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Saturday 29 December 2012

The Boy in the Bubble

Sometimes, while on my morning walk, I can feel that my legs are not working properly. They move OK and my wife tells me I look normal, but there is a strange, indescribable feeling that something is not quite right and if it were not so early and dark, and there was an audience, they would be staring at me and wondering if I was drunk.

I can also feel quite a little uncertain when I stand or turn suddenly. It is as if my sense of balance has taken a holiday. I haven't fallen and I am trying to make sure that doesn't happen

Some good news - I haven't had problems swallowing since just before diagnosis. I haven't had a repeat of too much saliva affecting my speech. Any ruddiness from the amantadine has gone. I am able to stay up until 10:30 (as opposed to 8:30 early on). So far as I know, the tremor is not in my right leg and is totally absent from the left side of my body (although, it might be there, but the drugs are masking it). Maybe it is progressing very slowly. One can only hope.

As for those indefinite feelings when I am walking, etc, they are merely stumbling blocks that I will turn into stepping stones to a reasonably dignified future and as Abe Lincoln said, "the best thing about the future is it comes one day at a time."

My new year's resolution will be to live one day at a time and ignore the future beyond the next day.

Happy New Year to all.

Tuesday 25 December 2012

That's what friends are for

Thanks to all who have read my blog. I have had readers from all over the world, from countries too many to name but I think they are representative of every continent.

I would like to give special thanks to the following:

  • Ron F - an old friend from Shilo who has offered me spiritual guidance. Thanks RF, I don't need it now but you never know.
  • Gale M - a good friend with OCD who keeps me grounded and makes me laugh.
  • Zoe F - my short-lived teenage girlfriend who likes to keep in touch.
  • Edith W - another old friend who first brought my blog to the attention of our teenage friends
  • Faye H - another Shilo and internet friend
  • Bill B who communicates with me regularly.
  • Bruce H & Brian H - like a second family growing up and especially thanks to Bruce who reads regularly and keeps me up-to-date on Brian
  • my brother, Don, who is concerned enough about my health that he went out of his way to get me an herbal remedy and who selflessly gives me legal advice on labour problems
  • Tim K who helped ease my mind when he told me of his essential tremor and the fact he liked King Biscuit Boy
  • Doug J who defended me in a minor internet crisis. We were right DJ, our antagonist was wrong
  • my sister, Yvonne, who I know reads and re-reads my blog daily
  • my nieces and nephews who, I know are concerned
  • my children who worry about me. Don't fret, I am good and will continue to be so
  • Brownian Movement who encouraged me to keep writing
  • and finally my wife, Sharron. Where would I be without her? She's the best.

If I forgot anyone, forgive me. It is Christmas morning and I have a half-hour to get ready before the children and grandchildren arrive. To all the Shilobrats and my 18 or so "followers", have a happy and healthy new year.

Monday 24 December 2012

So this is Christmas

Christmas - that time of year when there is nothing of interest on TV or the radio. Once you've seen It's a Wonderful Life, Miracle on 34th Street and the various versions of A Christmas Carol, there is no need to see them every year. To counteract this, I buy cheap movies to watch, especially on Christmas eve.

Around here, my wife makes Christmas special. She starts looking for presents for the next Christmas on boxing day of this Christmas. She and my daughter get together a couple of days prior to Christmas day and wrap presents. I would help, but I have always found it difficult and now, with PD, it is impossible. Even though the drugs hide the tremor, when I am under stress, it reappears. And stressful it is, trying to wrap a present without using up all of the scotch tape. Why is it that men are unable to do what women find so easy and enjoyable?

I am not a Scrooge....Christmas does become the most wonderful time of the year, on Christmas day when all our children and their children come to our house to open presents. Even the youngest, 17 months, has some interest in Santa, so there is always much excitement. Christmas really is a time for children and thank goodness for grandchildren.

This Christmas, I am thinking about being mortal and how fast the past 36 Christmases have gone by since my oldest boy was born. And now, I have PD to intrude into my thoughts, adding to my joy. What will the next 20 years be like? Will I deteriorate quickly? Will the drugs keep working? Will I ever have to have deep brain stimulation as a last resort? and many more uncertainties. Fortunately, they are fleeting intrusions and I mostly don't think of the future and I live life as I always have, day-to-day and free of the shadow of PD.

That being said, Santa, all I want for Christmas is a cure or a life with dignity.

I have to go now. There is yet another Christmas TV special for me to avoid. Where is my copy of Silence of the Lambs?

Merry Christmas.

Monday 17 December 2012

That silly scent Willy sent Millicent

A metaphor: a figure of speech in which a term or phrase is applied to something to which it is not literally applicable in order to suggest a resemblance.

In other words,some things are not what they seem.

Sunday morning, at 5 AM, I went for my usual walk. At that time of the morning, at this time of year, it is very dark. I turn a corner and sort of see a couple of figures coming toward me (I didn't wear my glasses, ergo, "sort of see"). I continued toward them. I have no fear. I am not even sure they are there. I see things in the shadows when I am not wearing my glasses. The specters kept coming and I, quite stupidly, continued toward them. Still no fear. We live in a very good neighbourhood. The only exciting law-breakers here are mothers picking their children up from school and getting a ticket for blocking the fire hydrant across the road from me.

But it is 5 AM; who goes out at 5AM? Usually only me and the dog walkers who do not want anyone to see their dogs doing their business without the owner picking it up.

Oh yes, I forgot, and bad guys!

When I was about a block away I could see they were two rather large fellows. I debated avoiding them by going down a back lane. For some reason, I did not. We continued our mutual mission. They were quite imposing. I was getting nervous and fear was taking over. I wondered if I should step into the snow bank to let them pass, but no, I kept going straight. We were only a few steps away from each other, when the larger of the two stepped behind the smaller, to let me pass, and both of them said, quite gently, "Good Morning".

Two men in their early twenties (if I had to guess). I think they must have had a rockin' good time Saturday evening and were just going home.

Some things are just not what they seem.

End metaphor.

Hallucinations still startle me. It is usually early in the morning, after my walk, when I am alone and concentrating on the crossword. Out of the corner of an eye, I see things. For example, the other day I saw a small boy playing with cards on the side table. Now usually, I don't bother looking at them and the illusions do not upset me, but this one was so real, I actually turned to see......nothing. I think they must be caused by the medication, or maybe a result of the laser eye surgery I underwent some time ago.

There doesn't seem to be any boundary between reality and hallucination these days. I almost look forward to them.

Thursday 13 December 2012

All Life is an Experiment

I think that old age must arrive suddenly and unexpectedly. I have always held on to the notion that old age is always 10 years beyond my age. But then life reminds you of your mortality and your expiry date.

We had a death in the family. My mother-in-law. But, shed no tears; she was 98 years old, almost blind and confined to a wheelchair that she could not move by herself. So, she sat in the same place until somebody could move her. I think she must have welcomed death. Five years ago, she could operate an electric wheelchair joystick like a professional gamer but then she got shipwrecked and life only became a nuisance.

I was thinking about life and death on my walk this morning. I had this mental picture of my oldest child. He is about 4 years old and we are fishing. His eyes are big and his mouth wide open. He is staring at the minnow I am threading onto the hook. He thinks I have caught a fish. Now 32 years later, he is a success as a man, husband and father and I am wondering where the time went. I think to myself, you have only 15 to 20 years left, if you're lucky. I have never been afraid of death, only of not living but now, I am afraid of an undignified death. I don't want to end up like Ali, a shell of his former self. Not only can he not float like a butterfly, he can no longer walk. That thought makes me walk faster and further because exercise is the only known thing that can slow down the PD process. I am training for my date with death. At the moment, I think I am winning and things are looking up.

This optimism brings to mind a poem by Langston Hughes and when I arrive home, I look it up on the internet:

“Life is for the living.
Death is for the dead.
Let life be like music.
And death a note unsaid.

My mother-in-law died peacefully, asleep, sitting in her wheelchair. What a great way to go into the next stage of her journey!

Enough of this. Some good news. Today, I had a feeling that I was going to start the walk that causes me to fall down so I tried the marching tip I was given and, it worked. Instead of leaning forward, I stood straight and increased my stride and after 20 yards or so, I was walking normally - so that little deficiency has been defeated. If you are a PWP, try this technique to keep from falling while walking.

People are still reading. Thank you. Here are the statistics for last week:

  1. Canada 59
  2. Spain 11
  3. United Kingdom 7
  4. United States 7
  5. Poland 2
  6. Germany 1
  7. Egypt 1
  8. Ukraine 1
The total from the commencement of this blog is 8,568!

Tuesday 4 December 2012

If you worried about falling off the bike, you'd never get on.

The title is a quote from Lance Armstrong, the drug induced cycling mavin and the winner of 7 consecutive Tours de France. He must have been off the juice at the time he said it because it is quite sensible and I have taken it to heart. If I worried about walking, I would never walk. However, I have kept walking since my fall, without incident and exercise is the only known method that might slow the progression of PD so I have to do it. It has become an obsession and I can't imagine quitting.

I finally got an explanation of the phenomena. For awhile there, I thought it must have been an attack of hypochondria, but yesterday, after seeing the dermatologist, I went to my GP and in passing, I mentioned the weird walk and demonic jog that resulted in a fall.

"That is a symptom of PD,"he said. "PD causes your body to try to catch up with your center of gravity, so you bend forward and have to walk faster and faster until you fall".

OK, why didn't my 2 neurologists tell me that? In fact, one of them told me that PD doesn't present like that and I should see my family doctor. He had me scared that something else might be present in addition to the PD.

Anyway, I went on a PD forum and got the following advice:

  1. Keep saying in your mind 1-2,1-2. Or a stick might help you.
  2. Walk like you are marching.
  3. Stop walking, turn around and face the direction you want go in, then make the first step a big step.
  4. count while walking

I don't know where I would be without the internet. Just knowing other people around the world who have PD, brings me some solace and the fact I can get advice from PWP who have been there, done that, is invaluable.

"The Internet has always been, and always will be, a magic box." Marc Andreesson, a founder of Netscape.

Life would be so much easier if God would just give us the source code!

Monday 3 December 2012

Happiness is health and a short memory.

It's been a few days since my disastrous walk and fall. Since then I have walked 3 times, 2 of which have been in the 2.5 mile range, without incident. The fall will now fade from my memory until the next time.

Today, I am feeling good. The pills are working and I had a good evening. Yesterday was tree day. All my children and their children came over to raise our Christmas tree. The two little boys were out of their minds with excitement and with 22 days left before the big day, I pity their parents. On the other hand, as their grandfather, I loved it. As I told my daughter, "diaper is just repaid backwards". Her "ha, ha" response was satisfying. She has a girl and she doesn't quite understand what is waiting for her when her daughter reaches her teens. As Shakespeare said (I think, maybe someone else) "I wish there were no age twixt twelve and one and twenty".

I just got back from the dermatologist who went a little crazy with the liquid nitrogen, attacking every age spot or sun damaged spot from the waist up. I now look like a walking wounded, burned in several places. I can put up with it a few days, he is only looking out for me but he needn't have pronounced that he'd better spray some spots on the top of my head because "your hair is obviously thinning."

He doesn't realize that I am not balding, I am just a little taller than my hair so my scalp peeks through.