Tuesday, June 12, 2012

Martha Mourns



In April, Mike and I noticed a change in his response to the Carbodoba-Levodopa.  He used to be able to make it for four hours on two pills, and would take about 15 minutes for him to get his legs back again.  Now, he started shuffling earlier, and it took much longer for the medication to take hold again. 

Michael and I were always outdoor people.  When we have time to spare, we would grab our gear and get out, out, out.  Since our first summer together in 1991, that’s been our habit. 

Because we are birders, every spring brings early morning hours, binoculars in hand, spying on nature.  Not so this year.  Like the baby bird who did not want to fledge, Mike squawked with dread whenever I proposed a birding outing.  Last year I could still drag him out “for exercise”. This year, his balking was complete.   If I wanted to go birding, I’d have to find other companions.

Michael and I have deliberately been planning for a change in the type of activities that are available to us, but, this new reality set me into a period of mourning.   I still wanted my outdoor companion and PD had stolen him from me.

I’m still climbing out of my depression.  Mike has been facing his losses since early in the game.  His wonderful spirit is an inspiration to me, and challenges me to find the bright side.  Yes, I am entitled to my mourning.  But, I cannot give into it and drag us both down.

I put out the hummingbird feeder and am planting native berry bushes in the garden.  If we can’t go to the birds, they will have to come to us.

Thursday, May 24, 2012

Professional Parky

I can now add a new job skill to my resume.  Paid Professional Parky.

I have found that, since I am treated at a well known motion disease clinic, my name is often suggested to groups doing research in my field of expertise. I am one of the subset of people who know how to shake, rattle, and roll.  Plus, my doctors know that I am likely to say "yes" to any science experiment that they dream up.

So, when a researcher needed help testing a medical device that will help PD patients with medicinal dosing, I got the call. The fact that a few hours of my time would be well paid made the decision to travel to the city even easier.

 I was perfect for the job. They asked me, "Can you follow instructions?"

"Well, no. I rarely read the instructions to any high tech gadget I acquire. I am more likely to mash and poke at buttons until the device does what I want, often ignoring 90% of the features I paid for."

And so I proceeded in my usual way, mashing and poking, setting off warning bells, clogging filters and otherwise being a normal American consumer with minimum patience and high expectations.
If there had been a helpline, I would have called.

It was all good, however. I uncovered some non-intuitive functions that would make the device difficult to use, if not altered. The design group got some useful feedback.

And I felt as though I had earned my pay.

(Note: I signed a confidentiality agreement with the company doing the research, so I am reluctant to describe the device in any detail. Let it be said that it is a step forward, but not the medical breakthrough we all hope for.)

Tuesday, May 22, 2012

Botox Revisited

In a blog post dated January 19th 2011, (titled "Botox, not just for wrinkles") I described the annoying tendency for my head to twist uncontrollably to the right, which forced me to consciously twist my neck back to forward again. I adopted various coping strategies, such as holding my chin with my right hand or cradling it in my left hand, giving the illusion that I was indeed terribly interested in everything you were talking about. In reality, I could not hide the fact that I was a bobble head and often explained that "I am not trying to be rude, but I'll hold eye contact as long as I can as you speak to me, then I'll catch again on the back swing."

It was just tedious. At the urging of Dr. A. I switched to another doctor in the practice who was adept at using Botox to quell these symptoms. The working theory is, if you paralyze the muscle powering the twist, the twist stops. The cure should work for three months, then requires another injection.

I was ready. It was relatively painless....... It didn't work.

Weeks after the injection, I was still fumbling with holding eye contact with those to whom I spoke.
I got even more twisty when I received the bill in the mail. Even though insurance picked up half of the bill, I still owed over $1200.00 for something that failed. Four shots a year for the rest of my life was just unsustainable.

Plus, at the time, I was pricing new motorcycles!

Post Script:  Although the Botox injection did not have the anticipated effect, months later (long after the effect of the toxin should have worn off) I noticed that I had periods of time during the day when the twist DID stop. Although I can have periods of severe "bobble", blessed hours go by where it is a complete none issue. As time go on, I seem to gain longer periods of respite. Perhaps, over time, it will just go away.

To be replaced by other, more annoying, PD symptoms.

Monday, May 21, 2012

This is what I need to do.

Ten months have passed since my last blog post.
Five years have passed since I was officially diagnosed with Parkinsons Disease.
Seven years have passed since I first showed symptoms that, in retrospect, I recognize as PD.

I'm in a new phase now.

The data points accumulating on my private mental graph all show a downward trend. In short, PD is going to kick my butt.

I don't care. Like a bar fight with a big brute that has offended my honor, I'll step into the fray and take my whuppin'. Maybe I'll get in a few solid hits before I go down.

As part of the fight, I've decided to keep on writing. Don't be discouraged, Dear Reader, we can live a happy full life with PD. We just need to take our time..... and pick our battles.

Go Team Go!

Love,  Michael Spokane

Kick in my PD Butt

: "mybel@earthlink.net" <mybel@earthlink.net>

Subject: blog

Date: May 19, 2012 10:39 AM

Where are your blogs for 2012?

Wanda


Dear Wanda,

Thank you for asking. Really.
I enjoyed writing the blog and had every intention to continue. Still do, in fact. Intention and action are not the same however.

My stories are piling up.

Two things happened, or more accurately, unfolded since my last post.

One, I got involved in recreating, revising my contracting business. Big insurance bills still arrive monthly, lucky pre-existing condition me.

The work continues to take all of my energy.

Second, The PD got worse. My happy, newly diagnosed stories of hope and acceptance are great, but do people really want to hear that PD kicks your butt?

The answer, I think is yes. I will find the time to write. You have inspired me. I'll drop a line when I post again.

For now, at 4:49 am, I think I'll try to get more sleep.

Michael