Hello Darkness, my old fiend

What a difference an "r" makes! Replace the "r" in "fiend"and I could be one or the other.

Not so, my dark companion, PD.  It's just a slow moving fiend, intent on taking control of my body.  I am doing everything I can to slow it down, but like the zombies in a movie, it is relentless in its purpose.

For 7 years, it has been a wash, but now, I feel it beginning to make intrusions into my defences and into my social life (which never has been that good).

A few months ago I was honoured by students I had taught in elementary school about 40 years ago.  They are now in their 50's and they invited me to attend their high school reunion.  It was wonderful to see them again.  I was the centre of attention for many of those present.*  A few days previous to the reunion, one special lady emailed me to suggest we get together at the reunion and find time to chat and then she added, "But you will probably be like a rock star."

She was right.  It felt great!

I spoke to many of my ex-students, but then PD raised its ugly head to try to ruin my evening.  My mouth dried up, I stammered and my voice started to disappear.  I looked stupid and weak.  I know they knew of my battle with Parkinson's  and would cut me some slack but my embarrassment was beginning to take over and so, after 2 or 3 hours, I left, weaving down the dark pathways.  I must have looked drunk, though I had only had part of a glass of water.

This battle with PD is wearing me down.

Will no one rid of this meddlesome  curse?!!!


        * only about half of the people there were former students.

Where ignorant armies clash by night.

 From the MJF Foundation

                 Speech problems are common in patients with Parkinson's disease. At an early stage, 
                 patients may find it hard to project their voice. As the disease progresses, patients 
                 start to have difficulty starting their speech even though they know the words they 
                 want to say. They experience freezing of the jaw, tongue and lips. When they eventually
                 get their speech started, they have a hard time moving it forward. They keep on saying 
                 the same words or phrases over and over again while their voice gets softer and softer. 
                 Many words also run together or are slurred.

Sound familiar?  Happens to me all the time. Longfellow once noted that the human voice is the organ of the soul.  Not mine, unless I have no soul, which is not the case.   My voice is my inner alien, a wanton curse, a thundering tragedy.  You get the picture?  I am not at all fond of this symptom and I could do without it.  But I must feel alive, so I need to use my unwilling tongue  and sound like a blithering idiot while trying make myself heard.   Sometimes my voice will get weaker and weaker until it disappears completely in the middle of a sentence and I stand there with my mouth agape while my listeners watch my struggle, feeling embarrassed for me in my war with my voice.

Unscramble the word "silent" and you will discover my philosophy going forward "listen".  Yes folks I intend to do more "listening" than contributing.  My defences, if they ever existed, are down and I an vulnerable.  "Listening" is all I can offer,

My voice and I are here as on a darkling plain and I have nothing clever to say or write.  You'll find me on the stage, stage right; waiting for the fey limelight.  Forgive me friend, I've lost that fight.

DO I HAVE MILD COGNITIVE IMPAREMENT

We all worry about becoming cognitively impaired.  The following can inform you or scare the s**t out of you.  It is from the MJF Foundation.  I was not knockout by it because the only symptom I seem to have is problems with word finding when I speak; ergo, I have mild impairment.  Where are you on the scale from mild impairment to severe?

 

Cognitive impairment, disturbance of memory, thinking and/or language abilities, is a non-motor symptom that can be associated with Parkinson's. Cognitive disturbances can arise at any time in the course of Parkinson's disease (PD) and vary widely in severity. Some people don't experience any problems; others have subtle changes only detectable on formal testing. Still others have issues they describe as mild or somewhat annoying, and some will go through more significant changes that interfere with the ability to perform daily activities.

Cognitive impairment in PD primarily impacts "executive function," which can lead to difficulty with 

*  Multitasking

*  Planning and organizing

*  Problem solving

* Attention, thought processing and word finding also are commonly affected.

Treating speech disorders in patients with Parkinson's disease using altered auditory feedback

Clinical Discovery Awards, 2006

Speech problems are common in patients with Parkinson's disease. At an early stage, patients may find it hard to project their voice. As the disease progresses, patients start to have difficulty starting their speech even though they know the words they want to say. They experience freezing of the jaw, tongue and lips. When they eventually get their speech started, they have a hard time moving it forward. They keep on saying the same words or phrases over and over again while their voice gets softer and softer. Many words also run together or are slurred.

These symptoms make patients' speech hard to understand and directly affect their care and quality of life. Unfortunately, these symptoms have not responded to medication or surgery as other non-speech motor symptoms do. In fact, some surgical treatments could even make speech worse while other motor function such as walking improves. Traditional behavior therapy for these speech symptoms has not been successful either because these symptoms cannot be controlled voluntarily.

Recently, we have tested an in-the-ear therapeutic device that provides altered auditory feedback in eight patients with PD and moderate to severe speech impairment. The device is housed in a hearing aid shell, and it is programmable. Patients wore the device in one ear and heard their own speech through it after a short time delay and with a shift in pitch while they spoke. The delay ranged from 50-220 ms and their pitch shifted up or down from 500-2,000 Hz. For each patient, a specific combination of the time-delay and pitch-shift was found.

Our preliminary results were encouraging. Seven of the eight PD patients made significant improvement in their speech, and they were much easier to understand when they used the device.

The current project will systematically examine the therapeutic effect of altered auditory feedback provided by the in-the-ear device on the speech impairments in PD. We will study 20 patients with PD and moderate to severe speech impairment over a one-year period while they use the device routinely to provide the altered auditory feedback as they speak. Both short-term and long-term benefits of altered auditory feedback on speech will be monitored.

Based on the results of our preliminary study, we expect the patients' speech will improve. We hypothesize that the use of altered auditory feedback provides salient sensory information that triggers ancillary loops to allow PD patients to initiate their speech more easily and to maintain a constant speaking rate, thus making their speech more intelligible. This project has the potential to significantly impact the quality of life for patients with PD. When PD patients can express their wants and needs and can communicate effectively with their families, caretakers and physicians, their quality of life improves.

Ring - a - ling - a - Lario What am I to do?

Those vicious PD dreams, mentioned in earlier posts, haunt and taunt me quite frequently now. Two in the past 2 days! I have forgotten the first one but I woke up with a soundless scream and yesterday's dreams became significant when I punched the side table. It seems that I and four former students, 2 girls and 2 boys decided to buy up all the land in Manitoba, north of The Pas. For income tax reasons, we put the land in the name of one of the boys. When oil was discovered, the title owning boy refused to give us any of the mineral royalties that had accumulated to the lofty sum of $100.00 (apparently we had no business sense!). Anyway, there was constant arguing and when the titleholder hit me, I returned with a fury; hence my fight with the side table. If a tussle with a table doesn't scare you, you are a freak of nature.

What do these neurosis inducing, but virtually real, dreams mean?

I googled and the net is awash with the meaning of dreams. I chose articles from The Huffington Post. I assume accuracy. After all, it is the Huffington Post. Sadly, none helped. They were interesting, but the ones I read dealt only marginally with virtual realty nightmares. These dreams, caused by PD and/or PD medicine can be a touch scary and are dangerous. What if I hit my wife rather than the side table?

I found the following concerning PD dreams:

*

Studies estimate anywhere between 15 and 85 per cent of Parkinson’s patients also suffer from the condition. Prashanth Reddy, consultant in movement disorders at King’s College Hospital in London, explains: ‘A normal sleep cycle lasts between 90 minutes and two hours.

At the end of each cycle, you enter a phase of sleep where you dream, which lasts between 15 minutes and one hour.

‘In most people in that state, muscle tone is lost and there’s a biological switch that disconnects the brain from the body so we don’t act out our dreams. But in people with RBD, they switch malfunctions, and they tend to act out their dreams.

‘For example, if someone dreams they are being chased, they may try to run away and jump out of bed.

'Often, when they wake up, they can match up the recollection of the dream with the physical reaction they’ve had.

It’s one of several sleep problems that can occur with Parkinson’s.

So, what do my PD dreams men? I think "nothing". They are simply a symptom of my condition and I cannot do anything about them. If I ever hit my wife under the influence of PD, I will be devastated.

Besides, she might hit me back and she lifts weights for exercise!

*Read more: http://www.dailymail.co.uk/health/article-2782719/Parkinson-s-The-bad-dreams-warning-sign.html#ixzz4hBYjFfbH Follow us: @MailOnline on Twitter | DailyMail on Facebook

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Another rim shot.

"It is a curious fact that people are never so trivial as when they take themselves seriously." (Oscar Wilde)

I don't know anything about humour and Parkinson's, other than what I find on the internet. Initially I thought I was using my blog as a method of reaching the masses. I was preaching because I thought I was knowledgeable and wanted give my PWP a little comfort. But, when in a moment of clarity, I came to the conclusion that anything I write about is only valuable to me.

I have PD. There is no denying that. I wish I didn't have it. I hope for a cure. I am confident I will be dead before PD consumes me completely (which is small comfort). I try not to take myself seriously when I write. There is nothing funny about PD!! Instead, I try to lighten our load with the use humour when dispensing my somewhat limited knowledge. I describe my symptoms of PD to tell the world of my diagnosis, rather than keeping it a secret as some PWP recommend. However, I mean no offence to those who are experiencing the shadow of the "disease". I hope readers of this blog will understand that I am using whatever sense of humour I have, as a weapon in my fight against the darkness of parkinson's.

But, enough talk about humour.I want to know everything about PD. Why? So I can estimate my progress. I have a tendency toward self-diagnosis so I need info. When I talk to my current neurologist.....well, I get very little from him and my family doctor is a little better, slightly informative. But the internet! Now theres a source of information. I want to know to what stage my PD has advanced. Here I go again into self-diagnosis. As you see, my neuro is not a useful source..

The Play: Finding information from the doctors. Specifically , at what stage is the patient?

The scene: In a mid size city, in a doctor's office. The doctor sits at his desk, glancing occasionally at the ever-present large screen computer.

He speaks. How are you today.

The patient returns the smile and says softly: I am OK

Doctor: That's good. Stand up. and he checks me out. As we exchange pleasantries, he speaks in a manner as to imply the session is finished. Looking good.

He sits down and he writes out a prescription for stronger levodopa, all the while looking at his computer. He types something, his fingers moving furiously and only the clicking of the keys break the silence that has fallen upon them. He finishes, rolls his chair back and looks at the screen for a few seconds. OK, looking fairly good. See me in 6 months. Have a good day.

Patient leaves the office and is muttering under his breath as he goes to the front desk. That's it? Have a good day?..... No thanks, I've made other plans..... What about stages? Tell me. I know no more than I did yesterday. Why didn't I outright as about the stages. I need to know where I am in the catalogue of woes.

Patient is at home. Patient knows why he didn't ask. Stage fright, that's why.Goes to the computer, finds WebMD to look at the stage descriptions and sees himself, in black and white

Stage one: During this initial phase of the disease, a person usually experiences mild symptoms, such as tremors or shaking in a limb. During this stage, friends and family can usually detect changes caused by Parkinson's, such as poor posture, loss of balance, and abnormal facial expressions.

Stage two: In the second stage of Parkinson's disease, the person's symptoms are bilateral, affecting both limbs and both sides of the body. The person usually encounters problems walking or maintaining balance, and the inability to complete normal physical tasks becomes more apparent.

Patient sighs and mumbles, that's better, I will sleep tonight, He is at the end of stage one or the early two. Great. Thanks WebMD. He has an answer. Patient leaves the room with his right hand trembling at the victory.

I guess you know the patient was me! The doctor is not quite as I have described him, but not far off. Ergo, I submit to the internet as the purveyor of the truth, I diagnose myself as being at the end of stage one or early stage two.

Well, that's a relief! Now I will sleep better tonight....except I don't....because, you know, some of my symptoms can be found in stage three.

I fall into a restless sleep. In the darkness of my room, my fear of the future has been neutered for now. At this moment, I really don't give a s--t.

Sometimes we take action. Sometimes we take pills.

I have always wondered if I would suffer the "wearing off" effect and now seven years post diagnosis I am experiencing wearing off, thanks to 6 years of levodopa therapy. Wearing off is the term used to describe the time when the beneficial effects of a dose of levodopa diminish before the next dose is due. Symptoms of Parkinson's that have been depressed by the levodopa begin to return, for me, about an hour before my next dose.

This wearing off phenomenon is the result of the further loss of dopamine producing cells causing the dopamine levels in the brain to decline, making it harder for each dose of levodopa to suppress symptoms.

I take 4 doses of L-dopa and mirapex daily. A graph of the effects of the medication would show a bell curve, sort of. I take the pill and it takes about a half to one hour for its effects to become fully effective, followed by 2 - 3 hours of few, or no symptoms, then one-half to one hour of wearing off when they begin to re-emerge. I take advantage of the approximately 2 - 3 hours of grace; although, if I get involved in physical labor, the medication will wear off sooner.

PD is a designer problem. No two victims are consumed by it at the same rate. I have read of victims experiencing wearing off after 2 - 3 years, or the medication can be effective for 5 or more years.

In my case, the wearing off effect started not long ago but appears to be subject to the amount of rest I get and whether or not I have performed physical work. So far, the pill cycle of "starting to be effective - topping off - wearing off" doesn't affect me too radically. I know it will get worse, but I can take anything PD can throw at me (knock on wood).

Some people delay taking medication to avoid the cycle, but, even though I feel my PD timetable is humming along, I wouldn't change anything. I chose to start medication early, so I could enjoy those years when I was relatively young and I would make that choice again in a heartbeat.

Seriously though, I have to take my 3 o'clock dose now. It has taken me twice the amount of time as is usual to type these few paragraphs. Why? because I am in a wearing off period and my fingers have a life all their own. At rest, they will type random letters over and over and I have to go back to erase them or repair the damage to the words into which they have inserted a letter. It's a drag but as I said there is nothing PD can hand me that I can't deal with......yet.

Some times I think God writes humorous plays which nobody finds funny. With that thought, I am leaving the desktop to take another pill.