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Lucky 13!

It’s been 13 years as of February 15th when I received my first opinion of ALS diagnosis. Confirmation was March 15th.  Who would have thought I would still be here?  Not many, for sure but I give Him all the glory!

Since my last post with Doc Marvin, we have had hundreds of inquiries regarding my ALS journey and a supplement that I believe has helped my progression.  Unfortunately, the recording Jennifer and I did with him can no longer be accessed.  I thought this might be the right time to summarize my experience up to and with Protandim.

As you know from our “About” page, I was diagnosed in 2001 and told to get my affairs in order as I only had 2-5 years to live.  We were devastated but eventually decided to engage deeply in the ALS community including the ALS Association (ALSA) and the Muscular Dystrophy Association (MDA).  After a few appearances at local MDA events, we were nominated to the national Jerry Lewis MDA Labor Day Telethon in 2002.  Jerry Lewis was suffering with pulmonary fibrosis and was on a regimen of high dose Prednisone inflating his body to twice it’s normal size.  He only got out of his desk chair twice that year: once for his National Goodwill Ambassador, Mattie Stepanek and second for Jennifer and myself.  For some reason, Jerry befriended us and appointed himself our positive mental mentor.  After writing down our phone number live on stage he proceeded to call us every week for the next year or so to make sure we were in the right frame of mind.  God bless you, Jerry.

In 2003, Jerry influenced Parade Magazine to put our family on the cover which you can find on the right side of this post.  When you get that kind of publicity, people find you!  We fielded hundreds of calls from people genuinely trying to help us and for that we are eternally grateful.  There were so many ideas with every pill, juice and berry along with magnets and special mud in Mexico.  It was overwhelming and they all had one thing in common: testimonials.  Now I think testimonials are good, but I am a mathematics major and I needed to have the science that backed them up.  Frankly, the science just wasn’t there and the different approaches would have been cost prohibitive to try them all!

Fast forward to 2009 when a friend introduced Protandim.  We reminded him of the details mentioned above as he met the same skepticism as all the other possibilities.  In defense, he directs us to this ABC Primetime Investigative report, www.ABCLiveIt.com.    Along with the video, he set up a meeting with the formulator of this supplement, Dr. Joe McCord where we were able to spend almost two hours drilling him on why he thought Protandim could benefit ALS and many other conditions.  The difference was the science behind it all.  I’m not going to pretend I understood everything, but after careful consideration and science review we implemented Protandim in November of 2009.

Now I have been diagnosed four times by four different neurologists.  I also have had a slow progression, but that doesn’t mean I am symptom free.  During this time, my progression dealt me chronic fatigue, lack of energy and endurance, fasciculations, muscle spasms and depression.  I had not lost use of anything in particular, but I did have muscle wasting in my shoulders and upper legs specifically.  I would use a wheelchair and/or AFO’s for malls and airports and be the first to find a chair at a gathering where people tend to stand for hours!

I didn’t notice any ALS related benefit with Protandim for over a year.  I continued to take it because the science is so compelling that it reduces oxidative stress, inflammation and fibrosis that I knew it was going to benefit me regardless of changes in my ALS.  Then I started having some better days and they came frequently enough to where I had the initiative to work out.  Now that hadn’t happened in a very long time, since before ALS!  The thing that blew me away was the fact that I recovered after that first workout like I think most people my age would and it encouraged me to continue on a regular basis.

Months later I had my annual doctors visits with my primary care physician and my physiatrist.  They both informed me that they saw no progression in the last year and in fact they saw improvement in some areas.  I was quite intrigued with the last statement as I felt confirmation the workouts were beneficial.  Then Jennifer and I heard, “I know your son is a teenager now, but I think you’re going to be around to see him get married and have kids.”  Whew!  We had given up on that dream in 2001 when I was simply hoping Chris would actually have an active memory of me instead of just staring at a picture.  The fact that both of these doctors recognized and validated what Jennifer and I had seen over the last year was liberating.

I had an electric wheelchair, two manual wheelchairs and a walker taking up room in my garage as an indicator of what my life was to be and after those doctors visits we took a leap into our next life.  It was a life that had a future to it.  So we returned the equipment and I started driving again after almost 11 years.  I have completely eliminated my antidepressant medications and drastically reduced my symptomatic ALS medications, baclofen and etodolac.

Now let me be perfectly clear.  Since Protandim is a supplement and not a drug it is not meant to treat, cure, mitigate or prevent any diseases.  This is simply my experience as I have done nothing different over the course of my progression.  No special diet, frequency therapy, etc.  I AM NOT CURED.  Mentally, I think I can do anything, but physically I still have fine motor skill issues and my body fatigues when I do too much.  Fasciculations, stiffness and muscle cramps are still there but greatly reduced.  My quality of life is simply better.  I believe that Protandim has allowed my body and mind to workout and recover and I don’t know who wouldn’t benefit from that if they have the ability.

As I wrote with the last post, we believe so strongly in the science behind Protandim that Jennifer became a distributor.  Check out this business overview at www.abetterlifestartsnow.com.  To find out more or to place an order please visit www.LivingYourPotential.com.

This is not about making money off of chronically ill patients and Jennifer certainly doesn’t focus on ALS patients.  We have been asked quite frequently about my journey and wanted to write it down so more people could access it if they wanted to.  If you would like to order through another distributor or talk to one not affiliated with Jennifer, that can easily be arranged.  We simply want to give information about a tool that has been helpful for us both physically and financially.  What you do with this information is totally up to you!

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 by calling 1-559-546-1799 Access Code 200765#.  Then choose Reference Number 4 and then #.  I apologize, but Doc Marvin’s call is no longer available.

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.

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
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.

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.

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!

Jeff Lester, who is receiving two master's degrees May 1, hopes to raise awareness for the disease that has immobilized him.
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:

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?
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