Just call me ROCKY

There are certain things a PwP can no longer achieve. For example, pickup sticks. Can you imagine trying to pick up the top stick? Why, even you tremorless folks would have difficulties and for tremor dominant, the game would be a nightmare. The world can be a bully when a game of pickup sticks is your greatest nightmare.

Fear not for we have a weapon to aid our cause.

Boxing!

I joined Rock Steady Boxing and had my first workout today. It was not too difficult and it was enjoyable. I was interested to see the various stages of parkinson victims and I count myself lucky. My symptoms were not apparent and there was quite a range of symptoms in the class, I am guessing stages 1 to 5, all very nice people.

The class starts with a warmup, followed by boxing maneuvers and ends with strength exercises. Unfortunately, there is no body contact; I'd like to have that experience.

In my youth, I boxed, well brawled, twice. I was knocked out cold in my first bout. It took place in my parents' basement. My father had been a Canadian army boxing champ and had 2 sets of gloves. We children used to use them for.....what else? Hitting each other. We called it "boxing".

One day, a rather large friend asked if he could take me on and yada, yada, yada, I got knocked out. My moment of glory occurred at the high school when a brash classmate wanted a piece of me. We gathered in the gym, put on the gloves and had at it. Well, yada, yada, yada, I feinted low; he dropped his gloves and I hit him square on the face and down he went. He was momentarily out cold. They were unsupervised, no training fights, using boxing gloves. These were ghost matches held in the absence of parents and teachers.

The literature hints that too many concussions may be a cause of PD. Well, in addition to "boxing", I've had a few blows to the head playing hockey and football, so I may have doomed myself to PDdom.

Anyway, if Rock Steady boxing can slow down the progress of PD, I am there with bells on. Here is a good description of the program and the effects on PD:

This full-body workout, recently highlighted in The Washington Post, tests balance, agility and hand-eye coordination, all of which can be affected by Parkinson's. It also can build muscle strength, potentially help speech (some say grunting or yelling while punching aids with vocal projection) and even offer an outlet for frustration toward symptoms or disease. Plus, Rock Steady promotes comradery and community, reminding participants that they're all “fighting together against Parkinson's.*

*(written by Kat McCormick, Foxfeed Blog, May 23, 2016)

Rock Steady has a fight song:

I don't know, but I've been told

This PD is getting old
Yada, Yada, Yada, something, something, I forget.
The next line ends with "beat the crap out of PD"

I will let you know the last two lines when I have learned them.

It will be a long, hard fight, but I will be in it for the duration (I have to be. I have no choice.)

OUR FIGHT SONG - Part two (Anxiety)

1.       Got PD?  Feeling worried or anxious about things in general?  No wonder, you  may have PD related anxiety, as do 20 - 45% of the members of the tribe.

2.      Anxiety is a symptom of PD.  It is not a general feeling of concern for your future and nor is it concern aimed at PD; rather, it is a constant malaise, of being overwhelmed or being afraid all the time.  This condition may be the reason you can't get to sleep at night.  Take drugs!  Zopoclone is a nice little number that can put your brain to bed.

3.     Anxiety may manifest itself as a panic attack.  Racing heartbeat, need to gulp in air, wet with sweat, dizzy.  It is alarming, not only for the patient, but for the people around him/her.  If you happen upon a person displaying all the signs of a panic attack, try talking him/her down.  I speak from experience, having calmed a young person down just by talking and explaining the workings of a panic attack.  If you are the patient, tell yourself to remain calm.  You know what is happening, try to make it better.

4.      PD anxiety can strike at any time during your illness so be prepared.   Such anxiety may cause your symptoms to surface and become worse.  Your tremor might break out of its drug-constructed cage and ruin your day.  Have you ever tried eating peas or rice when your hand(s) are in full tremor?  It is not a pretty sight.

         Oh, and don't think you non-tremor types are not subject to this reaction.  You might become stiffer than you were the day before.

         You can soften the blow by taking charge.

5.     Do not think of yourself as an invalid.  You might ignite a self-fulfilling prophecy.  Cheer up, the future will be better than the one created in your mind.  Your dreams are still alive and are waiting for you to set them free.


                    "Let us be of good cheer, 
                    remembering that the misfortunes 
                    hardest to bear are 
                    those which never come."
        
                                                ( Amy Lowell)

THIS IS MY FIGHT SONG (Part one)

Before heading into battle, you would be wise to evaluate your own strengths and your enemies' weaknesses.  Learn from the vets, those people who have lived with PD for a few years.  I can't call myself a vet yet, but I am nonetheless going to offer a tad of knowledge that might be of help.

It is true that you have choices

1.     There are no natural remedies.  I know because I have tried them all.  Doubters argue that I didn't  give them enough time to become effective; that they used them and "TA DA" no parkinson's . I've got news for them, if swallowing a caffeine pill for a year cures them, they never had PD in the first place.

2.      Don't dwell on your situation.  Surround yourself with positive people and be positive in your own outlook.

3.      It is OK  to google your symptoms but avoid anything to do with Multi System Atrophy or Lewy Body dementia.  It is OK to know what they are, but until your diagnosis tells you otherwise,  you just have PD.  In other words, if you hear the sound of hoof beats, think "horses" not "zebras".

4.       For most PWP, when they were first diagnosed, they fell apart inside.  The future was dark and scary.  Well, I am here to tell you that PD is not a death sentence; that I have been living a 95% normal life since late December 2010; that researchers are making great advances in the treatment and for a cure of all degenerative brain diseases.  The future is bright, but still a little scary.

5.       Get up off the couch and get active.  Exercise seems to be the only weapon that has any effect on PD.  Exercise and exercise again.  Currently there is no cure, but we can slow down our dark shadow with exercise.

6.       Start a blog.  Writing is therapeutic.  It's a place where you can purge all negative emotions - a sort of personal catharsis, if you will.  There are PWP out there who will read it.  I write because I like writing.  I didn't start blogging to purge my emotions and cleanse my soul.   I started writing because I enjoy it.  I found I could laugh at myself; although, if you look carefully, you might find the occasional intrusion of pain beneath the laughter.  Pain or not, try writing.  It is a release.

As for me, I start boxing next Thursday.  I might have to get a cigar and start asking "Howyou doin'?" I think I will wear lots of neck and finger bling.  No chance!  This boxing is strictly open for PWP.  I am looking forward to meeting some of them.  I didn't know there were about 6,000 of us in the province, or did he say 1,000?

Whatever.

I plan on being the next Rocky Balboa, but will probably end up channeling that Marlon Brando character in On the Waterfront  "I could've been a contender.  I could've been someone."



“In life and in a boxing ring, the defeat is not declared when you fall down. It is declared only when you refuse to get up” 

― Manoj Arora, Dream On

Slow down. You're movin' too fast. Statistics.

Visits are slowing down. Only 19 page views today. The grand total to date is 82,052. Here is breakdown for this past week.


                               Mon Tues Wed Thur Fri Sat Sun     Total    Avg

Pageloads                 18    27    23     35   12   15  10       140      20

Unique Visits             6    22    17      21    9   12    9       106      15

First Time Visits        5    12      5        4    4   1      1         32        5

Returning Visits       11   10     12      17    5  11     8         74      11


Must be the summer time or, I am boring you. My next entry will be a blockbuster - My journey into Rock Steady Boxing for PWP.   See you in a couple of days.

Stats are from StatCounter.com

Sed ipse spiritus postulat pro nobis, gemitibus inenarrabilibus*

All right, let's talk about that nasty secret that must pop into our minds on those particularly bad days, Dementia with Lewy Bodies. Now you understand, I have no personal connection with this condition and it is my sincere vow to avoid it altogether.(here the writer touches wood)

I have gleaned the following from the literature:

• Lewy bodies are abnormal aggregates of protein that develop in Parkinson's disease (PD), leading to Lewy body dementia. The protein aggregates are identified under the microscope when histology is performed on the brain.
• Dementia with Lewy Bodies (DLB)accounts for 10 -15% of all dementia.
• DLB is often mistaken for alzheimer's
• symptoms include a progressive decline in cognitive abilities, varying levels of attention and alertness, persistent hallucinations and symptoms of PD

Sounds a lot like alzheimer's, doesn't it. I had a father who died with alzheimer's. He went from a proud man, the OC of the 3rd RCHA in the Canadian army, to speaking in full sentences that contained no recognizable words. It was a language all his own. In one of his lucid moments he said to me, "I have gone to hell". And indeed he had. But I don't want to talk about this. It is too depressing. Rather. Let's have some good news for a change.

From The Independent:

Research could result in new drugs with the 'potential to slow or stop the condition in its tracks, which no treatment for Parkinson’s can currently do

IAN JOHNSTON SCIENCE CORRESPONDENT @montaukian
Thursday 23 June 2016 16:29 BST

Scientists believe they have discovered that Parkinson’s disease is caused in a different way than previously thought and also a possible new way of treating the severely debilitating condition.

Charity Parkinson's UK said the research could lead to a new drug that could "slow or stop the condition in its tracks". It was believed Parkinson’s occurs when mitochondria – which supply power to cells – malfunctioned, causing brain cells that produce the key hormone dopamine to die.

But Leicester University researchers found most of the problem related to another part of the cell, called the endoplasmic reticulum (ER), they reported in the journal Cell Death and Disease.

In a study with fruit flies that had been genetically modified to develop Parkinson’s, the scientists managed to at least partially correct the problem so that the number of brain cells increased and the flies’ muscles remained healthy.

One of the researchers, Dr Miguel Martins, said: “This research challenges the current held belief the Parkinson’s disease is a result of malfunctioning mitochondria.

“By identifying and preventing ER stress in a model of the disease it was possible for us to prevent neurodegeneration.

“While the finding so far only applies to fruit flies, we believe further research could find that a similar intervention in people might help treat certain forms of Parkinson’s.”

Parkinson’s, which affects about 127,000 people in the UK, causes shaking, memory and speech problems, anxiety and depression among other symptoms.

The ER’s role is to fold vital proteins used by a cell. If it misfolds the proteins, they can be dangerous so the cell will halt production. This is designed to protect the cell, but without the proteins it will eventually die.

The researchers believe the misfolding is caused when too much of the ER is attached to the mitochondria by a substance called mitofusin.

In a statement, Leicester University said: “The scientists were able to prevent neurodegeneration in mutant flies not only by reducing mitofusin, but also with chemicals that block the effects of ER stress.”

Claire Bale, head of research communications at Parkinson’s UK, said: “This research provides new insights into the significance of the role of the endoplasmic reticulum (ER) and the potential order of events that happens when a brain cell starts to malfunction and die.

“Identifying a way to prevent losing precious dopamine-producing cells in a fly model could translate to new and better treatments for Parkinson’s.

“This would have the potential to slow or stop the condition in its tracks, which no treatment for Parkinson’s can currently do.”

Interesting, n'est ce pas? Stop PD and you stop DLB.

But the same Spirit intercedes incessantly for us, with inexpressible groans

Nullum magnum ingenium est sine mixtura dementiae*

I haven't written in some time, not because I had nothing to say but because I had nothing to say that was even a tad interesting.  It is also time consuming and I have it on good authority that an entry that takes 2 hours (really) to write, takes only 2 minutes to read so I have to fill your 2 minutes with something worth reading.

Today's topic concerns (dare I say it?) DEMENTIA.

We all know that parkinson's is caused by the loss of dopamine producing cells in the brain, thus the condition is labeled a "degenerative brain disorder".  What ugly words!  Sadly true, but nevertheless ugly.  They shout out to people, "this guy has brain problems.  I think he may be crazy!"  Sometimes, if you suffer with word finding problems, one of many symptoms of PD, you might sound crazy or worse, stupid.  I have written about my problems when trying to speak intelligently, but I can safely say I am neither crazy nor stupid.

PD is not restricted to body movements, sometimes it affects the intellect.  We all fear dementia brought on by PD.  It seems to be relentless in its randomness but, fortunately it is estimated that only 20% of us will be the victims of that condition.

Although PD is a designer disease, with symptoms affecting most PWP differently, we are aware that cognitive processes (e.g. thinking, remembering, reasoning, etc) may be affected to some degree in all of us, it is only when PD negatively affects our ability to carry out  every day activities that we are cursed with the label "dementia".

Dementia develops slowly, rearing its ugly head 10 - 15 years post diagnosis.  Here I am coming up to 7 years after the doctor announced "early stage parkinson's"  and I know that if I am speaking, I have mild cognitive impairment; but, that is easily cured.  I just keep silent. Sometimes I appear to be stupid when the situation I am in involves conversation, especially in social situations.  My brain becomes overloaded with noise and I can't even remember my house address.  When I exit that situation and my brain settles down, everything returns to normal.

Thank goodness my thinking remains strong when I write.  It is good to know I can still think critically and with some degree of creativity, so I do not spend every minute worrying about my future, just the occasional doubt, that's all.

And don't get me going about Lewy Body Dementia.  I want to be able to sleep tonight.


* There is no great genius without a mixture of madness