Sunday, April 21, 2013


In my previous post, I mentioned a “G-Tube” (Gastric feeding tube) and I want to comment on that for a moment.

The lady at the restaurant told me about her neighbor who had reached a point  in his Parkinsons journey where he couldn't swallow ….. so he had a G-Tube surgically placed for nourishment.

I mentioned to Beckie, (my wife) that if I ever reach that point, I DO NOT want to have a G-tube; I’d like you to understand why  I feel that way.  It all comes down to Palliative Sedation.

Ten years ago, in 2003, I was sitting with Bill (my best  friend), his immediate family, Beckie and a lady from the local Hospice organization.  We were in his living room listening to the Hospice representative carefully explain about palliative sedation.

Bill was seated in his wheelchair beside me.  He’d had a G-tube inserted months before, through the skin, directly into his stomach.   He had not been able to speak for quite some time, and the decision to place the G-Tube was made because he had such difficulty swallowing.  Bill was near the end of a 6 year battle with ALS - a terminal illness also known as Lou Gehrig's Disease - and we were discussing hospice care.

At that point in time, I had not been diagnosed with Parkinson's -  didn’t have a clue what was ahead for me.  I thought I was healthy and just wanted to be there for Bill.  I remember telling people that he was Moses and  I was his Aaron - speaking  for him as needed.  We had reached the point where, most often by his body language and his eyes, I could tell what he was thinking  and I knew he was very anxious about this particular gathering.

The lady from Hospice chose her words carefully, as each of us tried to grasp the meaning of what she was saying.  "When we reach the point where Bill is very close to dying, and we know it's only a matter of days or hours," she continued, "and there is nothing else we can do for him, the least we can do is make him comfortable and not feel any pain.  Once we put that in motion, however, it's final.  He will be sedated and in a state of euphoria until he crosses over."  I realized that basically they would put him into an induced sleep - feeling good - until his nourishment was depleted, which typically would only be a matter of days.  He would not know anything after that fist injection.

There was a fly in the ointment, though.  Bill had a G-tube...and according to Hospice protocol,  Hospice personnel can only be involved when all other avenues have been exhausted.  As such, a feeding tube disqualifies the patient because it constitutes life support -  possibly extending his life for a very long time.  The only way Hospice could step in would be for Bill to get rid of the G-tube.  Bill wasn’t ready - at that moment - to go there, so it was a moot issue.

All of that background, hopefully, explains why I told Beckie that I didn't want a feeding tube; I just want to go when my time is up.

I realize that the issue is not a simple one.  We could probably effectively argue both sides all night long...but that's my experience in a nutshell.

Oh yeah, on a lighter note, Bill and I would occasionally each have a beer together before he had the tube inserted.  One afternoon, while visiting with him, G-tube intact, he indicated he wanted a Budweiser.  I looked him in the eye and asked, " In there?"  He nodded, with a big smile on his face.     So……… I grabbed a 16-oz. can of that brown Kool-Aid, popped the top, put a funnel on the tube, and we took turns - a sip for me, a drip into the funnel for Bill...sip for me, drip for Bill...each time the beer hit the funnel I quipped,  "THIS BUD'S FOR YOU!

"And that," as Paul Harvey used to say at the end of every broadcast, "is the rest of the story."
"Good Day!"

Tuesday, April 16, 2013


Today I had some lunch at Souplantation after dropping Beckie off at work. Halfway through my meal, an older couple entered and proceeded to sit in the booth across from where I was sitting.  The lady was "well-kept" - with meticulous makeup and clothing, poise and grace (like someone you'd see at South Coast Plaza in Newport Beach).

The man was well dressed - looking like he was in his early eighties - but immediately it was obvious something was amiss:  the tell-tale shuffling gait and 'freezing' as he got to the table.  Then the awkward process of trying to slide into the booth (which he navigated by himself while the woman went to get drinks).  Once he was seated, I looked for any kind of tremor, but it was minimal. 
The woman returned and they began eating.  I  watched painfully as he tried to eat his salad with a fork (remembering how big a challenge that was for me before DBS surgery).

His face had the typical Parkinson's mask appearance and he didn't talk...except to blurt out "I have to go to the bathroom."  At which point the lady got up to assist him, reaching out her hand to try to pull him up to a standing position, while reaching down with her other hand to try to swing his legs around so he could stand up.  Watching him struggle to get out of that booth was difficult, to say the least.  (Too many memories of my own)

The lady ( I assumed she was his wife) graciously and patiently walked him arm in arm to the restroom - at which point I got up from my seat and followed at a distance, finally meeting up with her at the pasta bar.  As I approached, I quietly asked, "How long has your husband had Parkinsons's?"
To my utter amazement, she replied, "Oh, he doesn't have Parkinson's.  He has Dementia and Alzheimers!  He's 96 years old!    To which I responded with  "I've had Parkinson's for 7 years, but I had brain surgery to minimize the tremor."
She replied, "Our neighbor had Parkinson's for 17 years.  He passed away this past year - he couldn't swallow anymore so they put a tube into his stomach." 
I tried to keep a pleasant look on my face as I remembered my friend, Bill, in the last year of his battle with ALS (Lou Gehrig's Disease), trying to sustain himself with that G-tube protruding from his tummy.  We exchanged niceties for a moment and then she excused herself saying,  "I have to keep a close eye on him."  That was the extent of our conversation.

That's not the first time I have seen someone with obvious symptoms of Parkinson's Disease who was in denial about it.  Maybe they think because there is no tremor, that  it's just old age.  I don't know.    But it astounds me that someone close to them doesn't drop a hint!  That man had Parkinson's...shuffling, freezing upon trying to navigate narrow spaces, facial muscle droop, no strength in the core muscles, very slow movements, etc., etc.
He is probably too old at 96 to be a candidate for DBS,  but there is no doubt he could benefit by taking carbidopa/levodopa medication for Parkinson's.  But then, I am no doctor.  I am however, in the center of my own battle with continuing debilitating symptoms, and I know one when I see one.

What's the moral of the story?
Never forget that D'Nile is a river in Egypt...and its far, far away!
Denial, on the other hand, is sometimes too close to home.

Kenny Wayne