ER Reaction

I can’t believe that it’s been two weeks since that powerful and extremely moving ‘ER’ episode entitled ‘Body and Soul,’ guest starring James Woods.  I must congratulate NBC, the producers and writers of ER, all the actors, specifically James Woods and the ALS Association.  It’s quite an undertaking to portray the progression of a person with ALS in a one-hour episode less 15 to 20 minutes of commercials.

I know I have a slow progression of ALS, but I’ve been around long enough to see all stages of this disease.  I simply don’t believe they could have done a better job of educating the public in such a short time.  The episode included such details as assistive communication technology, noninvasive ventilation (BiPAP), DNR orders, emotional incontinence, slurred speech and the possible range of feelings, one with ALS might experience.  I’m sure I even left out a few.

The caregiver role was addressed, but just barely.  To be honest, that could be a whole other episode.  At least they showed her in the early stages as young, energetic and vibrant.  At the hospital, she wore no makeup, had tousled hair with bags under her eyes.

I thought it was very clever to use flashbacks in order to view the progression of ALS with James Woods’ character, Dr. Lennox.  In the last flashback, 1999, he is seen in his classroom full of energy, even lifting a 155 pound student.  His first symptom was subtle, as it usually is, by the simple dropping of the molecule model, as he talked Abby out of dropping his class.  The emotional struggle was evident after he got his diagnosis and decided not to pursue the relationship with his assistant.  Dr. Lennox was having trouble balancing and was trying to use his opposite hand on the stair rail, when he fell and broke his wrist.  Finally, slurred speech and breathing difficulty was evident in the first flashback.

This script writing for this episode was very well done.  They were able to include so many descriptive details, as opposed to simply mentioning the assistive devices.  I contemplated the possible double meaning in one of the first scenes when Dr. Lennox’s voice synthesizer says, “want out, please.”  And again, “let me out, please, let me out.”  I think the writers could have used many different phrases; however, this one said to me, let him out of his body, as well as out of the hospital.

James Woods was interviewed by Katie Couric on the Today Show the morning the episode aired.  He obviously went over his allotted airtime as Katie kept trying to cut him off.  He was so passionate about getting as many details in as possible.  James shared that he had the opportunity to speak with six different ALS patients in different progressions thanks to the ALS Association and the patients that volunteered their time.  The show would not have been the same without their help.  Thank you all.

The talents of James Woods will not go unnoticed.  I have no doubt that he will win the award for Best Guest Actor in a Series.  The community of ALS has a dear friend in James Woods.  I have to imagine more awareness was brought to ALS in this one-hour show and related interviews since ‘Tuesdays with Morrie.’  We now have one more frame of reference to allude to when describing ALS.

It was extremely emotional to watch the show, but necessary all the same.  My biggest concern was that they got it right in the allotted time they had.  I feel they did.  The most difficult part of the episode was the discussion and procedure of inserting the trach.  It seemed as though Dr. Lennox’s advance directives were known yet there remained confusion.  When Dr. Lockhart assumed she had consent to put the trach in, my bride Jennifer broke down in tears.  She wasn’t sure if she would be strong enough to handle the same situation if it were me.  She knows my wishes and they are documented.  Even so, if Jennifer is not ready to let me go and there is a persistent doctor, she is concerned about the ability to follow those wishes.  If there is any doubt, I know the right decision will be made.  I am at peace about it all.

I welcome and encourage any comments to this posting.  It is a great conduit for discussion and awareness.

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Happy New Year!

Today is probably the first day back to work for many of you and I wanted to give some food for thought to be used over the course of this New Year that we have been granted.  I’m reminded of a story I told at one of our MDA/ALS Gala’s about the Mayonnaise Jar.  My version goes like this:

On the first day of Philosophy 101, the freshmen sat eagerly to begin their college careers.  The professor patiently waited for everyone to get settled.  Once the attention was properly focused on the lesson for the day, he began.  From under the counter he produced a large mayonnaise jar and proceeded to fill it with golf balls to the brim.

He asked the class if the jar was full and with obvious results, they answered yes.  He reached under the counter again and produced a significant amount of pebbles.  Carefully, allowing the gravel to filter into the voids in the golf balls, he filled the jar to the top of the threads and then asked again if the jar was full.  The curious class responded with a resounding, “Yes!”

Our clever professor reached under the counter yet again and produced a bag of sand.  He carefully added this to the jar, shaking every once in a while to settle the sand between the voids of pebbles.  The sand spilled over the top and he asked the class one last time if the jar is finally full.  The professor paused, allowing the class to ponder.  Not seeing how anything else could possibly fit between the sand, the class unanimously nodded their heads in agreement.

Finally, and ever so slowly, the professor presented two wine glasses, filled with an obvious red colored liquid.  Very simply, he added the contents of both glasses to this mayonnaise jar filled with golf balls, pebbles and sand.  Of course, the fluid ran easily between the sand as the glasses were emptied.  The students laughed.

“Now,” said the professor, as the laughter subsided, “I want you to recognize that this jar represents your life. The golf balls are the important things – God, family, children, health, friends, and favorite passions — things that if everything else was lost and only they remained, your life would still be full. The pebbles are important things that matter like your job, house, and car. The sand is everything else — the small stuff.”
“If you put the sand into the jar first,” he continued, “there is no room for the pebbles or the golf balls.

The same goes for life.  If you spend all your time and energy on the small stuff, you will never have room for the things that have the most meaning.  Pay attention to the things that are critical to your happiness.  Play with your children.  Take time to get medical checkups.  Take your significant other or friend out to dinner.  Play another 18.  There will always be time to clean the house and fix the disposal.  Take care of the golf balls first — the things that really matter.  Set your priorities.  The rest is just sand.  One of the students raised her hand and inquired what the wine represented.  The professor smiled. “I’m glad you asked.  It just goes to show you that no matter how full your life may seem, there’s always room for a glass of wine with a friend.”

The beginning of the year always seems the time for resolutions.  Resolutions seem somewhat temporary to me.  I challenge you, our readers, to make this year count for the priorities of life.  Make this the year that the Mayonaise Jar is filled in the proper order…so it all fits.

This will be an exciting year for me as I approach my five year anniversary of my ALS diagnoses.  Not to jinx myself, but I will officially pass into the top 20% of survival for ALS patients on March 15^th.  Now, I haven’t been in the top 20% of much, but survival is definitely one that I am utterly grateful for.  There still may be a bus out there with my name on it, and I’m still ready for that, should it happen.  I’m just at peace with it all and it allows me to put the golf balls in first.

Because of my longevity, it has allowed Jennifer and I many wonderful experiences through the Muscular Dystrophy Association, ALS Association and Northwestern Mutual Financial Network.  These experiences have prepared us for the journey mentioned at the end of last year.  Our new Denver Chapter of Extra Hands for ALS is in full swing with a new CEO, Mickey Kesselman and COO, Jim Presbey on board to take this incredible organization to the next level.  Our fearless founder, Jack Orchard, has seen to it that the power of his vision will exceed even his own expectations.

In Denver, we officially have two families with ALS and their volunteers in place.  We already have many student and mentor volunteers as well as ALS families signed up eagerly awaiting geographic compatibility.  With the second semester of school about to begin, we are still looking for school and civic groups that Jennifer and I can present to for more potential student and adult mentor volunteers.  There are literally hundreds of families with ALS in Colorado that we can help.  We need to build our team of Extra Hands so when more families sign up for assistance, we can match the teams quickly and efficiently.

Another facet to Extra Hands is fundraising.  It’s a tough word to write directly following the holidays but we are intially looking for company sponsorships to fund Denver’s Extra Hands program as well as national research for near term treatments of ALS.  Our new CEO, Mickey Kesselman will be in town from January 18^th and 19^th.  He is hoping to meet some of our volunteers as well as potential grantors to our organization.  If you know of a company that might be interested in funding Extra Hands for ALS, please advise us as soon as possible so we can have Mickey join us in presenting our mission.  This is not just about helping families with ALS but also developing our future leaders, the student volunteers, by involving them with life lessons that cannot be taught in text books.

Thank you all for your continued support and prayers.  We honestly believe they are part of the reason why my progression has remained somewhat slow.  Please know that our thoughts and prayers are with you as well for a healthy, prosperous and happy New Year!

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Happy Holidays

We just wanted to wish everyone a joyous holiday season.  We feel very blessed to have such an incredible support system.  Thank you so much.

Christopher just had his first concert with the Colorado Childrens Chorale last night.  It was held at the new Ellie Caulkins Opera House here in Denver.  There were 400 children singing holiday songs in a fantastic production.  They had two 3 1/2 hour practices last week in preparation and Christopher was a trooper.  If you have never been to a childrens concert, try to get to one.  They have an energy and enthusiasm that can’t help but put a loving spirit in your heart.

Christopher lost one of his front teeth in October and I pulled the second one a couple weeks ago.  I’d like to say that all he wants for Christmas is his two front teeth, but come on…he’s seven years old!!!  There are just a few more items on his list.

Just a quick note to take the time to notice all the little things around you at this special time of year.  Children’s eyes aglow, beautiful lights and decorations and the special people you have in your life.

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Whirlwind Week

Last week was absolutely one of the busiest, yet most rewarding weeks in quite some time.

One of the first activities for starting the Denver Chapter of Extra Hands for ALS was to have Connie Stauts, the Program Manager from Boise, ID come in and train us.  She scheduled herself to be with us all day Friday and Saturday, the 11^th and 12^th of November.  Our objective was to have five volunteer families and mentors along with ten student volunteers ready for training.  Since there was not a lot of immediate reaction to my first posting on Extra Hands we were getting a little worried.

We did get a response from Susie Roy who helped coordinate an event for fellow PALS, Lisa Nichols from Greenwood Village.  Susie teamed with a teacher from Smoky Hill High School, Katie Kleeman and together with contributions from many others had over 2000 people raise around $100,000 in one day.  Susie put us in touch with Katie and we asked if she might arrange a meeting with one of the groups at her school that might be interested in a community volunteer project.  We were hoping she could set it up for the Friday that Connie, our trainer, would be in town so she could show us the ropes of a student recruiting presentation.  She had successfully set up two or three class presentations starting around 10:45AM.  We were heading out of town for Wednesday and Thursday and would return in time to present on Friday.

Our trip out of town was a speaking engagement in Kansas City for Northwestern Mutual (NWM), our life and supplemental insurance company.  This is when we get to share our story of financial preparation to their representatives in order to give them a current, real life situation where their services are truly benefiting people.  The idea is to inspire and motivate them and help us fulfill the fourth part of our mission.  There were about 60 people there who made us feel very welcome.  The feedback we received was incredible and made for a very fulfilling experience.

We returned Thursday night at about 7:00pm to find about 13 messages, 6 of which were from a much panicked Katie Kleeman from Smoky Hill HS.  Apparently, she had arranged EIGHT presentations for Friday starting at 8:55AM!  Her messages were left at home number while we were in KC, so we had no idea.   She was very nervous that we were not returning her phone calls after she had gone through so much trouble.  Needless to say she was quite relieved when Jennifer confirmed we would be there with our faithful trainer, Connie in tow.

We had the privilege of speaking to about 160 incredible young adults in various classes including Student Government, National Honor Society, AP Chemistry, Key Club, DECA, AVID, etc.  These students have the ability to restore your faith in our future leaders.  They are smart, attentive and very active in their school and personal development.  I pray that Christopher will have the drive these students have.

After the school presentations, I took a nap while Jennifer and Connie conducted an orientation and training course for three students and two mentor volunteers.  Saturday started with another training of three more mentors and then off to do two family intakes (Extra Hands lingo for ‘interview’.)  We returned to the house to go over a few more details of our training.  I took the next two days off relaxing and recovering!

If you would like to volunteer, please visit http://www.extrahands.org/1_signup.asp.  We realize some ALS families may be reluctant to participate but consider this:

1. Even with my good fortune of a slow progression many things have fallen off our priority list of taking care of the house and many other projects.
2. Simply allowing people to help is a gift to those that feel helpless in your fight against ALS.  Let them feel like they can do something to battle it with you.
3. By allowing these students to help you are empowering them to become compassionate and responsible future leaders and ALS advocates that we need to further the awareness for this hideous disease.

We intend to have student and adult mentor volunteers as well as ALS families across the Denver metro area as well as Fort Collins and Colorado Springs.  For this to happen, we need your help to network this organization to all your contacts.  Funding is also of great importance so we will be looking for private and corporate sponsorship of the Denver Extra Hands for ALS program.  Thank you all in advance for your participation and support.

 

 

Posted At : 12:36 PM. | Posted By : STEVEN | Link | | Comments (1)

 

October 29, 2005 | Show All

Extra Hands for ALS!

In the constant pursuit of our mission, we are thrilled to announce that the Denver area chapter of Extra Hands for ALS is now being created.  Jennifer will be the Program Manager with me (Steven) as her trusty assistant.  This is a multi-dimensional nonprofit organization primarily designed to assist families that are dealing with ALS.  We are actively recruiting potential student volunteers, adult mentors and ALS families.

Two student volunteers, high school or college age will team up to assist an ALS family with various activities for two hours per week.  Tasks could include mild house cleaning, repair and maintenance, dog walking, errands, etc.  Simply reading to or conversing with an ALS patient can provide invigorating company and also give the caregiver a much needed break for personal time.  Public ALS awareness programs are conducted once per semester that the students coordinate and/or participate in.

These volunteers will have an adult mentor to act as somewhat of a guidance counselor.  The mentors will be responsible for following up with the students and families to address any questions or concerns either might have as the relationship develops.  Mentors can also expand our ALS community by sharing their personal experiences with friends and coworkers, potentially recruiting more volunteers through these avenues.

Finally, we need ALS families that could benefit from some extra hands during the week.  These families will be assisting the growth of our ALS community by exposing a new generation to what ALS is and how people cope with a devastating illness.  These lessons have proven invaluable to the students participating in the other seven chapters of Extra Hands for ALS.

We encourage you to reference the Extra Hands for ALS website and watch the videos provided.  Click here for the program overview giving more detailed descriptions of the Extra Hands for ALS mission and individual position responsibilities.  The most commonly asked questions can be found here.

This organization will be a powerful addition to the ALS community here in Denver and we are inviting you to be part of it.  Corporate sponsors are also encouraged.  As part of our charter, funding is required to run the chapter and support our founding organization, the Jack Orchard ALS Foundation for ALS research.

We have tentatively scheduled an orientation and training for student volunteers and adult mentors on Saturday, November 12^th, with the time to be determined.  Please reply back as soon as possible as to your interest and availability.  If you cannot attend the orientation, but are still interested or know someone that might be, please let us know!

Thank you, in advance for your support of our new venture.  We can’t wait to start sharing success stories.

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Peace of Mind

On this website, we try to keep you updated on how we are doing and most importantly, living up to our life mission.  Looking back, it seems we have been remiss to address the fourth point of that mission: Encourage people to responsibly plan for the future.  This posting is especially important for the people that are not affected by ALS or any other life threatening illness.  You see, once diagnosed, your alternatives for planning are limited due to the preexisting condition, a term well known in the insurance industry.  That is not to say that this piece should be ignored by anyone battling illness.

Planning for the future can involve many things, i.e. estate planning, individual life insurance, supplemental disability insurance, living will, etc.  Taking care of some or better yet, all of these things can lead to peace of mind with the simple fact that you and/or your family is taken care of to the best of your ability in the current time.  Planning also reduces stress. We all know what stress can do to a healthy body, but one with ALS needs to eliminate as much of this toxin as possible.  We were fortunate to have good counsel early in our marriage and are thankful to have acted on that advice.

That counsel came from Scott Sparks, a representative from Northwestern Mutual Financial Network (NWM).  I was always pretty conservative and Jennifer was a great planner.  It didn’t take long to be convinced for the need of individual life insurance policies to cover our mortgage as neither of our group insurance through work would be sufficient.

When we considered having children and 4 ½ years of infertility was endured, we realized Jennifer would stay home and raise Christopher when he was finally born.  This meant losing a significant portion of income and the expense of a child would be added.  Obviously, our life situation had changed and with the help of Scott, we adjusted.  He made us realize that my income had to be protected at all costs and we finally let him look at my disability coverage through work.  It was not enough, especially since it was based on just my salary and not my commissions earned.  Because of the change in our finances, it was a very difficult decision to purchase supplemental disability, because of the cost.  However, for the sake of our protecting our family, we committed.

When I was diagnosed, my doctor strongly recommended getting on disability immediately if financially feasible.  After crunching the numbers, we decided we could make it, because the supplemental disability policy from NWM would pay for our mortgage payments.  This assumed all the applications for disability would be approved. Our lifestyle is certainly not what it used to be, but is very satisfying all the same.  I have been able to spend more time with family and friends in the last 4 ½ years than many people do in a lifetime.  More importantly, Jennifer has been able to stay at home with us instead of having to go to work full-time to support us.

Having a doctor advise us to get our affairs in order was not pleasant, but the news was eased by the fact that we already had our estate planning done.  This included our trusts, last will and testament, durable power of attorney, guardianship, living will, etc.  It was hard to make all the decisions required in this process.  They require conversations about somethig many are uncomfortable with…death.  However, I remember how completely relieved I was with the fact that it was done.  A sense of freedom prevailed.  This feeling can be obtained even with illness present.

I believe that my peace of mind and lack of stressful influences are primary reasons for my ALS longevity.  If you get nothing else from this posting, let it be that you at least find out what benefits you have in place and evaluate what effect they would have should the unthinkable happen.  Also, if the Terry Shaivo case did not get you motivated to have your end of life wishes written down, then consider this posting a gentle shove to get it going.  Take care of yourself and your family.  Bring peace of mind into your life.

Even though we have not written about it, our activity with the fourth point of our mission has actually been quite active.  We appeared as NWM’s 2003 Annual Report cover profile. This has lead to many speaking engagements at various sales branches and even their 2004 Annual Meeting in front of 8,000 people.  We want to keep the representatives motivated about life and disability insurance.  You would think that wouldn’t be a problem since that is the business they are in, but they are also financial planners.  It helps them to have a story of how their core services are affecting a real situation.  Our objective is to have them educate their clients like Scott did for us with the same amount of conviction.  It also doesn’t hurt that they are spreading awareness for ALS as well…the first point of our mission.

This process is not limited to NWM.  We are not being compensated by them to post this article.  Contact your own insurance agent if you are already working with someone.  If not, contact Scott or our great friends at The Allenbrook Agency from Farmers Insurance.

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Catching Up

It has been quite a while since we have posted anything because life has been a little hectic around here.  Let me catch you up on the most recent happenings.

Jennifer’s father, Bob, had a lung transplant about 5 1/2 years ago.  He and Jennifer’s mom, Bettie, live in Las Vegas.  They return to Denver, where the transplant was performed, for checkups every 6 months.  This was supposed to be a routine visit.

It turns out, Bob has been in chronic rejection since sometime in 2003.  This means that his lung volume capacity has been steadily decreasing as his body slowly rejects the new lung.  Drug therapy was recommended to stabilize the rejection.  This involved a 5 day stay in the hospital and then two more weeks to recover.  Jennifer’s parents stayed with us during this time.  Another test was done to see if the proceedure was successful.  Thank God it was and Bob and Bettie were able to return to their home in Las Vegas.  He is doing well considering he is at 38% lung volume capacity and that is an improvement from where he was.

During this time, Jennifer has been able to reconnect with her brother, John, after 6 years of no communication.  A lot has changed for both of them since then and they have found much in common.  Faith, being at the top of the list.  A great story all around.

Last weekend we attended a wedding in Goodland, KS where Jennifer was the Matron of Honor and Christopher was the Ring Bearer.  Congratulations to Bryan and Misti as they head on their honeymoon today.

Three hours is a long time in a car for me, but I used the air cushion from my electric wheelchair to ease the ride.  These type of events are getting more taxing on me as it is difficult to sit or stand for long periods of time without the ability to lay down and rest.  At the reception, Jennifer was up at the head table and Christopher and I had sat at another table.  We had a great time.  We talked about how to introduce himself to a girl, whether he was going to dance, etc.  As usual it was all worth it, but I did skip out early on the reception as my body was exhausted.  I left about 7:30.  Jennifer and Christopher stayed after 10:00.  Christopher had so much fun dancing and “performing,” I really wish I could have stayed to see it.  During our dinner conversation, we noticed a very cute girl to which Christopher referred to as a “hotty”.  He thought she was probably about 9 years old and as it turned out he was absolutely correct.  Her name is Mackenzie and she was a junior bridesmaid.  They danced most of the night.  He also had some great conversation with a girl named Alex.  I’m so proud of him.

Christopher has started in Colorado Children’s Chorale, Prep Choir.  The Tour Choir with kids 11 to 14 years of age travel internationally, alla Vienna Boys Choir.  It was a privilege to be chosen to participate as he had to audition without us present with the song “America the Beautiful.”  He said he only used two of his voices to sing the song.  They were looking for voice range and personality. Jennifer and I knew he had the personality covered!  Over 300 kids auditioned with only about 100 selected.  Way to go Christopher.  His first performance will be at the Ellie Caulkins Opera House in Denver on December 4th, entitled “Christmas with the Childrens Chorale.”  Please visit www.childrenschorale.org for dates and tickets if interested.  I know he would be thrilled to have an entourage.

Tonight, I am heading to the Bronco game against Kansas City with one of my great friends and fraternity brother, Keith.  It’s been a long time since I’ve been to a game so it’s a bonus that it is Monday Night Football, against KC and with wonderful company.

There about ten other titles I have going for postings mostly about past events and I hope to get them out shortly.  Please know that we appreciate your support and thank you so much for taking the time to read these postings and the many replies we receive.  They are so encouraging and keep us motivated!

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Eye Surgery Post-Op

Jennifer and I were pleasantly surprised, once again, by the willingness of KUSA-TV 9News reporter, Dr. Steph Clements to cover my surgery as an ALS human interest story.  It is amazing how things work out.  A friend of ours that we met when we were on the Parade Magazine cover in 2003, Jacque Montgomery, is the Media Relations Coordinator for Kaiser Permanente.  We recently had breakfast with her and mentioned the LASIK surgery and how it came about.  She mentioned that Dr. Clements was looking to do an ALS story and this might fit in.  She pitched it and Dr. Clements commented that she couldn’t imagine the 9News directors not going for it.

At about 1:15pm on Friday, September 3, 2005 I checked in for my surgery, accompanied by Jennifer and Christopher.  Our boy had the day off from school anyway and thought it might be cool to see Dad’s eye surgery.  I was given a sticker that included my name, type of LASIK procedure and the code signifying both eyes were to be done.  Shortly thereafter, Dr. Clements and her Photo Journalist, Dave Delozier joined us as well as Dr. Jimmy Jackson, my Ophthalmologist, Dr. Hans Kell and his wonderful wife, Dr. Jennifer Tasca-Kell.  Introductions were made and a microphone was placed on my shirt.  Dr. Clements mentioned that she really didn’t want to disrupt anything so the pre-op process began.

At Insight LASIK they are extremely kind, comforting and thorough.  Dave Delozier started filming.  I was asked to sit in a waiting area where I was given a sanitary cap and booties, administered dilating drops and consulted on the LASIK procedure, by Dr. Jimmy Jackson.  He even put a sticky star on my head as a redundancy, signifying what type of surgery and that both eyes were to be done.  There was not one detail missed as he explained what I would see, hear, feel and smell during the operation.  I thought they must be going a little overboard with the explanations since the TV crew was there, but I couldn’t have been more wrong.  While waiting for my eyes to dilate, Dr. Clements asked questions about what this surgery would mean to me, how I was feeling, etc.  She was very outgoing, friendly and easy to talk to.

Dr. Keith Miller escorted me to an exam room where he placed dots on my eyes for surgery purposes and looked in both eyes for anything they might have missed.  He then guided me to room I had been to the Wednesday prior for my initial exam and he mapped the shape of my cornea.  I was getting a procedure they call CustomCornea, where they take into account any irregularities of the cornea and throw that in with the programming of my prescription.

I then went into an exam room, one last time to visit with the surgeon, Dr. Jim Montgomery.  The standard instruments were used to look into my eyes to make sure everything was in order.  He calmly asked if I had any further questions, which I did not, and we proceeded to the operating room.

I lay on the table and was asked if I wanted a blanket.  I had also been handed a small squish ball to squeeze during anxious moments.  I was really not nervous at all and couldn’t wait to get started!  The LADARVision machine hung overhead where I watched a red blinking dot.  I had also seen this before with my initial exam.

Dr. Montgomery taped my eyelids open on my right eye and then inserted an instrument to widen it further.  This was probably the most uncomfortable part.  The computer spoke my name other pertinent information unique to me to make sure they were doing the right procedure on the correct person.  Just another redundancy that is in place that makes you feel comfortable.  The laser that is used also tracks the eye at about 4000 times per minute to anticipate any possible movement of the eye.

He then placed a vacuum over my cornea to pick up any possible contaminants.  My vision went dark, as previously explained as I saw and felt something placed on my eye and glide over.  I realized this was the creation of the flap.  In a haze I saw the flap being pulled over.  Did I mention they had applied numbing drops to my eyes?  Anyway, the laser then went into action and the computer stated the percentage of completion and time remaining for actually etching in the prescription.  The odor of burnt hair permeated my nostrils as Dr. Jackson had foretold, which was the release of gases when the laser made contact with the cornea.  My eye was irrigated and then I could see the flap being replaced and smoothed until seamless.  The great thing was being able to focus on this red blinking light the whole time.  I figured if I could see the blinking light, everything was going as planned!  The instrument holding my eyes wide open was removed as was the tape holding my eye lids.  Everything was repeated exactly for the left eye.

I have to tell you, I really enjoyed experiencing the surgery because of the great job Dr. Jackson did of setting my expectations.  There were no surprises and I remained perfectly calm.  It was fascinating to know exactly what they were doing, when and why.  It allowed me to concentrate on all the sensations during the procedure without worry.

After the left eye was complete I was guided to the other side of the waiting area to lay back with my eyes closed and just recover for about thirty minutes.  During this time there were 2 or 3 other people waiting to go into surgery and getting the exact same explanation of events to come that I had received.  It was then I realized there was no ‘show’ for the TV crew when I was getting my pre-op consultation.  These guys are really have their checks and balances for safety purposes and want to set your expectations appropriately so there are no surprises.  I was out the door before 3:30pm. They are just fantastic!

Post-op continued with a three sets of drops with directions to take home.  I also received a pair of goggles so if I got the urge to rub my eyes, I would hit the goggles as a reminder not to.  I was not really supposed to open my eyes for about 4 hours.  On the way home, about a twenty minute drive, there was a bit of a burning sensation, but keeping my eyes closed helped.  I proceeded straight to bed for about a 4 hour nap.  I awoke with my eyes feeling just great and my vision just a touch blurry on the edges.

My post-op appointment with Dr. Kell, my Ophthalmologist, was scheduled for 9:15 the next morning.  After looking at my eyes with the appropriate equipment, he determined the surgery aspect was “pristine.”  Then on to the eye chart…drum roll please…20-15 vision after just 18 hours!!!  I am absolutely thrilled with the results.  I just glanced at my computer time when I wrote that last sentence and it is 4:44 (Search under 40^th birthday for relevance.)  I was praying for better than 20-20 results.  As of today, I am on the last day of post-op drops and will continue with wetting drops only as necessary.

As for 9News airing the story, Dr. Clements was scheduled to be at our house on Labor Day, for a follow up on the results.  However, she was reassigned to cover the Hurricane Katrina victim relocation to Lowry Air Base.  I certainly don’t think we can complain about that.  They definitely will be airing the LASIK story with the follow up, but probably not until October.   Be certain that we will let everyone know as soon as we do when that will be happening.

At this point, I just need to recognize some very special people and hope you might patronize them.  I don’t think they get any better.  First and foremost, thank you Dr. Hans Kell from Front Range Eye Health Clinic for just thinking to ask if it could be done and all the pre and post-op work.  Next, thank you to Dr’s Jim Montgomery, Jimmy Jackson and Keith Miller at InsightLASIK for opening your incredible facility to us in such a generous manner.  Your staff are fantastic and you all are a tightly run ship.  Thank you to my Jennifer and Dr. Jennifer Tasca-Kell for having the initial conversation about putting contacts in for me and giving Dr. Kell the idea.  Finally, thank you to Dr. Steph Clement and our friend Jacque Montgomery for making this story public.

Dr. Clement said we are due for some good news and this is certainly one of those stories.  This surgery can help an incredible amount of people with ALS, Parkinson’s, Arthritis, etc.  It was painless and with these top notch doctors working on me, absolutely worry-free.  If your contacts or glasses are hindering your quality of life do not be afraid to pursue this treatment.  I caught myself last night thinking I should get up and take my contacts out and didn’t have to.  I also found myself looking for my glasses this morning realizing they were not needed.  Yesterday morning, while still in bed, I saw Christopher washing his hands in our bathroom.  I just enjoyed watching him as he tends to get distracted and was looking at all the things by my sink.  I couldn’t see that stuff clearly before.  I will absolutely not miss the contact rituals I explained in my previous posting about this surgery.  Maybe I will have more endurance to type and get more articles out. Yikes, is that good or bad?!!

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Steven’s Eye Surgery

I’m getting LASIC eye surgery today.  I’ve been wearing contacts for over 10 years.  The surgery got scheduled in such an incredible way that I felt I had to share it with you all.

In the last year or two, the dexterity in my right hand, among other things, has been deteriorating.  This makes it more difficult to do the things necessary to maintain contact lenses.  A lot of details follow, but bear with me as they are important to the overall posting.

My mornings start with having to be awake long enough to where my eyes are not combative to the idea of having my finger touching them.  I take the right lens from its container and place it in my left palm.  I apply saline solution and rub one side, turn it over and rub the other side to remove any deposits the solution might have loosened overnight all with my right index finger.  I turn the lens over one last time for a final rinse.  Carefully I place the lens on my right index finger, use my right middle finger to pull the bottom of my eye open and my left hand to keep the upper eye open.  I extend my index finger, with the contact lens to the point of it touching my eye.  When the cool sensation of the saline and my eye meet, I know the contact is in securely.  I repeat the procedure with my left contact.  At night, it is much simpler as I reverse the procedure without the rubbing and just place the lens in the container.  Anyone who wears contacts may take these actions for granted.

Why did I go into such detail about stupid contact lenses?  I guess it must be understood that my first symptom of ALS was fatigue and weakening of my right index finger.  From the description above, you can tell how much I use that finger for contact lenses.  The theatrics involved in putting my contacts in and taking them out prove very fatiguing.  I could probably figure out a different way or would have in the long run, but I didn’t have to thanks to a whole train of people and events.

We have some friends, Dr.’s Hans Kell (Hans) and Jennifer Tasca-Kell (Jen), who are Ophthalmologists and have a practice in Louisville called Front Range Eye Health Center.  Jennifer had an appointment with Jen for new contacts.  She asked if Jen could teach her how to take out and insert lenses for me.  Jennifer explained the difficulties I was experiencing and that they were not expected to improve but rather worsen dramatically over time.

That was about 2 or 3 months ago.  I received an email from Hans on August 19^th, 2005.  It basically said that he had approached some friends at Insight LASIK to see if they would be willing to perform the LASIK procedure pro bono, as he was willing to do the pre and post operative management at no cost.  One of the doctors at Insight LASIK, Jimmy Jackson, was very thorough and even emailed colleagues to see if there would be any concerns over doing LASIK on an ALS patient.  He discovered there were none and noted the obvious quality of life benefit that Hans had previously mentioned to him.  Dr.’s Keith Miller and Jim Montgomery (the actual eye surgeon) also agreed.  The email stated their willingness and generosity to go through with it all.  I read the email at least three times to see if it really said what I thought it did!  Hans told me  that we can make this all happen if I wanted…Duh!

As I am writing, I find myself very emotional over this again because the biggest magic of all of this was the simple act of Hans even thinking about approaching the generous and thoughtful people at Insight LASIK.  It didn’t matter what the answer turned out to be, just the thought.  You are a class act, my friend.  Hans had the surgery himself not long ago with this group.  Being an Ophthalmologist himself, this told me a lot about how fantastic these doctors are.

The adventure begins at 1:30 and I will be doing a follow up posting to let you know how it goes.  I am very excited and not nervous at all.  I know how it will benefit me, but I think of Jennifer not having to work with my contacts on top of all the other wonderful things she does for me and I am thrilled for both of us.  Thank you to everyone mentioned above for their time and generosity and I will SEE you all on the other side.

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My Tri-State Trek Experience – Todd Morin

It’s been over a month since this incredible event. I still think about it each day. I wanted to share with all of you some of my thoughts about the bike ride, Steven and Jennifer, and what lies ahead. This is likely the last entry about the Tri-State Trek so please take a moment to read below.

I consider myself very lucky. Lucky to have two healthy children, a wonderful and beautiful wife, and good health (so far). The Tri-State Trek made me truly appreciate what I have in life.

I have been a cyclist for over 20 years now with a stint of competitive racing while in college. In the early 90’s quickly realized I didn’t have the “genes” to be the next Greg Lemond (Lance wasn’t around yet) so I just became the occasional rec rider. 13 years and 50 pounds later I said “You know, I better get back in shape.” I lost 40 pounds when I got serious on the bike again; that was 2003.

My wife Jodee and I have known The Bishops for almost two years now and have become very close. Our daughter Anna and Christopher Bishop are the best of friends. We have been through a lot with Steven and Jennifer and consider them family. When Steven introduced me to this year’s Tri-State Trek I was a little apprehensive about riding it because of the oppressive heat and humidity of the Northeast in July.  But since I started biking again and had been putting miles under my belt, in late May I finally decided to support Steven’s quest for a cure. I started riding hardcore in the heat to prepare myself for this grueling event. I hoped it would pay off.

When you ride a long distance on a bike you have tremendous time to think. You have yourself, the road, and the sounds of the surroundings. What I thought about a lot during those three days was my good friend Steven Bishop, his family and my family. I so much wished he was there to experience the ride with all of us.

Nikki Whittle who I rode with for a majority of the event had bike jerseys for each day made up with a picture on the back of her best friend who recently passed away from the effect of ALS. Her friend passed away in March. That same day Nikki committed herself to do the Tri-State Trek. Every time Nikki was riding in front of me I saw the face of her good friend. I memorized that picture.

At one point on Sunday when it was raining sideways and the hills kept going up and up and my crotch was so sore from my shorts being so wet, I wanted to give up. The signs were horrible (see Ty’s blog), I got off track twice and I almost crashed twice. I was mad and DONE! But I kept looking at that face on the back on Nikki’s jersey and realized how lucky I was that I could push these pedals, breathe with my own lungs, and force myself over the hills. When you think about things like that the hills get a little easier, the crotch doesn’t hurt as bad, and suddenly you have new energy. I kept thinking about my wife Jodee, my kids and how much I loved them. The fact that I could hug my kids, kiss my wife, carry my son, and just be. I also thought about the day to day pressures of life that take a toll on all of us; We fight, there is never enough time, the kids are screaming, etc. You get the picture. Then I would think all of that has no weight to losing the one you love to a horrible disease like ALS.

On Sunday afternoon after the ride was done and we finally made it to Pace University, it was overwhelming. Nikki, who to me was this stoic and hard-edged person, just broke down and cried. All her pain, all of her riding, all of her training, she did for her friend. What a wonderful accomplishment.

I did this ride for my good friend Steven. All the pain, all the riding, and all of the training was for him. I cried too.

I did it so I NEVER have to put his picture on the back of my jersey.

I thank all of you who supported me through donations and emotional support. I especially want to thank my wife Jodee, for giving me the opportunity to do this trek for our friend Jennifer and Steven. Jodee had her own challenge keeping our two children at bay!

For those of you reading this for the first time and have not donated, we still have time. Help me. Make a donation so I never have to put Steven’s picture on my jersey. Help to stop this horrible disease. Help my friend Steven.

Steven, thanks for the inspiration.

Thanks for reading,

Todd Morin #77

P.S. Click “Online Pledge” at the top of this page to make a donation.

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Tri-State Trek ~ Ty Ricker

Steven has asked that I create a posting on his website about my experience during the Tri-State Trek.  Please take the time and read my comments.  I think they are important because they are not about me as much as they are about those that need your help!

I thought I would share with you some of the remarkable feelings that I had on the third and final day of the 270 mile event.  This was after riding more than 11 hours the first day and about 10 hours the second day.  On the second day I suffered near heat exhaustion and also crashed crossing a railroad track!  However I must say that I really did not “feel” the significance of what I was doing until day three.  I hope you enjoy this posting.  Please click on the link at the bottom of this posting to make a comment.  If you are reading this by email, please follow the link at the bottom and then come to the website!

Posting – Day Three Tri-State Trek by Ty Ricker

After more than 180 miles already accomplished in the first two days and after a great night’s sleep, although I was still very sore from the rail road accident, I was ready for the final day!  At about 5:55AM I checked out of the dorm room we stayed in – great room, private shower and air conditioning!  To my surprise the group I had been with the first two days decided to get an even earlier start.  I decided that it was actually a really good thing as I had not spent really anytime by myself for the first two days.

It was a very cloudy morning and talk was that it was going to rain most of the day.  As I started off on this last day – the third and final 90 miles, I started thinking a hundred different thoughts.  One of the first thoughts was why did it seem so hard to get any speed today?  I was having a tough time and right away there was a huge long uphill climb.  One of the tricks I came up with the previous two days was to just look a short distance ahead.  If you don’t look up the hill and try to figure out how much more to go, it seems so much easier.  I just kept looking straight ahead about 10-15 feet and focused on some small rock, twig, broken piece of glass or whatever.  Every time things got hard, I had to go back to WHY was I doing this – to support ALS patients and to find a cure!

It also turned out that I was riding in this event to be close to incredible people, and to feel some pain of my own.  So when there was pain, and there was… I just keep focusing on those things, and that short 10-15 feet to go.  It was thinking about small distances and how in life, having just one small accomplishment after another is what often defines success.  However every 10-15 feet I kept thinking more and more about the daily life of someone dying from ALS.  I thought about the tremendous amount of things every day, that had to be so difficult for someone who was losing their strength, who had now already lost use of their hands, arms, legs, voice, etc.  The more I thought how blessed I was to have the health that I have, the easier the push became!

Before I knew it I was on top of the first hill.  I then decided to stop and look back.  It was a moment that I wish I had a camera with me.

But back to this first hill… It was only about two miles into the day and between thinking about how hard this first hill was, the rain that was coming down… I discovered that my front tire was flat!  I actually think now that looking back it was either extremely low or flat for all of the first two miles and the first “HUGE HILL”.

The great thing about this event is that it is so well ran.  I can’t say enough about Dakota and Rick.  These two guys worked non-stop on everyone’s bikes.  Not just the needed repairs, but also making sure each night they were tuned and safety checked.  I had both of their cell numbers and left messages that already I needed their help with this flat tire repair.  While waiting, most all of the other riders past me.  Of course all of them offered to stop and help, but I told them that Dakota or Rick would be along soon enough.

While waiting it was more time to think about what was ahead of me.  The rain was really coming down and I was wondering if this was the Hurricane Dennis rain that we all thought would be with us the first two days.  It was not long before a van with several volunteers stopped by.  They were headed to the first rest stop.  They waited with me for a few minutes and then had to get going to the first stop for the first group to arrive.

Dakota showed up a few minutes later.  I expected him to be in one of the support vehicles.  He actually got on a bike and road the two or three miles with a broken wrist to
help me.  Again it was raining pretty hard then!  My thoughts moved from being concerned how far behind I was to how lucky I was that I was surrounded with some great support!

The whole day it was really thinking about the time alone, and looking forward to seeing others at the rest stops.  I kept thinking about ALS patients that are alone often either physically or in their own thoughts.  They must be thinking about their own pain, or who will soon hopefully visit, perhaps an upcoming doctor’s appointment, of course the unknown, a support group meeting, or perhaps another funeral to attend.  Time alone is hard, and caregivers perhaps don’t know how special they really are.  I pray that if you are a caregiver, a spouse, a family member, etc. that you don’t misunderstand what I’m saying here.  My three day experience is in NO WAY close to what I can only imagine you live each and every day.

After my flat tire was repaired I was looking forward to often what is the most enjoyable parts of the ride – the down hills.  You really look forward to those down hill moments.  I kept thinking about the ALS patient and I wondered what things could be compared to a down hill moment?  My only guess is perhaps the feeling they get when someone has spent time with them, or the hope that what they are doing today is making a difference some how.

This particular downhill ride was different.  Instead of pleasure, it was extremely steep and it was still raining hard.  It was VERY slick and I was losing control.  I actually went sideways twice traveling at way too fast of a speed for these conditions.  I started to panic.  I thought for certain I was going to fall again, and this time the crash may be the worst yet.  After gaining control, and slowing down I was starting to feel better.  My attention went back to this new emotion I just had.  I was alone, and I just had a frightening experience and there was nobody around to share it.  I worried about what if I did crash here, would anyone find me right away.  I wondered if I would be able to finish what I had started.

My point is that I had only been riding about 5 miles now and I could not stop thinking about all these emotions in such a short amount of time.  I kept thinking about Steven, Jack and Linda.  They are really the only three ALS patients that I know that well, or have known now for sometime.  I thought about them and I thought how they must feel some mornings, perhaps many mornings.  Feeling like they wake up to a struggle, not knowing was on the other side of that hill that day.  What is the worst, not knowing what is ahead of them.

I decided to stop and call my boys and my father.  One the greatest comforts anyone can have when they are anxious about something, afraid of something is knowing that you have people you love and that love you.  Just talking to them, telling them how much you love them and letting them know you care about them and want them to be happy is a wonderful and comforting thing.  When you take focus off yourself, and put it on to others it makes not only them feel good, but you feel good.  I think that is what I’m impressed with in knowing Steven.  He does not spend much time at all talking about what hill he just climbed, what frightening experience he has just had.  He puts focus on others, making others feel good.  I’m sure he feels the same as I do, you feel better when you focus on others!

So the next experience which I want to share with you is about not only not knowing what is ahead, but the emotions you have when you are not sure you are even on the right path.  I shared this with the event director Mat.  Again Mat is an incredible person.  The first two days the course were marked perfect.  Every 50-100 feet you would see a red arrow.  If you were coming up on a turn, you knew way ahead and it was clearly marked.  The people involved the first two days of marking the course and taking down the thousands of arrows did an amazing job.

The third day was a bit different.  The arrows often were no where to be seen.  I don’t mean they did not mark the course, it was just that in the previous two days you always had an arrow in your vision.  It was a great comfort to know you were on the right track at all times, not just some of the time.

Now I caught myself constantly wondering did I do something wrong?  Did I take a wrong turn?  The confusion started to turn into something different.  It turned into anxiety.  The anxiety turned into fear, and then worst it turned into anger.  I was getting angry.

When I stopped putting the focus on me and my troubles, I could only once again think about why I was doing this, and who this ride was really for.  I really can’t imagine the confusion, anxiety, fear and anger that goes on when you are living and dying of ALS.  Early on I’m certain there are clearly marked paths for the ALS patient.  Things to look for that most all with ALS experience.  Things that you must do in order to live with this disease.  As you get beyond most all of the knowns, you are then faced to struggle with the unknowns.

I think often about one of Steven’s quotes: “The best advice we every got was to stay one step ahead of this disease.”  This is exactly what I’m talking about… IF you are lucky to know what is next, you can clearly see the signs pointing you in the right direction, then you can eliminate some of the confusion, anxiety, fear and possible anger.  I started thinking about how after 3 or 4 months with all the reading I have done online about ALS, that I can only PRAY that the course gets better marked for all of those that get this horrific disease.  Every 90 minutes another person is lost and dies.  Every 90 minutes another person starts this journey.  In just the three days I was involved in this ride, 24 people died – just in the United States.  Since I did this ride, – more than 500 more have died and more than 500 more have learned that most will die in the next 2-5 years unless we find a cure!

By the time I made it into the first rest stop I was the last person for the day to get there.  I started feeling bad that I was holding up these volunteers.  Often you hear a person with ALS feeling bad they are holding up others lives.  However right then it occurred to me that even though I was really sore, already very tired early in the day, was hot, soaking wet, and an emotional wreck after thinking about that was happening that I was actually doing incredible!

I was not someone that could no longer use their hands.  Someone that could not any longer use their arms.  Someone that could not any longer walk or talk.  I did not need to be on a feeding tube or a ventilator to survive.  How could I feel at this moment anything but blessed and lucky to be who I was, and  ABLE to help others!

Mat heard me talking about this and he asked his brother to get his bike down off his car.  He wanted to ride with me.  It was great being able to ride with Mat and talk for a good amount of time.  I was able to further explain how I was feeling, and more important share what I can only imagine someone with ALS is feeling or has felt at sometime in regards to the confusion.  We talked about his event – this being the third one.  How impressed I was with all of the work that went into something like this.  We also discussed how I’m going to record a 30 minute audio interview with Mat soon and share with everyone as much as possible about all of the work that goes into this event, but more important how others can help!

Before I knew it I was at the second rest stop. I was still the last person because of the flat tire and also stopping to make calls. Once again it was great to have the encouragement of applause as you rode into a stop.  It was that way every time, and the volunteers need to know how wonderful that feels!

The next saga of this day came when I left rest stop number two.  Being the last on the course, the markers were being taken down right behind me.  The signs for this rest stop were down when I left and I guess the arrows pointing to go left were also gone.

I looked left, looked right and saw two riders up on top of a huge hill to my right.  I came into this stop making a right, so it only made sense at the time to go right and not back track the course to get to stop number three.  I was wrong!  That huge hill to my right was a killer and then I was excited with the thought of being able to coast down the hill.  Coasting down the hill turned from pleasure into the same as before: confusion, frustration, anxiety, fear and anger.  I was now not only last, but perhaps a mile or two mile in the wrong direction!  This time my cell phone had no service.  After maybe 15 minutes or so I was back on course, and although the volunteers had cleaned up and left the last rest stop, thankfully the red arrows appeared again.  Rick is the last one behind all riders making sure everyone is okay.  He was also confused because he did not find me.

More frustration, more emotions, more heat and more rain!!!  Good news is that the crew that was picking up the arrows caught up to me again.  They assured me they would give me 10 minutes or so and then start picking up arrows again.  They placed calls on their cell phone and shortly after I was greeted by others that were out there looking for me!

When I made it to the third rest stop, Craig and Kevin were waiting for me.  These guys I talked about in my previous posts on my website, but I again can’t thank them enough. We talked about the fact that others were now hours ahead of us.  But now having someone to be with, knowing that if I had a problem they would be there gave me new strength.  We still had about 35 miles or more to go at this point.  Oh, I forgot to mention that today there was no planned lunch as we were to be at a point around 2:30PM for all of us to ride into together with a police escort.  And at the finish there would be a great deal of food, etc.

So I made sure I had plenty of fluids and packed a bunch of power bars with me.  We took off pushing it hard.  I learned the art of “drafting” behind another rider. This is getting as close as possible to someone in front of you, and this allows you to be able to rest a bit as their energy actually pulls you forward.  It was another incredible feeling, thought and emotion about the importance of having someone close to you when you are battling something.  The caregivers I know, are those kind of people that stay close, work hard for those that they love, and help pull them through the difficult moments.

When we made it to the fourth rest stop, we found out we were only a few minutes behind another group.  We continued to ride extremely hard and make up for the lost time.  Seemed that even though my body should not have been able to move, just knowing what was ahead and having others close to me kept pulling me forward.  My anxiety, fear and anger disappeared.  I was now focused on and thinking about what was to come next.

Going back to NOT hurting someone’s feelings who has experienced far more pain than what I’m discussing here, and not just for a few days, but for months or years… I don’t want to make anyone feel like I could possibly know what you or your loved one felt or now feels.  I can only now share with you what I was personally feeling during this event.  I do feel that one important thing in getting through a difficult and painful period is knowing that you are not alone, that there are others that feel the way you do.  If you are blessed to have someone close to you that cares – be thankful.

Just a few miles from White Plains the entire group was there waiting for us.  We were then all were escorted by the White Plains police department down the freeway into the finish area.  There was a tremendous amount of people waiting for all of us to come in, and the applause once again made all the effort feel so wonderful.  Best for me was the hugs, and the incredible conversations that followed. We all were able to shower and then listened to a number of people speak.   The speakers remarks brought back to focus what ALS is and how we MUST all help to find a cure.  The research at ALSTDF and events like this one are making a difference in people’s lives.  With more events like this, there will be a cure someday!

I’m still getting reports from Mat and Dori on those of you that made these pledges.  I really want to thank you so much for your support to ALSTDF and to me personally.  I can assure you that after personally visiting the research lab, personally meeting several key people there, that your money is being put to good use, and we ARE on the right path!

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