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

From Vent to Diaphragmatic Pacing System -- Part II

In Part I, I explained why I changed my mind about becoming a Diaphragm Pacing System (DPS) user. Link to Part I . . .

After deciding that I want to become a DPS user, I took the next steps of contacting and meeting the surgeon to discuss my candidacy, obtaining necessary medical evaluations, and gaining insurance approval.

I met with Lawrence Lottenberg, MD, FACS, who performs surgery at Shands Hospital at the University of Florida in Gainesville. He thinks I'm a good candidate since I'm relatively young, healthy, and quite motivated. Because I'm on a blood thinner, Dr. Lottenberg said I'll need to be hospitalized for at least two nights: one night preceding surgery to thicken my blood, and one night after surgery to thin my blood back to a “therapeutic” level to prevent blood clots.

I needed to have my heart pacemaker and my phrenic nerve evaluated. My heart pacemaker has a dead battery and will be replaced with a completely new pacemaker. It's a demand pacemaker that only kicks-in if my heart rate falls below 60 beats per minute, which almost never happens. Consequently, there was some debate about whether I need the pacemaker, but since there’s no interaction between the DPS and the pacemaker, why not have it as backup? 

So I will have the pacemaker replaced by a cardiologist when I have the DPS surgery. The cardiologists said that it may take three days following surgery to get my blood back to therapeutic, so I'll probably spend three to five days in the hospital.

The phrenic nerve is the body’s natural way of stimulating the diaphragm for breathing.  A successful phrenic nerve test helps secure insurance approval for the DPS surgery.  But Dr. Lottenberg confirmed that the diaphragm’s ability to be stimulated cannot truly be assessed until the surgeon gets inside, and that the phrenic nerve test often yields false negatives. It can yield a positive, which indicates that my diaphragm is capable of being stimulated, but a negative test doesn’t eliminate the possibility for success with the DPS.

I had an appointment with a neurologist to test my phrenic nerve, but when he found out I had a heart pacemaker, he was not comfortable doing the test. Even though my pacemaker's battery is dead, he said, I still have leads going to my heart and he was concerned about stimulating my phrenic nerve under those circumstances.

After reporting that to Dr. Lottenberg and Dr. Raymond Onders, who pioneered the DPS, Dr. Onders said the neurologist could try stimulating my phrenic nerve only on my right side, to avoid possible interaction with the pacemaker. But that became a moot point when I learned that my insurance company "has now passed protocol for the DPS, thus no prior authorization is needed." That statement was told to Dr. Lottenberg's assistant by the hospital's financial group, and I’m waiting to get written clarification. My understanding is that the surgery will cost more than $20,000, and I don't want the hospital coming after me if my insurance doesn't pay for some reason.

Another insurance issue was trying to get my insurance company to state in writing that my level of nursing coverage would not be decreased when I become a DPS user. Currently I receive 44 hours per week of nursing coverage, and my family covers the remaining 124 hours. For them to cover more would be quite difficult.

I wrote to my insurance company to explain that even as a full-time DPS user, I would still be dependent on a mechanical device to help me breathe, and the rest of my care would essentially remain unchanged. However, the insurance company replied that a "clinical review" would be necessary to determine the level of care I need after I get the DPS.

I wasn't pleased with that reply until I spoke with a Florida friend who has the same insurance company and has been a DPS user for over five years. He told me that he receives 16 hours per day, 7 days per week, of nursing coverage, for a total of 112 hours. He also knows another DPS user with the same level of care and same insurance. Now I'm not concerned about a clinical review and we might even be able to increase my nursing coverage. (For anyone who might have the same concern, Dr. Onders said that no DPS user has had his/her level of insurance coverage decreased, and it shouldn't be an issue for anyone.)

I don't have a surgery date yet, and due to some caregiver circumstances, it now appears my surgery will have to wait until September, or even October.  No worries -- it will happen when it's meant to be.  Stay tuned for Part III about the surgery.

A PDF file of IVUN's newsletter is below; I'm on page 4 with a nearly identical version of what's written above (except for my probable surgery date / time frame; above is more accurate):

http://www.lookmomnohands.net/objects/IVUN-val2010-v24-3NpAll.pdf
 
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