Vent-Dependent Quadriplegic Earns Master's Degree

My blog is about empowering wheelchair users, and I hope that by sharing that I recently graduated with a Masters of Entrepreneurship from Western Carolina University, perhaps others will be encouraged to pursue additional education or whatever they desire.  I finished my Bachelor's degree and earned my Master's online in accredited degree programs.  If it helps to provide further encouragement, in every course since becoming paralyzed, I earned an A grade.

Lori Carter, a freelance writer for the Orlando Sentinel, did a story on my graduation and some of my activities.  The story was fairly long and the Sentinel chose to break it up into two smaller articles.  Here are the titles and links...

Overcoming disability, Leesburg resident Bill Miller earns master's degree:
http://www.orlandosentinel.com/news/local/lake/os-lk-bill-miller-quadriplegic-graduation-20130529,0,6799500.story

Quadriplegic Bill Miller doesn't let disability slow him down:
http://www.orlandosentinel.com/news/local/lake/os-lk-sidebar-bill-miller-quadriplegic-graduation-20130529,0,5074569.story

Philippians 4:13 (NIV) "I can do all this through him who gives me strength."

All glory to God, and God bless all!

Bill Miller :-)
C1-2 Quadriplegic with a 255 High Bowling Game
Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT
Business website: http://www.ikanbowler.com
Personal website: http://www.lookmomnohands.net

New Overall World Record for Dynamic-Style Wheelchair Bowling

Vent-Dependent Quadriplegic Bill Miller Bowls a 255 in a 674 Series

I, Bill Miller, am blessed to have actually bowled a 255 and 245 in consecutive games in a 674 series.  The 255 is the new overall world record for dynamic-style wheelchair bowling, and the record for wheelchair users with spinal cord injuries, and also for sip-and-puff wheelchair users.  And, yes, I am paralyzed from my neck down and also a fulltime ventilator user.

For other categories of wheelchair bowling records, click HERE.

For the scoresheet, pictures, and details of my new records, click HERE.

Thanks and God bless!

Bill Miller :-)

C1-2 Quadriplegic with a 255 High Bowling Game

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

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

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

Results of My Surgeries: Healthy but No DPS

For more on my surgeries, see this this blog entry.

Ultimately our trip for my surgeries was successful, though not as successful as hoped.

The primary successes from my surgeries were: replacing my cardiac pacemaker, getting x-rays of my chest and neck (that I was given to view on CD) and having actual outpatient surgery for my procedures (no overnight stay required, which limited my chances for infection; I just had my three-weeks post-surgery follow-up appointments, and I've healed well with no infections -- thank you God!).

Missing from that success list is implementation of the Diaphragm Pacing System (DPS).  Even when inside my chest, with the electrodes placed on my diaphragm, my diaphragm wouldn't fire when stimulated by the DPS.  My surgeon, Dr. Michael Cheatham, tried everything -- even calling DPS inventor Dr. Raymond Onders (who trained Dr. Cheatham to do the DPS) for additional suggestions.  It wasn't meant to be.

No worries.

Though I could have received several benefits from the DPS, I stand by my statement that I already have a high quality of life and I'm not limited by the vent in the most important ways: speech quality and infections.

For a quadriplegic like me, my ability to talk well is of extreme importance.  And if you've heard me talk in person or via phone, I think you'll agree that I speak well and typically clearly, at an appropriate volume (when well hydrated) and with little pause between breaths (thanks to a speaking valve, and due to the ability to initiate another breath sooner than programmed and also receiving fairly large breaths).  With the DPS, I was concerned about matching that quality because breaths cannot be initiated with the DPS and the size of breath is smaller than what I receive via vent (quite possibly 30% smaller for me).  That could have been mitigated by increasing my breath rate on the DPS, but only doing it could answer that question.

Also, my lack of significant respiratory infections for a vent user is fairly uncommon, and is represented by zero respiratory-related hospitalizations in the 13.5 years since I was discharged from my initial hospitalizations and rehab (knock on wood and thank you God).  I'm certainly not saying that my number of infections would have increased on the DPS (it could have, because I'm breathing through 3 filters on the vent, and would have one filter at most on the DPS) but it's hard to beat zero in 13.5 years.

I'm not trying to disparage the DPS; I have two friends in particular who are benefiting significantly from the DPS, and I wanted to try it and potentially benefit from it.  But I don't want anyone reading this to think that life with a ventilator is a necessarily bad.

If my diaphragm would have fired when stimulated by the DPS, I would've continued to embrace the challenge of becoming a successful DPS user.  But that is/was a very significant challenge (especially when considering everything altogether) that included learning and teaching my caregivers different ways of providing for my needs (for example, it would've placed a port on my stomach where the DPS connected that would've required care, and careful bathing around, etc).  Point being, I think that we (as a team) are already good at life with a ventilator, and largely see it as not that big of a deal.

If interested, I could expand on a lot of these points and others.

No worries 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

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

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

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

IKAN User Profile: Bill Miller, Florida

Most of the previous blog entries were to set the foundation with all the background info about power wheelchair bowling, power soccer, and how our products can empower wheelchair users (scroll down or click HERE for Five Key Things to Know). Now I want to start profiling people who think life is better as an IKAN User.

To kick this off, since I haven't established a format yet, I'm going to start with me and get my profile out of the way.

~~~~~

Name: Bill Miller
Age: 30
Location: Central Florida (Leesburg)
Reason for Wheelchair Use: Spinal Cord Injury (SCI) at C1-2 level
Onset or Injury Date: August 23rd, 1997
Wheelchair Operation Method: Sip-and-puff
High Bowling Score: 202 (twice achieved)
Approximate Bowling Average: 155
Typical Range of Scores: 130-180 (I'm NOT the most consistent!:)
Bowling Frequency: Typically twice a month for Quad Squad outings (scroll down or click HERE for Quad Squad info; I'd like to bowl more, but my current schedule won't allow it)
Bowling Ball(s): Columbia White Dot (very economical)
Quote from Bill: "Life doesn't have to be a spectator sport -- even for people with significant physical challenges."

~~~~~