Saturday, October 29, 2011

"My Final Answer..." (at least 8 - 10)

I know that's a lame title for this post, but it's 2:50am - I'm awake, my fingers are working, but I'm not certain my creativity is up to par.  Continuing with the Q&A ......

Q8):  What is the battery life of your IPG?
A8):  Three to five years relative to the amount of voltage output.  November 13th is my surgery anniversary ( since 2009 ), and I noticed that my remote control readout says my IPG is at 2.90v as opposed to the 2.96v it's been registering, until about 4 months ago.  What does that mean?  I'm not quite sure, but my doc at Stanford didn't seem worried about it during my last visit.

Q9):   What is the hardest thing to deal with about Parkinson's - physically?
A9):  Actually, over the past 6 months, I've noticed having difficulty swallowing, more coughing, and most obviously, the speaking issue.  My current inability to communicate effectively has taken a toll on our quality of life, and Beckie, my wife and caregiver finds herself isolated and frustrated.  I feel quite helpless most of the time, like Cher, my sentiments are, "If I Could Turn Back Time."

Q10):  My (relative or friend) has Parkinson's.  Could he/she qualify for DBS surgery?
A10):  Age, general health, mental stability and attitude all play into the  process of qualifying for DBS.  I was 55 when first diagnosed, had DBS surgery at 58 and have been quite healthy until diagnosis.  My attitude has been optimistic and my cognitive abilities intact.  If I were 75, with physical complications, I might not qualify.   Depending on your friend's situation, they may or may not qualify.  In my opinion, they should definitely check into the possibility -- sooner, rather than later.  **Beckie adds a footnote:  it's been our observation and personal experience that many neurologists drag their feet (big time!) in even suggesting - let alone being proactive - that the patient pursue the possibility of DBS.  YOU may have to ask for a referral --- and not take no for an answer.  What do you have to lose?

Bonus Q:  Is it true that smokers have a very low incidence of Parkinson's?
A: Yes.   They aren't sure exactly why, but it's true.  However, if you have PD, smoking won't make it go away.  (Even though some say it possibly extends the "ON" time in patients)   I've never smoked more than a handful of times in 60 years.  However, if it does give relief and less side effects than traditional PD medication, maybe................. What would you do?  Like I have often said if Parkinson's doesn't get you, the medications will.   (See my post from a year ago, Oct 13, 2010 about why I feel strange most often.)

And, Ladies and Gentlemen, on that 'positive' note, I'm going to try to go to sleep.  It's 3:58am and all is well.  (It's not, but let's say it is). 

"Night, night" he whispered - with visions of Peter, Paul and Mary on a late night infomercial singing distant strains of 'Puff the Magic Dragon..." followed by the Beatles reminiscing with "Yesterday."  (go ahead, sing along with me:  'yesterday....... all my troubles seemed so far away'  ....fading, fading, f a d i n g  ,  f   a   d  i   n   g  ..........  G' night John Boy.

Tuesday, October 25, 2011

Miracles DO Happen!

The fact that I'm posting again within a week is truly (well, kinda) a miracle...

Actually, I wanted to pick up where I left off:

Q4) How does DBS work?
A battery-pack (impulse generator or IPG) was surgically placed under the skin beneath my collarbone. The 2 wires from the IPG are threaded together up the side of my neck and continue to the top of my head where they split off and connect to the 2 'Leads'.  (I had bilateral DBS-both sides - so the IPG feeds both.) The leads are wires, each containing 4 electrodes, which were strategically placed with the help of GPS signals (yes - really!) into a kidney-bean-sized structure deep in my brain called.... the Substantia Nigra.  Specific 'voltages' (from the IPG) are applied in milliamps to various combinations of electrodes to get varying results. Too much voltage can cause localized 'pins & needles pain' -  or a number of other unpleasant side effects. BUT.... just the right amount can optimize tremor and other symptoms.  All the wires on the outside are tunneled under the skin - so most people never even notice - unless I point them out.  That's amazing, considering I'm bald.  I guess people just think I have a bumpy head!

Q5) Do you have any negative side-effects?
A5) Yes, I do.
When I had my first neuropsych test before surgery, the doc asked me this question: "If you had the choice between being able to speak clearly, OR get rid of your tremor, which would you choose?" My response was, "Do I have to choose?" "Well," he answered, "there is a 60% chance of the surgery affecting your speech center in a negative way."

My answer to him was, "most of my life, I've been on stage - entertaining people with my voice. If those days are over, no problem. As long as I can play with my grandkids and hold them close, it doesn't matter if my speech is affected."

Today, I can play and intract with Leo, Vida and Tesla. Unfortunately, I cannot carry a normal conversation - even with my wife. The grandkids are too young to notice..... yet. But I must admit that Leo (almost 4 years old and going on 14) looks at me very strangely when my words get all confused. We're working on that. It a long, long road.

That said, however, I'd have DBS surgery again in a heartbeat - even with the speech challenge.

Q6) Why doesn't Michael J. Fox have this surgery?
A6) I don't know the answer to that question. He may not be a candidate because of prior surgeries performed. I'm only guessing at this point.

Q7) Is DBS reversible?
A7) Yes! When a cure is found, I'll turn my system off with no regrets.

As Porky Pig used to say, "That's all Folks!" at least for today.
I'll process more Q & A when I've recover from this round of typing.

Popeye put it more succinctly, "I've had all I can stanz ...... and I can't stanz no more." (the backspace key, that is.)

It's a great day. :-)

Kenny Wayne

Friday, October 21, 2011


I can hardly believe that my last post was in April. So much has happened since then.

I don't want to bore you with the details, so I won't. Suffice it to say that on my most recent flight, I met a lovely young woman who asked me a lot of questions about Parkinson's Disease and DBS surgery and it prodded me to post today.

I realized that there are, what I call, "the top 10 questions", most people ask right off the bat. I'll list some of them in this post, but remember - I'm not an expert. I'm just a normal person who has early onset PD and on 11/13/09 had Deep Brain Stimulation Surgery (DBS).

Here are some - in no particular order:

Q1) "I've seen interviews with Michael J. Fox. He really flails around a lot. Is that typical of Parkinson's symptoms?"

A1) Actually, MJF's movements are called 'dyskinesia" and are primarily a side effect of the key drug prescribed for PD called L-Dopa...generic for SINEMET.
The opposite is "bradykinesia" which is a true PD symptom where your muscles become rigid and stiff and you can hardly move at all. The choice is: take no medication and be 'paralyzed' or take L-dopa and put up with dyskinesia.

Q2) Are there any options for avoiding dyskinesia?

A2) Only one that I'm aware of - DBS. In my case, I experienced a significant tremor in my right hand before DBS. Stopping that tremor was the key reason for having the surgery - with the hope of delaying the onset of drug-induced dyskinesia at least for a few years. (I'll have to check into it, but I don't think dyskinesia is ever a symptom of PD. Ironically, since my last program session, I'm experiencing some intermittent dyskinesia in my right foot and leg and it's not clear to me, yet, why that's happening.)

Before surgery, I was taking generic SINEMET 50/250 6 times a day. (That's a bunch!) After DBS, dosage dropped to 25/100 5 times daily - 60% reduction. Since my last checkup in Septmber, I've cut that in half! However, the voltages in both sides of my brain have been stepped up significantly - from the original 2.2v to 4.1v and back to 3.6v after powering up a third electrode in the last program session.

Q3) What are the symptoms of PD and do you have any pain?

A) Not everyone with PD has tremor. I did. It's not cured, only masked. If I were turn OFF my system, it would come back with a vengence, within 20 seconds.
I don't have any pain per se, just muscle aches.
Other symptoms include:
Moving slowly. (If I intentionally try to hurry, my body actually resists and goes even slower. That is NOT fun when I'm in line at a security checkpoint at the airport!)
Fatigue. (also a side effect of meds)
Muscle weakness. Especially core body strength. Ask anyone with PD how dificult it is to turn over in bed. (I feel like my body is covered with Velco.)
Impacted Gait and shuffling. (Navigating the hall and doorways in the middle of the night can be daunting - especially if trying to hurry because I have to go to the bathroom.)

There are more, but I'll save them for the next post. I've reached my limit for typing for the day and I'm weary from correcting all the typing errors.

Later, Gator.