Belated Thanksgiving Thoughts

It's still November and I want to use this blog entry to share some belated Thanksgiving thoughts.  I especially want to mention how grateful I am for the many blessings that the Good Lord has given me.

Yes, I'm a quadriplegic, and yes, I'm ventilator dependent, but I'm also blessed in many ways.  I'm thankful to my family because I'm able to live at home (and not in a nursing home).  I have no pain (some people and some quadriplegics in particular have a tremendous amount of pain).  Despite quadriplegia, I have meaningful things I can still do and have been blessed to be able to achieve quite a bit, and I have a good life, which I share some about in this six-minute "Meet Bill Miller" video on YouTube:

http://www.youtube.com/watch?v=DiVonbXUWcU

I have learned that we're all blessed in different ways, and that regardless of how tough a situation may seem, there's always someone in a tougher situation.  A good friend of mine, Rhonda Reese, is also a quadriplegic, but she's blessed to not be vent-dependent.  She too has also been blessed to be able to live at home throughout the duration of her paralysis, which has now been for over 21 years.  But she recently lost both of her parents, and may need to move to a nursing home.

We're going to setup an online donation page for Rhonda, to help keep her out of a nursing home for as long as possible.  And I'll be sharing more about Rhonda's situation on this blog.  But the point here is that we all have blessings that we should not take for granted.

Since becoming a quad, I've learned that good health is relative.  Almost everyone has some type of health issue, whether it's a bad knee, frequent headaches, or something more serious.  But if it's bearable and we're in decent shape otherwise, I'd call that relative good health.  Cherish your (relatively) good health and cherish your loved ones, for they are two of the most precious blessings we can have.

"There but for the grace of God go I."

May God bless us all -- and may we continually appreciate His blessings.

Sincerely,

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

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

Another New Record for Wheelchair Bowlers with Muscular Dystrophy!

My friend and fellow Quad Squad Bowler, 17-year-old Alex McDonald topped his previous best (192, link below) with an impressive 195 at our recent Quad Squad outing. In doing so, he raised the bar for others with Muscular Dystrophy (MD) and increases his World Record for Dynamic Wheelchair Bowling for Bowlers with MD.

And he humbled me in the process! See, Alex and I -- and all of the Quad Squad -- have a friendly rivalry, and compete for top score of the day. But neither I nor any other Quad Squad Bowler could keep pace with Alex a few weeks ago. (And if you read previous blog entries about my poorly driving wheelchair, it is fixed and that wasn't the problem; I just struggled for some reason.)

I want to highlight a few points about Alex's scoresheet (which is linked below) in particular, his final three games (the first game was a warm-up and he had splits-itis).

In Alex's final three games, his average score was 182.33 and he averaged 8.33 marks per 10 frames. In those three games, i.e. 30 frames, Alex only had a total of three frames in which he had non-split open frames (splits are indicated by a circle on the scoresheet). In theory, every non-split (that isn't a strike) becomes a spare attempt that a "really good bowler typically converts."

Alex converted 2 of 3 in his second game, 4 of 5 in his third game, and 5 of 6 in his fourth game. And just for the heck of it, Alex converted two splits into spares (one of them was the nasty 6-7-10, which he converted beautifully; ok, I just checked the scoresheet and it shows no converted circled-7, which means the machine scored inaccurately, which can happen if a pin moves far enough from its usual position without falling over, or it was the 6-10 split, which is converted the same way as the 6-7-10 -- BUT it doesn't really matter because that was in game four, not Alex's MD record 195 game; click HERE to see a 6-7-10 split setup and how Alex converted it).

Altogether it was some high quality bowling by Alex -- AND great to see -- especially since Alex is about to start varsity bowling for his high school! The IKAN Bowler® is sanctioned for league and tournament play by the USBC, so Alex can compete with his able-bodied classmates on their varsity bowling team.

I hope the high quality bowling Alex demonstrated below continues and/or improves when he's in high school competition.

If you'd like to see Alex's previous high of 192, click HERE.

Alex's latest record (195) scoresheet is HERE.

GREAT JOB ALEX! :-)

Bill Miller :-)
C1-2 Quadriplegic with a 206 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

New Website for Wheelchair Bowling Records!

The IKAN ("I can") Bowler can enable virtually any wheelchair user to bowl dynamically (involving the movement of the wheelchair; not stationary ramp bowling) and the sport of dynamic wheelchair bowling is legitimate, says the United States Bowling Congress (USBC). The USBC sanctioned the IKAN Bowler for league and tournament play -- any league or tournament anywhere in the U.S. -- bowling with and/or against able-bodied bowlers, or fellow IKAN Users.

Since the IKAN Bowler is the only wheelchair bowling device sanctioned by the USBC (which is a merger of the Women's International Bowling Congress and the American Bowling Congress) for league or tournament play, records achieved bowling dynamically with an IKAN Bowler are indeed legitimate world records for wheelchair bowling. Here's the website that shows the current master list and explains more if you're curious:

http://www.WheelchairBowlingRecords.com

You may have noticed that some links in previous blog entries go to the new website. If you're wondering how that is possible since this website is new, it's because I went back and updated those links after creating the above website. I thought the records should have a more legitimate Internet space on their own website, instead being on my personal website.

We look forward to increased competition and the setting of new records!

Bill Miller :-)
C1-2 Quadriplegic with a 206 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/

Five Things to Know about Power Wheelchair Bowling! :-)

#1. Virtually ALL power wheelchair users can use an IKAN Bowler for real, dynamic bowling. (Wheelchair users, IKAN? Yes You Can!:)

How can virtually all wheelchair users bowl? The IKAN Bowler attaches to the user's wheelchair, and is designed so that anyone who can safely drive their chair, can bowl. It's basically a really well engineered attached ramp system -- the momentum from driving forward and stopping releases the ball. We have two types of mounts: Universal and Center-Post. The Universal Mount can accommodate any wheelchair with two side legrests (traditional or sport style legrests; not power elevating -- but people with power elevating legrests can use a set of regular legrests when bowling). The Center-Post Mount is a custom mount designed for newer chairs with the legrest system that has the foot pads coming off the single center post. Between those two mounts, we can accommodate the vast majority of wheelchairs on the market and in use today.

What makes it real bowling? The United States Bowling Congress (USBC) sanctioned the IKAN Bowler for league play -- any league, anywhere in the U.S. -- bowling with and/or against able-bodied bowlers, or fellow IKAN Users. The USBC sanctioned it because the process mimics the able-bodied bowling process, i.e. setup, physically approach and release the ball upon stopping at the foul line. This is referred to as dynamic bowling, not stationary ramp bowling.

Who bowls and what are top scores? Thus far we've had people with Muscular Dystrophy, Cerebral Palsy, and Spinal Cord Injury, driving their chairs with different methods (joystick, sip-and-puff, head control and chin control) achieve scores of 150 and higher. The overall record is 243 by a spinal cord injured C4-5 quadriplegic in Colorado named Jon Musgrave. Click HERE for our message board thread with additional records.

#2. The IKAN Bowler is considered therapeutic medical equipment, and as such, financial assistance is available in most every state. One customer ONLY had to pay the SHIPPING cost for an IKAN Bowler! Click HERE to contact us for details!

#3. For $599 the IKAN Bowler with Universal Mount can be purchased and delivered anywhere in the continental United States. There's no sales tax for residents outside the state of Florida and shipping is included to the continental U.S. We can ship worldwide, click HERE to contact us for a shipping quote.

#4. Our mounts work with both the IKAN Bowler and IKAN Soccer Guard, enabling users to compete in two sports! Our quality mounts actually reinforce the legrests, especially compared to most existing mounts for power soccer. We have the best power soccer equipment available anywhere. Power soccer is already a popular sport being played lots of places. Click HERE for details.

#5. You've got to see it to believe it -- click HERE for links to two videos and a slideshow on power wheelchair bowling -- it's social, therapeutic, recreational, allows for legitimate competition, and it's a whole lot of FUN! :-)

Sincerely,

Bill Miller :-)
C1-2 Quadriplegic with a 202 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/

Introduction -- emPOWERing Wheelchair Users! :-)

Welcome to my blog! :-)

I'll cut to the chase -- this blog will illuminate how power wheelchair users are getting back in the game of life.

I'm one such power wheelchair user.

My name is Bill Miller; I'm a ventilator-dependent quadriplegic due to a spinal cord injury incurred August 23rd, 1997. I'm diagnosed as a C1-2 (complete) quadriplegic -- and I have a legitimate 202 high bowling game.

Several years ago, I wanted to get back in the game of life, but there really was no way, no sport or recreational endeavor that I could actively participate in. But I can operate my power wheelchair independently (with my mouth) via what's called a sip-and-puff system (I'm paralyzed from the neck down). My Stepmom saw how well I could drive my wheelchair, and absolutely knew there must be some way that I could bowl, using my chair.

She eventually got me together with a retired engineer named Claude Giguere (pronounced: G-gair). The two of us got together and invented a really cool way for me to bowl, and if someone who is completely paralyzed from the neck down (like me) can bowl -- shouldn't virtually any wheelchair user also be able to bowl?

That idea -- and the genuine desire to improve the quality of life for people whose bodies require them to use power wheelchairs -- is now embodied in a company called Manufacturing Genuine Thrills, Inc. doing business as MGT (for short). That first strike is a genuine thrill. The name for the bowling device comes from a Greek word, ikano, meaning enable. What enables me and can enable virtually all power wheelchair users to bowl is the IKAN Bowler®.

Wheelchair users: IKAN? Yes You Can! :-)

When developing the IKAN Bowler (which really started back in 2003) another sport for power wheelchair users was starting to blossom -- power soccer -- which is already pretty popular. But after doing some research, we learned from power soccer players that the only commercial soccer guard (a 3-sided shield that protects the user's legs and enables him or her to push an extra-large soccer ball) available, that using it occasionally resulted in damage to their wheelchairs (it used a single clamp to attach the guard to one of the user's legrests, and while there aren't supposed to be any collisions playing power soccer, if one did occur, sometimes the legrest would break off from the wheelchair).

In developing the IKAN Bowler, by far the most challenging aspect was developing an easy, quality mounting system that could fit multiple styles of wheelchair. We developed (and have a patent pending on) a Universal Mount that will work on every wheelchair with two side legrests (not power-elevating legrests, users with those can get a set of standard legrests to use for bowling/soccer; we also have a mount that accommodates chairs with the new center-post style legrests). So we developed the IKAN Soccer Guard to work with our Universal Mount (it also works with the center-post mount). The quality two-clamp system is able to withstand any reasonable collision. We repeatedly rammed a brick wall with the IKAN Soccer Guard and Universal Mount attached to a manual wheelchair (used for testing purposes) and we couldn't break the guard or the legrests. True story. (The center-post style is even more crash resistant.)

The beauty of our mounts is that with the IKAN Bowler attachment and the IKAN Soccer Guard attachment, people can do two sports (not at the same time, of course:). We're quite proud to be able to offer the ability to play two sports to people with significant physical disabilities that require the use of power wheelchairs -- including people with Cerebral Palsy, Muscular Dystrophy, Spina Bifida, Spinal Cord Injuries, Quadriplegia, Multiple Sclerosis and more.

Medical experts and IKAN Users have said using our products is fun, social, therapeutic, competitive, and recreational.

The world record holder for bowling by a quadriplegic is Jon Musgrave, a C4-5 quad due to a spinal cord injury in 1991. Jon bowls anywhere from 3-5 days a week, and bowled an amazing 243. He said: "Who could have thought that one thing could change a person's life so much. I have something that I'm good at to look forward to enjoying every day; something I can share with my family and fiends. I can tell you this for sure, my life has not been the same since I got my IKAN Bowler®."

That's how we're getting power wheelchair users back in the game of life.

With this blog, I plan to tell you more about Jon, and others like Jon. I want to profile people who think life is better with the IKAN Bowler. I'll bring some IKAN Soccer Guard news here also, but our primary product is the IKAN Bowler. There is no other assistive bowling device that enables users to mimic the able-bodied bowling process, i.e. setup, begin the approach and release the ball upon reaching the foul line.

The IKAN Bowler attaches to the user's wheelchair. A caddy places the ball atop the IKAN Bowler, as the user instructs (how the finger holes are positioned determines the shape of the shot). The user's knowledge of the ball, plus where the user sets up, then drives forward, turning the chair slightly left and right (aiming the shot) as necessary when approaching the foul line, and finally braking the wheelchair which sends the ball down the IKAN Bowler -- that is what determines how well we bowl.

The United States Bowling Congress (USBC) declared that process and the IKAN Bowler acceptable for league play -- any league anywhere in the U.S. -- sanctioning it for competition with and against able-bodied bowlers or IKAN Users.

Ok, that sets the foundation for this blog. I'll be back soon with the first profile and story about an IKAN User. I am also in school via the University of Florida's online business program (bachelor's degree) which takes up quite a bit of time, but I'll have at least one blog entry each month.

Our IKAN products are available right now for shipping anywhere in the world (shipping to the continental United States is included in the price, but we can ship anywhere).

Anyone who may be interested, ABSOLUTELY MUST READ my next post about a PRICE BREAK on our products (click HERE!:).

Thank you very much for your interest! :-)

Sincerely,

Bill Miller :-)
C1-2 Quadriplegic with a 202 High Game
Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT
Business website: http://www.IkanBowler.com
Personal website: http://www.LookMomNoHands.net
Blogger: emPOWERing Wheelchair Users!