Happiness is a warm run.

I received some inspirational words from a reader in Oregon and so I decided to run further today. Now keep in mind that this is only my third run and, even though the cherry blossoms are in bloom and everything is green, the weather here stinks. Over the next 3 days temperatures will range in the 5C to 14C (approx 40F to 58F), so my run would have been miserable except that the rain gods held off and the temperature temporarily rose to 15C (approx 60F), still not warm but it beats being cold and wet.

So, off I went and did the first .6 miles fairly easily but my lungs were burning and felt the force pulling me forward and down. Over the next 2.4 miles, I took it easy - one block walk followed by a 3 block run, etc. I actually felt like I had accomplished something. I may even be in better shape now than BPD (before PD). I am going to keep at it until I am able to run the entire 3 miles without falling or having a lung collapse. Call me a loon; I still hate running, but at least now I have a mission objective and I will accomplish it, or die trying. Hell, I will do anything to slow down the progression of PD and right now, vigorous exercise tops the list of my strategies.

My thanks to J of Grey Co----- for her inspirational email. Sixteen years into PD and J of Grey is still active at 67 with symptoms that are barely noticeable. She credits her drugs and her regular exercise.

"Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do.
So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails.
Explore. Dream. Discover."

Mark Twain's philosophy can, and should, apply to all people with PD. We are not under a death sentence. The condition is manageable and we don't want to leave life with any regrets. So get up off your sofa and exercise. It's like chicken soup for a cold - might not help, but it can't hurt.

I will keep on keeping on,still hating running (actually "jogging" is a better word or more accurately "very slow jogging") but I will hate it less in the dog days of summer and particularly in the tropical warmth of South Miami Beach next winter.

The Parkie Preakness

I summoned all my courage at 4:30AM. What the heck? Can't sleep! Turn on the weather channel. 15C. Not exactly tropical, but pleasant for this time of day. Maybe I will try running again. I have to think about that for a bit. I do my stretches, get back into bed, try to sleep. Not going to happen. Might as well run....unless it is raining....I look out the window. No such luck. The sky is gray and gloomy, but it is not raining. No excuses. I don my running gear and head outside with my ipod blasting music into my noggin. Start walking. At the end of the block, George Thorogood and the Destroyers - Johnny B. Goode - kick me into high gear. I begin to run. As I approach the mile mark, I find myself having to resist the pull of my body forward and downward by some unknown force. I fight it and remain rigidly upright. In the end, I get in about 1.50 miles with a cool down of a 1.50 mile walk. Not bad. Not too shabby at all! I feel good, like I have beaten PD back a step or two.

I absented myself to the beach for two days of relaxation and meditation. It is too cool to do anything but watch movies and take the occasional walk. Here it is, May 25, and the ice is still on the lake. This is most unusual. Businesses are suffering and the town looks abandoned. Oh well! I came here to get away from the office and relax. Five movies later and I couldn't possibly be more relaxed. No stress and, as I have said before, exercise and an avoidance of stress are the only known (or maybe "accepted" is a better word) ways of slowing the progression of PD. I accomplish both at the cottage.

I, and I am sure all PWP, am really looking forward to Michael J. Foxe's new show (trailer) It is good that we can laugh at ourselves.

Lake Winnipeg, May 25, 2013

Running is a mental sport. All runners are insane!.

I think I have told you in previous blogs that I hated running when I did it for 25 years - hated every step of the way, but I kept doing it (that is the OCD in me). Finally, when diagnosed with PD, for some reason I stopped running. I think it was because I was afraid of falling. When I experienced my "PD Walk &Fall" back in the winter - you know the one, where you try to catch up with your centre of gravity which inexplicably moves beyond your body and you end up falling - I became more nervous. I tried jogging once when I was in Miami Beach and got about 300m before I stopped. I was slightly pleased with myself but decided I would just be a walker.

But, summer has finally arrived and not far from us is a stately street called Wellington. It has two - four lane routes separated by a wide boulevard, down the middle of which is a running/walking path. My writing is inadequate to describe the beauty of this street with its multi-million dollar homes, years old elms, oaks and other species lining the boulevard and hiding the houses.....But I digress. I am not a travel agent. The importance of Wellington to me and what brought on this mild description of its elegance is that, with the warmer weather, the path is loaded with runners and I am jealous! So, the other morning I decided I would give running another chance. Now I hadn't run in a year and a half approximately. Off I went and I lasted a mile followed by a 2 mile walk. My lungs were burning and I was short of breath, but I did it. I actually ran - well sort of - truth is, my daughter's mascara runs faster than I did on my first day back. But I plan to continue.

My exercise regime now consists of: everyday, 5AM, 15 minutes of stretching. Day 1, a half hour of weight training using only 10 pound dumbbells and power ribbons. Day 2 a half hour on the stationary bike pushing my heart rate above 115. Day 3 - either a walk or a run (a walk takes an hour - it will be a while before I know how long the run is going to take. Day 4 I begin the 3 day cycle again and on the 7th day I rest. As I have said before, I believe exercising is keeping the PD at bay.

Now let's hope I don't drop dead from exhaustion or a heart attack or something more insidious.

Patience

Patience: n. A minor form of despair, disguised as a virtue.(Ambrose Bierce)

The Cure Parkinson's Trust is delighted that the Exenatide (Exendin) study results have been published in the Journal of Clinical Investigation. The study was funded by The Cure Parkinson's Trust and took place at UCL in London.

Tom Isaacs, Co-founder and President, The Cure Parkinson’s Trust, said:

"There are three exciting thing about these results:

1. If future and larger studies on this drug prove the outcome of this trial, then because of its status as a diabetes type 2 treatment, its use in Parkinson’s could be dramatically accelerated. It is possible that this therapy could be available to people with Parkinson’s within a matter of a few years.
   
2. These results suggest that the drug is safe and well tolerated by people with Parkinson’s and that it may have a beneficial effect on both motor and non-motor symptoms.
   
3. Scientific experts who have analysed these results say that the trial not only 'speak in favour of a disease-modifying effect' but also they recognise the nature and scale of this trial as a cost effective, quicker and more practical method of screening new molecules for use in Parkinson’s.

Things are looking up. I (we) just have to have patience and avoid the gloom of despair and the indifference that would follow.

What can I take for hypochrondria?????

One big problem with the internet, it has so much information about PD that after reading several articles, I would either start having symptoms I didn't really have or I attributed every little ache or pain or other problem to PD.

I was having problems with my eyes which, I concluded, were caused by PD. I went to my neuro, my optometrist and GP all of whom summarily dismissed my diagnosis with statements related to the theme "PD has no effect on the eyes", or, to give my neuro his due, "It's unlikely". Faced with this amount of expertise, I decided that again hypochondria was taking hold of me.

Wait a minute! Wait just a darn minute. Is it just a coincidence that my eye problems began when my PD became noticeable?

Hmmm. Good question. (pause to give myself a pat on the back for such insight) Back I go to the internet where I find an article on the Parkinson's Disease Foundation webpage titled "Vision Changes". Among the many eyesight problems were the two I was complaining about:

• Blurred or double vision, and eye strain, because the eyes may have trouble moving together to focus on things traveling toward or away from a person
  
• Dry eyes; people with PD may blink only 1-2 times per minute (normal is 16-18 times), leading to itching and burning

So, were the experts wrong? Maybe. But just in case, I am going to an eye expert sometime this year (it is hard to get an appointment) just to make sure it is not something more serious.

And, there we have it......paranoia, a subset of hypochondria.

"It's not about charisma and personality........" Steve Jobs

In a paper about occupational risk factors for getting PD, the authors noted that clinicians of the Pacific Parkinson's Research Institute of British Columbia Hospital, had observed "an excess of school teachers and those in health care professions among their patients". I had wondered about that; from reading the forums and blogs one can find online, there were a significant number of teachers. Until I read that paper, I chalked it up to coincidence. But, that old shibbolth, "there are no coincidences" kept ringing in my mind. I looked further and found that PWP share common traits, among them PWP are (or have):

• ambitious
• industrious
• serious
• single-minded
• rigid
• introverted
• slow-tempered
• harm-avoidant
• dislike of smoking & coffee
• punctual
• orderliness
• bad liars
• a tendency toward OCD

Of course we all don't share all of those characteristics, but I certainly see myself being described. Some think the presence of these common traits may predict the onset of PD decades later. We are clones of each other as far as personality is concerned, in fact, the presence of these these symptoms is called the "Parkinson's Personality". The big question is, where and when does personality fade into brain damage. Who knows? It is rather weird, and somewhat weary, belonging to a personality clique.

Oh yes. I almost forgot.

Just to add to the weirdness, did I mention I taught school for 26 years?

Life is a sexually transmitted, terminal disease!

I use the above title when I give presentations on the need for a person to make his/her Last Will and Testament. It usually evokes a few chuckles. Anyone can, and should, laugh at the veracity of this. It is not birth and death that should make you cringe, it is those little bumps along the highway of life that create the disturbance in the force. Hereinafter is my testament to that.

I hate to whine, especially when I said I wouldn't, but, what the hey, it makes me feel better. Parkinson's can cause a build up of saliva in the back of your throat, as can the flu. Wouldn't you know it, I have both. The flu came on suddenly and is in the process of weakening my body. It is another form of stress and PWP should avoid all forms of stress which is seen to be a factor in hastening the deterioration of the condition.

As you know, PD also changes your voice. At least it has changed mine. Two days ago I sounded like Phyllis Diller. Now, with the flu attacking me, I sound like a young Bob Dylan with a serious cold. I won't be singing any arias soon (of course, I am not sure what an "aria" is other than an answer in a crossword puzzle).

The flu will go away but the PD will continue its insidious work and I will attempt to improve my voice even up to a Willie Nelson level.

Until that time, I am going to bed to watch movies and drink copious amounts of tea because, as the Chinese are wont to say: 每天喝一杯茶，肯定会饿死药剂师 or words to that effect.

May the force bewith you and your journey be devoid of bumps.

I used to avoid thinking

BPD (before parkinson's) I would try to avoid thinking (not possible) because all I thought about was doing something and then doing something else, and another something else, etc, etc until finally, I would have to get up and do something. Because I have a touch of OCD, I would do that something to the point of exhaustion and, you know, it all started with that first little thought; hence, because I also have a touch of shiftlessness, I tried to avoid thinking, preferring to be comatose rather than exhausted.

All that changed with PD. Now I reach the point of exhaustion without doing anything. I work well from 4AM to about 1PM and then it hits me, the most overwhelming tiredness I have ever experienced. There are no adjectives that adequately describe the depth of this fatigue.

For example, I was at a session on the duty to accommodate employees with problems. It was very interesting, but by 2pm, I was awash with lassitude to the point I began to worry about the drive home ...would I fall asleep? etc. I had to leave the class at the break to come home and sleep. It is these sort of symptoms, the unseen ones, that make life harder for PWP.

The Michael J. Fox Foundation has this to say about fatigue and PD:

One of Parkinson’s more insidious symptoms is fatigue. This is not your garden variety bone-tired. This is fatigue on a cellular level. Your body is working overtime to accomplish the simplest of tasks: Taking a shower, answering the phone, pouring orange juice. In addition, you may be coping with the combination of possible cognitive problems known as "Parkinson's apathy". These problems include difficulty initiating projects, inability to follow complex instructions, short-term memory loss and difficulty in switching gears midstream

.
Fortunately, I don't suffer from Parkinson's apathy. Not yet anyway, but in the future? Who knows? In any event, when it comes to the future, I will avoid thinking and will follow Steve Jobs' method of relying on intuition instead. That worked for him (before his death) but as for me, I need a nap before intuiting anything,

Death is only a horizon, the limit of our sight.

OK, from now on, I vow never to whine about having PD. An old friend of mine, from my youth, died today, from cancer which was only diagnosed less than 8 months ago. From what he told me about his symptoms, it could not have been a comfortable death. He was someone who could make you laugh. Even when death was hanging over his shoulder, that humor was still present in his last phone call to me. I am impressed by his willingness to laugh at death so you will excuse me if I shed a quick tear for him. It has become necessary.

Ian Fleming said, "You only live twice. Once when you are born and once when you look death in the face." Interesting. Since I can't explain a life, I am unable to explain death. I understand what Fleming was saying that you come alive when confronted by death, but I think death itself will be the great adventure. I hope I will find my second life when I die; nevertheless, I am not interested in joining my friend just yet, but it is comforting to think he may find the journey satisfying.

All this talk of death makes me think of the poem "Requiem" by Steveson. He knew how to die.

Under the wide and starry sky
Dig the grave and let me lie:
Glad did I live and gladly die,
And I laid me down with a will

This be the verse you 'grave for me:
Here he lies where he long'd to be;
Home is the sailor, home from the sea,
And the hunter home from the hill

I will end this sermon with a quote from Woody Allen that, at this moment anyway, inspires me, "It's not that I am afraid to die, I just don't want to be there when it happens."

"Bigamy is when you have one wife too many; same as monogamy." An essay on wives, pills and optimism

Fortunately, the title does not describe my wife. Even though I am not debilitated by PD, she does help me psychologically and, if (or is it "when") things get difficult for me, I know she will be there both as a carer and as an advocate. I have been heard to describe her as my "secret weapon". If anybody disturbs her, particularly if it involves our children, grandchildren and yes, even me, she will hunt them down like a heat seeking missile and get satisfaction. The only good thing about PD is I will probably die before her, which is ideal for me as I would have a hard time being without her.

On to other things. I have told you a little about one of the drugs I take, mirapex, and how it can lead to compulsive behaviors, which have not befallen me, touch wood. On the other hand some or all of the following side effects have come my way.

• Headache
• Hyperalgesia (body aches and pains)
• Nausea and vomiting
• Sedation and somnolence
• Decreased appetite and subsequent weight loss
• Orthostatic hypotension (resulting in dizziness, lightheadedness, and possibly fainting, especially when standing up)
• Insomnia
• Hallucinations (seeing, hearing, smelling, tasting or feeling things that are not there)
• Twitching, twisting, or other unusual body movements
• Unusual tiredness or weakness

So.....Let's see ...(1) headaches - oh, occasionally but never too bad, (2) hyperalgesia - yup, quelquefois, more likely, tout le temps (3) nausea and vomiting - nope -not since I left university (and you know what that means),(4) sedation and somnolence - I think they are referring to that condition known as "near sleep" - ie - you are asleep but at a level where you are almost aware of what's going on. Without zopiclone, I would suffer from near sleep every night (5) decreased appetite and weight loss - Ha! I wish! (6) Insomnia - you bet, but zopiclone cures that (7) hallucinations - had some minor ones early on. I enjoyed them but they seem to have gone away (8) Twitching etc - oh boy, whenever I close my eyes to relax (9) unusual tiredness and weakness - tiredness is my close companion; fortunately not accompanied by weakness.

It snowed a couple of days ago and then yesterday the temperature reached 25C (80F) and will be the same today but tomorrow the cold returns and I bet it will continue for the rest of the week. That is the pessimist in me. The optimist in me whispers "at least we won't get an earthquake".

Aging is Regrettable

I think it was De Gaulle who said, "Old age is a shipwreck". He probably said it in french, but in either language, it is the truth. My body is falling apart. It all started when I "retired" in 2001 (before my latest profession started in earnest). In quick succession I suffered from (1) fibromyalgia (hmm - doctor, don't you mean "I have no idea why you have symmetrical pain?"), (2) head pain - not ache - real pain - for about 7 weeks while I was awake (I would sleep on a bag of frozen peas for relief) (3) shin and heal pain which persists to this day (and no doctor, it is not 'shin splints') (4) spinal stenosis (for those who haven't suffered from this condition, the pain is exquisitely, excrutiatingly, debilitating) (5) detached retina and the resultant floater side effect (like living in a bowl of amoebae, or is it amoebas?) (6) parkinson's (you know how I feel about that!)and now, taaadaaa (7)I am being tested for diabetes (really!!!!).

Now, don't get me wrong; I know there are other people far worse off than I; but, who cares! This is all about me. Indulge me.

“To be happy, we must not be too concerned with others.” (Camus)