Thank you, Dr. Marvin!

Jennifer and I just had a great opportunity to share our ALS journey on Dr. Norman Marvin’s weekly conference call this evening.  Dr. Marvin’s is a medical doctor with a doctorate in pharmacology as well. His biography can be found at www.DocMarvin.com.

I have had some incredible results with a supplement called Protandim.  We discuss our journey and experience with Protandim on Dr. Marvin’s call.  Archived calls can be accessed via Free Conference Calling.com.  Simply complete the form, and add the conference code 300447.  We are the 2/21/2012 call.

We believe so strongly in the science behind Protandim that Jennifer became a distributor.  Check out this Primetime investigative report at www.ABCLiveIt.com.  To find out more or to place an order please visit www.LivingYourPotential.com.

Love, Marriage and Disability

The following article was written by Peter Rosenberger.  I feel I was meant to share this article with you as it is very applicable in our journey with ALS.  Frankly, it can be applicable to any marriage dealing with adverse conditions.  Isn’t that all of us?

Love, marriage, and disability — four ways to keep your relationship strong despite chronic pain and disability

 

By Peter Rosenberger

Published February 19, 2012| FoxNews.com

More than twenty-five years ago, I married my wife shortly after she survived a horrific car accident. To date she has endured more than seventy operations (fifty on my watch, so far), the amputation of both legs, and nearly $9 million dollars in medical bills. Through this continuing ordeal, we have had countless hospital stays during birthdays, anniversaries, and holidays …including Valentine’s Day.

Raising a family and keeping love alive in a marriage with a spouse who is constantly sick or in severe pain is an extreme challenge; one with many casualties.

The divorce rate in couples with a disability in the family hovers around 90% and relationships with a disability or chronic medical condition face significant pressures on the love holding the marriage together.

Relationships that endure through these types of challenges seem to all share four characteristics which allow love to transcend the brutal circumstances.

1. Separate the person from the pain

How do you keep love and passion thriving in a chronic medical catastrophe where the suffering is not limited to a short-term illness or injury?

Different from Alzheimer’s or dementia, marriages impacted by one spouse living with a broken or diseased body while retaining complete cognitive awareness encounter a different set of emotional trials for the marriage. The challenge for the healthy spouse is to maneuver through the minefield of medical issues, attending to each of them, but never losing sight of the suffering person’s heart.

The challenge for the sick or injured spouse, even from a wheelchair or while in severe chronic pain, is to recognize that matters of the heart, though often less demanding, are just as important (if not more so) as the needs of the body.

2. Keep living, even while hurting 

It is appropriate to acknowledge our hurts, but, after more than a quarter century of living with someone who daily suffers from severe chronic pain, I have witnessed the difference between “living with pain” versus “living while in pain.”

As Christ hung on the cross in excruciating pain; (the word “excruciating” is a Roman word invented to describe the horrific pain of crucifixion), He acknowledged His own agony, but never wavered from the relationship between Himself and His Father, His mother, the thief dying next to Him …and even those who crucified Him. He lived while in pain.

To love someone IS to live …even while burdened with extreme agony and challenges.

3. Love even while hurting 

Everyone hurts at some point; even super models and professional athletes suffer physically at times. Using sickness or feeling bad as an excuse to disconnect from the needs of close relationships sets a horrible and destructive precedent that seems to say, “I can be focused only on me whenever I feel bad.”

Experience teaches me that life-changing and transcending love abounds when we choose to turn our eyes to others …particularly (and peculiarly) while carrying great burdens ourselves.

We cannot escape the relentless difficulties in this life; we do however, have the opportunity to embrace each other, even while in pain, and discover love …and romance, are not dependent on external circumstances, but instead reside solely in the heart. As the wonderful Rodgers and Hart song stated so well:

My romance doesn’t have to have a moon in the sky
My romance doesn’t need a blue lagoon standing by;
No month of May, no twinkling stars,
No hide away, no soft guitars.

My romance doesn’t need a castle rising in Spain,
Nor a dance to a constantly surprising refrain.
Wide awake, I can make my most fantastic dreams come true.
My romance doesn’t need a thing but you.

4. See the heart, not “the chart”

For caregivers I offer this advice: if the love of your life struggles with chronic disease or injury, take a moment to see beyond the medical chart, the broken body and the pain-filled eyes…and connect to the heart of the extraordinary person who captured your heart.

And for those suffering, look deeply into the eyes of the weary soul who looks after you, quietly hold hands together, and bask in the love you both share; a love that is defying the odds.

Peter W. Rosenberger is the president of Standing With Hope, the non-profit prosthetic limb outreach organization that he and his wife, Gracie, founded in 2002. He is also the author of numerous articles and served as the writer for his wife’s book, “Gracie: Standing With Hope” (Liberty University Press 2010). Peter is currently working on his next book in which he offers encouragement and practical help to caregivers of chronically ill individuals.

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.