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Archive for the ‘Reflections’ Category

Lucky 13!

It’s been 13 years as of February 15th when I received my first diagnosis 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 Nrf2 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 the initiation of this Nrf2 activating supplement.

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 a Nrf2 activator.  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 an ABC Primetime Investigative report done in 2005.  Along with the report, he set up a meeting with the formulator of this Nrf2 activator, where we were able to spend almost two hours drilling him on why he thought it 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 this little yellow pill 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 Nrf2 activation 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 felt strongly 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 and ALS medications but still take one 20mg baclofen (I used to take six!) at night, just in case, to eliminate any muscle stiffness at night that might make it difficult to fall asleep or wake me up.

Now let me be perfectly clear.  Since this Nrf2 activator 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 can still appear but are greatly reduced.  My quality of life is simply better.  I believe that Nrf2 activation 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.

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 have questions about what you’ve read please select the “Contact Form” tab above.  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!

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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
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.

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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!

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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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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!

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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?

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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?

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