Finally a Surgery Date!

Barring something unfortunate, I should have my two outpatient surgeries on February 2nd, 2011, at Orlando Regional Medical Center.  In one trip to the operating room (for me) I'll have my cardiac pacemaker replaced and also the Diaphragm Pacing System (DPS) installed.

For more on my DPS pursuit and surgeries, see this blog entry:

http://powerwheelchairusers.blogspot.com/2010/11/from-vent-to-diaphragmatic-pacing.html

I plan to write a comprehensive post-surgery evaluation of the DPS and my experiences probably in late March, after I've had some adjustment time.

Thanks and God bless!

Bill Miller :-)

C1-2 Quadriplegic with a 221 High Bowling Game

Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT

My blog: http://powerwheelchairusers.blogspot.com

Business website: http://www.ikanbowler.com

Personal website: http://www.lookmomnohands.net

What's Coming in 2011

The two main things I want to profile on my blog in 2011 are: (1) IKAN User profiles from people around the U.S. and World, and (2) further chronicles of my pursuit of the Diaphragm Pacing System (DPS).

Wheelchair users around the U.S. and also some abroad, mostly in Europe, are enjoying dynamic bowling with the IKAN Bowler and I want to share more of their stories/profiles here.  Many wheelchair users, especially power wheelchair users, still don't know that dynamic bowling is possible, regardless of one's reason for wheelchair use or chair type.  Anyone who can safely operate a wheelchair can bowl, and I'm going to share stories of people who are.  Some can be found here: www.WheelchairBowlingRecords.com.

Also, if you've followed my blog, you know I've been pursuing an alternative to the ventilators that I've used the last 13+ years which is a diaphragmatic pacing system.  I'm (hopefully) getting close to a surgery date.  The coordinating doctor for my concurrent surgeries (in addition to the DPS, I'm also having my cardiac pacemaker replaced during the same trip to the operating room) is checking out the possibility of surgery on February 1st or 3rd.  So in roughly a month, I could have these surgeries done, but neither date has been confirmed (either is fine from my caregivers' and my perspective).

The goal of my blog is to spread awareness about how wheelchair users are being empowered, in hopes that it could help improve the quality of life for other wheelchair users.  So I might also share other noteworthy items here.  We'll see what the year brings!

I agree with Charles Swindoll who said, "Life is 10% what happens to you and 90% how you react to it."  May you control what you can and react well to everything else.

Have a healthy and happy 2011 -- and God bless!

Bill Miller :-)

C1-2 Quadriplegic with a 221 High Bowling Game

Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT

My blog: http://powerwheelchairusers.blogspot.com

Business website: http://www.ikanbowler.com

Personal website: http://www.lookmomnohands.net

From Vent to Diaphragmatic Pacing System -- Part IV

For more on my pursuit of the NeuRx Diaphragm Pacing System (DPS) see Part I, II, or III.

I've been approved for concurrent surgeries (i.e. one trip to the operating room for me) -- and met the two doctors who will perform them!  I also learned more about what the surgeons will actually do.

First, Dr. Duran will replace my cardiac pacemaker.  Second, Dr. Cheatham will install the DPS.  Then Dr. Duran will return, and they will ensure there's no interference between the two devices (no previous patient has had interference).  Both doctors will try to set the respective devices optimally for me (they can adjust the stimulus strength, frequency, etc).

Also, we're going to try doing it as true outpatient, i.e. have surgery early in the morning, and (hopefully) be discharged that afternoon.  That's BIG, because it should help limit my chance of acquiring an infection, and the schedules for my caregivers and me will require little altering.  My home health agency will help get my blood back to a therapeutic level.

We're trying to setup surgery for January or February (2011) -- stay tuned!

Bill Miller :-)

C1-2 Quadriplegic with a 221 High Bowling Game

Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT

My blog: http://powerwheelchairusers.blogspot.com

Business website: http://www.ikanbowler.com

Personal website: http://www.lookmomnohands.net

One of the Coolest Commercials EVER!

Checkout this YouTube clip for ThinkBeyondTheLabel.com:

Direct link: http://www.youtube.com/watch?v=lV4HUBUMuHQ

Why is that so cool?  If you didn't notice, it shows a high-level quadriplegic typing with a mouthstick, and later driving his chair via sip-and-puff (the same method I use). I've seen it air on ESPN (i.e. mainstream TV) multiple times in the last month.

Here's part of the "About Us" description on their website:

"Think Beyond the Label is committed to making the business case for employing people with disabilities. We are a partnership of health and human service and employment agencies with federal grants, coming together to build a uniform national infrastructure and approach that connects businesses to qualified candidates with disabilities. Our goal is simple: to raise awareness that hiring people with disabilities makes good business sense. Employees with disabilities have unique, competitively relevant knowledge and perspectives about work processes, bringing different perspectives to meeting work requirements and goals successfully. Hiring someone who 'thinks outside the box' might be thinking too small when there’s an opportunity to hire someone who lives outside the box."

Source: http://www.thinkbeyondthelabel.com/About-Us/About-Us.aspx

I think it's fantastic that such a resource exists to help both people with disABILITIES and companies benefit from working together.

Bill Miller :-)

C1-2 Quadriplegic with a 221 High Bowling Game

Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT

My blog: http://powerwheelchairusers.blogspot.com

Business website: http://www.ikanbowler.com

Personal website: http://www.lookmomnohands.net

From Vent to Diaphragmatic Pacing System -- Part III

For more on my pursuit of the NeuRx Diaphragm Pacing System (DPS) see Part I and/or Part II.

If you've followed my blog and pursuit of the DPS, you know I wanted to be using it by now.  However, I still don't have a surgery date -- though one could be coming soon.  Allow me to explain...

My pursuit of the DPS is slightly complicated by two things: (1) I take a blood thinner medication to prevent blood clots, and (2) I also wish to have my cardiac pacemaker replaced during the same trip to the operating room.

Neither of those two things are all that complicated, however since I have to come off my blood thinner prior to surgery and get back to a therapeutic level afterward, I only want to have one surgery because having two entirely separate surgeries would essentially double the chance that I could develop a blood clot or get an infection.  I don't believe that my risk for developing a blood clot and/or getting an infection is very high (knock on wood and with the Good Lord's blessing) however, either of which could be fatal for person like me who is quadriplegic, since our immune systems are fairly compromised (and blood clots can be dangerous for people with fantastic immune systems).

I don't have a surgery date yet because my original choice of hospital (Shands at the University of Florida; the hospital affiliated with my alma mater) will not allow me to have both procedures concurrently, and I'm not entirely sure why.  We even asked our state representative to encourage Shands at UF and my insurance company to come to an agreement, but that was to no avail.  I think Shands wants to ensure I'm medically stable on my cardiac pacemaker before doing the DPS, however they did not explicitly state that (plus I believe I'm stable now; my pacemaker battery has been dead for several years, and even when working, it's only designed to kick-in if my heartbeats per minute fall below 60, which I was told almost never happens).

Fortunately, Florida has multiple facilities that are DPS surgery approved, and it appears Orlando Regional Medical Center could be the answer.  I don't want to jinx it, but both surgeons (Dr. Michael Cheatham for the DPS, and Dr. Aurelio Duran for the cardiac pacemaker) are ok with concurrent procedures and recommended that to their pre-registration department.  I'm waiting to hear (hopefully good news) from them soon.  Pending approval, a surgery date may be set soon.

So, like many things in life, this has been lesson in both patience and perseverance -- and I will NOT give up, even if ORMC cannot or will not do the procedures together.  Somehow, we'll get this done -- eventually.  Stay tuned for Part IV...

Bill Miller :-)

C1-2 Quadriplegic with a 221 High Bowling Game

Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT

My blog: http://powerwheelchairusers.blogspot.com

Business website: http://www.ikanbowler.com

Personal website: http://www.lookmomnohands.net

BACK IN LIFE -- Zach Weinstein's Story

"In July of 2005, Zack Weinstein broke his neck while jumping into the Saco River in Maine.  He is now a C5-C6 Quadriplegic.  In service to other quadriplegics, we have teamed up with Zack to create "BACK IN LIFE".  Our hope is that by sharing Zack's powerful experiences in this film, it may provide others with needed strength in an oftentimes daunting struggle. Runtime: 15 Min."

Back In Life from Smooth Feather on Vimeo.

Video link: http://www.smoothfeather.org/index.php?pg=films

Video alternate link: http://vimeo.com/355371

Great story, great video -- thank you Zach & Co. for sharing!

God bless!

Bill Miller :-)
C1-2 Quadriplegic with a 221 High Bowling Game
Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT
My blog: http://powerwheelchairusers.blogspot.com
Business website: http://www.ikanbowler.com
Personal website: http://www.lookmomnohands.net

IKAN User Profile: Ben Lux, Florida

My buddy Ben Lux is one of the original members of our Central Florida area Quad Squad group.  Ben actually had the top overall score for an IKAN User, a 183 on May 10, 2004.  Ben isn't able to bowl as frequently as he did back in 2004, but he still enjoys bowling when he can.  Aside from bowling, Ben particularly enjoys watching movies and his favorite football team, the Jacksonville Jaguars.  But, above all for Ben is his faith: God first, everything else second.  Amen, Ben!

Here are Ben's answers to the profile questions...

Name: Ben Lux

Age: 32

Location: Yalaha, Florida

Reason for Wheelchair Use: Quadriplegia

Onset or Injury Date: 7/4/93 Automobile Accident

Wheelchair Operation Method: Sip n' Puff

High Bowling Score: 183   

Approx Bowling Average: 100-130

Typical Range of Scores: 80-150

Bowling Frequency: Not as often as I'd like.

Bowling Ball(s): Columbia

Quote from Ben: "A foolish consistency is the hobgoblin of little minds" - Emerson

Thanks Ben!  God bless!

Bill Miller :-)

C1-2 Quadriplegic with a 221 High Bowling Game

Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT

My blog: http://powerwheelchairusers.blogspot.com

Business website: http://www.ikanbowler.com

Personal website: http://www.lookmomnohands.net