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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)