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.