Bowl-A-Thon to Help a Quadriplegic

We are having a bowl-a-thon fundraiser on February 8, 2014 to help keep my dear friend Rhonda Reese out of a nursing home for as long as possible. Rhonda has been paralyzed from her shoulders down since a car accident in August of 1991 when she was 25. And at age 47, a nursing home is not the best place for her to continue living as best she can (for one reason, high-level quadriplegics like us require quite a bit of physical assistance, and nursing home staff typically do not have the time to be able to provide the care that a quadriplegic needs, even if they have the desire to).

If you would like to help either as a bowler or sponsor/donor, or by spreading the word to others… please see this webpage with all the relevant information, and let me know if you have any questions:

http://www.lookmomnohands.net/Rhonda.htm

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

7 IKAN Bowler Users and a 23rd 200+ Game

At our central Florida Quad Squad outing on Saturday, September 14th, we had seven different power wheelchair users bowl with an IKAN Bowler.  The reasons for wheelchair use among the seven people include cerebral palsy, spinal cord injury, and spina bifida.  We also have had people with muscular dystrophy in our group, but not on that day.

Brenda, Julie, Lilian, Rhonda, Aaron, Doug, and I were the seven IKAN users.  If you're wondering how it works, the bowling alley typically has enough lanes that each wheelchair user can bowl on his/her own lane.  Most of us bowl 3-5 games in the roughly two hours that we are together with various family, friends, and our volunteer caddies who are now friends who have become like family.  We usually have a sizable group -- and we ALWAYS have a good time! :)

Bowling is always fun, whether the scores are particularly good or not.  A good score is subjective to the person bowling, but we all have a friendly competition for top score of the afternoon (my Dad started this by offering $20 for the top score -- if that score beats me; I'm not eligible as the prize money is supposed to be incentive for people to beat me and keep my "ego" in check, says my loving Dad:) and Aaron set the bar high with a really good 196 in his second game of the afternoon.

But my strike ball found its groove and I followed Aaron's 196 with a 205 to take the lead for the top score of the afternoon.  That was my 22nd game of 200 or better, so my caddy George tried to get a printout.  But my Aunt Jackie accidentally cleared my score before George could get the printout!  Jackie apologized and half-jokingly said, "you'll just have to do it again!"

That, of course, is MUCH easier said than done, but my strike ball was working well and I did break 200 again in the very next game, nearly matching the 205 with a 204.  So that's why the title of this post includes mention of a 23rd 200+ game -- for a person who happens to be a ventilator-dependent quadriplegic.  Here's my scoresheet:


 
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

Vent-Dependent Quadriplegic Bowls 21st 200+ Game

Many wheelchair users are not aware that a relatively new device exists that enables even people paralyzed from the neck down (like me) to bowl in a way that mimics the able-bodied bowling process.  The IKAN ("I can") Bowler® attaches to one's wheelchair and allows its user to setup, and then physically approach and release the ball upon stopping short of the foul line.  That's basically able-bodied bowlers do, and it's why the United States Bowling Congress sanctioned the IKAN Bowler® for league and tournament play, bowling with or against able-bodied bowlers and/or fellow IKAN users.

Using my IKAN Bowler, I had my 21st game of 200 or better on June 22nd, with a 213 in my first game of the day with our Quad Squad Bowling group.  Brenda, Melissa, Ben and I were the IKAN users that day, and we all had a good time as usual.  It was our first time back at what was Classique Lanes and is now Break Point Alley.  I opened with a turkey (three straight strikes) and that seemed to be validation that we made the right choice to return to the revamped bowling alley.

Here's my scoresheet, and additional commentary is below (click the picture to enlarge the scoresheet):

I followed the turkey with a 9-spare, then two more strikes, and knew I could/should break 200 unless I messed it up, which I almost did.  In my next two frames, the 7th and 8th, I missed spares I usually make.  I rebounded with a 9-spare in the 9th, which meant that a mark (spare or strike) in the 10th frame would result in 200+.  My strike ball worked twice more and I added 9 with the bonus ball in the 10th for a 213.

Just being able to bowl legitimately is fun, and I tell new IKAN users that having fun and striving to bowl personal best games are what I would try to do each time out.  I happen to have co-invented the IKAN Bowler, so I've bowled with it quite a bit, and my personal best is 255, which happens to be the overall world record for dynamic wheelchair bowling.  I'd love to break 255, but that's a really high score, and my goal each time out is to have a 500 series (three games with roughly a 167 average) because that's not easy, and takes quite a bit of quality bowling for IKAN users.

Our ball speed averages about 6 mph so we don't get nearly the "pin action" that most able-bodied bowlers do, so it takes excellent placement (and some luck) to get quite a few strikes in one game.  It takes at least a few consecutive strikes to give a person a good opportunity to break 200.  My average is about 155-160, so bowling 200 or better is fairly rare and special, which is why I keep track of the number of times I do it.

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

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

Meet Bill Miller (Video!)

I learned that people like blogs because they are like having a conversation with the author.  With that in mind, I recorded a 6-minute video to share some about me and to show some of what is possible as a high-level quadriplegic, even while requiring a ventilator:

Here's the direct link:
http://www.youtube.com/watch?v=DiVonbXUWcU

For the record, doing that video, I was thinking back to when I was newly injured and wondering what life might be like.  Hopefully the video will be encouraging to other people, especially other newly injured quadriplegics.

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

C1-2 Quadriplegic Is Engaged!

The purpose of this blog is to encourage and empower wheelchair users, which I primarily try to do by showing what is possible when people get involved with a fun, social, recreational sport like bowling.  The benefits of having success bowling can give the user confidence that can carry over to positively impact other areas of their life (so says therapeutic recreation experts).

However, one aspect of life that people who require power wheelchairs may feel like they have to forego because of their disability, is the prospect for love and potentially marriage.  While I never gave up on the possibility that I would find the right person for me, I knew that it would require a special person who could see past the wheelchair and accept the additional challenges that paralysis adds to having a relationship.

I eventually learned that what many women most want is someone who will treat them very well, give them plenty of positive attention via frequent communication, and to be loved unconditionally — by good guys.  A wheelchair doesn't prohibit that, and there are quite a few good guys who happen to be wheelchair users.

From a thousand miles away, I connected with the person that I believe God intended for me, with the help of the Internet and many thanks to God.  It was actually a blessing to meet from afar because it "forced" us to establish excellent communication, which is a huge key to success for any relationship (one reason why is because good communication builds trust, which is the foundation for a healthy relationship).

For many reasons, Lisa & I believe we are right for each other, but perhaps the most amazing thing about her and our relationship is that, all in all, she believes that the many positives in our relationship FAR outweigh the additional challenges.  I was hoping to find someone who was open to that perspective, if we connected well.

Well, Lisa & I share a tremendous connection and I'm gratefully blessed to share that we got engaged yesterday about sunset at a wonderful local park.  You can see some pictures HERE.  (I'm trying to keep this blog tone “matter of factual” but, I could not be happier about being engaged to Lisa!:)

I've been asked by a few wheelchair users about how to potentially develop a romantic relationship with someone, and my answer is that it should start with good communication.  If you find someone who enjoys communicating with you and vice versa, and especially on a daily basis, at the very least that sounds like a good friendship, and it could develop into more.  That's essentially the path that Lisa & I took, and I think it can work for others too — whether disabilities are involved or not.

I hope my story can be encouraging.

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

A New Record for People Who Use Sip-and-Puff Wheelchairs

Bill Miller's 224 and 15th 200 Game -- and 585 Series

At our Central Florida Quad Squad Bowling outing on January 28th, I bowled my highest score to date -- a 224 -- which is a new record for wheelchair users who operate their chairs by sip-and-puff (mouth control). I also bowled my highest series of three games -- 179, 182, and 224 for a 585 series -- and the 224 was my 15th game of 200 or better.

Many people have bowled that well before -- but I happen to be a C1-2 quadriplegic who is paralyzed from my neck down and ventilator dependent. And using an IKAN Bowler (which is legit because it's sanctioned by the USBC) I've now had a 200, four 201s, two 202s, a 203, 205, 206, 210, 212, 221, 223 and 224.

Here's the link to my scoresheet and commentary is below:

http://www.wheelchairbowlingrecords.com/Bill_Miller_224_Story_and_Scoresheet.htm

Peggy, Aaron, and I were the three Quad Squad Bowlers / IKAN Users on this day, and we were assisted by volunteer caddies from LovExtension (Connie, Pat, Nancy, and Linda, who caddied my 224 game:). Peggy did well, considering it has been a couple months since she bowled, and Aaron did well too, considering he was using a brand new ball for the first time. We all had fun -- it's always a festive environment with a combination of caddies, caregivers, family and friends cheering us on.

I started out very well, bowling a 179 in my first game, and having only two open frames (a frame with no spare or strike). I managed to stay hot in game 2, bowling a 182 with just one open frame.

So, after just three open frames out of the twenty frames in my first two games, I actually had two open frames halfway through my third game and was sitting on 77 after the 5th frame. That doesn't sound like a start that would beat my previous high game of 223.

But when you roll six-consecutive strikes, the score adds up fast! :-)

Bowling is always fun, even if I don't score so high. But my goal is goal is to have a 500 (or better) series each time I bowl, which is a 166.7 average (or better). That's pretty solid bowling, because such an average usually requires us to have 8 or 9 marks (spares and strikes combined) out of 10 frames. I say that because we have limited ball speed (6 mph) compared to able-bodied bowlers (adult males usually average 15-20 mph ball speed) and the difference equals less "pin action" at impact. That means it's harder for us IKAN Users to get strikes. So I was certainly blessed to get six in a row.

Though I'm quite happy to have bowled 224, a small piece of me is "kicking myself" because had I made the two single-pin spares in my first and 5th frames, and then finished how I did, my score would've been a 246 -- and would've topped Jon Musgrave's 243, which is the overall world record for wheelchair bowlers bowling dynamically (IKAN style).

See, wheelchair users can be competitive too.

All glory to God.

Bill Miller  :-)
C1-2 Quadriplegic with a 224 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

Vent-Dependent Quadriplegic Bowls a 212 and 14th Game of 200+

Recently at Quad Squad Bowling, I bowled my third highest score to date, a 212, which was my 14th game of 200 or better.  That's not bad, especially considering that I'm paralyzed from my neck down and use a ventilator to breathe.  I share this to show people, especially wheelchair users, what is possible.

If you're wondering how it's possible, the answer is called an IKAN Bowler, which is essentially a fancy bowling ramp that can attach to pretty much any wheelchair.  I'm actually credited with co-inventing the IKAN Bowler, and we got it approved by the United States Bowling Congress (USBC) for league and tournament play -- any league or tournament, anywhere -- bowling with and/or against able-bodied bowlers or fellow IKAN Users.  Of course IKAN Users can also bowl just for fun, recreationally, too.

You can download my scoresheet as a PDF file (if you cannot open it, download free Adobe Reader HERE).

My strike ball was working well that day, but I had an unusually difficult time picking up spares (which is to say that I missed quite a few "easy" spares that I usually convert) especially in the first game.  I managed to bowl a turkey (i.e. three consecutive strikes) which helped me to a 161 in my first game, despite having just one spare.

My second game was the 212.  My strike ball continued to work well as I had another turkey and two non-consecutive strikes also.  I did much better with my spare attempts in game two, converting all five, including in the tenth frame.  I was particularly pleased with that spare pickup because had I missed it, I would've had a 202 -- for the third time.

I'll always be thrilled with any game of 200 or better -- and it's fun to bowl even if the scores aren't so high -- but I really wanted a score that I hadn't bowled before.  So picking up the spare in the tenth frame, and following it with 9 pins with the extra ball, that gave me a 212.  I've now had a 200, four 201s, two 202s, a 203, 205, 206, 210, 212, 221 and 223.

My third game was not-so-good, especially compared to what I'd just done.  Not to make excuses, but I had four splits and also missed two single-pin spare attempts.  That resulted in a 136, which I couldn't possibly end on, so I bowled a fourth game -- which could have been my 15th game of 200 or better.

Game four was good -- I actually had four consecutive strikes.  So I was certainly in good position to break 200 again, but in the tenth frame, I started my ball out too wide and it didn't come back into the headpin enough.  That left me with a difficult spare attempt (4-5-7-8; you can see the setup on the scoresheet) which requires perfectly splitting the 4 & 5 pins, and hoping the 7 & 8 will fall also.  I very nearly split the 4 & 5, just barely missing the 5 pin (the ball is just a bit bigger than the space between the two side-by-side pins, but a very accurate shot is required to get both pins).  And so I ended with a 195.

All in all, it was a whole lot of fun.  I thank my fellow bowlers, caddies, and everyone who was cheering me on, and also those who helped make it possible for a vent-dependent quadriplegic to not only go somewhere, but to physically and fairly compete in a sport.

I'm grateful.

All glory to God.

Sincerely,
 

Bill Miller :-)

C1-2 Quadriplegic with a 223 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: Aaron Parker, Florida

Aaron Parker has had a lot of fun learning to bowl and improving his game over the last couple of months.  My new friend and fellow Central Florida Quad Squad Bowler, Aaron's first game IKAN-style was a 101 on September 10th, which is a good first game.  In his second, he had a 124!  Not bad for a person who has been paralyzed as a C7 quadriplegic for the last 30 years.

But Aaron was using a house ball, and the problem with that is every time you go bowling, you have to learn how the borrowed ball is going to curve with the different positions we can set it up in (each ball is different).  So Aaron purchased a used house ball, which I think is quite smart because you can test as many as you want until you find one that works well for you.  And Aaron worked his way up to a high game of 144 -- until our latest Quad Squad outing.

On November 19th, Aaron started out with a 125, then had a 132, and then he got on a roll with a 156 -- a new personal best.  But he wasn't done!  He kept making quality shots and in game four he actually bowled a 179!  His scoresheet is HERE.

What was particularly impressive is that Aaron had only one open frame (a frame without a strike or spare) in his 179 game, and the open frame was a split.  Not only that, but just before Aaron bowled his 179, I bowled a 170, and Aaron needed to pickup his spare in the 10th frame, or he would've finished with a 169 (we Quad Squad Bowlers have a friendly competition for high score when we bowl).  I was happy to see Aaron bowl so well, even though he beat me.

Here are Aaron's profile answers:

Name: Aaron Parker
Age: 56
Location: Umatilla, Florida
Reason for Wheelchair Use: C-7 Quadriplegic
Onset or Injury Date: 7-1-81
Wheelchair Operation Method: Joy Stick
High Bowling Score: 179
Approx Bowling Average: 125
Typical Range of Scores: first 9 weeks: 100-130; last two weeks: 125-179
Bowling Frequency: Once a week
Bowling Ball(s):  Used house ball 15 lbs. 11 oz.
Quote from Aaron: "God has truly blessed us wheelchair users with good enjoyment through Bill and Claude's invention of the IKAN Bowler.  Thanks!"

Thanks Aaron -- keep up the good work!

Bill Miller :-)
C1-2 Quadriplegic with a 223 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

Our IKAN Bowler on Extreme Makeover: Home Edition!

My friend, MGT partner, and IKAN Bowler co-inventor Claude Giguere, will help a young adult wheelchair user bowl IKAN-style on the "Keefer Family" episode of Extreme Makeover: Home Edition -- this Friday, October 21, from 8-10 p.m. Eastern on ABC.

Edit: you can watch both parts online at these links: Part 1 and Part 2.

From the show's website: "Keefer Family -- The team helps build a home for the family of a man who quit his job to take care of his paralyzed adult son."

If you're new to my blog, the IKAN ("I can") Bowler is an empowerment device for wheelchair users, even power / electric wheelchair users.  The IKAN Bowler is sanctioned by the USBC for league and tournament play -- bowling with and/or against able-bodied bowlers or fellow IKAN Users.  It's therapeutic, recreational, and a genuine thrill to be able to get a spare or strike for someone who cannot pickup a heavy bowling bowl (i.e. power wheelchair users like me).

We have video on our website, and two sets of pictures from Quad Squad Bowling outings are linked from an earlier blog post.

Essentially ANY wheelchair user CAN BOWL with the IKAN Bowler, regardless of driving method or reason for wheelchair use (SCI, MD, CP, amputee, etc).

See record scores in various categories HERE.

Something you might not realize is there are entities to which tax deductible donations can be made that can help wheelchair users be able to bowl IKAN-style.  Contact my partner Vincent Tifer (vincenttifer@ikanbowler.com) for details.

God bless!

Bill Miller :-)
C1-2 Quadriplegic with a 223 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

Quad Squad Bowling Photos 2011-07-10

We had five IKAN Users, myself included, at Quad Squad Bowling on July 10th.  Youth Group members from First Baptist Church of Umatilla caddied for us.

You can view the photos on Facebook HERE (a Facebook account is not required).

For details about Quad Squad Bowling and photos from an earlier outing, click HERE.

Thank you to everyone who helped make it fun & memorable -- and God bless!

Bill Miller :-)

C1-2 Quadriplegic with a 223 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

Quad Squad Bowling

Our "Quad Squad" is a group of mostly power wheelchair users who get together in Central Florida and bowl (usually twice a month) using the IKAN Bowler.  (The IKAN Bowler is an empowerment device that attaches to the front of almost any wheelchair -- it's fun, therapeutic, and legit: www.ikanbowler.com.)

We usually have between 3-5 IKAN Users bowling, and have had eight at one time.  Since we bowl regularly, a non-profit organization called LovExtension (www.lovextension.com) provides caddy help for us bowlers, which gives our caregivers a chance to relax and cheer us on.

See pictures of a Quad Squad outing for free on Facebook or Shutterfly (no account required to view them from either entity).

Here are record scores for various categories of wheelchair users:

http://www.WheelchairBowlingRecords.com

The name "Quad Squad" isn't trademarked or anything, and anyone reading this could start their own Quad Squad group in their area.  No worries.

We typically bowl twice a month: on the 2nd Saturday of each month at Classique Lanes in Tavares, and on the 4th Saturday of each month at Spanish Springs Lanes in The Villages (addresses below).  We bowl from roughly 4-6 p.m. 

When it's bowling week, I send an email to my Quad Squad Bowling list (I'll add anyone who wants on) to remind and affirm when and where we plan to bowl (I occasionally share additional items I believe are noteworthy also).

Most importantly, Quad Squad Bowling is a WHOLE LOT OF FUN! :-)

If you'd like to join us sometime, contact me via my website (www.lookmomnohands.net).  We usually have an IKAN Bowler available for someone to borrow!

Here are the addresses for where we usually bowl:

CLASSIQUE LANES (Bowling Center)

15026 Classique Lane

Tavares, FL 32778

352-343-5333

SPANISH SPRINGS LANES

997 Alverez Avenue

Lady Lake, FL 32159 (Lady Lake/The Villages)

352-750-9440

Thanks for your interest 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

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

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

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 1

I, Bill Miller, am paralyzed from the neck down and ventilator dependent due to a high-level spinal cord injury (SCI) that I incurred in August of 1997.  Though I learned of Synapse Biomedical's NeuRx Diaphragm Pacing System (DPS) several years ago, I didn't feel like it could do much to improve my quality of life.  I actually thought it would decrease my quality of life, primarily because the DPS doesn't allow the user to initiate breaths.  Why is that important?

My voice is my primary tool to the world, so the better my speech, the better my quality of life.  Using a Passy-Muir (Speaking) Valve (PMV), I have nearly continuous speech while receiving 13 breaths per minute (BPM) at a volume of 900 cc (just less than half of a two liter soda bottle).  However, sometimes I do "run out" of air to speak with, before I finish my thought.  Fortunately, there are a couple of ventilator settings that enable me to initiate another breath, with just a slight "shrug" of my shoulders (I use my neck muscles to pull my chin down and chest up a little; that’s also how I can breathe when disconnected from the ventilator).

Initiating a breath enables me to shorten the pause in between "scheduled" breaths and continue speaking.  The DPS doesn't allow users to initiate breaths, hence my initial thought that it would decrease my speaking ability and thus my quality of life.  But there's a simple fix: just increase the breath rate.

I'm told that my volume when stimulated to breathe by the DPS should be around 800 cc, so with 14 or maybe 15 BPM, my guess is I won't need to initiate any breaths.  That's what I suspect I'll want during the day when I'm speaking, and I can decrease the BPM for sleeping.

I was also leery about only having battery power for the DPS.  It's comforting to know I have unlimited vent time when plugged-in to a standard outlet, but to also know I have batteries for my vent that give me roughly 12-14 hours on a full charge, and charge simply by being plugged-in.  But I have a friend who has used the DPS essentially 24/7 for over five years, and he hasn't had any issues with the batteries.

With those issues "solved" in my mind, I began to think how I could benefit from the DPS. 

* * * * *

I've heard DPS users' senses of smell and taste both improve, though I cannot imagine certain foods tasting any better than they do now (I enjoy eating:).  And I can smell fairly well when I actively try to take air in through my nose (and selective smelling can be a good thing!:).  So those are minimal benefits for me personally, but here are several that are not.

The biggest benefit I hope to gain from the DPS is being comfortable enough with it to remove the ventilator and vent tray from my wheelchair.  Actually, I'm in need of a new chair (this is my original chair, which is over 12 years old) and I would like to get a chair that can stand me up, so that I can both view the world from my natural height, and bear my weight much more frequently than I do now.  Bearing weight is highly beneficial for one's bones and entire body, I'm told.  Plus, I do speaking engagements, and plan to teach at the community college level upon completing my master's degree -- and how cool would it be for a quadriplegic to be able to stand up when speaking?

Not having a ventilator on my chair would also enable me to maneuver in tight spaces more easily.  And I could drive my wheelchair while standing -- I'd love to roll upright across the stage when I graduate (I rolled seated across the stage for my bachelor's degree, which can be seen on my website HERE).

The DPS would definitely improve my speech quality in bed, because it would be like using a speaking valve all the time.  (The PMV is a fantastic little one-way valve that enables one to take in air easily through one's trach, but seals off in the exhale direction, thus enabling the user to have air around his/her vocal cords even when the vent isn't giving a breath, which allows for more continuous speech.)  I don't currently use a speaking valve in bed because the valve tends to dry out my airway, so in bed, I re-humidify my airway.

Another benefit would be that the DPS should allow me to either cap my trach or use a small speaking valve, either of which would make getting dressed a bit easier, and also would make wearing certain clothes MUCH easier.  Right now, with the vent circuit attached to my trach, it protrudes about 1.5 to 2 inches, which makes wearing some dress shirts or a tie quite difficult.

I could also potentially wear a turtleneck or mock-turtleneck, which I cannot currently do (because they put pressure on my trach and stoma), and they could hide my trach altogether.  I'm not self-conscious about my trach or general appearance, but that would obscure a sign of my disability, which would be good because I try to not let my disability define what I can do -- despite being paralyzed from my neck down, I still feel like I have the ability to accomplish quite a bit (I thank the Good Lord for blessing me with good support systems).

Some DPS users have even had their trachs removed entirely.  Even if I'm able to build up to 24/7 DPS use, it would take me a while to even consider having my trach removed.  That's a big step -- that maybe I'll get to consider in six months or a year.  That said, my on-vent quality of life is high (many thanks to a CoughAssist machine, which you can read about on my website HERE) so I won't be too disappointed if I'm not able to use the DPS.  No worries!

This is the first of (hopefully) five entries I've been asked to submit for the International Ventilator User's Network (IVUN).  If all goes well with my efforts to become a DPS user, then here are the proposed entries: Column 1 (April 2010) Why I'm seeking a DPS; Column 2 (June 2010) Candidate screening / pre-surgery requirements; Column 3 (August 2010) DPS surgery; Column 4 (October 2010) Post surgery use; Column 5 (in 2011) Extended use.  IVUN's website is www.ventusers.org.

A PDF file of IVUN's newsletter is below; I'm on page 5 with a nicely edited version of what I wrote above:

http://www.lookmomnohands.net/objects/IVUN-val2010-24-2Nsec.pdf

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

Vent-Dependent Quadriplegic Bowls 10th 200+ Game

I, Bill Miller, am paralyzed from my neck down and ventilator-dependent, yet I recently bowled my 10th legitimate game of 200 or better. I state that not to brag, but to help drive home the point that ANY WHEELCHAIR USER -- who can safely operate his/her wheelchair -- CAN BOWL in dynamic fashion with the IKAN ("I can") Bowler®.

I've now bowled a 200, four 201s, two 202s, a 203, 206, and 221, which is my personal record and the current record for a male who drives his chair via sip-and-puff. What makes the scores legitimate?

The IKAN Bowler® was sanctioned for league and tournament play -- any league or tournament any where, bowling with and/or against able-bodied bowlers or fellow IKAN Users -- by the United States Bowling Congress (USBC).

The USBC sanctioned the IKAN Bowler® because IKAN Users emulate the able-bodied bowling process, i.e. setup, then physically approach and release the ball while stopping short of the foul line. This is considered "dynamic" bowling because executing each shot involves the moving wheelchair. We state this to distinguish dynamic wheelchair bowling from stationary-ramp bowling.

There's nothing wrong with stationary-ramp bowling (and the IKAN Bowler® is great for stationary-ramp bowling) but that's essentially a different sport than dynamic wheelchair bowling, which is equivalent to traditional, able-bodied bowling.

* * * * *

My most recent 200+ game was my 4th 201.

I started off well with a spare, then a strike, and three more spares. Then came a turkey (three consecutive strikes) over my 6th, 7th, and 8th frames, followed by a spare in the 9th.

At this point, I had 184 plus whatever I bowl with my first ball in the 10th. So with a decent/good count (for example 8 pins) with my first ball, I'd have 192 in the 9th, and 200 in the 10th -- PLUS the opportunity for a spare (two more points) and an additional ball (likely 7-10 more points). Therefore, if all that happened, I most likely would've added an additional 17-20 points to my 9th frame score (so with the hypothetical 192, I was looking at potentially scoring 209-212).

The hypothetical 8 pins became 8 real pins and I had 192 in the 9th.

The problem is I was left with a nasty 4-10 split, which is extremely difficult to pickup. I tried, but got only the 4-pin and thus finished with a 201. I was really hoping I'd bowl a score I hadn't before (something in the range of 209-212, like I mentioned above) but it wasn't meant to be. No worries.

ANY score of 200 or better is something to be quite happy about -- and I am! :-)

The scoresheet for my 4th 201 and 10th 200+ game is HERE.

If you're curious, my 221 story & scoresheet are HERE.

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