Que pasa!?!

Good afternoon! Kenny Wayne here… and I’m flyin’high right now. Literally. I’m 30,000 feet in the air over Baha, California on my way to Cabo San Lucas for the first time in my life.

Beckie and I are the grateful recipients of an expense paid week of relaxation at a unique resort with our good friends and neighbors - Judy Jacoby and David McKean. They have invited us for five years running to join them on their annual trek south, but this was the first year it worked out… We are definitely ready for some ‘get away’ and are fired up to chill out. (how’s that for a convoluted mental picture?)

I’ll post some pictures later…this place is amazing!

Okay, now for the update I promised a few weeks ago. This post is going to be Way Clinical – so if you aren’t analytical, skip this one. Believe me: there is just too much information, it will bore you to tears and you’ll never want to read anything from this blog again. So if that’s you, stop reading and wait for the next post. (I promise it won’t be months from now.) Here we go:

Today is Thursday, April 29th 2010. Life is improving since my last programming session with Dr. Bronte-Stewart and Wendy Cole at Stanford. I can’t say enough about those two ladies. They are experts in their field. Frankly, I can’t imagine anyone in the country who is more competent in DBS programming than Helen and Wendy. I trust them explicitly.

Here’s the info according to Kenny Wayne:

DBS Surgery and programming were a great success. (see the + signs below)

1) + The tremor is gone (alone with the associated aches and significant discomfort that accompanied it). I’m no longer on a roller coaster of debilitating physical irritations every two hours.
2) + The DBS Surgery works like medication with NO side effects or down side. It keeps me at about a 90% level with minimal fluctuations of ON and OFF times.
The balance of the once bumpy ride is smoothed out with Sinemet (synthetic dopamine) every 3and ½ hours with a dose of 25/100 Carb/Levo. Which is a 75% reduction from my pre-surgery meds. Yeah!
3) + Most days I wake up and can get out of bed relatively easy. Before surgery, I dreaded trying to get out of bed in the morning. (Come to think of it, I dreaded the night time, too. I would wake up every 3 hours – for a number of PD related reasons.) My shuffling to the bathroom is now minimal. All in all, the main motor symptoms have been optimized: Tremor, Slowness, Rigid muscles.



I’m slowly beginning to be able to separate PD symptoms from medication side effects.
My experience, personally, is that Parkinson’s is the cause of:

1) My resting right hand tremor – (has been 95% corrected by DBS)
2) Slowness of movement (bradykinesia) – (has been 85% corrected by DBS)
3) Muscle rigidity and stiffness - (has been 90% corrected by DBS)
4) Small handwriting – (50% better after DBS)
Immediately after my first program, I was quite manic in my personality.
At that time, and for a few weeks, my handwriting was the opposite – big and wild
5) Soft speech – (actually became consistently worse after DBS- continues to be a problem)
6) Stooped posture – (about the same after DBS)
7) Shuffling steps – especially first thing in the morning – (80 % improvement after my 4th programming session – not a big issue now. It’s interesting that after each programming session, it improves.)
8) Diminished facial expression – (50% improvement – this changes and adjusts relative to my supplemental med schedule)
9) Heavy eyelids. Many times when my eyelids are closed, I either don’t want to or can’t easily open my eyes without significant effort.
10) Constipation and early satiety. (forgive this next couple of sections. I don’t normally share this – however, I believe that a number of people with PD are reading this blog and they are going through this, too. They want to know, like I did, that they are not alone in their struggle. So, at the risk of being vulnerable and embarrassed, I will address everything.)
11) Urinary urgency and some incontinence.
12) Sexual dysfunction. (I call it “Mr. ED”) Okay, Okay, TMI !
13) Swallowing – Currently, my swallowing has become more of a challenge… not actually swallowing, but preparing to swallow. Once the actual action begins, things go down fine. It’s getting my brain to engage my throat
14) Drooling. It’s not gross yet, nobody notices when it happens - except me.
15) Restless leg. – This bothers me a lot. If I don’t take certain medication, this is a major problem… During my DBS operation, my left leg spasm/cramp occurred almost ever 30 seconds for three hours. It was a major distraction to my excitement over the miracle of getting rid of my tremor in the O.R.
61) Loss of smell. This actually happened years ago.

My personal experience with the medication side effects:

Sinemet 25/100 Now, after DBS, I take generic Sinemet (Carb/Levo) every 3 ½ hours– which causes some ‘heartburn’ and a bit of reflux occasionally. Also, it keeps my blood pressure down around 120 over 80. (I’m not certain that is a byproduct of the meds…. but hey. I’ll take it.
I’m experiencing some Dyskinesia. (Moving like Michael J. Fox does) in my right arm and leg. I did NOT experience this prior to DBS programming. I’ve noticed more in the past few weeks than before.

In addition, Sinemet makes me a bit sleepy and my balance is off (like I’ve had a couple glasses of wine without the grogginess. (NOTE: I can usually cover that up pretty well, but you should have seen me in the surf on the Cabo San Lucas beach yesterday. The undertow undertowed me. My friends thought it was hilarious) {It’s now Monday, May 3rd – I’ve been working on this post 4 days now.}

For the record, I was taking Carb/Levo 50/250 five and six times a day before surgery with Comtan each time.

Comtan 200mg – for the past few years I’ve taken Comtan with every dose of Sinemet – It discolored my urine to an orange color. Initially, my legs swelled like water retention and my ankle area turned a rust color. That is no longer the case.

However, I think the Comtan tends to increase the drowsiness to the point that it impairs my ability to work. As a result, I’ve recently decreased my dosage to only 1 or 2 a day, depending on my workload. It seems better. I seem to have more energy and I’m less sleepy

In the beginning, years ago, I took Mirapex for restless leg syndrome. But when I added the Sinemet and Comtan, all I wanted to do was sleep all the time.

We changed to Requip 3mg – and it wasn’t so bad. I was taking that 3 times every 24 hours. My doctor wants me to back off on Requip and I’m down to 1 pill morning and evening. Occasionally, my legs act up as a result.

I have a bit of compulsive behavior, risk taking and other urges that create some challenges, but it’s not a major deal at this time. That’s MY opinion. Ask Beckie, she may have a different story.

All in all, in summary – the big problems right now are Speech (softess and articulation) and mental processing. i.e., when I try to hurry, I actually go slower. If I attempt multiple tasks simultaneously, I become frustrated and overwhelmed. Any increase in emotion – good or bad – will set me off.
I have an appointment with a speech therapist soon. I hope that helps.

I must say though, before DBS programming, my frustration and mental processing was extremely bad… And just before I was ‘activated’ there were a few days when I couldn’t work at all. Things were NOT good.

These days, even though I pretend that everything is great, I deal with work related anxiety, obsessive-compulsive behavior and social avoidance. (Those are the proper terms for ‘wigging out’, pain in the butt obsessions with little things that really don’t matter, and sitting in a corner playing with the computer at a party)

As far as the ‘thinking’ thing goes, I’m experiencing some cognitive impairment:

1) Speed of mental processing at times when I’m ‘OFF’ or under the gun to perform.
2) Losing my train of thought in conversation. (Some call it CRS disease ;-) )
3) Multitasking, decision making and planning (All of which I’ve excelled with before PD) are a challenge when I’m pressured – even to the smallest extent.
4) Language production is complicated with my speech challenge. The ‘hurrier I go, the behinder I get’ if you know what I mean.

Case in point. Right now I’m overwhelmed with the volume of info in this post… I’m sure you feel the same. So I’m going publish this draft, proof it later, and go have a Corona on the beach. See the photo later.

Love ‘ya. Thanks for listening.
KW