? Well, I am here to tell you I give it a "6" on the PD degree of difficulty scale. I won't bore you with the details so I will sum up with the statement "War with the sheets is hell".

How about an Emo Philips joke to ease the tension?

"I discovered my wife in bed with another man, and I was crushed. So I said, 'Get off me, you two!'"

Friday 21 November 2014

I Need a Pocketful of Posies!

On one forum, a newly diagnosed victim posed the question,"Does anyone know what natural remedies are available to treat PD?" or words to that effect. The answer is, of course, there are none. I know because during D-day (diagnosis day) plus one year, I tried them all and came to the generalized conclusion that the more natural remedies that are being pushed, the more likely the condition is incurable. In mathematical terms, there is a direct relationship between natural remedies and incurability. Sorry folks, in my opinion natural remedies for PD is the equivalent of snake oil for cancer. Use them if you must. They may do some good by distracting you from your predicament.

The future sounds bleak doesn't it? Incurable is an ugly word. Well greet the future with gusto because, I have come to believe there is an inverse relationship between optimism and the speed at which PD consumes us. As optimism increases, the speed of deterioration decreases. Think healthy and enter the future boldly. It's like chicken soup for a cold. Can't help. Can't hurt.

Beware of the dichotomy facing us. The belief in the efficacy of natural remedies and the notion that natural remedies are a scam, cannot live in the same mind at the same time. They cancel each other out. As a professor of mine used to say, "You can't suck and blow at the same time."

For PWP, the daily contest between optimistic thinking and pessimism can make our lives quite chaotic.

Who cares!

Chaos is great!

Monday 17 November 2014

Am I struggling to deny the obvious?

Sometimes I feel like I am on ski's in a snowless world. I can be quite naive about my problems vis-a-vis realty.

On the various PD forums I visit, I often find that the newly diagnosed are scared and can only see a bleak future for themselves. On the other hand, when I was diagnosed, my response when the neuro gave me the news was "Oh....hmm...what was that? My wife will want tI o know the details."

He looked over his glasses and repeated, "It is early stage parkinson's"

I think he must have thought me odd as I had no real reaction. I knew parkinson's was not good but somehow thought it wasn't all that bad.

I continue to remain upbeat in the face of a possibly devastating future. I just don't think it will be terrible. Perhaps I lack commonsense. Or, maybe I am in denial, but I don't think so. Only time will tell.

I know of one lady on a forum who has had the condition for 17 years and still leads a normal life. Seventeen years from now I will probably not have to worry about PD. Oddly, this lady and I are the same age (68) and our mothers died in the same year at the same age and we both kept our condition a secret from them so as not to ruin their last days.

But, I digress. I know PD is a designer disease and each victim is different. Some people get the condition at a very young age (eg. Michael J. Fox when he was 29 or 30). Others, are diagnosed at an appropriate age (me - 64). I want to tell the new PWP "It's not so bad" but that would only be my experience. Like I said - a designer disease. I got lucky. I think I would have had a different reaction to the neuro's diagnosis if I had early onset. I won't try to paint a rosy future because who knows how hard the disease will hit the newbies. I feel for those who were not so "lucky" as I was, but even for people who are newly diagnosed at whatever age, think positively. I believe that within my somewhat limited lifetime a drug or procedure will be discovered that severely slows the progression of PD or cures it altogether.

Nothing is incurable. It is just that we have yet to find the cure.

Wednesday 12 November 2014

An encounter with the family Cervidae.

One tried to attack me in the woods while I was jogging. I got away without a scratch. Another time, two of them jumped out of the bushes, side by side, at the level of my head. I tell you, another step, and I would have been road kill. Both incidents rattled me, but didn't stop me running in the forest. Parkinson's took care of that.

I am talking about deer.

I live in a city of close to 650,000 people, in an older part of town as opposed to the suburbs. On my morning walk, I travel about 5 kilometers using my trekking poles. I can really get moving using the poles in a nordic fashion. This morning, 5AM, I was "speeding" along whenI became aware of a feeling of falling forward. I needed a rest so I slowed to a standstill. Within a nanosecond of my stop, a large stag dashed in front of me, crossed a main artery (4 lanes), somehow missing the cars going in each direction, stopped, looked back with disdain, snapped his head and disappeared into the darkness.

If I hadn't stopped, I would have.....well, you know. Apparently, somebody is watching over me because that is now 3 times I have had a rendezvous with death at the hands of a 4 pronged hoodlum.

I think the deer are in cahoots with PD. They seem certain one of them will get me at some point. I think or rather, know, I am up to the battle, ergo, I don't worry about the future and I am sure my "insuciance is a nuiciance"* to them as they plan my demise.

Much is happening in the field of Parkinson's research so that condition, while somewhat irksome, is not overwhelming me. A cure is on its way. Sooner, not later. If not a cure,then good new drugs, now being tested, will slow the pace of deterioration in my brain.

Now if I could only do something about those deer.

  • I would live all my life in nonchalance and insouciance, Were it not for making a living, which is rather a nouciance.

Ogden Nash

Friday 7 November 2014

PARKINSON'S STEM CELL BREAKTHROUGH

stem cells can be used to heal the damage in the brain caused by Parkinson's disease, according to scientists in Sweden.

They said their study on rats heralded a "huge breakthrough" towards developing effective treatments.

There is no cure for the disease, but medication and brain stimulation can alleviate symptoms.

Parkinson's UK said there were many questions still to be answered before human trials could proceed.

The disease is caused by the loss of nerve cells in the brain that produce the chemical dopamine ,which helps to control mood and movement.

To simulate Parkinson's, Lund University researchers killed dopamine-producing neurons on one side of the rats' brains.

They then converted human embryonic stem cells into neurons that produced dopamine.

These were injected into the rats' brains, and the researchers found evidence that the damage was reversed.

There have been no human clinical trials of stem-cell-derived neurons, but the researchers said they could be ready for testing by 2017.

Malin Parmar, associate professor of developmental and regenerative neurobiology, said: "It's a huge breakthrough in the field [and] a stepping stone towards clinical trials."

A similar method has been tried in a limited number of patients.

It involved taking brain tissue from multiple aborted foetuses to heal the brain.

Clinical trials were abandoned after mixed results, but about a third of the patients had foetal brain cells that functioned for 25 years.

Using embryonic stem cells may be preferable, as it is easier to get hold of the large numbers of cells needed for transplant by growing them in the laboratory.

It also opens up the possibility of using less ethically charged sources of stem cells, such as those made from adult tissue.

The charity Parkinson's UK said the research "could be a stride towards clinical trials in people with Parkinson's".

Its director of research and development, Arthur Roach, said: "This important research is a key step along the way in helping us to understand how stem cells might shape future Parkinson's treatments

. "There are important potential advantages of these cells over the foetal-derived cells used in past cell transplantation work.

"This study could be a stride towards clinical trials in people with Parkinson's but there are still many questions that need to be answered before this development can be tested in people with the condition."
Colin Powell

Perpetual optimism is a force multiplier. Colin Powell

Saturday 1 November 2014

Conundrum

Just to make sure I was using the word "conundrum" correctly, I googled it and found two different definitions:

  • first definition:a confusing and difficult problem or question.
  • second definition: A riddle whose answer is or involves a pun or unexpected twist

I confess I didn't know the second definition but the first warrants further inquiry.

The only conundrum I intended to write about arose out of a thread in a parkinson's forum - ie - does the flu shot exacerbate PD symptoms. I doubt there is a definitive answer. PD is a designer disease. It differs from individual to individual. In my case, I would have to say yes, the flu shot had an effect on my symptoms. For two days following the shot, I felt more parky than I had in a long time. My balance was affected (not severely, but noticeably), as was my gait (parkinson's gait). Coincidence? Maybe. But, I think not. I have not googled to find out if there is a connection because

  1. Having had a very disturbing time with the flu a couple of years ago, any parky feeling is not even in the same class as the flu "bug". It took me 8 days to recover from the flu, and
  2. the parky feeling has left me now, so why bother.

You can find the thread at parkinsons.org.uk.

Now to definition #2. This is one I wrote 30 years ago, never realizing it was a conundrum;

A man has a dog that's a stray
It moves in a peculiar way
The dog has no legs
Do you think the dog begs
To go for a drag every day?

That's it for today.

Friday 31 October 2014

Analyze This

If you have been reading earlier entries ,you will know PWP sometimes have virtual reality dreams. I have had some beauties but none so disturbing as the latest.

I don't remember how it starts but, it involves a church and a young, evil, girl. Someone offered me a church (the one just a block from my house) in which to live. I must have taken up his offer because in the next scene, I was lying on my bed when this obnoxious little girl came in and started jabbering away. I told her I knew who she was and she should stop talking. She kept on blabbering about something I couldn't understand.

"Get out of my room. I know who you are," I said calmly.

She remained where she was, still talking in a language I had never heard before.

"GET OUT OF MY ROOM," I shouted.

She turned on her heel and left.

I looked at another person who had suddenly appeared. It was another adult, female or male I know not. The person loomed over my bed and said, "You told her to get out!!! Don't you realize the baby is in the other room?"

I jumped out of bed into a dark hallway. The girl was nowhere to be seen. I crept into the darkness and came to a dimly lit room. Stealthily, I looked around the corner. The little girl was standing at the head of a crib and was reaching into it to pick up the baby. She heard me and raised her head with the evilest of grins and continued to reach into the crib. I started to breathe loudly, blowing out panicked gasps of air, over and over. I had to do something but I didn't know what. My breathing got louder and louder, more and more frenzied, and then, "Doug, Doug, wake up. Are you OK?" my wife said shaking my shoulder.

It had been only a nightmare, but so realistic I emerged from that dark, haunted world with a shadow following me. I had scared myself and my wife. Even now, 12 hours later, to think of that kid at the head of the crib, makes my neck hairs quiver.

Explain that, if you can

Thursday 30 October 2014

Unbeing dead is not being alive - e.e. cummings

Maybe I have already told you about meeting a friend I had not seen in 40 years? If I did mention it in an earlier entry, too bad, you are about to hear it again. After 40 years apart, we went for lunch during which I informed him I had PD and he replied, "So what. We are all going to get something some time." He was full of life and planning on bringing a cowboy band to the city. I don't remember their name, but they sang "Tumblin' Tumbleweeds". Six months later he called me to tell me he didn't have much longer to live. He died a month later from cancer.

Life can be a bitch sometimes.

Those of us with PD consider ourselves unlucky and lucky at the same time. Unlucky to have been blessed with PD but also lucky to be blessed with PD. If you have to have a degenerative brain disorder, PD is the best of the lot because its symptoms can be controlled. The end game might not be pretty but getting there can be an adventure.

There are always those tribal drums lurking somewhere in the dark recesses of my mind as I make my way toward the end of my journey. Will my death be dignified or will I......I banish the thought. Today will be a good day to be alive even if the day, as it appears it will be, is devoid of the sun and only 2 degrees centigrade.

What is life without adversity? I can't imagine it. A little stress makes me wake up and smell the coffee, which I would if I hadn't lost my sense of smell. I would rather not have PD, but I do and there is nothing I can do about it but ignore it as long as I can. I choose to be alive in the meantime

My phone is ringing. I have to answer it. Until I write again, I leave you with a line from a movie (I forget which one) in which an elderly lady was described as "she is not afraid of dying, she is afraid of not being alive."

To PWP, I say, don't be afraid of the future, be afraid of unbeing dead in the present.

Wednesday 29 October 2014

No thanks Bacchus. I am already there...

Bacchus was the Roman god of wine (Dionysus if you prefer Greek).

In a painting, Bacchus was depicted as having a staggering body almost teetering off the edge of a cliff. In other words folks, he was drunk as a skunk - causing him to be dizzy, clumsy, and out of control.

Guess what, today I achieved that state without having taken a drop of alcohol. The very definition of a person with parkinson's can include dizziness and a staggering gait.

I now know the uncertainty brought upon us by the duet of Bacchus and Dionysus, having been there and done that, without any stimulant.

My OCD kicked in about 4:30 AM and I achieved quite a good speed, using my trekking poles, when I went for my early morning walk. I "nordic walked" for only a little over a mile and during the last 5 minutes, I began to feel like I was going to fall over, forward. "Festination," I muttered out loud. I sat down on a stone wall to await a more normal feeling. I lingered only a moment. Home was but a few hundred yards away. I got up and began my trek. My poles were getting out of place and I was staggering but I managed to use my poles to prevent festination and I was successful in remaining upright, that is until I stood on my stoop and teetered head first into the door (my metaphorical Bacchus cliff). I didn't hit the ground but remained stiffly at an angle, with my head against the door for stability. With much cursing, I managed to get my key in the lock and open the door. I entered the house to find I was still in my parkinson's gait mode and headed awkwardly toward the sofa, where I sat for 10 minutes until the feeling passed. It happened yesterday morning but has not returned; perhaps because I spent the today in bed with a cold. I hope it was one of those fleeting symptoms that won't make another appearance for some time. No more vertigo for me please.

Festination is an alteration in gait pattern characterised by a quickening and shortening of normal strides. This phenomenon is most commonly observed in patients with Parkinson's, and is sometimes known as Parkinsonian gait. Festination can be disruptive for a patient and may interfere with the ability to work, exercise, and engage in daily activities. It is also a noticeable sign of Parkinson's which can attract unwanted attention."

This change in gait is the result of hypertonicity in the muscles, where there is too much tension in the muscles and the patient has trouble controlling them as a result. The patient will have difficulty initiating muscle movements, such as those needed to start walking, and it is also hard to slow down and stop. In a patient with a festinating gait pattern the gait can take a hopping or shuffling form and the patient has no control over it.

Tuesday 28 October 2014

JUST WHEN I THOUGHT I WAS OUT.........

IT PULLED ME BACK IN.

I'm talking about the cramp I have christened, the"Beast".

It came back to me a few days ago and has been hitting home runs every 8 hours, or so, in lessening intensity as time passes by; but when it hit on Thursday I realized again that I might get better but I will never get well.

If you have never had one of these cramps, it starts, ever so subtlety, in your toes and while you try to wait out the toe pain which is starting to affect the foot, the Beast strikes, swiftly and harshly. Your cramped foot seems to twist up and inward and the side of your leg has the consistency of an iron bar. The only way to stop it is to stand up, with both feet flat on the ground, and wait. It takes anywhere from 5 -15 minutes for your body to relax.

The beast has left me alone since last night. I think it has gone now. I am fully at ease and just waiting for either the return of the Beast's muscle crunching, but somewhat exquisite, pain or, a cure.

I will take a cure please and thank you.

Thursday 23 October 2014

I was born bald. Not again!!!

I have noticed recently that I am losing hair at an alarming speed. I have male pattern baldness. If you look at the top of my head, you will see that the pattern is stripes. Hair, skin, hair, skin and so on. Uneven as they are, it is still a pattern of stripes.

It has sped up since I started L-Dopa. Hmmm. Coincidence? After all, I am 68 and hair loss can be natural. But, I tell myself, not at Formula One speed! It should advance slowly and steadily. Like a glacier. My loss is more like hair loss on speed.

I google "hair loss Parkinson's" and I find this:

. Levadopa (l-Dopa)
Levodopa, also called L-dopa, which is converted to dopamine in the brain, remains the gold standard for treating Parkinson's disease. The standard preparations (Sinemet, Atamet) combine levodopa with carbidopa, which improves the action of levodopa and reduces some of its side effects, particularly nausea. Dosages vary, although the preparation is usually taken in three or four divided doses per day.

In general L-dopa has the following effects on Parkinson's disease:

  • It is most effective against rigidity and slowness.
  • It produces less benefit for tremor, balance, and gait.

In many patients, levodopa significantly improves the quality of life for many years.

Side Effects

The toxic effects of levodopa with or without carbidopa are considerable.

Physical Side Effects. The physical side effects include:

  • Dyskinesia. Dyskinesia (the inability to control muscles) is a very distressing side effect of levodopa. Dyskinesia can take many forms, most often uncontrolled flailing of the arms and legs or chorea, rapid and repetitive motions that can affect the limbs, face, tongue, mouth, and neck. Dyskinesia is not painful. No specific drug can strongly be recommended to treat dyskinesia. Amantadine (Symmetrel) may help reduce stiffness and improve dyskinesia. There is also weak evidence that deep brain stimulation of the subthalamus area may be helpful.
  • Low blood pressure. Low blood pressure is a common problem during the first few weeks, particularly if the initial dose is too high.
  • Arrhythmia. In some cases the drug may cause abnormal heart rhythms.
  • Gastrointestinal effects. Stomach and intestinal side effects are common even with carbidopa. Taking the drug with food can alleviate the nausea. However, proteins interfere with intestinal absorption of levodopa, and some doctors recommend not eating any protein until nighttime in order to avoid this interference. The drug can also cause gastrointestinal bleeding.
  • Effects in the lung. Levodopa can cause disturbances in breathing function, although it may benefit patients who have upper airway obstruction.
  • Hair loss.

Wait. What was that last one. Hair loss!!!! Of all the terrible side effects, I get the most benign on the list. I should consider myself lucky but my vanity is getting in the way. I know, I know, suck it up and get on with your life.

OKAY, I heard you.

Sunday 19 October 2014

Diagnosis & Prognosis - don't let the first become the second.

DIAGNOSIS CAN BE QUITE A SHOCK!

As mentioned earlier (much earlier), my first neurologist diagnosed me using a simple test. I had entered his office symptom-free and was reading a paperback, without tremor, which is not easy to do if you are a PWP and I was getting restless. My appointment was for 9:30 and he was already behind. I found out the reason for his backlog. The man came to work an hour late! When he finally called me in, I was showing no signs of having PD. He had me sit up on an examination table, asked me to place my hands, palms up, on my knees and count back from 100 by 7's. By the time I was finished, my right hand had a life of its own. "Early stage parkinson's," he said matter-of-factly.

Now this doctor has been around for awhile - quite awhile - and his experience led to his diagnosis. I wasn't upset. I had lived a charmed life up to that day, so I needed to find out more about it and determine if he was correct.

All the way homeI was not particularly concerned. I had heard of parkinson's but knew nothing about it. My reaction to my diagnosis was "So, what now?"

In the seclusion of my home office, I searched the internet. It dawned on me that his simple test had condemned me to a life with an incurable, degenerative brain disease. I had to make sure he was right. From my research, I found the 4 main symptoms of PD and I had the first one in this list.

  1. Shaking or tremor
  2. Slowness of movement, stage name bradykinesia
  3. Stiffness or rigidity of the arms, legs or trunk
  4. Trouble with balance and possible falls, referred to as postural instability

Generally, there must be 2 of these symptoms present over time in order to make a definitive diagnosis, but I guess if you are a graying neurologist, one symptom will be satisfactory for a diagnosis and looking back, although I never mentioned it to the doctor, I was slowing down. But I needed more information.

I had read on the forum on the UK Parkinson's site of PWP having had a DaTSCAN for diagnosis. I have not heard of such a thing here in Canada. It may or may not exist.

A DaTSCAN is an scanning machine that uses small amounts of a radioactive drug to help determine how much dopamine is available in a person's brain. Apparently it is used in Europe, the USA and probably Canada, to confirm a diagnosis for Parkinson's. The machine itself cannot make that diagnosis. There is no definitive test for parkinson's. I understand it can be used to differentiate between parkinson's and essential tremor, but it cannot diagnose PD alone.

I had to find another neurologist. I was impressed by the first one's experience but I hate sitting in waiting rooms and this guy showed up one hour late for his first appointment? I subsequently went to another neurologist, who confirmed the diagnosis and referred me to a specialist at a movement disorder clinic where the diagnosis of PD was carved into stone. I definitely had PD! What could I do to help myself get through this.

If you are unfortunate enough to be in the 1-2% of the population that is diagnosed with PD, I think that you will find having a good attitude, exercising, eating well and maintaining a sense of humor will certainly lessen the impact of the disease. And, take the drugs! Through drug therapy, I lead a fairly normal life. But what of the future? What lies ahead? I read somewhere that on the average, depending on age, you can expect 5 normal years, 5 - 10 decent years and thereafter it will depend on if you are one of the unlucky 20% who fall victim to dementia.

Occasionally you might get angry at the gods for giving you PD, but worse, giving you the inability to predict its course and the ability to know all the possible outcomes. Stop it. Think positively. I cling to the very real hope that science will find a cure, or at least a way to stop its progression within the next 10 years. Dr. Oz predicted a cure in the near future. Meanwhile I will lead a normal life. I just don't let my diagnosis get me down. Life goes on, even after a diagnosis of PD.

You've probably read in People that I'm a nice guy - but when the doctor first told me I had Parkinson's, I wanted to kill him. (Michael J. Fox)

Monday 13 October 2014

Every day I get out of bed with a headache; then my wife told me, "feet first, idiot!"

The Setting: My wife and I sleep in a huge king sized bed. I think the makers of the bed were expecting a flood because when I fully sit up on it, with my legs hanging down, my feet do not touch the floor. It is one high bed!

The characters: Neurologist, bed, blankets, me.

The Foreshadow: Some time ago, my neuro asked me if I had trouble moving in bed. I thought that was an odd question! I replied "No, not that I have noticed."

He nodded his head, looked at the computer screen showing... well, just about everything medical about me. He went to one file on the screen and typed something in. I don't know what the input was but he turned toward me and said "None?"

I wasn't sure if it was a question or a statement of surprise but I answered, "No, none."

Rising Action: I take amantandine and miripex (both max doses) 4X a day and L-dopa three times with the other two but I do not take it in the evening.

Yesterday,with some difficulty, I reached the summit of the bed and joined my wife watching our latest film fix, the Spanish drama "Grand Hotel". The program ends and it is lights out, I turned into my regular sleeping position, on my side, facing out of the bed on the right side. I awoke, on my stomach, facing inward toward my sleeping wife. I must have had a restless night.

It is 4:30 AM, my usual time to arise for the day. I try to turn over over to get back to facing outward. I can't do it. The covers seem to have a grip on me, as if they are deliberately obstructing my escape from the bed. I struggle to sit up but there is no strength in my arms. I tug at the covers and manage to get them out from under my body. I try to roll over to the edge of the bed. No dice. Rolling is out.

Can't sit up, can't roll over. What to do? What to do?

I eventually solve my dilemma by sliding my body, on my back, to the edge of the bed, one inch at a time. I reach my destination and them am confronted with a new problem. Now that I am lying on the edge, what do I do next. My left arm is too weak to lift me to a sitting position. Do I just roll off the bed? That's a long way down! I might kill myself.

Climax: Eureka! I know what I will do. I will ease my lower half, "waist down" off the bed and as that is happening my body will naturally turn over so that my trunk will facing inward and downward with my chest on the bed and I will simply back off of he bad. This I did but somehow, I don't remember how, it all happened so fast, I ended up on the floor,on my haunches with my back against my bed. I must have fallen. No harm done but noisy enough to waken my spouse.

Falling Action: I struggle to stand and my wife says, "What are you doing? Are you OK?"

"I am having a little difficulty getting out of bed. I'm OK. Go back to sleep". I get on my knees and manage to stand. I am a bit dizzy and a little embarrassed. I walk slowly, unsteadily. I close the door behind me as I leave our room and head straight for the bathroom. I need relief. I need my pills. I stuff them into my mouth and swallow them without water. One, the big one gets momentarily lodged but I manage o gulp it down.

Resolution: Now I know what the neuro was asking. It was like I was suffocating, caught in a tangle of seaweed. Just another of PD's little gifts. I don't want any more presents, thank you. My schedule is already chock-a-block.

My life needs someone to edit it!

Saturday 11 October 2014

This poor chap thinks he might be a hypochondriac

On a PD forum, one participant, wondering about his condition, described his symptoms as:

  • 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

And he has not been formally diagnosed. These are the classic symptoms of PD. I have seen and suffered them. If you have them, you got it. But don't panic, everything will be OK - drugs now. Cure coming sooner than later.

To those newly diagnosed, it is not the end of the world to be diagnosed with PD. If you are upset with your diagnosis that is how it should be. Let the bad luck consume you for awhile, then get mad at it, then fight it and and remember that if there is no peril in the fight, there can be no glory in victory. And we will win. PD is already on its knees. In the meantime, find yourself a good forum like Parkinson's UK. There are experienced PWP,there who will help you come to terms.

Friday 10 October 2014

Life after diagnosis

Let me summarize the past 4 years. The following is a scary list of symptoms and an account of my acquaintance with them.

  1. Bradykinesia is the slowing down and loss ofspontaneous and voluntary movement. I continue to suffer from that. My walking is quite slow; however, when going for a walk at 4:30 am, using my trekking poles, I can more than double my speed over longer distances.

  2. Rigidity / unusual stiffness in a limb or other body part. Sometimes but quite manageable
  3. Resting Tremor/ an uncontrollable movement that affects a limb when it is at rest and usually stops for the duration of a voluntary movement. Early on, before amantadine, this was the bane of my existence - a hand with a mind of its own. This starts jumping at the slightest stressed and for some reason, I am easily stressed. I am currently watching the Spanish drama "Grand Hotel", a fabulous story filled with minor stress that keeps one finger on my hand jumping around. For the most part the drugs keep everything relatively normal

  4. Postural Instability / problems with standing or walking, or impaired balance and coordination, which can lead to falls. I can't say this is a bother in my life. I sometimes get a "head rush" upon standing and I have fallen three times probably due to dragging a foot while running.

  5. Dystonia / involuntary movement with muscle contraction, such as a cramp and I am talking cramps to the nth degree. Early on my leg would go rigid and my foot would start twisting inward and upward. The drugs took care of those very quickly so that now I still suffer from cramps periodically, but they are just bothersome and not the monster type I suffered early on

  6. Reduced facial expression / “mask-like” face due to bradykinesia. My wife commented on it during our vacation in South Beach one year, but it disappeared shortly thereafter and has not returned.

  7. Speech and swallowing problems Speech - big time? People couldn't hear me and when I did speak, I would have trouble word finding. It is still a problem only much reduced with the introduction of L-dopa. As for swallowing, there was a period of 3 weeks, several months prior to official diagnosis where I at soup and drank milkshakes because I just couldn't swallow solids. This condition returns every now and then, stays a day or two and then goes away

  8. Dyskinesia / involuntary, twisting/turning,jerky movements that can result from long-term use of medications that treat Parkinson’s disease. Not part of my life....................yet.

  9. Impulse Control / inability to resist an impulse that is harmful to self or others that can result from use of medications that treat Parkinson’s disease. Fortunately I have avoided this little gem.

    Non-movement/ Non-motor-related Symptoms

  • Cognitive Impairment decline in ability to multi-task (no problem) and/or concentrate;(not me) potential decline in intellectual functioning (so far so good and onset of psychosis (don't think so, but you never know)
  • Mood Changes / can include depression,apathy or anxiety- no more than usual which is very infrequently
  • Sleep disorders / for example, REM sleep behavior disorder, where individuals act out their dreams. I can't sleep without zopoclone and My wife has mentioned me having bad dreams and she says I have monster twitches while sleeping
  • Hyposmia which means the loss of sense of smell. I lost my sense of smell a good 5 - 10 years before official diagnosis. Comes in handy in some instances.
  • Fatigue overwhelming at times but I keep on slugging through.
  • Constipation You betcha but in my case, it is a welcome relief as I used to suffer from Montezuma's Revenge at the most unfortunate times. I can do things with confidence knowing that it takes super human effort to clear my bowels
  • Bladder Problems / a sudden need to urinate or incontinence. No incontinence, thank God. Need to urinate is no more than usual
  • Orthostatic Hypotension / low blood pressure upon standing. Sometimes a little dizzy but no big deal
  • Pain central pain other than pain caused
  • by posture problems or dystonia - I suffered unexplaned pains for year.
Hope for the Future - As long as the pills keep working the future looks bright, but then those jungle drums startle me when I see the great Ali in a wheel chair. Then I remember he had it for 30 years and I doubt I will last another 26 years. So all is good - well - except for the death part.

Tuesday 7 October 2014

Sat on the Park Bench Like Bookends

I had breakfast with a couple of old friends. I am the oldest by one year. We are all past 65 and tending toward the morbid. We were estimating the number of years we have left. I give myself an outside chance of 18 years, the other two gave themselves 13 to 15 years. I think I am being optimistic, but if not, I hope that when I die, I die with dignity.

Anyway, as we older folks tend to do, our conversation drifted into our various ailments. For me there is only PD. I know that because of my exercise machine, I am in better physical shape than both my companions.

Conversation One with a man who has been unable to work since the late 90's - early this century, legitimate I hasten to add. I had not seen him since 2001.

Me: So how is your health these days?
Ga: Better (I hear some doubt in his voice)
Me: What was the problem?
Ga: Bipolar and Chronic Fatigue Syndrome. The medication helps with the bipolar but I am still tired.

At this point our colleague returned to the table, hears the chatter and joins in.

Ge: You know, I am tired and stiff and my right arm feels weak. My right leg too Sometimes, when I am relaxed, one of my fingers starts to jump. My doctor says I might have had a stroke<.br> Me: I doubt it. I think there would be more severe signs.
Ge: What were your symptoms.
Me: I went to my GP complaining about weakness in my arms - I didn't mention the hand tremor because it only came after a hard workout so I thought nothing of it. My doc took some tests, said he didn't think it was anything serious but referred me to a neuro just to be sure. By the time I saw him, my symptoms were a hand that tremored when at rest, weaknees on the fight side of my body, a loss of the sense of smell and exhaustion.
Ge: That sounds like me. Do you think I should see someone? Do you think I have Parkinson's?
Me: The odds are against it but I would get it checked anyway.

But what are the chances my friend has PD

If you look at the odds, in 2012 there were approximately 100,000 Canadians with PD out of 35 million people. The odds are very low.

However, that number is expected to double by 2016. Why. Because we are the baby boomers and we are living longer. More aging people + better health care system = longer life.

But you never know. Here from http://www.parkinson.org/parkinson-s-disease/pd-101/10-early-warning-signs-of-parkinson-s-disease are ten warning signs of PD. What do you think? PD or no PD? I will let you know.

Tremor or Shaking

Have you noticed a slight shaking or tremor in your finger, thumb, hand, chin or lip? Does your leg shake when you sit down or relax? Twitching or shaking of limbs is a common early sign of Parkinson’s disease.
What is normal? Shaking can be normal after lots of exercise, if you have been injured, or could be caused by a medicine you take.

Small Handwriting

Has your handwriting suddenly gotten much smaller than in it was in the past? You may notice the way you write words on a page has changed, such as letter sizes are smaller and the words are crowded together. A sudden change in handwriting is often a sign of Parkinson’s disease.
What is normal? Sometimes writing can change as you get older, if you have stiff hands or fingers or poor vision, but this happens over time and not suddenly.

Loss of Smell

Have you noticed you no longer smell certain foods very well? If you seem to have more trouble smelling foods like bananas, dill pickles or licorice, you should ask your doctor about Parkinson’s disease.
What is normal? Your sense of smell can be changed by a cold, flu or a stuffy nose, but it should come back after you are better.

Trouble Sleeping

Do you thrash around in bed or kick and punch while you are deeply asleep? You might notice that you started falling out of bed while asleep. Sometimes, your spouse will notice, or will want to move to another bed. Sudden movements during sleep may be a sign of Parkinson’s disease.
What is normal? It is normal for everyone to have a night when they ‘toss and turn’ instead of sleeping.

Trouble Moving or Walking

Do you feel stiff in your body, arms or legs? Sometimes stiffness goes away as you move. If it does not, it can be a sign of Parkinson’s disease. You might notice that your arms don’t swing when you walk, or maybe other people have said you look stiff. An early sign might be stiffness or pain in your shoulder or hips. People sometimes say their feet seem ‘stuck to the floor.’
What is normal? If you have injured your arm or shoulder, you may not be able to use it as well until it is healed or another illness like arthritis might cause the same symptom.

Constipation Do you have trouble moving your bowels without straining every day? Straining to move your bowels can be an early sign of Parkinson’s disease and you should talk to your doctor.
What is normal? If you do not have enough water or fiber in your body, it can cause problems in the bathroom. Also some medicine will cause constipation too. If there is no other reason such as diet or medicine that would cause you to have trouble moving your bowels, you should speak with your doctor.

A Soft or Low Voice

Have other people told you that your voice is very soft when you speak in a normal tone, or that you sound hoarse? If there has been a change in your voice you should see your doctor about whether it could be Parkinson’s disease. Sometimes you might think other people are losing their hearing, when really you are speaking more softly.
What is normal? A chest cold or other virus can cause your voice to sound different but you should go back to sounding the same when you get over your cough or cold.

Masked Face

Have you been told that you have a serious, depressed or mad look on your face more often, even when you are not in a bad mood? This serious looking face is called masking. Also, if you or other people notice that you have a blank stare or do not blink your eyes very often, you should ask your doctor about Parkinson’s disease.
What is normal? Some medicines can cause you to have the same type of serious or staring look, but you would go back to the way you were after you stopped the medication. Dizziness or Fainting

Do you notice that you often feel dizzy when you stand up out of a chair? Feeling dizzy or fainting can be signs of low blood pressure and can be linked to Parkinson’s disease. What is normal? Everyone has had a time when they stood up and felt dizzy, but if it happens on a regular basis you should see your doctor.

Stooping or Hunching Over

Are you not standing up as straight as you used to? If you or your family or friends notice that you seem to be stooping, leaning or slouching when you stand, it could be a sign of Parkinson’s disease.
What is normal? If you have pain from an injury or if you are sick, it might cause you to stand crookedly. Also, a problem with your bones can make you hunch over.

Risk Factors

WHAT ARE THE RISKS

(Re printed from A PD Blog at http://parkinsonsjourney.com/what-are-the-odds-of-developing-parkinsons-disease/)

Lighter colored hair. Yes, that’s right. A person with black hair has the best chance of escaping a diagnosis of PD than that of a person with red or blonde hair, red being the greatest chance. I don’t think dyed hair counts.

Family history. Hereditary factors/genetics can play a part. If you have a close relative who has Parkinson’s disease (such as a parent/sibling) your chances increase.

Men tend to be more at risk than women for unknown reasons. However, this fact can also depend on what country you live in.

If you are over the age of sixty, the likelihood of developing PD is greater. However, there are a select few rare known cases of PD starting at the age of two.

The Amish community seems to have the highest rate of PD among any other communities. It is thought that the culprit may be all the pesticides used in their farming. Which leads to… Exposure to toxins playing a large part in some PD cases as well as those individuals who relied on well water for drinking and cooking. This is due to the chemicals/pesticides found in the water. It is said that Nebraska has the highest rate of PD in the United States, most likely due to the pesticides used in their farming, as well.

Trauma to the head may play a role as damage is done to the dopamine that producing neurons in the brain. If you were one to bang your head against the wall in frustration, well… you shouldn’t have.

Manganese, a known cause of Parkinson’s if the concentrations are high enough, is found in a town in Italy. The concentrations there are high enough and approximately 410 out of 100,000 people have been diagnosed with PD.

Ethnicity has been studied, showing Caucasians have greater odds over African Americans.

Illicit drugs use may be a factor as the drugs have a bulls-eye target for the dopamine producing neurons inside the brain.

Studies have shown that PD is much more prevalent amongst welders, significantly higher amongst physicians, dentists, teachers, lawyers, scientists, computer programmers (young onset PD diagnosis greater for this group), clerical occupations, agricultural workers, hunting and forestry occupations were also positively associated with Parkinson’s Disease. Those people involved in manufacturing and transportation were less likely to get Parkinson’s Disease.

So… what does this all mean? Here it is:

If you are a welder, physician, dentist, teacher, lawyer, scientist, computer programmer, person involved in clerical work, agricultural worker, hunting and forestry vocation person, and… have a family history of PD, are male, are over 60, Amish and are growing manganese plants as a hobby; if you are Caucasian, take illicit drugs, banged your head against a wall, live in Nebraska, have red hair and a family history of PD, then chances are – you MIGHT get PD. Then again, it depends on which country you live in, too.

Another interesting tidbit? Those involved in the manufacturing and transportation fields were less likely to get PD. Caffeine and smoking are said to help prevent PD.

Tuesday 30 September 2014

And away we go....

Just a little accounting post showing page views for the past week. Total page views are 26,190.

Last 7 days

  1. United States 82
  2. Canada 67
  3. France 43
  4. United Kingdom 25
  5. Russia 4
  6. Ukraine 3
  7. Germany 2
  8. Netherlands 2
  9. Belarus 1
  10. Spain 1

When I started this blog, I thought I would be lucky to get a few hundred page views. I hope I have helped some PWP, dispelled some myths about the condition and provided information to anyone seeking it.

Sunday 28 September 2014

Revisting lost posts

The trip from hell

I love Miami Beach. Even in February, it is hot (but not humid, much like our Manitoba summers here in Canada). The tropical heat is a welcome break from winter. On the day we left, it was 40 below (F) in Winnipeg and 80F (about 25C) in South Beach. This was our 11th trip and we settled into our usual routine - wife window shopping, me running the beach. This past February, I was feeling full of energy and would often run a couple of miles twice a day. The hill at the new South Pointe Park was a good challenge and made my runs all the more difficult. The only problem was, my right hand seemed to have a life of its own. After a strenuous run, it would start vibrating and then shaking. It only lasted a minute or so and if it didn't stop on its own, I could force it to stop by squeezing my thumb and finger together. I showed my wife and we laughed. I chose to ignore it as much as possible and kept running that hill. Sometimes my hand would dance, other times it did not and the 2 weeks went by too quickly. We left Miami International at about 2 in the afternoon. We had to be diverted over the gulf coast because a space ship was landing (only in Florida) but the rest of the flight was uneventful. It was clear most of the way, which is not all that great because you can literally see the changing of the seasons beneath the plane. Winter began again over the northern states and we knew what would be waiting for us in Toronto - snow and cold. What we didn't expect was fog. We began our descent. We were flying through a cloud flecked with snow. I noticed on the TV screen that we were 1000ft from the ground when the engines powered up and it felt like we began climbing vertically at several hundred miles per hour. After a few minutes of climbing, our pilot informed us that we had been too close to the plane landing before us and consequently, we would have to fly to Montreal to refuel...?????.... That still makes no sense to me but apparently we were going to Montreal and we did. I began to get annoyed. If we had enough fuel to fly to Montreal, why couldn't we just circle and try the landing again? I noticed a slight tremor in my hand. We landed in Montreal some time later and after a lengthy stay on the tarmac, we were airborne to Toronto, this time without incident. My hand calmed down. We missed our connection to Winnipeg and were put up in a hotel, but to get to that hotel, we would have to wait outside for the shuttle. Just a few minutes. It wasn't Winnipeg cold but it was cold. I only had on a spring jacket and I began to get chilled, and really, really annoyed, as those few minutes droned on. By the time an hour was up, my hand was out of control - bouncing around like a fish out of water. Now to control it, I had to ball my hand into a fist and squeeze. When that didn't work, I put my hand in my pocket, out of sight from the curious crowd. We finally got to the hotel and I went to sleep. A normal 2.5 hour trip had taken almost 8 hours. Sleep came quickly and when I awoke my hand was behaving itself but by then, my wife and I decided I should get it looked at.

I am Confident in my Diagnosis

It is mid-March, 2011.  It is cold enough that I am wearing mitts.  The people who I pass cannot tell that inside my right mitt, my hand is doing a tap dance.  I am on my way to the neurologist.  I cannot "think" my way to a stable hand, only a tight clench will stop it.  I sit in the waiting room and am surprised when my hand becomes normal when I grip my pocketbook.  The doctor is late and I read 20 pages or so without a problem. He arrives and I can see he is older than me (65).  That's good, I decide, lots of experience.  He calls me into his office and has me sit on an examination table.  I tell him my story and he tells me to put my hands in my lap, palms up, and count back from 100 by 7's.  That's easy, I tell myself, 14 numbers and I will land on two.  With confidence I begin and the numbers come to me easily and I quickly finish.  Throughout, my hand is moving independently.  He tells me to get down and indicates a chair.  I sit down.  "It is early stage Parkinson's," he says.  I say nothing.  "You can get a second opinion if you want, but I am confident in my diagnosis."  Again, I say nothing.  "Do you have any questions about the condition?"  No.

He gives me a copy of an article torn out of a magazine and I leave.  I don't bother reading the article.  I have heard of Parkinson's Disease, but he might have told me, "you have a cold" for all the impact his diagnosis has had.  Whatever it is, I can learn to live with it, just as I have learned to live with "fibromyalgia".  It is only later, after a couple of hours on google, that the diagnosis hits me square in the face.  I have an incurable degenerative disease.  I can only get worse and there is nothing I can do about it.  I read that the symptoms can be controlled (that's good!) but the positive effects of medication can diminish after prolonged use (I don't like the sound of that!).  It is different for all patients and can progress slowly in some (that will be me!)  Exercise helps (got that covered!).  Eat dark chocolate (love the stuff!).  Try fava beans (who eats these things!  I pass.)  Avoid stress (I am a lawyer!  Any suggestions!).  There are thousands of articles and I devour several dozen but the best site I find is a Parkinson's site in the United Kingdom .  The people with Parkinson's there give me hope and that is where I am today.  For some reason, I am not upset.  I don't think of my future as being bleak, thanks to these people who have lived with the disease for some time.   From now on, parkinson's no longer deserves a capital "P".

The trip from hell part 2

Right now I am sitting in Toronto International Airport. My plane to Winnipeg is an hour late. My hand is jumping around badly. As I type,I keep repeating letters and having to correct. Why is that? You might ask.

Sit tight and I will tell you why I may never go to Miami again.

We got on the plane in Miami, on time, but didn't move because there was something wrong with the cargo door and maintenance had to fix it. We sat there for about an hour until it was fixed. We began to taxi. The flight attendants seemed to be rushing to and fro. Something was up! The captain came on the intercom and said, "Sorry folks, we have to return to the gate as a piece of paneling has come loose and is falling on a passenger's head." WHAT? "We will be going back to the gate and maintenance will repair it." ARE YOU KIDDING ME? I turned to look and sure enough, part of the ceiling (2' x 2') had come loose and was hanging by some wires. The plane was falling apart! This did not inspire confidence. An hour passed; the ceiling was fixed and we began to taxi. We stopped when the pilot advised there was a "ground hold in effect but it should only last 15 or 20 minutes." I chose 15, but I lost. So two hours and 20 minutes later, we actually took flight, only to arrive in Toronto to discover, as I said, our connecting plane was an hour late.

I was just glad we made it, seeing as how our plane appeared to be a lemon.

Is it any wonder my hand is doing a two-step!

An announcement was just made......"We will be further delayed as there is a slight maintenance problem on the plane."....... NOW WHAT?

Thursday 25 September 2014

Is that handwriting on my wall a forgery!

What was your diagnosis? " I asked the first neurologist. "I have to tell my wife exactly or she will be irritated."

"I said it is early stage parkinson's. How's your handwriting?"

"My cursive is better than my printing."

He raised an eyebrow, as if he was staring me down. "Show me." he said. "Write (here I forget what he told me to write, something to do with the weather, I think")

I finished and passed it over to him. "Hmm, that's pretty good." And for a moment he seemed to lose his train of thought. But. "No, you have Parkinson's Disease. I am confident in my diagnosis as I said before."

He was right, I did have PD. I went home and read about the handwriting of PWP. It got increasingly difficult to form the words which seemed to get smaller as the writing continued. My writing was perfectly straight, legible and neat. That must have given him pause.

He needn't have worried. My handwriting went to hell, to the point where my wife had to write out cheques for me to sign. My scrawl was illegible, hers was beautiful "femme writing"

To the rescue came my personal knight in shinning armor. Yes, the all-powerful L-Dopa.

Tim Tebow(that American quarter back with a religious zeal, who, in his zelousness, thought that Jesus Christ had any interest in a football game), said this following a game:

"I guess, first and foremost, I'd like to thank my Lord and Savior, Jesus Christ"

I would substitute "Levadopa" for "Jesus" and be closer to an honest religious experience. When the LD kicks in, my world lights up and my handwriting returns to the glory of Pre-PD. I can actually write cheques and, believe it or not, address envelopes.

Now all this might be nothing to you, but to me it is one small victory in a losing battle with an enemy I can't see but who is taking shots at me constantly with my only warrior being the mighty L-Dopa, I know the drug will gradually lose its effectiveness in the future and I will have surernder unless the researchers can find a cure. But apparently, mine is not the only problem in the world.

"We have common enemies today. It's called childhood poverty. It's called cancer. It's called AIDS. It's called Parkinson's. It's called muscular Dystrophy."(Jerrry Doyle talk show host)

I remain confident they will all be curable in the future but do me a favour, make the shaking palsy a priority. Kind of selfish, I know, but hey, what are you going to do? I keep on keeping it positive. The writing is on the wall. PD is doomed and will be the first to go.

Friday 19 September 2014

Let's have a little quiet in here (hear?)

"What are you going to do?" I said to the principal, a fine, sophisticated lady, who had just been told off by a parent.

"Nothing," she said, "I am going to remain silent."

"Then what?"

"Well," she said, "Did you see that tree just outside my office?"

"What are you talking about?" There was a reception area outside her office. No plants of any kind.

"That is the tree,"she continued, "On which I place my problems and every so often a little wind comes and blows them away and I just quietly wait for that wind." Today's problem will be placed on that tree. You will see, it will be gone by morning.

I had learned the value of silence.

Silence is the most difficult argument to defeat. She was right. Her silence defused the situation and the problem was gone from the tree.

For the past 3 years I have pretty much been silent. Silence was my sanctum sanctorum. The place where my problems disappeared. I had to remain silent because when I spoke, nobody could hear me and those who could, no doubt thought I was either stupid or on my way to the darkness of altzheimer's. I had trouble finding the words, stumbling over them, searching for a simpler way of getting my idea across.

I believe I mentioned that PD is a Zero Sum Game, the bad offsets the good and sometimes, vice versa. L-dopa has given me back my voice and speaking ability. They are still not at the pre-PD level, but for me, it is shouting and word lapses are disappearing. I am gradually regaining confidence. Of course it can't be all good. That would be asking too much. L-dopa takes a half hour or so to kick in, lasts a couple of hours or more and then wears off. Toward the end of the wearing off period, I turn to silence. And, you know, it really is better to be silent and to be thought a fool than to open your mouth and remove all doubt.

Che said something to the effect that silence is argument by other means. I know what he meant. Sometimes silence is power. It really is the most difficult argument to defeat.

But this is not an essay on Silence and Power. It is simply to let you know I HAVE MY VOICE BACK but I will not completely forsake my haven of silence.

I leave you with this thought about voice. I heard Bill Cosby say, "Women don't want to hear what you think. Women want to hear what they think - in a deeper voice."

Perhaps silence is a safer place after all.

Monday 15 September 2014

"I was walking down the street wearing glasses when the prescription ran out." (Steven Wright - of course)

Life for a PWP appears to be a Zero Sum Game. Something good happens then bingo! Something bad has to happen to set it off.

I started taking a low dose of L-Dopa along with the mirapex and amantadine. I was a different person. People could hear what I had to say and the inability to find words all but disappeared. Then my eyesight got weird. I could no longer see the clues in the crossword. Could the L-Dopa be the culprit or is just another coincidence? Perhaps. There is always room for coincidence and my life is filled with seemingly cause and effect occurrences, so I don't underestimate the frequency of coincidence, but it is curious that they occurred so close together.

On the upside, the trekking poles have taken over my walks. PWP should go immediately to a sporting goods store and buy a set. They range in price from $20.00 to over $200.00. I paid less than $100.00 and it was an excellent investment. I started off just walking, confident I would not fall, but today, I went to the school yard and literally bounded around the field. It was better than running and much better than walking. You work out both your upper and lower body. More importantly, you get the workout required for slowing the rate of progress of the disease.

Stats for this past week

  1. Romania 36
  2. Canada 34
  3. Ukraine 23
  4. United Kingdom 21
  5. United States 18
  6. Turkey 10
  7. Bulgaria 5
  8. Poland 3
  9. France 1
  10. Russia 1

total page views to date 25,793

Saturday 6 September 2014

"Cross Country skiing is great, if you live in a small country"-- Steven Wright

I didn't ski until I was in my fifties when my brother took us to Whistler, British Columbia. I was OK if nobody else was on the slopes; otherwise, I was terrible. My kids were better than I was but one morning my brother and I went out early to a blue slope. There was not another person there and I went down that slope like Jan Hudec. That was my last ski experience but it was worth all the falls and faceplants, and there were many, that I experienced while going for gold.

What's that got to do with anything? You might be asking yourself. Not much I am afraid, but I think of it every time I go for a walk. You see, a good friend gave me a set of trekking poles. So now I am in Whistler as I pole myself along the pavement. Believe me, these things are good for PWP. Not only do they guard against a lack of balance, you can go faster and further without the fear of falling and, it is quite a good upper body workout.

Somebody once noted about skiing:

  • traverse; one of two ways for stopping while skiing
  • Trees: the other way.
The blogger has left the building.

Monday 1 September 2014

Raindrops keep fallin' on my head

You would think we are living in Vancouver!! It is raining again. A near torrential rainfall. I wouldn't mind it so much if only the rain would fall upward. It's that damn gravity in action.

I know, I know, quit harping. Get a life. Accept your circumstances.

I'll have you know,some people equate whining with creativity so how about just one more little complaint

Any whining I have done concerning the ravages of PD was put in perspective this week, when a friend lost his battle with ALS. What an insidious condition that is! He was the second person I knew that had been afflicted with "Lou Gehrig's".

The first person lived with ALS for all of the 10 years I worked with her. She got progressively weaker and when I last heard, she was completely dependent on others. During our acquaintance, she was strong and met her future with dignity and a certain joie de vivre, despite the "disease". One day, I found her leaning against the wall in a hallway and she was crying. I stopped to see what I could do. She said something about feeling weak and tired, then she pulled herself together, told me she was OK and she went down to the staff room with her head held high. What a champion! I know she survived (maybe is still surviving) much longer than most victims of ALS.

The second person lasted a couple of years following diagnosis, or so I am told. Unfortunately, I had not taken the time to get together with him and hadn't seen him for 10 years or more. He was a real gentle man and very talented. I remember the first time he dared to get on a stage in a smokey pub circa 1966. He was nervous but ready. He started off with a Gordon Lightfoot song but stumbled over the words half way through. He stopped playing (guitar), apologized to the small crowd (gathering) of people who were more interested in the next beer than his problems. He restarted the song and when he was finished, the drinkers asked for more. He obliged, the drinkers listened, and the evening turned out well. He was that charming.

Kind of makes a little rain irrelevant, doesn't it? And. if I am being honest, PD is small pickings compared to ALS. I will probably still be a whiner but at least I will try, probably without success, to accept my circumstances. In the words of author, Mary Ann Shaffer “I much prefer whining to counting my blessings.”

"When you have a father and a mother who work all their lives so you can have an education and build your body - it's a blessing. When you have a wife who has been a tower of strength and shown more courage than you dreamed existed - that's the finest I know.
So I close in saying that I might have been given a bad break, but I've got an awful lot to live for." - Lou Gehrig (farewell address. 1939)

Friday 29 August 2014

O THE HUMANITY!

Several things have affected my life this past week. First and foremost, my "teener's" TV show, "Pretty Little Liars", has jumped the shark! Not that any part of the plot was plausible, but an old house built like a maze! Spooky old lady! Parties in graveyards! And those girls! Are they rich? They wear a different outfit everyday and sometimes twice a day. But the silliest thing of all was Ally using one hand to dig herself out and survive being buried alive Give me a break. There should be a warning at the start - This show has parts that are ridiculous and require parental observation.

And to top it all off Ezra is a bad guy! I am afraid I will not be watching anymore.

Secondly, I have decided to retire for sure. It will take a few months, but I am no longer accepting new clients or new files from current clients. It will be nice to lose that albatrossl

Finally, as I wrote in my last post, I was put on L-dopa and was warned I could expect to have nausea and/or some light headiness. I faithfully took the recommended dosage and did experience a slight sickness which disappeared in a couple of days. That was OK but the light headiness! Well, that was an understatement. There were times I floated like the Hindenburg and then suffered the same fate. That little pill was making me worse, but I persisted and, today I felt OK. It ]s hard to believe that was only about a week or 10 days ago that I started.

I hold onto the axiom that persistence conquers everything.

Oh, Oh, I just had a fleeting moment of doubt.

Wednesday 27 August 2014

How high's my problem mama? 6 feet high and risin'

I will get to the PD after I get this off my chest. We bought a house that is suitable for a PWD - ie - it is a bungalow. It has all been re-modeled into a modern, open-spaced, window filled area. In the basement there is a large family room, bathroom and bedroom. Here, only the bathroom was made current but the other spaces (except for a large storage space) had new carpeting but an older ceiling. My wife had the ceiling and its lighting re-done because there was not enough light so she added 10 or so pot lights and it looked great.

Before buying the house, we hired an expert to inspect it. He did a relatively good job, so we entered the deal with eyes wide open. We knew we would have to put some money into the place and we did; but, we didn't get around to replacing the crumbling window wells. You know what it's like. It's the lazy, hazy, crazy days of summer and we live on the prairies, which are hot and dry. No worrying about window wells. The window wells will be repaired before winter, before they fill with snow. The house was perfect. We knew all its warts but we happily bought it and moved in. It was all we expected; not only was it nicely renovated, it was located in a safe, friendly neighborhood and it would serve me weill, if I deteriorated to the point where stairs became a problem. We were happy. All was copasetic.

That is....until the day that the rains came down! torrential rains! on the Canadian prairies. We are used to hard rain during our summer when a convection thunder storm passes through but they last 10 or 15 minutes and pass on. This was a 1 in 100 year rainfall and our window wells filled up with water pushing against ancient windows that eventually began to leak and the leak became a waterfall. We tried our best to stop the invasion but to good end. Try stopping Niagara Falls. You get the picture? By the end of the rainfall, the carpet was wreaked and I was a PD wreck! The tremor in my right side was beginning to wander into my left. It settled down when we decided there was nothing we could do to stop the onslaught and we will get those window wells fixed and the windows replaced before summer ends.

The PD feeling of weakness was now in my left hand but no tremor...yet.

Coincidentally, I had an appointment with my neuro who prescribed L-dopa in addition to my other pills. Well, drug seemed not to do too much and oddly when I started taking them, my balance seemed to get worse. I wobble sometimes and yesterday I went for a long walk, the last 20 minutes of which were horrible. My right leg was not co-operating at all. I got in an argument with my gray matter. I would instruct my brain to rid me of this feeling of vertical vertigo and would get the response, "Stop yammering little man, I am the brains of this outfit and will do as I please." Try as I might, I could not get my right foot to stop scraping the ground. I tried all the tricks to no avail. I would stumble like a sailor three sheets to the wind. The last 200 meters took a good 10 minutes because now I was listing to the right and would have fallen but for the fact that the grounds of most backyards that abut the sidewalk are surrounded by 6 foot high fences which I used to stop a fall, which happened a couple of times.

I got home, sat on the front steps to get rejuvenated. After 5 minutes, I stood up and my brain took over again. I stumbled, grabbed at a vertical pole, but I was too far gone. I fell off the stoop face-first into my lawn. No harm done except my dignity was damaged. I got up, dusted myself off and went to my home office. I wasn't going let the bastard PD get me down. In the words of Michael J. Fox....

I have no choice about whether or not I have Parkinson's. I have nothing but choices about how I react to it. In those choices, there's freedom to do a lot of things in areas that I wouldn't have otherwise found myself in.

Friday 22 August 2014

This, That, and the Other Thing

I saw the neurologist a couple of days ago. My only real complaint was stiffness. He prescribed"Apo-levocarb", which is Canadian speak for "levodopa-carbidopa" Elsewhere in the world it is "Sinemet". At least I think that is correct. I have been taking the medication for the past three days with no noticible change. I guess I have to let it build up. All in all, I haven't progressed very far along the deterioration trail since our last visit. Doctor says I am still looking good. At least I think that is what he said. He is a bit of a low-talker, like me.

There are ghosts in my house. I have been getting those annoying, fortunately fleeting, hallucinations out of the corner of my eye. They are more of a "feeling" thing - you know - "I feel a presence" but the feeling comes with a non-existent, never persistent, image. My latest visitor popped up a few minutes ago. I believe it was a well-dressed lady about to pour something. I really didn't "see" anything but I "felt" the image. I am exhausted and I think that is probably what causes me to "see-feel" things as my mind begins to wander. Surely I am not on the path to the cuckoos nest type facility; however, all the talk about baby boomers and MS, ALS, and Parkinson's, makes my wonder from time to time. The number of victims of one of those diseases is increasing rapidly as the boomers age. Where will they go? There are not enough facilities. Well, no facility for me! I am determined to remain intellectually active. I will not slip into the darkness of dimentia. Not me! Not ever!

In the meantime, "Would you like me to decipher a Rorshach for you?"

Monday 18 August 2014

I wish to write something sensible, but I know not how

God, could I be any stupider? Listen PWP make sure you don't mix your medicine with alcohol if you don't know what will be the result of the mixture. I know that! I have written about it earlier. Alcohol and amantadine just fit so nicely, they can form a cabal against you and take your struggle with PD to another, different level.

We all know that PD can wreak havoc with your circadian rhythm (if you are lucky enough to have one). That's why some posters to forums are posting in the wee hours of the morning. Well, mixing booze and amantadine can destroy sleep entirely. Hopefully not for long.

With the help of zopoclone, I get fairly decent sleeps; although, my usual wake up time is around 4:30. For the 5 or 6 hours before arising, a nuclear bomb could not wake me. I was going along very well..until..my brother and his wife came to visit and treated us to a classy dinner. I always enjoy being wih them and the laughter coming from our table always adds to the evening. My brother and I seem to always get into an Oliver and Hardy game and he usually wins. This time he talked me into a champagne/gin combo along with a few glasses of white wine. My wife and I got home, got into bed and started a mini netflix marathon during which I was into and out of consciousness, I was so tired. It came time to hit the hay but wait....I had to take my medication, amantadine being one of them. Within 15 minutes, I went from exhaustion to hyper activity and, it lasted all night. I got not one second of sleep and finally gave up trying at 4AM when I went to my office. Even 15mg of zopoclone didn't help and as I type this, at 4pm the next day, I am still wide awake.

How could I have been so stupid. I did what I preach PWP should not do. Stupid. Stupid. Stupid.

I never let common sense and knowledge get in the way of my stupidity.

In the immortal words of Frank Zappa, “There is more stupidity than hydrogen in the universe, and it has a longer shelf life.

It is now 5PM and I am a little sleepy. There is always that four-letter word .... hope.