A (sort of) Spooky Halloween Story

Halloween is here again, and we'll be carving pumpkins tonight.  I hope it goes better than last year.  Last year, something kind of spooky happened with the pumpkins.  We took some of the newly finished jack-o-lanterns outside then went back in for the rest.  We weren't gone for more than 5 minutes, I kid you not, and when we went outside with the rest of the pumpkins, the faces of the first batch had been, well....eaten. Where the face had been on each jack-o-lantern, there was nothing but a big, almost perfectly round hole.  They looked like this:

Well, we just stood there dumbfounded for a few seconds, staring at this whole row of pumpkins that looked like they'd been shot with a cannonball.  We couldn't imagine what could have done this in such a short time.  Literally, it had only been a few minutes, as we gathered up the other pumpkins.  Thoughts of evil spirits and demons crossed my mind, just for a few seconds, I admit it.  Then we looked closely at the violated jack-o-lanterns, and saw the tooth marks; raccoons!  They must have been up in the trees around our house just waiting for us to leave those pumpkins alone for a few moments.  They sure work fast!

     This time, we'll put the carved pumpkins in the garage until it's time to light them.  I can only hope that the burning candle will deter the demonic raccoons.

Dean's DBS Story

I had to share this story. The leader of my support group, Dean Prescott, is a remarkable man. He has fairly advanced Parkinson's though he's still young. He has terrible trouble with walking, dyskinesia, and just basic mobility. He shares so much with us, so selflessly! Recently, he underwent DBS surgery, and kept us all informed on his progress. This is his most recent update:

"It was a short walk, as walks go. It had seemed so far away when they first made the announcement. It was hard to understand how this moment was already here. At this point I just wanted to be sure I was putting one foot in front of the other without tripping on Sarah's dress. The bridesmaids were were all in the room, waiting for their moment, while the groomsmen seated the guests. I peeked into the room to see my daughter in her dress and was stunned by the way she looked. "What do you think, grandpa?" Was asked by one of the bridesmaids. "Beautiful," was all I could say.

A light breeze chilled the guests as they waited patiently after being seated. They were treated to a view of evergreen trees made greener by the deep blue sky above and Lake Tahoe in the background below.

Suddenly it was time, wedding music began to play. The bridesmaids lined up with their partners and began the procession down the aisle until there was only the flower girl (Natalie, my granddaughter), the ring bearer and me and Sarah. A handsome young man, the ring bearer was having a hard time holding the pillow that held the ring. It would not stay balanced on the one hand while the other hand was holding on to the flower girl. I showed him how to bunch up the bottom of the pillow in his hand and he was ready to go. Down the aisle they went and then it was only me and Sarah.

It didn't seem possible that so much time had passed to bring us to this moment. Wasn't it just the other night that I was reading her a bedtime story and she was asking me to read it again and again.

We waited for the music to change again. Then one step at a time we proceeded as the faces in the audience began to appear. The seats were fuller now than when I had peeked out earlier. I kept my concentration on my gait as we walked slowly down the aisle to where the groom was standing, alongside the minister and the bridesmaids and the groomsmen. I shook his hand and kissed my daughter, just like the rehearsal. I found my seat, next to my wife and watched the rest of the ceremony.

It wouldn't seem like such a short walk would be such a big deal and thankfully it wasn't, but as little as a month earlier it might have been much different. The effects of Parkinson's disease and the medications used to treat it had reached a point where without medication, I could barely take a step; and with medication I could walk, but my right arm and leg would gyrate out of control for hours at a time.

The Deep Brain Stimulation Surgery that began six weeks earlier with two probes being implanted into my brain would reduce my dependence on medication, improve my basic level of ability, and reduce the side effects of the medications. How the procedure accomplishes even one of these functions, I don't understand.

Two weeks after the initial surgery they implanted the stimulator into my chest and connected it to the probes with wires just below the skin. They would not activate the stimulator until two weeks later, just two weeks before my daughter's wedding.

The initial adjustments with the stimulator are done with the patient off medication. That meant another night of trying to sleep while my legs twitched. This time it wasn't quite as bad. In fact I was able sleep some that night and I was able to walk slowly to where I was being tested the next day. I had expected to need a wheelchair.

They ran me through the usual tests before turning on the stimulator. First the box where they have the patient stand up straight, then lean in various directions, then the walls move in various directions, then floor moves in various directions, all with the goal of seeing where you lose your balance. Then there are more tests that are repeats of previous tests such as finger tapping, leg tapping, hand twisting and, of course walking.

Now it was time to turn the stimulator on and when they did I didn't feel any different. When they ran through the tests again, however, I immediately noticed a dramatic difference in my ability to perform them. They used the results to determine how to adjust the initial settings on the stimulator. In adjusting the stimulator, they have to allow for the effect of the medication. If they adjust the settings too high some of the old side effects may return.
The stimulator comes with a controller. When put up next to the implanted stimulator, the controller can turn the stimulator on and off and even up and down to a limited extent, but the major adjustments are done by the nurse who is trained to make adjustments using a separate controller that adjusts the strength and frequency of the signals being sent from the stimulator to the probes. The nurse showed us how to turn the stimulator on and off while we waited for the medication to take effect. There are certain circumstances where the stimulator needs to be turned off and other circumstances where the stimulator can be accidentally turned off and may need to be reactivated, so we both needed to know how to use it.

It has been eight weeks since the initial adjustment of the stimulator amd four weeks since I went in for a second adjustment. My next appointment is in two more months. I have been told that it can take up to six months before they get the ideal adjustment. Overall I have eperienced considerble improvement in some areas and have been frustrated with the lack of improvement in others. The biggest difference has been a reduction in the dyskinesia that had become very difficult to deal with. I have had good deal of improvement in getting in and out of chairs. My voice is stronger for the most part.

Getting a consistent stream of medication is still a problem. Carbidopa/levodopa is the most effective drug used for Parkinson's, but it has limitations. One is that there is no even delivery system. You take a pill and it slowly breaks down in the stomach (depending on what else is in there), gradually getting stronger until it reaches maximum effectiveness, then gradually slows down until you are due for your next dose in about four hours.

To improve the effectiveness of carbidopa/levodopa it comes in a "long acting" or "controlled release" formula that generally has the same effect but is spread over a longer period of time (4-6 hours).

To further complement the carbidopa/levodopa therapy there is a group of drugs called "agonists" that mimic the effect of carbidopa/levodopa. These drugs include "mirapex" and "requip". They help extend the effectiveness of carbidopa/levodopa. They have been helpful in allowing me to sleep through the night. However they have been linked to compulsive behavior in some cases. They generally are not strong enough to be used alone in advanced cases. The uptake on these drugs is also different from carbidopa/levodopa, further complicating the the dosage formula.

This may be an oversimplification of the situation, but I think it gives you a general idea of some of the problems in taking Parkinson's medications. The trick is to take enough to help get the patient moving, but not so much that they become dyskinetic and to make that situation (we'll call "normal") last as long as possible.

The DBS has helped in finding that spot, but there is still a ways to go."

The In-Laws

Today is my older brother's wife's birthday:  HAPPY BIRTHDAY, KC!! 

At the same time, my sister-in-law to be, Debra, is in the hospital recovering from an operation she had yesterday.  FEEL BETTER SOON, DEBRA!!

I hear people talk about their in-laws and the trouble they have getting along with them, and I feel so blessed and grateful for the wonderful people who have been brought into my life by marriage.  Not only did my brothers choose remarkable women to marry, but when I married my husband Bob, I got a whole new family of the nicest, most amazing people you could imagine as a bonus.

     So this morning, I find myself thinking of the in-laws I've come to know and love.  My mother-in-law Bettie, and my husband's sister Kathy up in Alaska.  My sister-in-law KC here in Northern CA, and my younger brother's fiance Debra out in NYC.  My husband's brother Phil and his wife Joy in Texas. They're spread out all over the country, but I'm grateful for them all. 

Normal, normal, normal!!

Got my brain MRI results back; normal, normal, normal!!  That's such a relief.  I don't know why, but I'm usually not even aware when something is scaring me until it goes away.  I didn't think this test was making me nervous at all, but I guess it was, because I sure feel better now.

I still have the EEG to get through on November 3rd.  One test down, one to go.

I CAN still dance!

Bob and I went to a Jimmy Buffett concert last night, and of course everybody stood up and danced to the music and sang along. At first, I didn't try to dance at all, just swayed a little to the beat, but it was infectious, and pretty soon I was dancing too. FUN!! We had a ball! It's funny how you think you can't do something, but when you try, you find you can. Like when we went on a 14 mile bike ride this summer; I didn't think I could do it. Not only because of PD, but also because I hadn't been on a bike in 32 years. But I did it! I think there's some deep message there, but right now I'm too sleepy to think about it. Maybe after I finish my latte....

Dancing Down the Rain

This was a dream I had, and this poem wrote itself in response.

Dancing Down the Rain

Dancing up the lightning,
Dancing down the rain,
Never feeling sorrow,
Never feeling pain.

A spirit in the aftermath,
Of stormy, deadly seas,
A sprite above the hurricane,
Relaxing in the breeze.

I am that spirit, soaring high,
To brush the cheek of sunset sky,
Untouched by hate, I rise above,
But equally untouched by love.

I’m all alone, there’s no one near,
The empty sky is all that’s here,
No lover, friend or child around,
I must return to mortal ground.

So I turn back, towards home I race
To settle in its warm embrace,
My spirit pours into its shell,
Pours back into this human hell.

But I am glad to be at home,
From which I’d never really roam,
Someday we’ll all be free of pain,
Forever dancing down the rain.

I'm off to see the wizard

I'm off to see the wizard this morning, not to see if he can give me a brain, but so that he can scan the one I have.  I'm having another brain MRI this morning.  A week or so ago, I ended up in the emergency room with extreme vertigo and vomiting, and the neurologist thinks it was either a migraine thing (migraine aura with no pain) or a seizure.  The seizure idea comes from the fact that I have olfactory hallucinations; I smell things that aren't there.  This is something that is known to happen with some PD patients, a phenomenon known as "phantosmia".   My hallucinations present a little differently than normal, though, and he thinks the pattern points to seizures or migraine or something.  Anyway, I'm getting the MRI this morning and at some point I have to have an EEG to look at my brain waves, too.

Ahh... if I only had a brain!

Silver Linings

Although Parkinson's Disease has taken a lot away, it has also given me some gifts.  The best of these is the incredible community of other PD patients that I've found, both online and in "reality".  I've recently been blessed with the opportunity to meet two of my best online friends; first it was Btrflynana, then Pokie Too.  As soon as I figure out how to do it, I'll post links to their blogs.  Meeting these amazing women has been a spiritual experience for me; they both inspire me so much.  I wrote this poem for Pokie:

Pokie's Pennies

I have a friend, so strong and kind,

Who has a compass of the mind.

On her journey in this life,

At times in joy, at times in strife,

When there's a choice that must be made,

Or she's in doubt or she's afraid,

God sends a messenger so small,

You might not notice it at all.

Every time she turns around,

She finds a penny on the ground,

Or in a song, or on a shelf,

Or in a dream, all by itself.

She follows where the pennies lead,

And finds that all is well indeed.

This touchstone tells her of her mission,

If she takes the time to listen.

Why can't I have a helper too?

Lord knows I need it, we all do.

But wait; is that a sign I see?

Is my friend my epiphany?

Was she sent to light my way?

I think she was, but who can say?

With happy tears my eyesight blurs,

Is she my penny, or am I hers?

Hello world

When a programmer runs a program for the first time, the first function they sometimes have the program perform is called a "hello world".  It's just a way to show that the program is "alive" and not stuck in a loop somewhere.  Well, that's what this is for me.  Since I was diagnosed with Parkinson's Disease in 2006, I feel that my life has been stuck in a series of endless loops; when I get out of one, I fall into the next one.  Now, though, I think I finally have debugged my code and become functional again.  I feel so lucky; my medication works very well for me, I have the support of my husband and my family, and I've discovered a wonderful online community of fellow sufferers who inspire and amaze me every day.

Hello World.