Feelin' Groovy

I knew it! I knew it all along! Parkinson's is too complex to be pigeonholed into one of the 5 stages of the Hoehn and Yahr staging chart. I didn't fit into any stage completely. I thought my PD was relatively benign but Hoehn and Yahr had me believing I was deep into stage 3. I am not.

The Davis Phinney Foundation divides the progress of PD into 3 stages:

EARLY STAGE

• One side of the body affected (so far that is me but occasionally I feel it might be making forays into my left side.
• decreased stride or dragging the feet (no dragging but decreased stride for me)
• decreased arm swing (nope)
• scuffling of toes (yup)
• change in leg co-ordination when running or cycling (yup - no longer do those)
• sense of muscle fatigue (not sure. I feel fine right now)
• difficulty completing repetitive movements (not that I have noticed)
• trouble with hand coordination (nope)
• reduced range of motion in shoulders, shoulder pain (got both in spades)
• mask-like face (don't think so)
• decreased or small handwriting (Oh boy! have I ever!)

MID STAGE

• symptoms on both sides (not yet)
• Soft speech (Oh, Oh)
• mild swallowing problems (sometimes)
• flex or bent posture (have to admit, that's me)
• motor fluctuations and dyskinesia (nope)

LATE STAGE

• balance problems (sometimes)
• increased shuffle, freezing of gait & festination (all three but that was 4 years ago - never again after that)
• significant speech and swallowing problems (speech yes, swallowing no)
• drooling (no)
• rigidity in the neck (yup)

Well that clears things up! I am either in the first, second or third stage, (or all three)

Right now, I feel great.

A little introspection

I wrote the first four stanzas of this poem when I caught a glimpse of depression.  That was near the beginning of June.  I suffered bad news and to boot, my rotator cuff was damaged.  I decided, after missing 2 weeks of boxing, that I should go despite my injury.  The people at boxing are either victims of PD or volunteers.  The victims have accepted their fate but are uniformly optimistic.  To say they are uplifting is an understatement.  I come away from a class feeling good.  The class is my sanctuary.  After today's class, I wrote the last verse which I think gives hope for a future.  While admitting the inevitable outcome, I still have a vision of a cure.  I have to be ready.

If you have been following this blog, you will know I believe the brakes will be put on PD and the fitter the victim, the more that victim is likely to benefit .  Just- exercise - exercise - exercise.

Changes

sit over here
come as close as you dare
we'll wallow in our painful review
we'll catalog our woes
into "isn't's" and "no's"
And qualify life's many  changes

 You read the review
Got a question or two
Don't ask if you can't stand mirages
they settle like leaves
on the green grass of truth
that comes with the death of those changes

But in moments of madness
alone in the night
you dream of an answer or two
then they fade with the dawn
and you know without doubt
You've got to create your own changes

Sadly forlorn
you accept there's no cure
and your god is just feckless and late
no time to repent
you need more than that
So you stand on a headstone and wait
   
you are waiting there still
but the night's drawing near
and you doubt that prayer is the answer
no cure and so what
hold on to the fact
 only you can engineer changes

Oh, the drama of it all!

These days I know I really do have PD and it is having its way with me. I guess I am mid stage 3. I have encountered or am encountering the following:

1. Stiffness. I walk my granddaughter to school every day but today I only made it halfway. My legs were so stiff (how stiff were they?) They were so stiff I was walking like an aging Frankenstein. And, of course, there was pain that revealed itself whenever I reached down for her little hand.
2. Loss of Stability. The last couple of weeks, I would have fallen several times were it not for the presence of a wall or tree to stumble against and keep me upright.

Now I wear the cloak of uncertainty. If I stand up, will I trip the light fandango or, will I fall without any foreplay? I just don't know. I only know that the persistence of PD in its rush to claim control, is getting me down.....just a little bit mind you. I intend to keep on fighting. Defeat is not an option.
I can see your eyes well up with pity. "Poor fool," you mutter. It is pre-ordained that PD will win the war. Why fight it. Just quit and admit defeat."
Sorry, no can do. My plan is to flood its path with mud with the viscosity of molasses. I know I can't win, but I can still slow it down After all, the sun will come up tomorrow.

My cognitive impairment

Why do I stumble over words when speaking, especially when asked a question. I know the answer and I start to speak when suddenly my mind goes blank. Why? Because I am mildly cognitively impaired.

Whoa! Hold on there. Does that mean (whisper)....you are losing your mind?

Probably not but, but let's break it down.

What does "Cognitive" mean

According to a paper written by Jennifer G. Goldman cognition is a general term that refers to the mental abilities that we use to process information and apply knowledge. In the study of cognition, academics talk about "cognitive domains" which reflect different types of cognitive processes and describes each process. They are

1. Attention and working memory
2. executive function
3. memory
4. Language
5. Visuospatial function

You can, and should read the article. The only ability I am interested in is number 4. language.

Doctor Goldman says this:

Language abilities include naming objects, generating words, comprehension, and verbal concepts. The most common language problem in Parkinson’s Disease is finding the “right” words. People with Parkinson’s Disease also tend to speak less overall (in addition to softer voice) and use simpler speech. This can be an area of frustration for both the patient and caregiver because verbal communication is such an important part of human behavior.

She describes me to a "T"

What to do? What to do?

Personally, I just keep quiet and when forced to talk, I allow myself to stumble and sound stupid but I usually get my opinion heard.

So am I going to hell?

When my father sank into the depths of Alzheimer's, he described his descent as "I am going to hell!", I don't think that will be my destination. I call "dibs" on Dr. Goldman's thoughts on cognitive changes in PD:

Cognitive symptoms in Parkinson’s Disease are common, though not every person experiences them. In some people with PD, the cognitive changes are mild. In others, however, cognitive deficits may become more severe and impact daily functioning.

....Cognitive deficits that are mild and do not impair one’s ability to carry out activities of daily living have been termed “mild cognitive impairment.” Studies estimate that mild cognitive impairment occurs in about 20-50% of patients with PD. We now recognize that mild cognitive changes may be present at the time of Parkinson’s Disease diagnosis or even early in the course of PD. They may or may not be noticeable to the person. They may or may not affect work or activities, depending on the demands of specific tasks and work situations.

I call "Double Dibs" on the descriptive words of the second paragraph. If I am impaired at all, it is very mild. My impairment does not affect my daily activities, except for not joining in conversations around me, but who cares? I was never really social at any time in my life. I like my own company and PD is just what the doctor ordered to explain my anti-social behavior. As for being mildly cognitively impaired, as long as I can write, I think I will sit back and enjoy the lack of stress and comfort in being slightly off course.

Click here to find out if a cow is in the early stages of mild cognitive impairment.

Success is no accident

Tim Hague

I just finished Tim Hague's book, "Perseverance, the seven skills you need to survive, thrive, and accomplish more than you ever imagined" It was a good read and I recommend it to everybody, but especially to PWP.

Reggie Leach

Tim's book made me think of a quote I had hanging on the wall of my classroom when I taught Grade 9 Math. It comes straight from the mouth of Reggie Leach (for readers outside of North America, Reggie was a famous hockey player). He said:

"Success isn't the result of spontaneous combustion.
You have to set yourself on fire."

Good advice for PWP when deciding whether or not to exercise with an eye to slowing the progression of the "disease".

What is your IQ?

To add to Tim's definitions of "perseverance", I have always thought that there is a direct relationship between intelligence and IQ. Perseverance is definitely a quality of the highly intelligent.

What is all the fuss?

The morals gleaned from today's little gems are, or should be:

• Read Tim's book. It is highly informative and a pleasure to read.
  
• Reggie was a great hockey player who was not known for little plums of wisdom, but he hit the nail on the head this time. So everyone, but particularly PWP, should turn off the TV, get off the couch and go boldly into the future, walkng or running or yada, yada....some form of exercise.
  
• Get smart, get fit and when you tire of exercising and want to quit, keep on keeping on and the fear of failure will disappear.

In other words, persevere.

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What's a little pain between frenemies?

I am having trouble keeping up this blog and may take a month's hiatus unless something exceptional happens; even then I may be consumed with alien fragments of my life. But, for now, let's stick with the progress of my PD as to pain.

Rolling over in bed is impossible. Sleeping in one position is an assault on my back. I hate pain!

Getting out of bed is a comedy of errors. I am restricted by the pain and like a bad gymnast, I go through all manner of contortions before success. I try to sit up on the side of the bed and inevitably I fall back into the bed 3 or 4 times before I can stabilize myself. Every motion hurts. When I have achieved a sitting position, it will take me another 2 or 3 attempts to stand. At this time, I can eventually win the battle, but it makes me think I should be laughing at the spectacle. Treating this dilemma with humor chases away the "why me" burden.

Speaking! What can I say? Not much I fear. I can think of what I need to say and I am able to write down those thoughts without a problem but when I open my mouth to speak, my brain stops and I am speechless. I come up blank and I fumble for words or I just shut down immediately with my audience waiting and trying to find the word for me. This is classified as mild cognitive impairment and my mind treats this as mental pain.

Just to make certain I am not comfortable, the gods have cursed me with additional grief in the form of pain in my left shoulder and bicep and that verdammt pain is limiting my participation in boxing! Those boxing workouts are an enjoyable way to get exercise. Gone today. I now spend time on the treadmill and stationary bike. This morning I walked about a mile with my Nordic poles for support. Big deal! These solitary workouts are a drag.

Even though my arm will hurt, I have made up my mind. It is my intention to go back to boxing tomorrow. I have a need to be among some other members of the tribe. There I don't feel embarrassed if I limit my speaking and I won't (can't) do any hooks. I won't be pain-free, but at least I will be taking charge.

Leonard Cohen once said that a pessimist "waits for the rain, while I am already soaked". That's me! So, however pessimistic this entry might sound, I remain at peace with my prognosis and still exercise daily. I will slow down PD's rate of advancement. Exercise can do that. Boxing can do that. Forget the pain. If I slow PD down, even a smidgen, people in white coats might find a cure within my lifetime.

One can only dream and hope.

Maybe I won't take that hiatus.