Where are you FALL??

If it weren't for my house looking like an orange, brown and yellow explosion from all the fall decorations, the sounds of a football game screaming from the TV, and stacks of school papers sitting on my kitchen table, I would have a hard time believing it was no longer summer.  I should be baking pumpkin bread, but yet, it's too hot to turn on the oven.  What little tan I had is long gone, and I'm ready to break out my boots and sweaters, HOWEVER,  here at our home in Southern California, it's currently 100 degrees outside! What gives??  Ok, anyway...

Speaking of summer, how about that ALS Ice Bucket Challenge phenomenon?!?! Unbelievable!  We were beyond thrilled to see the awareness and support ALS was getting as a result of pouring a bucket of ice over one's head, and it certainly was an answer to many prayers.  The ALS Association reports that 115 million dollars was raised from over 3 million donors.   Jim and I feel like our world just grew by millions of people.  Prior to this challenge, when I would mention ALS, most people had never heard of it. Now when I tell someone about Jim's ALS diagnosis, majority of the people have heard of it, and even know of someone battling the disease. Welcome to our world, Jim has never felt so popular!  Jim had close to 40 people dump a bucket of ice on their head in his honor.  We really enjoyed watching the videos, you guys are all awesome!  Maybe we all should dump another bucket on our heads today just to cool down!

"The ALS Association has approved an initial expenditure of $21.7 million in funding to support six programs and initiatives to expedite the search for treatments and a cure for ALS. Additionally, $12.5 million in matching donations bring the total commitment to $34.2 million."  So exciting, praying a cure is coming soon!

Here is the link to our video for those who haven't seen it.  I was not expecting it to literally take my breath away by how freezing cold it was.  It was fun nonetheless.  I think our 5 year olds took about 7 ice bucket challenges, they really got into it, and really love watching all the challenge videos on YouTube (especially the Ice Bucket Challenge fails, yikes).

In late August, Jim was seen by a team of ALS specialists at UCI.  They have such a great team of doctors and therapists there.  It had been two years since we'd been there, and we were way overdue.  Overall he is doing fine (relatively speaking).  The muscles in his legs remains strong, and his breathing levels are good.  They did recommend a feeding tube, to help with the struggle of keeping is weight up and his calorie intake.  Jim had the tube put in a couple of weeks ago.  It was a quick surgery, we were home in about 4 hours.  The first two days after surgery weren't easy, but he is recovering well.  The tube feedings are going fine.  He currently gets 3 a day, and 3 meals a day by mouth, pureed food only.  He is a soup connoisseur!  If it can be blended smooth, he will eat it!  He does say that eating through a tube takes a little getting used to, and I can only imagine. It really freaked him out at first, but he's adjusting.  He's such a trooper.

On September 20th, we participated in the ALS Guardian Angels walk.  What a great event!  Our team, Racobs Brigade, came in first place for donations, and Jim was the honorary ribbon cutter!  It was such a great day, and having all of our family and friends there made it just that much better. The foundation surpassed their goal of $50,000, and do such an awesome job of helping families effected by ALS.  Thank you to all that came out, and/or made a donation!

Jim's mom was here for a week from Colorado, and Jim really enjoyed his time with her.  Our pastor came by the other day to pray with Jim, and that really made his day! Friends and family are always stopping by, and I know it means so much to Jim.  We are so fortunate to have such an amazing support system.  My heart breaks for those battling anything without faith and support of family and friends. 

Jim and Pastor John Randall

Well, I think that's it for now, thanks for stopping by!

xo

Jim and Dionne
In the multitude of my anxieties within me, Your comforts delight my soul.  Psalm 94:19

ALS Guardian Angel Walk 2014

On Saturday, September 20th, Jim and I, along with family and friends, will be participating in the 3rd annual ALS Guardian Angels Walk. If you will be in the Irvine area on September 20th, we would love for you to join us! The walk benefits the ALS Guardian Angels Foundation, which is an organization dedicated to giving financial aid to victim's of ALS. A team has been set-up in Jim's honor called "Racobs Brigade". If you're interested in joining or supporting our team, please visit the ALS Guardian Angels Walk website for more information. Last year we had a group of about 25 of us, all wearing our camoflauge shirts, in support of Jim and his battle against this disease.  He is definitely not in this alone, together we make a mighty force!

ALS Guardian Angel Walk 2014

ALS Guardian Angel Foundation

I hope everyone is enjoying their summer! The highlight of Jim's summer, in addition to countless hours of watching the World Cup, was our trip to Sonoma,Ca for the Nascar Sprint Cup race. A longtime fan of Nascar and Team #24, the girls and I surprised him with tickets for Father's Day. He has always wanted to see Infineon Raceway, and it's as pretty as it looks on TV. We had a great time touring Napa and just relaxing. I was a little apprehensive at first, not knowing if it would be too much for Jim, but he did great! Of course, his outings are never without a few challenges, but we get through them by the grace of God. I knew the airport security scanner would be a problem since he can't lift his arms, so we were prepared when they took him to the side for a full pat down. What we weren't so prepared for was Jim using the restroom at the track. We got a few looks as I was standing outside the men's restroom unbuttoning/unzipping and rebuttoning/rezipping his pants for him. Jim said they were just jealous, haha, always an adventure! Such a blessing to have that time away, I wouldn't have traded it for anything.

Jim has an appointment in early September with his neurologist at UCI. He hasn't been back since his diagnosis in 2012. We're anxious to see what that will bring.  Praying he'll be able to get fitted for a neck support to help with his neck pain, and possibly a feeding tube to eliviate the stress of trying to eat three meals a day.  I will keep you posted on that!

Hints of Fall have arrived, and I can't wait for the years best season to get here already. First Shark Week on Discovery, than soon after football season! What can be more exciting than those two things (other than sending the kids back to school)?!

Thank you for your continued thoughts and prayers. We appreciate each and every one of you and hope to see you in September in your camo gear!  Team Racobs Brigade!

xo
Jim and Dionne




Infineon Raceway June 2014



4th of July 2014

 

Lou Gehrig - the First Face of ALS

Seventy-five years ago, in 1939, 35 year old Lou Gehrig delivered his famous farewell speech.  Two years later, Lou Gehrig died of ALS. Today, both on and off the field, Lou Gehrig remains an inspiration to millions. He continues to represent fortitude, humility, and courage to the tens of thousands of Americans living with the disease that bears his name.  Since 1939, an estimated 375,000 Americans have been diagnosed with ALS. Seventy-five years later, there is no cure, no medical treatments or drugs that effectively treat this horrendous disease.  ALS today is under-funded, under-resourced and it is largely ignored.

When Jim was diagnosed with ALS, we knew very little of the disease that would forever change our lives. Most people we meet know very little about the disease, and some have never heard even heard of it. May was ALS Awareness month, and yes, I'm a month behind, welcome to my life, however, Jim and I encourage you to help us spread awareness. Sadly, most ALS patients don't live long enough to be advocates or a voice for their disease.  Thousands of ALS survivors do not participate in fundraising events every year wearing "I'm a survivor" t-shirts. Victims of ALS need our help, spread the word, WE NEED A CURE FOR ALS!!

Ok, I'll step down from my soapbox now.  Summer is upon us, yay!!  We have a lot planned over the next couple of months, I hope Jim is done relaxing! As far as how Jim is doing, well about the same.  No major changes for the better or worse.  He's still getting around on his own, however, his neck gets really sore if he stands or walks for too long.  Eating is still a drag, as chewing and swallowing doesn't come easy.  Lounging on the couch is his happy place with the Discovery Channel on the TV, his Bible in his lap, and Pastor's Perspective on the radio, all at the same time.

In April, Jim was baptized at our church. 
It was a beautiful day!

Like Mr. Gehrig, Jim may have been given a bad break, but he has an awful lot to live for.  It's our hope and prayer that someday we'll be able to name a cure after Lou Gehrig instead of a disease.

A little education goes a long way, here are a few of our favorite ALS sites:

ALS Association

Team Gleason, founded by Steve Gleason, former New Orleans Saint, living with ALS.

Augie's Quest - Winning the War on ALS

In the OC area on September 20th?  Join us at the 3rd Annual Walk for ALS Guardian Angels 2014
More info on how to join our team soon!

xo

The Dreaded Blue Curb

Happy Daylight Savings Time, Spring is right around the corner! I hope everyone has had a great start to their 2014.  It has actually been pretty quite in the Racob's household.  In February, Jim slowly recovered from his Bronco's not showing up to the Super Bowl, and we celebrated Jim's 49th birthday.  We spent the day hiking in O'Neill Regional Park, then had P.F.Changs take-out for dinner.  Simple, yet just how Jim likes it.  Next year we will be partying like rock stars for his BIG 50!

So, how is the soon to be Over the Hill guy doing?  Well, Jim has ALS, ALS does not have Jim, I can tell you that!  I am still amazed at his positive attitude and outlook on life.  Though there are daily struggles, he never complains about anything, nor has he ever had the "poor me" attitude.  He remains focused on his Faith, and the power of prayer.  I am truly in awe of his strength.

It has been 5 months since Jim's stem cell treatment, and it's hard to say exactly what the results have been. I will say, that his progression is slower than I expected, being that ALS is known for its rapid progression.  He is still walking and talking (though not clearly), and he feels no effects in his legs.  Eating is probably is biggest struggle, since he has no tongue muscle.  Something that would normally take about 15 minutes to eat, can take Jim up to an hour.  For someone who used to love food and love to eat, it's now more of a burden.  Because of the minimal strength in his arms, we decided that it was in his best interest (and those around him), that he no longer drove.  A few weeks ago, he sold his truck, a very bittersweet day.

Jim continues on a daily regimen of supplements, and sees his Functional Neurologist about once a month.  He has never been one to enjoy reading, but it's something that his slower lifestyle has allowed time for.  He just finished reading the book, Flight to Heaven, by Capt. Dale Black.  He absolutely loved it, and highly recommends it.

At the time of Jim's diagnosis, we were given an "ALS Patient Packet", it was a fat packet, full of information from breathing machines, handicap van conversions, ALS support groups, to a Power of Attorney form, just to name a few.  It's nothing you would take pleasure in reading, and I haven't opened that packet again since the day we were given it almost a year and a half ago.  Also included in the packet was a Handicap Parking Application.  I remember telling Jim at the time, that I wasn't about to apply for a handicap placard. Handicap placards were for the elderly or those in a wheelchair, and since Jim wasn't in a wheelchair, I would not be applying for one.  Kind of like when you call in sick to work, when you're not sick, and then wake up they next day with a fever. Ya, karma, we didn't need a handicap sticker. Not only that, but what about the stares or dirty looks, or even a nasty note left on our car from those that saw two presumably able bodies getting out of a car parked at the blue curb? Nope, wasn't going to happen.  I kept that tucked away as well, and if God willing, hoped to never have to use it.

Yesterday, Jim and I went to the theater and saw Son of God, great movie by the way.  A gut wrenching reminder of the pain Jesus went through for our salvation.   As we were driving around and around the parking structure, trying to find a place to park, Jim mentioned how nice it would be if we had a handicap sticker.  I reiterated to him, that we didn't need one.  If there ever came a time where he could no longer walk, then of course, I would be happy to apply, and after finally finding a parking spot on the back row, that was the end of that.

While lying in bed last night, I got to thinking about that dreaded blue tag again.  Something was gnawing at me, as it usually does when I'm trying to fall asleep.  It was then I realized, that one, my christian faith tells me there is no such thing as karma, it's all part of God's plan, and two, for someone who is battling ALS, wheelchair or not, does he not deserve this simple accomodation? Of course he does!  So, today I completed his handicap application, and we will park at the blue curb without fear of criticism or judgement.  In fact, I pity the person who decides to give us a dirty look or snide comment,  you just might get an earful from this ALS fighter's wife! 

I know a handicap sticker is not the most exciting of news and may not be worthy of most blogs, however, it's the small acheivements that gets us through our ALS journey, thanks for listening!

Grateful for all of you,
Jim and Dionne

"Being consumed by what people think of you, is the fastest way to forget what God thinks of you"




There's always next year...







O'Neill Regional Park





    



 

Oh What a Year It Has Been...

At this time last year, we were struggling to find the hope in our future. We were just given the devastating news of Jim's ALS, and it felt like our world had just come crashing down around us. It's amazing that something as awful as Jim's diagnosis, could actually bring with it a whole lot of good. We have spent the last year growing our relationships with family, friends, and most importantly with our Heavenly Father.  We have discovered what is important in life, and what isn't. Today, we are more hopeful than ever in a bright future. Only God knows how it all turns out, and for those who belong to Him, it turns out well. 

It's been almost 3 months since Jim's stem cell treatment, and to say for certain it has slowed progression is hard to determine. I do know that he is still walking, and feels no effects in his legs, so that in itself is very encouraging! He does continue to struggle with his speech and eating is difficult because of having no muscle control in his tongue. His left arm/hand has lost all muscle, and his right arm/hand functions at about 25%. His will, determination, sense of humor, courage and strength is functioning at 100%!

Jim continues with his daily routine of supplements, and is seen by his functional neurologist twice a week. His body is tired and sore, but his spirit is alive and well.

After 25 years in the business, Jim has officially retired from construction. He is enjoying spending his days hanging out with family, taking his best buddy Blu on long walks, and caring for his 8 backyard chickens. His honey-do list keeps him off the couch as well as his two soon-to-be 5 year olds (he's not getting off the hook this easy).  Most exciting, Jim taught me how to use his jigsaw and table saw, and together we made 12 Christmas crafts/gifts this year.  His tools are now mine!  Praying my next blog won't include anything about my missing fingers.

From our family to yours, we wish you a very Merry Christmas, and a blessed 2014. May your holidays be filled with the love of family and friends.

~ Jim and Dionne

 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”  Joshua 1:9




Thanksgiving 2013

        

A Little Wedding and a Whole Lot of Stem Cell

Jim and I had an amazing weekend in Carmel.  The Northern/Central California coast is so beautiful, and made for the perfect little relaxation spot to rest Jim's body prior to his stem cell procedure. Even more beautiful is the fact that Jim and I decided to stop in Santa Barbara and get married on our way to Carmel!  It was a long time coming, and we both really felt now was the time to finally make it official.  The wedding and the weekend couldn't have been more perfect, and we are so thankful it went as well as it did, and of course for our support team who made it all possible.

Upon our return from Carmel, Jim started his week of stem cell treatments, and I'm happy to say Jim did great!  The doctor told me after the second procedure that Jim was one tough cookie, but of course I already knew that!  The procedure was hard on Jim's body, and he was very tired and sore afterwards, but he is slowly but surely getting back to where he was prior to the surgery.  Jim is supposed to be resting for 3 weeks following the procedure, that has probably been the most difficult part. We have been told that it can take up to 4 months before he might notice anything different in his progression.  The new and healthy stem cells will not fix the dead cells in his body, but the hope is that the new cells will significantly slow the progression of the disease (that's about as far as I'll go with a medical description for fear of making myself sound incompetent).

We are so grateful for the opportunity to have this treatment done, thanks to the support of our family, friends, and even those we have never met.  It's comforting knowing that whether we're successful or not successful, we took advantage of every opportunity given to us in the hopes of controlling this disease.

"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."

Thank you all for dancing along with us!  xo



Santa Barbara, CA

 

ALS Guardian Angels Foundation

This past weekend, Jim and I had the great pleasure of meeting Stu Millheiser. Stu is the founder of the ALS Guardian Angels Foundation. This foundation is committed to helping families effected by ALS. 

"Most ALS related organizations are dedicated to finding a cure. Until then, ALS patients need help living. The ALS Guardian Angels Foundation is dedicated to helping patients and their families live with ALS while maintaining the best quality of life possible."

~Stuart Millheiser

We, along with a group of our family and friends, attended the 2nd Annual ALS Guardian Angels walk on September 21st. Over $50,000 was raised to support Stu's cause, and we were so happy to be a part of it.  You can find more information about the foundation on their website at ALS Guardian Angels.

On October 5th, our daughter Corie, along with two friends, are putting on a fundraiser called Race for Racobs.  The event starts at Capistrano Valley High School in Mission Viejo at 9:00am, and lasts until approximately 2:30pm.  You can find more information at their website:  http://race4racobs.eventbrite.com/. 

Soon, Jim and I will be in Carmel, Ca, enjoying a two night getaway, courtesy of the Ellen Degeneres Show!  We are beyond excited!  Jim will be enjoying a much needed 3 days of relaxation, getting mentally and physically prepared for his stem cell treatment. 

Looking forward to updating you all on how the treatment goes.  Until then, stay well, and remember to count your blessings!  xo

“You haven’t lived until you have done something for someone who can never repay you”





2nd Annual ALS Guardian Angels Foundation Walk 2013
Team - Racobs Brigade



Our sign: "In Honor of Jim Racobs"

Stem Cell - It's a Go!

Ok, Ok, so I won't be winning the "Blogger of the Year" Award, and I'm certainly not the next Pioneer Woman. My apologies for the 4 month hiatus. If only I had some fantastic recipes or amazing "Do it Yourself" projects to share on a daily basis!

But no time for that. However, things are finally getting exciting as far as Jim's stem cell progress goes! A couple of months ago, we got the results back from Jim's heavy metal tests. Turns out some of his heavy metal levels were high. Mercury and lead to be exact. For the past 8 weeks, Jim has been taking tablets to decrease these levels, and fortunately it worked! Last week, Jim was approved to move forward with the stem cell process. The procedure is scheduled for September 30th and October 1st.

We are very excited and hopeful the stem cell procedure will slow the progression of his ALS. Of course there are no guarantees, but we are always hopeful. As far as how he is doing, Jim is still 100% committed to the Paleo diet, and relies heavily on his faith.  Jim's muscle atrophy in his left arm/hand are pretty significant, and his right arm/hand are showing signs of weakness. His speech is significantly affected as well, and at times can be hard to understand, especially on the phone. Fortunately, he shows no signs of weakness in his legs. Jim is mentally and spiritually stronger than he has ever been, and for that we are very grateful. 

The last four days Jim has enjoyed exploring Utah, Yellowstone and Idaho with his sister Kim and our daughter Colbie. Colbie returned to college in Rexburg, Idaho, and Jim was fortunate to be the one to drive her there.

On September 21st, we will be taking part in a walk benefiting the ALS Guardian Angels foundation.  If you're in the Irvine, CA area on the 21st, stop by and join the Racobs Brigade!

Thank you, as always, to all that have made the stem cell treatment process possible through your support, prayers and donations.  I will let you know how it goes, in the meantime, I will work on coming up with some great "DIY" projects to grace you with. (not really)

"God whispers to us in our pleasures, but He shouts to us in our pain. Pain is God's megaphone."

~ C.S. Lewis




Bryce Canyon, UT

 

Jim and Colbie

Drip...Drip...Drip

Jim and I are at the stem cell treatment center and this is where will be for the next 2 - 3 hours.  Jim has to have an IV drip as part of the heavy metal testing that has to be done prior to his stem cell procedure.  The test results should be back in about 2 weeks.  If any heavy metals are found, he will be put on a treatment plan to flush them out.  Praying that none are found so he can get the stem cell sooner rather than later!

Anyone who knows me, knows I don't do well with blood or needles.  Fortunately, I'm not the one with a needle in my arm, unfortunately, there is a lady across from me that is getting some sort of blood transfusion or who knows what and I'm feeling a tad weak!  "Dear Lord, please help me stay strong, I can handle this!"

We will be back at the treatment center once the test results are all in to have a final consultation.  Thank you again to those have made this all possible through your prayers, and or, donations.  We are grateful for each and every one of you!  Together in HOPE...

Jim relaxing in the easy chair, getting his IV.

We Survived!

We're back safe and sound from our road trip to Gypsum, Colorado.  The 16 hour drive with 3 kids and a puppy went much better than expected!  Jim's mom and sister were kind enough to open their home to us for the week.  We really enjoyed visiting with them, since we don't get to see them as often as we would like.  Jim was able to "remodel" his mom's chicken coop before the snow came, and the kids had a great time playing in the snow once it arrived. Thankfully, the snow only stuck around for one day.  Living in Colorado, Jim's family is tired of the snow, but it was a special treat for us!  Well, not "us", I mean the kids, I personally am not a big fan of snow. :) 

While there, we visited Jim's naturopath doctors that treated him back in January, for some cleansing and detoxing.  I even got in on the fun and had a foot bath detox. If only they would have polished my toes, I would have been set! After his appointments, we relaxed at the Glenwood Hot Springs.  It's pretty cool swimming in a huge pool of natural warm water, surrounded by snow covered mountains.  What an amazing experience. Although I will say, I have been to the hot springs in Steamboat Springs, CO, and they're even more amazing!

On the way home to California we spent a few days at Lake Las Vegas to thaw out.  What a beautiful place the Westin Lake Las Vegas is.  I would highly recommend it if you're ever in that area and want to stay somewhere that doesn't scream "Vegas". 

We needed a vacation from our vacation by the time we got home, but we're so thankful we were able to make the trip.  Last week, Jim had his weekly appointment with his functional neurologist and an appointment with the Bio dentist.  After the dentist reviewed his x-rays, it turns out he has no mercury fillings, so he his cleared for stem cell treatment.  Great news, so excited for him to start the treatment in 3 weeks! 

Speaking of stem cell, if you haven't checked out Jim's GoFundMe account lately, we are almost at our goal!  So amazing!  I honestly can not believe the amount of love and support Jim has received.  To say you are appreciated would be an understatement.  Thank you so much for joining the fight, how blessed we are to have each and everyone of you in our lives!  Stay tuned!  xoxo

Chicken Coop Remodel!

Snow Day!

Glenwood Hot Springs

Lake Las Vegas

Man's Best Friend - Meet Blu

We have a new addition to our family...the four-legged furry kind!  Last Friday, we headed to the airport to pick up Blu, our 9 week old Blue Queensland Heeler, aka, Australian Cattle Dog. Blu flew in all the way from a breeder in Missouri. Jim has always wanted this breed of dog, and after having to put our 14 year old Boxer down a year ago, we finally convinced him this family needs another dog!  He has quickly become Jim's new best friend.  Jim takes him to the job site with him every day, he sits on Jim's lap while he drives, and is dirty as can be when he gets home.  It's amazing how the love, companionship and loyalty of a little puppy, can really brighten a person's day. 

We wanted to thank Rogers Heelers, for allowing us to make our home, Blu's home, and to Robin and Becky for making it all possible.  We love you guys!

Blu will be heading on a 13 hour road trip with us soon.  Two four year olds and a 2 month old puppy...wish us luck!

"A dog is the only thing on earth that loves you more than he loves himself" ~ Josh Billings



Love at first sight




At the airport





Stem Cell

During our extensive research of ALS (man how I have come to hate those three letters and everything they stand for), we came across a lot of articles about stem cell research and treatment.  About 2 months ago, Jim and I decided to meet with a stem cell doctor.  People travel from all over the US to see this particular doctor, and he happened to be 5 minutes from our house, so what the heck.  We literally left our appointment feeling that we had just met a mad scientist.  Yes, it was very obvious this man was a genius, but he talked so over our heads that we left with more questions than answers.  We decided to keep stem cell on the back burner until we learned more about it.

Since that time, we have done our research on stem cell treatment for ALS, and have gotten several recommendations for this doctor.  After much consideration, Jim has decided that stem cell treatment is something he would like to have done.  As with everything, there are no guarantees, but it sounds like it's certainly worth a shot.  The biggest obstacle of course, is stem cell treatment is very expensive, and of course is not covered by insurance.  Having said that,  you just can't put a price tag on one's life!

Today, our wonderful friend and neighbor Becky, created a Go Fund Me page for Jim.  We will be using this site to raise money for Jim's stem cell treatment.  If you'd like to check it out, Jim's page can be found at Join Jims Fight Against ALS. 

Below are a few links where you can read about the results doctors are seeing with ALS and stem cell.  It's all very exciting, and we, as always,  are very HOPEFUL. 


WebMD

Whitaker Wellness Institute

UCSD

If Your Brain Could Speak...

It's been three weeks since my last post, my how time flies!!  There's never a dull moment around our household, so finding the time for "blogging" can be a bit of a challenge.  God's love has shone brighter than ever these last few weeks.  We are so grateful for the friends and family we have in our lives, words cannot fully express our gratitude. 

And we know that for those who love God all things work together for good, for those who are called according to his purpose. Romans 8:28

This weekend we started attending a new church and love it!  We are so excited to call Calvary Chapel, SJC, our new house of worship.  Yesterday's message was about the power of prayer.  All you prayer warriors out there, please keep Jim in your prayers!  This Wednesday, Michael and Pam Rozell from Potters Field Ministry will be speaking, we are really looking forward to hearing their message. 

Jim's spirit just can't be broken.  His determination and positive attitude truly inspires me.  His symptoms are holding steady, not really increasing or decreasing.  He still has muscle weakness in his left hand and struggles with speaking clearly.  Jim is currently under the care of Dr. Michael Allen, DC, NMD, who he sees once a week.  Dr. Allen is hopeful, as are we, that he can slow the progression of Jim's ALS.  Last week, before his appointment, Jim was struggling to get his shirt buttoned because his left thumb refused to cooperate.  He was buttoning his shirt just fine when he left Dr. Allen's office.  Very exciting! 

Dr. Allen is a Functional Neurologist.  What is a functional neurologist you ask?  Good question!  Rather than try and explain it, because I would do a horrible job, I have taken an excerpt from Dr. Allen's book, What Your Brain Might Say If It Could Speak.

The original concepts of functional neurology were developed by my good friend and teacher, Professor Frederick Carrick, of the Carrick Institute for Graduate Studies in Cape Canaveral, Florida. Prof. Carrick’s original ideas have progressed relative to his clinical experience and deeper understanding of the human nervous system’s function.

Functional neurology is the study of the inter-relationships of an individual’s nervous system within the context of their greater health. It considers that a person’s functional state is generally determined by the quality of their brain’s input and the clarity of its output as well as the supply of nutrients and oxygen that reach that person’s nervous system.

Functional Neurologists consider that the functional state of a person’s nervous system will impact all related systems that are anatomically or embryologically related. They use these relationships to effect a positive neurological change using intrinsically and/or extrinsically generated stimuli that build functional neuroplasticity within the dysfunctioning nervous system, thus improving the neuronal performance of the individual as a whole.

Jim is continuing with the Paleo Diet, a long list of supplements, special exercises, and a new pair of awesome glasses called Eyelights!  These glasses are designed to stimulate the weaker side of the brain, which in Jim's case is the right side. 

Jim sportin' his new shades! 



Well, that's the latest and greatest from our part of the world.  Hope everyone survived their Monday.  Until next time friends...xo

Detox - Colorado Style

On January 4th, 2013, Jim flew to Colorado to spend 10 days with his mom, sister and his sister's family.  During those 10 days, Jim's body went through a series of serious detoxing. Ozone treatments, foot baths, chiropractic adjustments, bio meridian tests, and a few things that I probably shouldn't mention (yikes).  He was also given a laundry list of nutritional supplements and herbs to start taking.  It was a long 10 days, and we missed him a lot, but the HOPE in his voice when he called, made it all worth it.  Knowing that he was actively doing something to battle ALS, rather than waiting for ALS to destroy him, made him feel good about his decision to leave us for 10 days, especially at a very vulnerable time.

One thing I want to make sure I'm clear about is, Naturopath doctors do not claim to have a cure for ALS, at least not the ones we have seen.  The theory behind naturopathy is to rid your body of toxins, in the hope that your body will start fighting disease rather than the toxins in your body.

The most exciting news about Jim's trip to Colorado was Jim renewing his relationship with Jesus Christ. Watching Jim praying and reading his devotional books, warms my heart. 

Jim came home from Colorado feeling better than he has ever felt in his life.  His mind and body were ready to battle the only thing trying to old him back, ALS.

Next step.. Functional Neurology

The Paleo Diet

naturopathy /na·tur·op·a·thy:  A system of therapeutics in which surgery and prescription medications are avoided, and preparations such as vitamins, nutritional supplements, herbs and a healthy diet are used to treat and prevent disease.   Whose purpose is to treat the whole person to stimulate and support the person's own innate healing capacity.

Shortly after Jim's ALS diagnosis, Jim reached out to his sister who lives in Colorado. Karen was one of those moms who didn't believe in vaccinations for her children, all 3 of whom she gave birth to with a mid-wife (yes, one of those).  Jim and I had always thought this was a little crazy, not crazy in a bad way, just something we would never have considered for our own children.  I now know that the only reason we might have thought it crazy was because we were completely uneducated on anything outside of the world of Western Medicine.

Karen is a naturopath warrior, and she is also a woman of strong faith and we are so grateful for both.  Needless to say she was thrilled Jim was reaching out to her, and from that day on she has been on a mission to help Jim heal through prayer and natural healing.  We were off the road to despair and on the road to HOPE. 

Her first instructions for Jim were sent to me by text.  Jim was to stop putting toxins in his body immediately, (wait, no more In-N-Out??).  We were to get a copy of the Paleo Solution book by Robb Wolf and the Paleo Diet Cookbook by Loren Cordain, Ph.D., and follow it to a T.  High nutritional intake only, nothing "dead" or out of a box, nothing out of a can, no gmos (genetically modified foods), hunter gatherer meals only, no carbs, no dairy, no coffee, no salt and definitely no sugar.

"OK", was my only response.  I honestly didn't even know where I would start with this type of meal planning.  How would I even prepare him a meal of such standards?  The poor guy was going to starve to death.  Sure, I can whip up a mean salad, but could a man, used to pasta, potatoes, tacos and burgers live off salads every night?  I think not.  Fortunately, there was a whole world of healthy food choices out there we knew little about.  The healthy "Paleo" meals we have created are some of the best tasting meals we had ever eaten. Jim is 100% committed to the Paleo Diet (me, well I did give up diet coke 3 weeks ago, it's a start), he has lost weight that he could afford to lose, and fills his body with the nutrients it needs.  I am inspired by his unwaivering determination to beat this disease.

Good bye Costco, hello Whole Foods!

(I know what you're thinking, Whole Foods is SO expensive, yes, it is more than a grocery store, but the money we are saving by rarely eating out, makes up for it!).

Next Step... Detox.



Think Outside the Box

The days after Jim's diagnosis with ALS went about as you would expect, and I'll spare you all the depressing details.  Jim and I did our best to keep our house a happy home for our children and enjoy the holidays as we always had.  We spent long evenings Christmas shopping and were grateful for the simple things in life and for eachother.  We spent nights discussing finances and what Jim's wishes were for our children. 

We were back at UCI for our follow-up appointment on December 18th, and Jim was expected to let the doctor know whether or not he was interested in the clinical trial or the drug Rilutek.  After meeting with the specialists, the doctor asked Jim of his decision, to which he replied he wasn't interested in either one.  Now I knew Jim had never been one to take medication, and I knew he wasn't willing to settle for a drug that increased his life expectancy an average of only 2-3 months, but what he was suggesting had me both worried and full of skepticism.  How could he possibly go against the advice of a doctor who is one of the top experts in his field?  How could he deny the only drug proven effective (although mildly) against the progression of ALS?  Jim's plan was to battle his ALS through Naturopathy.  Through WHAT?

So began our journey through holistic medicine.

“Life is 10% what happens to you and 90% how you react to it.”
- Charles R. Swindoll

The Diagnosis

December 10, 2012, our appointment at UCI had finally arrived.  It was a long and anxious 3 months of waiting, during which time I continued researching Jim's symptoms looking for a possible diagnosis. By now, his symptoms were primarily muscle spasms, slurred speech and muscle atrophy.  I'll never forget the day I came across ALS (Lou Gehrig's disease), during an Internet search.  I had heard of Lou Gehrig's disease before, but knew nothing about it.  I remember reading the description of the disease and thinking, oh Lord, please let it not be this.  I then remember reading the list of symptoms for ALS and my stomach dropped.  I frantically went to several different sites that talked about ALS, searching for anything that would suggest this is not what Jim had, praying I would find something that didn't match. I then kept searching for something else, anything else other than ALS, that matched his symptoms.  I finally came across a condition that can be caused by a previous neck injury, and was treatable by physical therapy or surgery.  Thank you Lord, this had to be it.  I mean, Jim did play football for years, he had crashed on his bike a year ago onto his shoulder and neck, it was the "something else" I was looking for.  I printed out the details and showed them to Jim, he was on board, this must be it.  Our plan was to walk into UCI and let them know we had found the answer (thank goodness for Google Search!).  I never mentioned what I had learned about ALS to Jim or anybody else, but deep in side, I was expecting the worse. 

The first half of Jim's appointment lasted about an hour.  The first 40 minutes he was examined by a resident, and the last 20 minutes by the doctor.  He did a few muscle strength tests, looked at his muscle spasms, his previous MRI, and then spoke the words I was praying I would never hear, "I have a strong suspicion you have ALS". I'm not sure what made him turn to me, probably the sound of my gasp, but he then says to me, "I'm sure you've done your research on this disease?", to which I reply, "yes, I have".  At that moment I knew that I knew more about Jim's devastating diagnosis than he did, and felt guilty for not having shared what I had learned about ALS with him. My break down probably said it all.  We were then told to go grab some lunch and come back in about an hour for more tests.  Not to confirm the diagnosis (there is no test that confirms ALS), but to rule out any other possibilities.

The last thing I felt like doing was eat, but we did sit down for lunch, and I tried my best to keep my composure (I failed).  We talked about anything other than ALS. I knew it wouldn't be long before Jim did some research of his own.  I just didn't have the strength to tell him the devastating details. 

The additional tests ruled out any other possibilities other than ALS, and so that is what we were left with, along with a few instructions for Jim.  1. Eat a high fat diet - it's important not to lose weight (you'll need all that storage of fat for when you can no longer swallow food)  2. Start taking the only prescribed medication for ALS, Rilutek - it can slow the progression and extend your life expectancy an average of 2-3 months.  3. If interested, sign up for the clinical trial we're offering.   4. Come back next week to meet our staff of specialists (all of which you will eventually need as your body continues to deteriorate) - the Respiratory Therapist , Speech Therapist, Physical Therapists and the Residents. 5. Sign up for Social Security Benefits right away, it can take up to 5 months to receive payment. 6. It's very easy to fall into a depression when given this type of diagnosis, but stay positive, your family is counting on you.

And with that we left, heading home to break the news to our family and friends (but not before driving through In-n-Out burger for Jim's high fat meal!)

The Road to a Diagnosis

It all started about a year ago.  Suddenly Jim was experiencing a constant urge or need to swallow. While most of us don't even think about swallowing, Jim did.  He would continually drink water or eat just so he could satisfy his urge.  He had recently changed his eating habits, maybe this was his body reacting to the new healthy diet.  A few months later came the stiffness in his neck, shoulder and jaw, and eventually slurred speech and muscle spasms in his upper body, primarily in his arms and back. His upper body literally looked like his skin was crawling, constantly.  It was at this point, we knew something wasn't right, but had no idea how wrong it really was.

Our first doctor visit was to the general practitioner on June 25, 2012.  Jim had a blood test to test for everything under the sun, a MRI and endoscopy to test for throat cancer and told to take an ibuprofen daily for 30 days to decrease any swelling in his shoulder.  The pain was attributed to years of playing football, maybe a torn rotator cuff or working construction.  The slurred speech, and muscle spasms, well no one knew.  Needless to say, the tests all came back negative, and Jim never took daily dosages of ibuprofen.  He knew that ibuprofen wasn't the answer, but what was, we had no no idea.

It was at this point I hit the internet and hard.  I researched and googled every symptom Jim was having on a daily basis, and I think I diagnosed him with about 15 different possible conditions (surprisingly, ALS not being one of them).  Maybe it was a pinched nerve in his neck, MS, or other things I can't pronounce or remember.  One common factor though, was a "neurological disorder".   This led us to make an appt. with the neurologist.

September 4, 2012 was our first visit at Dr. Preston's office.  More blood was drawn, an EMG test and a MRI were all done over the course of 3 visits.  Of course, all came back negative.  Dr. Preston was able to rule out MS, but was not able to confirm a diagnosis.  He referred us to the Neuromuscular Center at UC Irvine Medical Center and said we need to get an appointment as soon as possible (that's never good).  In my mind, Dr. Preston had a suspicion it was ALS, but didn't want to speculate or alarm us if it wasn't.   It took us 3 months to get an appointment at UCI.

Welcome!

Thank you for visiting our blog!  It is our goal, that by creating this blog, we can share all we have learned through our journey of battling Jim's ALS and maybe touch a life or two.  We have learned so much in the last few months that it would be selfish not to share.  Jim and I are not doctors (not even close), and we are not advocating for or against any type of treatment.  We are merely sharing what we have learned, and what is working best for us.  

To our family and friends, we are forever grateful for all your love and support.  We hope this blog does a better job at keeping you up to date on Jim's progress than we did, and relieves my mom from all her messenger duties.  To those we have never met but you, or someone you know may be affected by ALS, please know that we feel your pain.  If you take nothing else away from this blog other than a sense of hope, our goal was acheived. 

I should also mention we honestly know very little about "blogging" and are not expert journalists.  I apologize in advance for the grammatical errors, run-on sentences, over use of commas, etc. (thank heavens for spell check).  Here goes nothing!

Wishing you all a wonderful day.

Jim and Dionne