Jerry Lewis MDA Telethon

http://www.huffingtonpost.com/2011/05/16/jerry-lewis-retiring-from-mda-telethon_n_862844.html?fbwall

The end of an era.  We knew this was coming.  I simply wish Jerry all the love and appreciation I can muster for his years of dedication to this program.

Team Bishop 2130 Ride for ALS

As part of our four part mission, we will be leading a 21.30 mile bike ride to commemorate Lou Gehrig’s 2130 consecutive baseball games played before he succumbed to ALS in the glory days of his career.  He was only 35 when he was diagnosed and died two years later.  The ALS Therapy Development Institute is the beneficiary of the funds raised for this bike ride.  This event will raise awareness, funds and hope for those affected by ALS.  Please click on our Team Bishop sponsor site now to ride, volunteer or donate.

Knowing that organizations such as ALSTDI are working on a treatment and/or cure for ALS provides hope to those affected by ALS.  I remember when I was first diagnosed and reading everything I could about the disease, I took comfort knowing someone was working on it.  I was not alone.  People cared.

Knowing that I have such a slow progression, I feel even stronger that a treatment or cure could be found in my lifetime.  I also know that even those with a normal progression of ALS want to raise money so no one else has to go through this horrible disease.

Will you provide hope by becoming involved with our 2130 Ride for ALS?

Chance Meeting

Jennifer and I were in Los Angeles recently taking a fantastic financial class called Mastering Wealth Bootcamp.  It was a three day intensive seminar teaching how we can strengthen our financial foundation.  Great class, but not the reason for this posting!

We booked an extra day in Los Angeles to visit with a couple friends.  As it turned out, both friends were unable to make it.  Mark was out of town last minute and Val was sick, unfortunately.  So there we were, sitting in our hotel room on this extra day when a plan formulated.  Our friends, Jac and Marylou live in Cardiff by the Sea south of LA about an hour and a half.  It was Marylou’s birthday and we decided to rent a car and take a drive to surprise her.  It had been raining the entire time during the seminar, although we didn’t care because we hardly left the hotel except to eat.  However, this special day brought the sun and more typical southern California spring weather.  Highway 405 to Highway 5 opened up without a hint of traffic congestion to slow our travels.  This was definitely what we were supposed to be doing as that is very rare we understand!

Our guest of honor had already made plans for dinner that evening so we did the most natural thing and crashed it!  Jac and the other four guests were quite accommodating and made us feel like part of the group.   We all shared our connection to the birthday girl and her hubby and then described what we all did for a living.  It turns out one of the guests, Shelly is a voice over artist and has her own company that produces radio commercials and internet infomercials.

Where am I going with all this?  You may already know!  Jennifer chimed up that I had taken a voice over class and bought the right equipment.  You may remember that from a previous post, It’s Been a While.  I had my demo produced and auditioned online for about two months with no luck.  Two water leaks into my modest recording space and I took the sign that I had no business in voice overs.  Besides, ALS patients eventually lose their voice and it starts with slurring.  So unless I wanted to voice simulated drunken man commercials I should just stay away.  What do you do when you’re ready to give up on something?

Actually, I am very fortunate to have my voice still with me and strong.  Shelly humored me by complimenting my voice and that she could hear me doing commercials.  She kindly said she would put me in a few spots to see how it worked out.  We enjoyed an incredible birthday dinner with Jac and Marylou and the surprise was a great success.  We are privileged to call them friends.

Shelly is true to her word and within days of our return she asked me to run a script.  Ironically, I recently made the switch to Mac and my recording software was not set up.  Missed out on that one, but not a week later, Shelly gives me another opportunity.  Here is the result currently airing in California:

united_wholesale_flooring_0329-11

I was very rusty and dull on the first run, but with some coaching from Shelly, I think the final product turned out great.  I had a blast and there might be more to come. What I am most encouraged about is this complete stranger took the time to listen to our situation with genuine interest and follow through with something she didn’t have to do.  What needs to be realized is that Shelly made a dream come true.  I have a commercial airing.  Having a positive mental attitude is great for ALS and this experience was just the treatment needed for this ALS veteran.

Shelly is the real deal, so if you ever need voice over work done check her out at Somerset Productions.  Thank you for the opportunity, Shelly!

You never know what opportunities are out there and with whom you are going to meet.  So, are you pursuing dreams no matter what your physical limitations might be?  In the beginning of our ALS journey we did throw out some of our old dreams, but we created new ones.  Take the time and do that exercise if you start feeling down.  Dreaming is healthy!

Two Masters Degrees After ALS Diagnosis!

Jeff Lester, who is receiving
two master's degrees May 1, hopes
to  raise awareness for the disease
that has immobilized him.
News-Leader file photo, 2011

Written by Didi Tang from News-Leader

When Jeff Lester of Lebanon launched a campaign to get to graduation in Dearborn, Mich., he thought it was going to be a long shot.

The 44-year-old was diagnosed with Lou Gehrig’s Disease 18 years ago; he is now a quadriplegic and relies on a ventilator to breathe.

But he will be able to make the trip to the University of Michigan-Dearborn to receive his two online master’s degrees thanks to a St. Louis-based humanitarian group.

Wings of Hope, whose mission is to extend human kindness to those in need, will fly Lester to Michigan for his May 1 graduation, said Doug Clements, president of Wings of Hope.

“When one human being comes to another human being with a problem, we feel there’s an obligation to solve that problem,” Clements said.

Founded in 1962 by four St. Louis business executives, Wings of Hope provides humanitarian services in 45 counties, Clements.

In the Midwest, Wings of Hope has provided transportation and medical treatments for people in need, Clements said.

Lester wasn’t seeking medical treatment, just a chance to attend his graduation ceremony.

“Jeff is dying. His time on this planet is going to be short,” Clements said. “Our role is to make that time on the planet as best as it can be.”

In an e-mail, Lester said he once marketed his family’s printing services to Wings of Hope, and the organization came to mind when the family was looking for ways to get Lester to Michigan.

“My reaction to this news was overwhelming joy because when I started my graduation campaign I knew it was a long shot but then again my life since being diagnosed with ALS has had multiple against-the-odds moments.”

Lester did not seek donations initially but started after people who wanted to help asked him to.

As of Wednesday, Lester said he had $3,000 in cash donations and another $1,450 from a raffle ticket sale.

The money will help pay for commercial flights for his wife and their three daughters as well as other travel expenses, such as hotel rooms and a wheelchair-accessible van, Lester said.

Wings of Hope will fly Lester in a twin-engine aircraft, Clements said.

Depending on how much Lester and his equipment weights, Clements said he hopes at least one member of Lester’s family can accompany him on the plane.

If Lester raises more money than he needs for the graduation trip, he would use the extra money for a new technology system that allows him to speak through eye movements, he said.

The system costs more than $4,000, Lester said.

Steven’s Say:

Fellow PALS, Jeff Lester is truly an inspiration on how to live with ALS.  Check out Jeff’s USA Today May 9th, 2011 article:

ALS disease affects bodies, not determination

which talks about his journey with ALS and his determination to pursue these two masters degrees!  It is PALS like this that give me hope I will be able to keep my positive attitude as my progression continues, albeit much slower than usual, thank God!

Jeff Lester is one of my ALS heroes.  Who inspires life in you?  Who do you inspire?

Foot switches, Track balls and bears, oh my!

Things May Have To Move to the Feet…

I’ve been getting’ by okay by using Dragon Naturally Speaking version 11 Pro along with a very carefully chosen Logitech mouse with the right click button adjusted to not click so easily (a little slip of highly calibrated paper under the button) and the left click button modified with some rubber pad bumps to stop my forefinger from sliding backward.

For many years I used the 3M pistol grip mouse as seen in this picture.

I have recently talked to the local ALSA to discuss options for controlling the computer with my feet. My hands will still work for short periods of time or where I need the most accuracy, but if hundreds of clicks are necessary, my finger and hand will get very tired. I still do a lot of video editing, producing and encoding along with gaming and computer drawing/art. I figure if I can use two hands to move the mouse around, then I could use a foot pedal to control left, right and custom buttons with my feet.

The following is an assortment of devices that we are ordering and that I have either already tried or will be testing for review. “I’m the high-tech, handicapped beta tester”

You can search on the web and very quickly find all sorts of solutions. A few that stood out to me are the Savant Elite foot pedals which can be used for Mac or Windows and also can have buttons with custom programmable features such as single click = double-click or a button that opens your inbox with one click, etc. Eventually, even controlling the cursor movements will have to move to the feet. http://www.kinesis-ergo.com/foot.htm

Later of course, all these functions will move to eye or head tracking devices as progression continues. The following links are for the the foot pedals and large trackball that I will be testing.

http://www.fentek-ind.com/Bigtrack.htm

Some organizations have done extensive work to offer free solutions for handicap people. One such piece of software can be found at http://www.cameramouse.org/. It uses your own web cam to tack your face! A free download. I’m actually so amazed that it works almost as well as the $1200 Head Mouse Extreme by origin instruments http://orin.com/access/headmouse/index.htm. I used this device for a number of months and found it to be very difficult to control and with poor software which was also very outdated (antient, in the high-tech world). It seems to be optimized for very basic computer use and when increasing its sensitivity to cover my 24 inch monitors, it then became too difficult to hold your head still in order to hover over a letter or icon. Even after playing with sensitivity and acceleration settings. Virtually impossible to use for any work that requires accuracy. Yes, I am somewhat of a computer nerd and hobbyist with nine systems.

Check out Augie’s SETUP here !

If anyone would like to write me about computer operation or input devices, I would be more than happy to help any patients or caregivers with as much assistance as they need. I’m happy to donate all of my time and knowledge regarding getting by day-to-day with ALS issues freely at any time.

I also offer remote, full computer support services. Write me!

Steven’s Say:

My good friend and fellow PALS, Roger Childs wrote the article above.  He is truly an inspiration on how to live with ALS and is always wanting to help others.  His article is a terrific resource and his blog covers the gamut of living with ALS with grace, humor and reflection.  Check out his full blog at http://rogerchilds.blogspot.com/.  Thanks for sharing, Roger.  You’re the best.

Extra Hands for ALS Volunteers Rock

The day started a tiny bit chilly with a small breeze in the air.  However the sun was shining and things warmed up nicely.  Outside spring cleaning was on the agenda consisting of trimming bushes, preparing pots for spring flowers in another month or so and cutting decorative grasses that grew with abundance last year.  Of course, there is the need to clean up all that gets cut as well.

There is something about Spring that brings out the best in people.  In this case a new season wasn’t needed at all.  We had the privilege of having one of our Extra Hands team over today.  For a refresher, Jennifer and I started the Denver Chapter of Extra Hands in 2005 after it had been founded in St. Louis by Jack Orchard.   Jack saw the incredible need for  ALS patients to get some help while educating students on some of life’s more difficult lessons.  Extra Hands has since been adopted by the Rocky Mountain Chapter of the ALS Association since 2009.  Thank you, ALSA!

Hedge trimmer, check.  Branch clipper, check.  Gloves, check.  Chainsaw, check.  Gotta love all the gadgets that come out this time of year.  For over two hours our three students put their backs and hearts into helping us clean up our yard.  We filled six 45 gallon bags with twigs, evergreen needles and other debris!  They certainly kept me going as I have a hard time staying out of a project, but I simply could not keep us with these healthy young adults!  I include Jennifer in that last statement!  ALS has destroyed my endurance and strength, but not my spirit.  They were able to spend some extra time eating lunch with us and catching up.  The energy young people bring into our lives is priceless.

Thank you all for your help today.  We couldn’t do it with out you!

Achieving Dreams-Must Watch Video!

httpv://www.youtube.com/watch?v=YuwXTZVNz5g

 

Steven’s Say:

In a previous posting I mentioned that everyone is dealing with something.  After watching this story, I am feeling fortunate and inspired.  Our minds are incredibly powerful and it’s amazing to think what can be accomplished when we are healthy…much less when we are facing adversity.  What do you think? ~Steven Bishop

Acts of Kindness

Jennifer and I were watching the TV show Undercover Boss the other night which featured United Van Lines.  This show usually takes the CEO of a featured company undercover to visit the front line employees and facilities.  Employees who they worked with under guise are then brought back to the corporate office for feedback.

This particular episode brought back strong feelings from our initial diagnosis strangely enough.  As we watched the movers in the show packing a house up and then moving  the heavy furniture and limitless boxes onto the truck, we were reminded of an incredible deed from over 9 years ago.

I worked for Sprint as a Data Sales Manager before the ALS diagnosis and had some wonderful friends and colleagues.  We had sold our two story home in favor of a ranch style for mobility purposes.  About a month before we moved, we were surprised by my old crew at Sprint with a timely gift.

One of Sprint’s major accounts back then was Graebel Van Lines.  My former colleagues had asked them for a favor.  We were presented with a $5000 moving package at a casual Sprint gathering and it knocked us for a loop.  As I write, I am reliving the relief and joy of that presentation with tears in my eyes.

This was the 5th house we were moving into, not including two apartments in between.  Not once had we had professional movers.  We really didn’t have a full grasp of how much they really do.

Moving day came and of all days on September 11, 2001.  The movers had already unplugged the TV’s when we received the call from a friend about the attack.  We plugged the TV back in and watched in horror as the second plane hit.

So on this doubly emotional day we had as stress-free of a move as could be possible thanks to some very thoughtful friends and an incredibly generous company.  Our move went over $5000 and Graebel waived the additional fees!

These memories keep my positive mental attitude intact and remind us how very fortunate and blessed we are.  In your daily life, what are you doing to keep positive and mindful of your blessings.  Are you paying forward random acts of kindness that may impact someone for life?

Judgement vs Mindfulness

Have you ever stopped to think that everyone has something going on in their life that effects their behavior?  The man who just cut you off in traffic, the women who screamed at the bank teller, the homeless person on the corner asking for money.

I am dealing with ALS, true enough.  However, there are people out there dealing with divorce, abuse, poverty, hunger, depression, other illnesses, etc.  The thing to keep in mind is that there is always someone that has it better than you and always someone who is worse off.

It is so easy to judge the person behind the behavior, but in all truth we rarely know what is driving the specific behavior.  Let me share an example:

Our family was running errands and we stopped at King Soopers.  Because of my ALS, I have a handicap license plate and placard.  I was tired and wanted to stay in the car while Jennifer picked up a few things.

A man walked in front of our car and the handicap parking space.  He looked at the emblem on the car…then up at me…then back to the car…and then mouthed something to me.  I opened the door and asked him what he said.  “You’re a tool,”  was his reply.  O.K.  I’m not sure what that means, but I know it is not complimentary.  He mentioned that I don’t look disabled and I countered with the fact that I have ALS and he didn’t know what he was talking about.  He went back to the “tool” comment and walked into King Soopers.  I was smoldering.  Still waiting for Jennifer to return I calmed down until my “tool” friend returned.  I rolled down the window, “May I ask you a question?”  He did not reply.  I asked, “What does disabled look like to you?”  For all he knew I was a paraplegic sitting in the car.  He just shook his head and continued walking.  My final comment, “I hope you sleep well tonight.”  I wanted him to think about our interaction that evening.  I sure did.

I was really upset by this mans audacity and ignorance.  (Ironically, I had previously been judgmental to whom should be in handicap spots before ALS).  But then I started feeling sorry for him.  Something in his life triggered his reaction that I was completely unaware of.  Could he just be class A jerk?  Sure, but something would have made him that way.   I just fell right into it with my verbal volley.  The moral for me was that all of us are wired differently and maybe my job is just to observe behaviors and not judge the people.  It takes a lot of the angst out of situations and keeps me mindful.  This leads to less stress and I’m all about that!

Don’t get me wrong, I’d like to say this is how I handle all confrontation, but I would be a liar.  However, taking the time to review a situation and evaluate how things could have happened different makes us better people for the next time somebody’s “issue” comes right smack in the middle of our perfect lives and upsets the apple cart.

Our world needs more patience and understanding.  There is so much conflict that could be easier resolved.  Will this mindfulness bring peace in the middle east?  How about fixing our financial or political system?  I don’t know, but if we all put a little positive energy out there, I know it will help.  What do you think?

Ten Years!

On March 7, 2001 I received my initial diagnoses of ALS.  Since then, I have had a total of four neurologist’s opinions and each time I was hoping for a different outcome.  But alas, it was not to be.  For a physical reference I reread my posting from Five Years.  Interesting.  I could almost re-post that article regarding my health with a few exceptions.  I’m just stunned.  There is more weakness in the hips and shoulders, but I still have not lost function of anything in particular.  Jennifer might argue that my brain has atrophied and I would tend to agree!

It seems as though ALS attacked me and then lost interest and neglected to continue with much zeal.  I am very grateful for this.  And yet, it leaves me in this purgatory of life not really belonging to the normal functioning group and definitely not belonging to the normal progressing ALS population.  Because of this my mental state has not been as strong as what it was when I posted Five Years.

My involvement with ALS has taken me from local support groups to the national MDA,  ALS/TDI via the Tri State Trek and Northwestern Mutual Insurance.  In 2005 we established the Denver Chapter of Extra Hands for ALS and after the national organization faltered in 2008, our chapter has been energetically resurrected by the local ALS Association Rocky Mountain Chapter.

However, since 2008 I really haven’t been involved with ALS too much.  Jennifer’s dad, Bob got very ill with cancer complications from his lung transplant and passed away in May of 2009.  Jennifer’s mom, Bettie was diagnosed with lung cancer the following January and passed away in May of 2010.  We had also attended an unusual amount of funerals and our son literally wondered if we “knew everyone who dies.”  It was time to take a break.

Occasionally, I will attend a high school recruiting meeting for Extra Hands and ALSA.  I really enjoy this as it reminds me why we started Extra Hands here in Denver those many years back.  These students are amazing and really gives me faith that our youth can do anything they set their minds to.  In fact, we all can and they help solidify that for me.

Jennifer has been quite busy during the last year, taking personal and business development classes.  One of her new businesses is helping family caregivers in their journey.  She recently informed me that 8000 baby boomers a day will be turning 65.  So at some point we are all going to be faced with a caregiver situation.  Please visit her  website at www.caregiverpath.com.

So for the last two years now, I feel a bit like a bump on a log.  Just watching things go by and not harming anything.  But, I sense I lost my purpose again.  What a fickle beast it is.  I feel my best when I am helping people.  I guess over the last two years I felt that since my progression is so slow and I have difficulty relating to the normal progression of ALS that I have no right to speak about the difficulties of ALS any longer.  What could I say that would be a benefit of those that are dealing with ALS now?

Well, I am willing to give it a try anyway and wanted to use my ten year anniversary as a relaunch of this website with a new look and more information.  I will be posting more with audio and video tools and providing resources that I hope will help those with their ALS journey.  If some of the old postings have links that are not working, please bring them to my attention and I will do my best to remedy the situation.  I am open to feedback on what you want to see or know about.

I humbly ask you to subscribe to my postings by filling in your email in the pop up at the bottom of the page.  I had a good subscription list with the previous version of this site, but I have been unable to access it for quite some time for some reason.

There are quite a few of us with very slow progressions and hopefully that gives hope to those already diagnosed.  The doctors have statistics, but each case is individual.  Challenge yourself to be the most upbeat and positive you have ever been in your life.