counter

Monday 26 September 2016

Are we really, really here? Hallucinating in a dream word.

I should really explain those feeling / hallucinations that I wrote about yesterday. Here are their major characteristics:

  • They don't look real; rather, they resemble pencil drawn figures. Just outlines really.
  • They last nano-seconds most of the time.
  • Sometimes a vision lasts long enough that a feeling arises in me that I can't explain, and causes me to turn to check if someone is there
  • I think they are caused by exhaustion due to PD.
  • They can only appear out of the corner of my eye and are a the result of concentration and exhaustion when I am reading or working.
  • They are neither scary nor amusing but they can be annoying. I know they are not there, yet I sometimes have to turn just to make sure.

'Tis a strange world in which we PWP dwell or maybe I am losing my mind and in my world the penciled people are real and I am the hallucination. Yes, perhaps your life is but a dream in my dream. Am I a dream in yours?

Sunday 25 September 2016

Rain clouds and peeping Toms

In the words of that great philosopher, Elvis Presley, "Did you ever get one of those days..........Where nothing is right from morning to night. Did you ever get one of those days?"

I know whereof he speaks. I have been experiencing bad news and poor news; no good news (Is there ever even just 'agreeable news' for PWP?)

For the last two weeks, I've had the feeling that Joe Btfsplk is hanging nearby. He must have jinxed me! I have been jinxed! He must be here somewhere. Curse him and his little black cloud.

In no particular order, the following are the little joys of PD I suffered during those two weeks:

  • Prior to taking my meds, there arose a noticeable tremor in my left hand. I think I am moving into stage two. Not good news folks, not good news
  • sleep! My sleep is short and with interruptions of vibrant, realistic scary, dreams, the detritis of which can haunt me until I not sure if the dreams are my reality or my nightmare.
  • They are back! Those momentary feelings/hallucinations of people looking over my shoulder, trying to read my writing
Today, I have been visited by a young girl looking a much like Anne of Green Gables, as far as her clothing was concerned, who stood close beside me. She was too short to see the monitor and she faded away. The other visitor today as a 7 foot farm boy who just looked at the screen, as if memorizing it. Nothing else, he was just a "looker, a "peeping Tom".

I guess it's OK. I am sure he wasn't peeping intentionally, he just wanted to freak me out.

And he succeeded.

Al Capps' "Joe Btfsplk"

Sunday 18 September 2016

Vindication

Readers know how I feel about exercise. I HATE every step on the treadmill. I DETEST lifting weights and with winter coming I will DISLIKE my outdoor walk, trekking poles or not.

Why do you do it then?

I struggle through it every day because I am certain it is the only thing that is slowing down the rate at which I am degenerating. Now I find there is research that I am right. Exercise is the best medicine.

Yesterday I picked up a copy of TIME magazine with its cover photo of a man skipping. The headline was:

THE EXERCISE CURE. THE SURPRISING SCIENCE OF A LIFE CHANGING WORKOUT

The story within is just short of fascinating. It is lengthy but the writer offers a summary by answering 4 questions. I reproduce them here.

QUESTION: How much exercising do I really need to be doing?

The world Health Organization and the U.S. Centers for Disease Control and Prevention advise most adults to do 150 minutes of moderate-intensity aerobic physical activity each week and twice-weekly muscle strengthening.

QUESTION: what counts as moderate-intensity exercise?

everything you think of as exercise plus lots of stuff you don't, including brisk walking, playing with the kids, walking the dog, carrying heavy groceries or gardening. Do at least 10 minutes at a time, and break it up however you want.

QUESTION: Is high intensity interval training as good as regular training

more research is needed, but evidence suggests that short, all-out burst of exercise bring unique benefits. They're also a great option for the time-crunched. New research shows that as long as you go hard, intervals are just as effective as longer workouts, even for people with some chronic diseases.

QUESTION: I hate lifting weights, Can I just do cardio?

Sorry, but if your goal is to live longhand healthier, you should do both because they offer different benefits. Cardio will prevent you from being winded after climbing the stairs, while weight training will build muscle and bone, which protects against injury.

You are never too old to get your S@#t together and start exercising. Practitioners claim it's exhilarating! Maybe for some. For me it is time-consuming and tedious, but I will continue faithfully until the day I lose the war. Until then, my aim is to frustrate my dark passenger aka PD. I picture him slogging through quicksand while I stand on a rock and watch his progress decelerate. It takes all my determination to keep him slogging, but I am succeeding. You can too, but keep in mind the old saying that success is not the result of spontaneous combustion. You have to set yourself on fire.

Thursday 15 September 2016

Talking about my degeneration

J of Grey Cottage commented that a sense of humour should be added as a third component helping to slow the progress of my epic struggle with PD. I think you've got something there J. You offer the wisdom of the ages and I thank you for your insight.

Voltaire said something to the effect that good medicine amuses the patient while nature cures the disease and somewhere in the Bible is found “A cheerful heart is a good medicine, but a downcast spirit dries up the bones.” What an idea! Laugh in the face of a dreary future.

When I was diagnosed I was confronted with two options:

  1. I could moan my misfortune and wither away, living my life filled with self pity or
  2. I could look for humour in my situation and make good use of the time I had left before my body withered away, but not my mind.
That was it, I could cry or I could laugh.

Initially, I chose to do both. Well not really. I was taken aback, but I didn't know anything about PD, so I wasn't too upset. Thus only the second choice was available to me......Humor. I still have moments of doubt, but they are just that - moments. I truly believe there will be advancements in the treatment of PD in my lifetime and I choose to chortle my way into the future.

In his book, The Anatomy of an Illness, Norman Cousins wrote about the effect of humour on his ankylosing spondylitis, a very painful condition. He remarked that 10 minutes of belly laughter allowed him 2 hours of pain free-sleep. Humour deflects our negative thoughts. No more dwelling on our problem. In a sense, there is a negative correlation between laughter and pain. The more you laugh, the less you hurt. Sounds good to me.

Yes, we have a devastating "disease". Declare war on it. We have two weapons to slow down its progress while waiting for a brilliant young researcher to find a cure, exercise and laughter. It will take time but a cure is on the horizon. Be patient.

In the meantime, did you hear the one about the fellow who was shaken when diagnosed with parkinson's?

Get it?

Wednesday 14 September 2016

I have a ghost that you can't see

I went to see my neurologist, after having completed an hour's loud speaking with my speech therapist. Both appointments went well. Therapy is already helping - a good friend remarked, "you are talking loud now " What a welcome compliment! kk

The doctor had little to do, only to say, "You look good. How long ago were you diagnosed?" Thus endith the appointment.

My explanation for the slow progression of PD is 2-fold, (i) good luck and (ii) exercise.DS

Not hs all is good, but that which is not good, is manageable; aElxcept kk fir one 'maddening thing, the tendency of additional, unwelcome, letters in words or spaces, entered into my text by roque fingers ha. It is not my wish to spell "except" as "aElxcept", nor do I suggest "DS", "kk" and "hs" serve any purpose. I did not put them there, my fingers, operating independently, authored those little gems. They are my speed bumps, causing me to slow down, stop, and make corrections while trying to spew my thoughts efficiently, devoid of finger tremor.

I have to goo now; it is dinner aEtaiime (believe it or not, that is how the ghost within me spelled "time".)

Isn't PD interesting? Are we having fun yet?

Friday 9 September 2016

PAGEVIEWS

FOR THE LAST 7 DAYS

  1. Canada 62
  2. United States 31
  3. United Kingdom 25
  4. France 7
  5. Ukraine 6
  6. Australia 5
  7. Germany 3
  8. Nicaragua 3
  9. China 2
  10. India 1

TOTAL TO DATE......56,369

Shout. Shout. Let it all out.

The room was a garden of weird noises. Strange, unworldly. Ethereal. The sound of spirits bemoaning their situation. Prolonged "ah's", in a naked, syncopated manner.

"Louder," the woman ordered.

The man complied, dropped his jaw, and sent forth a long, hideous moan.

"Good," the woman said and the man was happy.

I know all this to be true.

I was there.

I was the man and this was day 1 of my second bout of LSVT LOUD voice therapy.

LSVT LOUD improves vocal loudness by stimulating the muscles of the voice box (larynx) and speech mechanism through a systematic hierarchy of exercises. Focused on a single goal “speak LOUD!” – the treatment improves respiratory, laryngeal and articulatory function to maximize speech intelligibility. The treatment does not train people for shouting or yelling; rather, LSVT LOUD uses loudness training to bring the voice to an improved, healthy vocal loudness with no strainn.

It is an intensive 16 day course of making noises, loudly. I thought I was yelling throughout the session but, as shown to me by technology , my voice was well below the the normal decibel level for conversation. LSVT LOUD is designed to bring your voice back to good standing on the decibel scale. I tried it once before and, eureka! it worked but, sadly, I didn't take it seriously and the gains I made faded to black. Fortunately, my therapist is giving me a second chance and this time, I will be an enthusiastic, committed participant.

I will make myself heard.

I am not much of a talker at the best of times. I hate small talk, but I also like to be heard when I have something to say.

So, now, if you will excuse me, I have to go and make some more noises.

Saturday 3 September 2016

A walk on the mild side.

Bradykinesia- slowness of motion. The individual's movements become increasingly slow and over time muscles may randomly "freeze".

I am definitely slowing down. Want proof? Here it is:

  • On a walk that took 11 minutes four months ago, now takes me 13 - 15 minutes. Feels like forever
  • I am the last person at the dinner table. Each Sunday we host a family dinner and the entire family deserts me and leaves me at the table, still eating.
  • When I speak, I can feel the words coming out of me - slowly - you know, like Henry Fonda or, God forbid, John Wayne.

These are the only clues I can think of at the moment. No doubt there will be others to add to this feeling of involuntary deceleration.

On a brighter note, we got tickets to see Cirque de Soleil. I am looking forward to that, except we have to walk several blocks from where we park, so it will be necessary to leave a couple of hours early, lest we miss the show due to my waning mobility.

I lie, I am still quite mobile, albeit at molasses speed.