De-stress the Holiday Gifting Process

It seems like just a couple days ago we were getting ready to start our journey across Colorado… now, nearly 3 months later, I’m belting out “Santa Baby” with the radio, the smell of wood smoke fills the air and my house looks like the North Pole blew up in it.  Christmas is just two weeks away… CRAZY!!!  It bothers me how the stress of shopping and getting the “right” gift for the people we love can take the love, joy and spirit away from the holiday season.

 

As a fitness and wellness coach, my job is to lead people down a path of least resistance to a healthy lifestyle.  In my opinion, one of the first places we start to get “healthy” is to de-stress our lives.  So, in keeping with my profession, I am going to list some of my favorite gift items in the fitness and wellness arenas.  Some of the companies, I am sponsored by… but I am only sponsored by companies I truly believe in…so please don’t take this as a sales pitch.  Take it as a way to de-stress the holiday gifting process and get the active people in your life lined out or gift someone who is starting out on their fitness journey or maybe just treat yourself to something special.

 

Apparel

*Note: These are all women’s items, but the men’s clothing line has similar items, I just can’t tell you what they’re like as I’ve never worn them.

  • Sports Bra : Soft and comfy.  Not sure for women that are more busty that I am, but for smaller chested girls, this is great.
  • Running Shorts : Number one for runners, these don’t ride up on you! 🙂  And they are cute!
  • CrossFit Shorts : Light weight, don’t ride up, breathable, dry quickly.
  • Booty Shorts : For that woman in your life that likes to show off her butt and legs.
  • Hoody : Comfy, cozy, warm for layering.  I love the high neck and the burnout style.
  • Jacket : Lightweight, breathable, dries quickly.
  • Tights : Durable, comfy, non-see through!

 

Shoes

*Note:  These too are all women’s shoes, but the men’s line has the same shoes.

  • Distance Running Shoe : The Reebok ONE Guide 3.0 is what carried me through 500miles across the mountains.  My joints felt great, my toes were beat up, but nothing compared to what most ultra distance runners had expected.
  • Trail Running Shoe :  Durable, grippy, light weight… awesomeness!
  • Lifting Shoe : So comfy and more importantly for the lifter you love, they’re super stable.
  • Gym Shoe 1 and Gym Shoe 2 :  Love these shoes… they really are the best overall gym shoe you could ever get.  They come in every color for style, the are super comfortable, they are incredibly durable and they are functional.

 

Accessories

These are just a few things that I find critical to my training.

  • Fit Bit Surge : The #1 best selling GPS watch in the US.  It’s great for tracking heart rate, steps taken, exercise stats, mileage and elevation.  I used this watch for the full 500miles of Move Mountains and it was a life saver.
  • Headbands : Doesn’t slip, controls hair, glittery fun! Good for stocking stuffer.
  • Water Bottle : Hot or cold, your liquid will stay that way for a long time.  It’s the perfect size to drink 3-4 of and have your daily intake of water.  I love this water bottle!

 

Equipment

*Besides your typical gym equipment, here are some other equipment item must-haves to keep your body ready and able to continue to train day after day.

  • Crossover Symmetry : This is a MUST have in your fitness repertoire… the shoulder is a complex joint and in our society of keyboards, iPhones, and everything done in front of us… this will improve posture, shoulder stability/strength/function.
  • Lacrosse Balls : A must have tool for keeping your body a mobile, working unit.  A great stocking stuffer (buy 2 or 3).
  • MobilityWOD.com : Use this subscription as a tool to teach yourself/your loved ones how to utilize the lacrosse balls (and other tools) to keep your body functioning as it should.  Improve mobility, improve athletic ability, decrease injury occurrences.
  • MarcPro : Use code KSTAR or WARRIOR when checking out.  This is a device that will help with muscle recovery and improve muscle performance… two things every athlete strives for and needs.

 

In the Kitchen

They say that 90% of our results are made in the kitchen… meaning that you can’t out work poor nutrition.  Here are my go-to kitchen items that keep my body nourished.

  • Immersion Blender : Seriously one of my favorite kitchen appliances I own. Cook whatever ingredients you want in a pot to pure into a soup, put this in the pot and start.  So much easier than transferring hot stuff to and from a blender.
  • All Clad Slow Cooker : I got this as a gift a few years ago and is on of my most used kitchen item.  An easy way to eat a good healthy meal when you don’t have the time to cook.  Plus I make my bone stock in this every week.
  • Woodchen Cutting Boards :  This really is my most used item in the kitchen.   It sits on my counter top and is a  I have the largest size you can get (chop block), but they are all amazing.  Made locally in Chico, CA (where I live), they are beautiful and it serves as functional decoration always sitting on my counter top.
  • NutriBullet Blender : This is perfect for making your bulletproof coffee or tea and/or your green drink smoothly in the morning.
  • Everyday Paleo Cookbooks : I have everyone of these cookbooks.  Sarah Fragoso, author and paleo expert, is a dear friend but also one of the best in the healthy cooking/lifestyle industry.  I frequent these recipes in the kitchen.

 

Supplements

*I sought out PurePharma because they have the cleanest, purest products around.  Much of the supplementation we have access to does not hold true to these standards.

Use athlete code JLABAW53 for 10% discount!

  • Fish Oil : Reduce inflammation and muscle soreness.  Maintain healthy functioning brain and heart. Improve oxygen delivery.
  • Vitamin D : Improve immune function, maintain strong bones, reduce risk of osteoporosis
  • Magnesium : Reduce muscle fatigue, improve work capacity, increased sleep and quality of sleep.
  • All 3 of the above in 1 : A months supply of Fish Oil, Vitamin D and Magnesium in one simple packet. *best seller
  • SkratchLabs Hydration : A tasty all-natural exercise rehydration mix.

 

 

Now with all of that out there, I want to also suggest the gift of giving.  Talk to your family and friends and think about contributing to a cause or volunteering at a soup kitchen.  Maybe donate a bit of money in your loved one’s name to a charity they are passionate about and give them a card noting the donation.

 

I hope this helps you to find something special for that athlete in your life and takes some stress out of shopping.  And please remember, the holiday season is supposed to be about love and kindness… don’t let stress be a reason that’s lost.

422485

Advertisements

Move Mountains Totals

Much of my life revolves around measurability.  I’m a strength and conditioning coach, so I am constantly measuring improvements in my clients fitness and body composition.  I myself am an athlete, so again I am constantly measuring my progress.  I am a goal oriented person, so a lot of my life is based upon “measuring” if the things I am doing to reach my goals are actually working.

 

Move Mountains was a different approach to success.  There was no exact way to measure how many people we were influencing, motivating and helping find strength within themselves.  There was no way to measure how much awareness we were raising.  It was a great change for me and a lesson on how we actually do measure success.  It’s not about the numbers, it’s not about the results…it’s about the journey and the lives you touch.  It’s about helping others.  It’s about discovering things out about yourself you may not have ever found otherwise.  It’s about making a difference.  I saw/felt this difference with each message I received from someone that was willing to share their story about epilepsy or someone that was facing their fears or someone that was motivated to become more active.  There’s no way to measure that impact, and there is no reason to.  It worked!  Move Mountains had a ripple effect greater than I ever could have imagined and it was by far the most impact I have made in my life.  All the other “successes” in my life that were measurable hold no less significance than they did before, however my definition of success is broadened and I am forever grateful to each person that helped me with that.

IMG_3421

On that note… there were some things that were definitely measurable about Move Mountains… you can call them successes, I am going to call them stats.  Below are statistical totals from Move Mountains that made it measurably what it was.  Thank you to each and every person that made it possible.

cropped-cropped-cropped-3krgxqx8fdwjagrubckwdgimpqbpasp7cagsrxgrff8l8pvachtlg3owztuts-ffiqoierfaz3lxljwcwepdummmn6gezsyc4rlfoibnevjq8y9ckekd0bdneadytotyaliapvwhmfnwwxdrx-8gcagpzyl9tfiglkede9t2sfww.png

Total Miles:  489 miles

Total Steps:  880,200 steps

Total Calories Burned (approx):  62,100 calories

Total Elevation Gain:  35,000 ft

Total Elevation Drop:  34,000ft

Highest Elevation Point:  12,670 ft (Top of Cinnamon Pass)

Lowest Elevation Point: 5,348 ft (Rifle, CO)

Total Amount of Mountain Passes:  8 passes

Total Weight Lost:  13 lbs

Total Toe Nails Lost:  3.5

Total Inches Lost in Thighs:  4.5 inches in each thigh

Total Amount Donated/Raised for The Epilepsy Foundation:  $50,000!!!

Total Amount of Love, Honor, Pride, Support:  ALL OF IT!!!

Epilepsy Through My Mom’s Eyes

I am so grateful for the story that is about to be shared below.  My sweet mom, the woman who has forever been so strong for me and never let me think for a minute that I wasn’t capable of doing whatever it was I wanted to do in this world, is sharing her perspective on my life with epilepsy.  Not until a couple of months ago, when I decided to run 500 miles across CO for epilepsy awareness, did I know that my mom (and dad) lived much of my childhood in fear.  Fear of the uncertainty, the uncontrollable and the unimaginable…fear of a sick child that they could not help.  As I hear my mom recount memories and hear stories of so many other mom’s who have children living with epilepsy, my heart is so warm with the strength, the courage and the pure selflessness these women embody.  Although they may feel helpless, I can guarantee you it is quite the opposite.  Without my mom (and dad), I wouldn’t be where I am today.  They have given me the courage to feel, to accept, to fight, to conquer, to heal and now to share.

I love you mom and dad!

IMG_3582

“Mommy, my arm is tingling again.”

Those are the words I grew to dread, knowing what was to follow: my daughter was again on the verge of having a seizure. I would watch helplessly as she would tightly squeeze above her bicep in an attempt to stop the sensation that was moving down her right arm. As the seizure evolved, she would tuck her head then begin giggling uncontrollably (sweet-sounding but inappropriate – nothing was funny right then) for 1 – 5 minutes.  Always she would lose the use of her right arm and hand. Often she would lose control of her bladder. Usually she would disconnect from me for several minutes, emerging with blank and exhausted eyes. Then she would cry, and I would hide my face so she wouldn’t see my tears.

IMG_3712When Jenny asked me recently if I would blog on being the mother of a child with epilepsy, I agreed. But as I sit with my hands on the keyboard and allow my thoughts return to those days, raw emotions I’ve not felt in years begin to resurface. I don’t want to go there, to the memories of fear, confusion, frustration, and sadness.  But if she can run 500 miles in only 31 days over some of Colorado’s highest peaks, then I can do this.

First, let me put Jen’s seizure disorder into context. When she was 7, Jenny began having occasional incidents of temporarily losing her ability to clutch with her right hand. She’d drop her toy, or fall from a jungle gym, but often she’d laugh when this happened so it wasn’t overly alarming. However, over time the incidents became more frequent, and when she lost control of her bladder it was clear something bigger was going on. Many months, tests, exams, and doctors later, at age 8 Jenny was finally diagnosed as having simple partial gelastic seizures. While gelastic seizures most often do not have known cause, a suspicious MRI and the fact that Jen had had bacterial meningitis as a baby led physicians to suspect the cause was a scar in the temporal area of her brain.

There really are no words to describe the helplessness that initially overcame me once Jenny’s diagnosis was confirmed. As a nurse and a mom I was adept, or so I thought, at taking on personal healthcare challenges. For example, Jen’s older brother, Luke, was born with bilateral club feet. While his road to recovery was not without trials (envision 6 months of full leg casts removed and replaced every few days as he grew followed by a year of Dobbs braces), I could see the misaligned curvature of his feet and ankles, I could understand orthopedist’s solid plan, and I watched over time and saw improvement as his little ankle joints begin to straighten. With Jen, however, because gelastic seizures are so rare, the diagnosis itself was difficult to come by, the cause was elusive, the plan for treatment was trial and error, and I could not see whether or not her brain was healing, or whether we were making progress. Her condition was invisible…….until, again and again, another seizure would erupt.

Determining her best course of treatment went on for many years. Then we’d find a medication that worked for a while only for the seizures to start up again several months later. Days were spent traveling to see pediatricians and neurologists who were always great but so far away from our small town in western Colorado. I spent countless hours in medical libraries researching her condition and any treatment options I could find. Remember, in 1990 Al Gore hadn’t yet invented the internet so investigation involved pouring through journals and textbooks for this condition about which so little was (and still is) known. She was trialed on various medications but often either the meds were ineffective and the seizures broke through, or the side effects were unbearable (think visual disturbances, relentless tremors, nausea and vomiting, stomach pain, exhaustion, significant weight gain). More than once she suffered the debilitating effects of becoming toxic from too much of one medication or another, and I’d hold her little head as she vomited. Knowing I’d administered the medication that was causing her to feel so badly was a dreadful weight to bear as a mom, and worrying what these caustic drugs were doing to her kidneys and liver was a continuous stressor.

When no meds were working quite right, at age 14 she went through extensive evaluations for possible surgical interventions. Jenny has always needed a daily dose of physical activity, so it made my heart ache to sit with her as she was confined to a hospital room while tethered by wires to an EEG machine and with mirrors capturing her every move for two weeks at a time while nurses and technicians tried to induce seizures. Eventually their goal was achieved, and the tonic clonic (grand mal) seizures they were hoping for resulted. Can you imagine how that makes a mom feel? Guilty, angry, frustrated to name a few. And after all that brain surgery was ruled out as an option.  IMG_3715

Yes, I grieved Jen’s diagnosis, and still do. Mothers are supposed to protect their children, keep them safe and happy and on the path to growing up. The guilt of not being able to do that was difficult to bear. In my humanness, I mourned the loss of (what seemed like completely) worry-free days. In the darkest hours, when her seizures were breaking through despite medications, or the side effects left her too weak to get up, or her embarrassment around incontinence or unexpected falls made her afraid to go to school, I cried for what she was going through and what I couldn’t shield her from. Yes, I let my mind go to the worst possibilities, the what-ifs, and the oh-my-Gods. Will she ever be able to have children? Will she be able to live a normal life, go to school, drive? All the while I kept those fears from her. Those were not a kids’ to bear. I remember silently begging any spirit that was listening to let me endure the side effect of all the meds for her.

FullSizeRenderThrough it all, Jen was the happiest, smiling-est child you’d ever hope to come across, and unless the meds were interfering, she was a curious, loving, and enthusiastic kid. That’s what I hung on to, her determination to enjoy life. Her demeanor and zest reinforced our intention to treat Jenny not as “normal” child, but as an extraordinary child, which is exactly what she was and still is. Her physicality was evident even as a little one as she hiked with us into high mountain lakes, refusing to be carried. Her compassion for others is second to none.  She has always enthralled and amazed me. Her abilities, physically, intellectually, and emotionally, were evident and there was just no option to suppress her enthusiasm. Therefore, she never knew how frightened her dad and I were, wondering what her future might hold.

As time went on, while we were always on guard for the next seizure, just living in and enjoying the moment became our new norm. We rarely told her no when she wanted to try new things, and she constantly amazed us with her fearlessness. At the same time, she was adamant that we tell no one about her seizure disorder.   Only the school nurse knew – not her friends, not the teachers. That was difficult, but I respected her desire, as scary as that was but there was much to do and little time to dwell on the unknowns and what-ifs.

Eventually, a medication was found that mostly kept the seizures at bay though the sensation in her arm never completely disappears. Despite my secret worries as she became more and more independent, she was very responsible about taking her medication, and kept extras in her glove box. Yes, she learned to drive and got a drivers’ license. She behaved like a normal teenager. She went to slumber parties, she dated, she participated in and excelled in all sports, becoming a 4-sport letterman and selected to All State teams. She graduated, and went to college on athletic and academic scholarships. She became a Cross Fit champion and is a successful businesswoman. IMG_3232

In 2012 when it was disclosed through Cross Fit platforms that she had epilepsy, despite the fact she’d hidden it most of her life, in her words it was almost a relief to have the world know. Then other individuals with epilepsy began coming forward, thanking her for her willingness to speak openly about her epilepsy. One day she said, “Mom, I think I was given epilepsy for a reason.” She understood at that point that she had the opportunity to make a difference, to help those with epilepsy to been seen as individuals and not their afflictions.   She knew at that point that she had the chance to help increase awareness of epilepsy and therefore funding. Most importantly, she became beloved by many for her integrity and grit, and has many friends and admirers.IMG_3597

Jenny is the most extraordinary woman I’ve ever met. My fear, heartache, guilt and sadness that all begin nearly 25 years ago are all but forgotten as I gaze upon my fearless daughter. She’s one of the lucky ones who has found an effective treatment for her seizure disorder, and she is well aware of that.   We know that could change any day, but for now her focus is on helping inspire those with epilepsy and their parents to fight the good fight, and to help bring awareness to the public of the trials surrounding this condition. The only emotions I feel now are pride, love and respect for my remarkable daughter.  ~Cathy Desautels

IMG_3498

Keep Moving Forward…Epilepsy as a Mom

There are no words to explain how much this mom and her daughter, Katie, helped me Move Mountains as I ran across the Colorado Rockies.  They were in my mind, with me in spirit and literally pushing me forward at times… the amazing thing is that I have never met either of them in person.  They are two people that will literally leave an imprint wherever they go in this world and with whomever they come in contact with.  Lenora shares her story of being a mom to a child with epilepsy below.
 “There was a 60’s TV show called ‘Dr. Kildare’ starring Richard Chamberlain, that I watched as a young girl. One episode featured a beautiful teenager who had this mysterious illness called “epilepsy”. As a physician, Dr. Kildare tried to provide the best medical help that was available but sadly at the end of the episode the girl died. At the time, I couldn’t understand why that had happened to her and why it affected me so much…she looked so vibrant & healthy. 
  Years later, I saw my own perfectly healthy and beautiful daughter have a seizure. I had just put our children to bed and my husband also went to sleep. I was sitting on the couch studying one of my nursing textbooks. Awhile later, I heard a noise, it sounded as if an arm or leg had gently knocked against the bedroom wall during restless sleep. Minutes later, my little 8 yr old girl staggered into the living room mumbling with frothy saliva coming out of her mouth. I remember looking at her in disbelief thinking.. did she just have a seizure? As I placed her on the couch, she had a second seizure. That triggered a 911 call to EMS and a trip to the hospital. Tests and scans were negative except for some ‘slowing’ on her EEG. We were desperate to understand what had caused the seizures but there were no conclusive answers at that point. It was difficult for us to except what was happening as parents and for me as a nurse not being able to “fix” this. I had to bite my lip to keep my frustration in check with the lack of definitive answers I received from the medical community. We were given hope during the first year that she might outgrow the seizures. The best piece of medical advice we received from Katie’s doctor was, “Don’t to treat her like an invalid.” We took this to heart and made sure Katie lived a full life, pursuing her talents and dreams. Although we did our best to mask our worries and fears, I think she knew and tried to find ways to reassure us.
   Just before her ninth birthday, Katie was home from school one day with a cold. She loved to curl up on the living room couch in front of the big picture window with her afghan and a book. From the kitchen, I heard her familiar ‘clicking noise’ when she had a seizure. I ran out in time to gently help her down to the carpet. Afterwards, I held her head in my lap and gently stroked her long blonde hair. Tears welled up in my eyes as I realized she was never going to outgrow this. Katie looked up at me, weakly touched my wet cheek and softly said, “It’s okay Mommy, it’s just a small part of my life.” I will always treasure that memory of my brave girl.
Unknown
   That was my turning point with Epilepsy as a Mom. It was then that I realized, if she could accept Epilepsy with dignity and grace, then she needed me to be strong as well. In my resolve, our family always made sure that she recovered to a reassuring smile and soothing words. It was my best piece of advice to others second only to the wise words Katie’s doctor shared.” ~Lenora

A Week Dedicated to the REAL Heroes

This week is Thanksgiving week.  A week that we are constantly reminded to do what we should do everyday of our lives…be thankful for everything we have.  I figure with it also coincentally being the last week of Epilepsy Awareness Month, it’s only appropriate to give the people who I know deserve the most “thanks” in the epilepsy world, but get it so little, to be recognized and have the chance to share their stories.  These people are the parents of children living with epilepsy.  It wasn’t until this year that I found out how scared my parents have been most of my life, but they never let me know.  They were scared that I would get hurt having a seizure.  They were scared that kids would hurt my feelings at school.  They were scared at what my seizures could develop into.  The possibilities of disaster that were unknown to me, were front and center in their heads, but they were never brought to my attention as they didn’t want me to think that I was different or that I couldn’t achieve whatever I wanted.  They are my heroes!

This week I will be sharing a few guest posts from parents who are willing to tell their and their child’s stories to us.  The strength and courage of these individuals blows my mind.  Thank you to you all… thank you to all of the mom’s and dad’s out there that let their children believe that they can be a doctor, an astronaut, or superman.  Thank you to the mom’s and dad’s that let their kids believe that they are strong, they are resilient and they are here for a reason.  Thank you to all the mom’s and dad’s out there that are their children’s hero… even if they may never tell you… you are!

 

“Sam is My Hero”

“We were so excited to meet Jenny LaBaw when we heard about her and her run across Colorado to raise awareness for Epilepsy. Her story is a success story and one of perseverance and determination. She is a role model for so many, but especially for our son, Sam.

Sam    IMG_1214

Sam started to have seizures when he was 19 months old. They were short disturbances during the day and in his sleep. We were referred to a pediatric neurologist at a hospital in Denver, a three hour drive from our home. We sat in the neurologist’s office and learned all about seizures and epilepsy in a short period of time.  number 1 Scared and anxious, we agreed to all the recommended testing and hoped we’d have a plan to stop the seizures. After an MRI and multi-day EEG there was no evidence of an abnormality so Sam was prescribed medication and we were told he would most likely outgrow the seizures. Sam was still our sweet, happy, active boy and the seizures rarely slowed him down.  

Unfortunately, the seizures did not stop; in fact they got longer and more frequent. After three drugs failed to stop the seizures, Sam had another EEG with an epileptologist in Denver and Sam was diagnosed with right frontal lobe epilepsy and epileptic spasms. number 4We were told he may have significant developmental delays and that the epileptic spasms would be very difficult to treat. We would have to make decisions about adding medication(s) and balancing the side effects with his quality of life. It was also recommended that we start speech and OT therapies to help his development. We were then referred to Children’s Hospital in Denver for his future treatment. This was a very challenging time for us. The uncontrolled seizures were taking a toll on Sam. I was also working full time and being away from Sam was very tough. We were very fortunate that Sam was in a quality day care program and they cared for him like he was their own. sam and charlie hospital

It took another MRI, PET scan, two more medications, and a few multi-day EEG stays at Children’s to try to get Sam’s seizures under control. With the right medication, we eventually had a 2 year break from the seizures under the care of an amazing pediatric neurologist, Dr. Laoprasert. Dr. L was the first doctor that noticed a small malformation in Sam’s brain in his right frontal lobe. Now his diagnosis became more specific, cortical dysplasia in the right frontal lobe. Dr. L was also the first doctor that told us, “Sam is doing well and he will continue to do well.” He helped us realize that epilepsy is one part of Sam, not all of Sam. But, he also warned us that with cortical dysplasia the seizures could come back. Even though we still dealt with some side effects/issues from Sam’s medication, Sam was doing really well. He was like any other kid. He led an active life, even learning to downhill ski and taking swim lessons (Two things I didn’t think he could ever do when the seizures were at their worst.)

IMG_5579

The seizures slowly started to come back less than a year ago. There were a few during the day when he wasn’t feeling well, but mainly they were in his sleep. We increased his medication hoping his recent growth spurt was to blame. When we reached the maximum dose he could take, we added a second medication. This second medication seems to be working and Sam’s night time seizures are decreasing. We are hoping we can control Sam’s seizures with medication. The next option is brain surgery to try to remove the part of his brain causing the seizures.
IMG_0445This Fall, Sam started kindergarten. He has an IEP (Individual Education Plan) in school to help with his learning challenges. He has trouble with his attention, short term memory, speech, and handwriting. At this point he loves school and we hope to keep him successful and happy in school. 

After battling epilepsy for 4 years now, we know what a roller-coaster this can be. There are some really great times and there are some really heart-breaking moments. It is very tough to watch your child suffer, or to watch them deal with challenges when all you want is for them to enjoy being a kid. Fighting insurance and drug companies, balancing doctor’s appointment and therapies while working full time can spread you thin. But, we want Sam to have every opportunity, to experience all that life has to offer, to not hold him back, and to encourage him to always do his best. We will advocate for him and keep him safe. We will educate and empower him to overcome this challenge.

Sam is my hero. Through him I have discovered more patience and strength than I ever knew existed. There are so many things we can’t control in life, but we have control in how we handle tough situations. We choose hope. We choose to raise Sam with the strength that will Move Mountains.”  ~Megan

family IMG_0657

 

Seizures: Every Storm is Different

I am a firm believer in that the Universe throws at us only what we can handle.  Sometimes, in the moment, it may not seem like it, but things always work out.  I believe that the way our adversities affect us greatly depend on the attitude we approach them with.   We can dwell on the fact that we have been given a rough go for a moment, or we can learn from it, overcome it and be a bigger and better person for it.  We are always exactly where we are supposed to be, doing the things we are supposed to be doing and experiencing the things we are supposed to be experiencing.  Often we may not immediately know the reason things are the way they are (or ever at all), but we must trust that these things are happening either to teach us lessons, to help us grow our character, or to help others do the same.

With that said, people that are dealt the hand of epilepsy are some of the most courageous people I have ever met.  There are these thunderclouds constantly living in our brain.  For some, they may explode into storms every second.  For some, every day or so.  For some, every year.  For some, every 10 years.  And for some, they are dormant.  However, in all of these cases (even those with “control”) we never actually know if or when the next storm will hit.  However, when they do hit, each one of these people continue to fight and overcome another storm to live the next moment as though it is their best.  Below are some amazingly touching stories of incredibly strong, courageous people living with epilepsy every day of their life.  Please take a moment to read and learn from these strong souls.  I sure have!

 “I was diagnosis at 3 with epilepsy. I went from neurologist to neurologist. Medications didn’t work, some of them even made me a zombie, or do crazy things like run outside completely naked. At 5 years old I had the brain of a 2 year old. I then went to John Hopkins Hospital and the neurologist John Freeman put me on the ketogenic diet. I was on that for 2 years and it worked great. I went about 5 to 7ish years without seizures until the end of 5th grade and started having them again. In 6th grade we tried the atkins diet which didn’t help that much, plus by them I had been able to eat regular food and it was hard to follow. I even snuck chocolate chips sometimes. I was put on trileptal, and other medications as well. I still had seizures but it wasn’t too bad to keep me from living a normal life. I went to school and did things with friends. I have never been allowed to drive. A year ago I got the vagal nerve simulator and I still take medications as well. Most of the time when I have my seizures I stare off into space and can’t always communicate. I sometimes do jerk my arm or head. It kind of depends on the level of how extreme my seizure is whether I am able to communicate and how tired I am afterwards and how moody I am afterwards.Not getting enough sleep has always been a major trigger for me. I have had about maybe 6 grandmal seizures in my lifetime, but that is not what I am diagnosised with. I am 21 now, most of the time having seizures doesn’t bother me. I did get a part time job though about a month ago and I’m finding that maybe a job, school, and all the other little things may be a little to much for my body to handle seizure wise.” ~Reganphoto-2 copy

   “My name is Kelsey and I have been living with epilepsy for 10 years. I was diagnosed after my first grand mal seizure at the tender age of 12. The teenage years are hard enough, but having been diagnosed with such a disease was pretty hard, to be honest.  

   I was raised by a powerlifting father and compassionate mother, so I was truly blessed with such a support group to get me through the ups and downs the disease brought. Unfortunately, it wasn’t until my freshman year of high school that we found a medication that really controlled my seizures. I feel truly blessed that I had an amazing neurologist and parents who lifted me up during such trying times. I grew up wanting to be a Navy SEAL and of course that couldn’t happen once I was diagnosed, so I felt pretty lost for several years on what my “purpose” was.
 

   Luckily, my intense love of sports and competition kept me working on another goal: college softball. I ended up accepting a scholarship to play college softball just 5 years later. 

   Talking to people about my disease was impossible. When I did I got choked up almost every single time because I felt like epilepsy was such a burden and truly believed it ruined my life. This way of thinking pretty much controlled my life until about a year ago when I decided we all have a choice in life: either work with what you got or just sit and dwell on your weaknesses. The truth is, we all have weaknesses and problems. Some are bigger than others, but that’s when we choose to be strong. The importance of physical strength is something that was instilled in me at a very young age, but it was hard to wrap my mind around mental strength.

   Sure, there are days where I feel like this disease has gotten the best of me. I’m currently in my last year of college and I can say that I could have probably done a lot more or a lot better if I hadn’t been given this disease. But that’s when I look up and tell myself that I am pretty damned blessed to have all that I have in my life right now. I have the amazing ability to be able to go to class everyday and learn about things that I love. There are so many kids out there who cannot get out of bed because of epilepsy. There are so many wonderful kids who will never get to play or run whenever they want because of epilepsy. I just want those kids to know they are what keep me going and motivated. I also want the world to know about this disease and the effects it has on so many amazing people in this world.”  ~Kelsey

IMG_2075

 

“My experience with epilepsy begins long before I ever actually had a seizure. I remember sitting in our living room as a child terrified out of my mind as my Dad sat in his chair having a seizure on a Sunday morning as he was polishing all our shoes before we went to church. My Mom was rock solid, calling the paramedics, comforting all five of us children, taking care of my Dad, and maintaining her composure throughout. I had heard about our family’s history, but it never dawned on me that it might affect me so personally.

Then one day when I was eighteen I fell asleep in my high school English class and when I woke up I was on a gurney in an emergency room and I had lost the last eight hours of my life. I remember thinking, how did I get here? What happened? Why is my head hurting so badly? Why am I hurting so badly? That’s how it started for me. From there I went through all the beginning stages of diagnosis, testing, and drug trials. Some medicines worked to control some seizures but not all. Some medicines didn’t control any seizures and made me feel horrible, and some medicines gave me such bad reactions that I ended up in the emergency room from allergic reactions. The first few years were the worst until we found a medicine that controlled ‘most’ seizures and had the least side effects, which by no means meant there were few. I felt doped most of the time, off balance often, and slurred speech and bleeding gums were the best the doctors could offer me. Ok, I’ll take it. The alternative, I had learned, was much worse.

The type of epilepsy I have, gives me little warning before I feel a wave of darkness wash over me, a knocking in my ears, and then its lights out. When I come to, I’m usually surrounded by paramedics or strangers who are trying to help, but for whatever reason I am scared to death. I lose time, every time, and that in itself is a scary feeling.

Eventually, it seemed that I reached a time in life when my epilepsy leveled out, I was only having a few seizures a year, which is pretty well controlled. So we decided to start our family. Six years later, by the grace of God, we had three beautiful, healthy children. They are 17, 15 and 12 now and so far none have shown any signs of having epilepsy. We are so thankful. I do however have a nephew, nearly 13, who has recently been diagnosed with epilepsy. Kyle’s (aka Kylie Wylie) seizures manifest as stomach cramps that last sometimes as long as 24 hours until he finally vomits and then finds relief. At first he was misdiagnosed with a gastrointestinal disorder. When all attempts at treatment failed he ended up at a children’s hospital where he was finally properly diagnosed with epilepsy.

In the last few years I have experienced a resurgence in the activity level of my epilepsy. It responds very little to medication and the seizures have very pronounced ‘triggers’; like fatigue, and heat, loud noises and flashes of light. I have to be watchful and careful these days of my surroundings. I can’t take a bath or exercise alone. In fact I can’t be alone much at all. Last summer I had a Vagus Nerve Stimulator implanted, which is supposed to help control the intensity and frequency at which my seizures happen. So far, so good.

I am a fighter. I am a mother, a wife, a Christian, a daughter, a sister, a coach, and a friend. I am an epileptic. Many people are. I am surrounded by a loving supportive community of people who know me and fight for me and with me. Epilepsy is something I have learned to live with but it doesn’t define who I am or what I can do. ‘I can do all things through Christ who strengthens me,’ Philippians 4:13.

It is important to bring awareness to epilepsy so that every person out there who struggles like I do has an advocate, a doctor, a choice, a support group, and someone who knows how to help them when the moment comes that they can’t help themselves. Love to all.” ~Leah

image3image1image2

 

“I don’t remember a time in my life where Epilepsy didn’t affect me – whether it was to do with my school work, my comprehension or the day my brain regained that inner camera focus again, this medical condition/disease has affected me in some way.

There’s been a huge list of medications I’ve been on – quite a few I don’t remember taking; but my Mum does – and it was most of them that we tried out and they didn’t work. Either they didn’t stop the seizures or the side-effects were so bad my family noticed I that I just wasn’t functioning to be around the rest of the Human Race.

But I was born with this. I wasn’t in some horrible car accident, acquired a sporting injury. Nobody hit me in the head and I woke up in hospital a few weeks later with it… it’s in my DNA – my Epilespy is genetic. I can’t have children because of it. I don’t’ want my children to have this horrible condition and have to watch them become the guinea pigs of doctors and go through the same crap I did growing up: the blood tests, the specialists, the pain of taking medications that taste like old socks and make your nose bleed if your body temperature rises too high and you don’t sweat.

Couple this with me dying aged 2 and you’ve got my life of trying to rewire my brain over the last 35 years. A large piece of my brain doesn’t work – and it’s where I’d normally work out maths, where my comprehension would be hard at work understanding things, where everything would ‘come together’ in a plan for things in life, in anything I’d be doing in life. Things I do in my life take twice as long to do because I have to think it out more – it’s more effort for me to get things done.

I’ve also had tests done to see if I could get my brain operated on to ‘fix’ this in Melbourne. I was there in one of the biggest and best private hospitals for 2 weeks, kept awake in a hot room (to trigger a seizure) and nothing much happened. Actually I nearly died while I was there – a few times. The first time was when I saw a huge Angelic figure at the end of my bed and I completely freaked out and tried to climb the walls. At this point the professor who was looking after me personally came to the hospital and told me to go to sleep… and I was thankful he said that – anything to get away from that thing at the end of the bed.

The second time was when they moved me from the testing room, removed all the EEG electrodes I had had on my head for the week and told me that I wasn’t a candidate and put me into another room. They just shoved me back onto my medications without weaning me onto them – like they were supposed to over the next week or two, then send me home. When I started showing signs of problems, they gave me a Valium and it overdosed me. This happened a couple of times before I became violently ill and was physically sick at the hotel Mum and Dad were staying at. I remember being sick 4 times after seeing four of everything around me, then I blacked out – I lost 3 days. To this day, I don’t remember anything after throwing up into a saucepan in that hotel; just that I lost 2 dress sizes and Mum could physically carry me to the bathroom when I tried to walk there on my own. It took another three days to get me onto a plane in a wheelchair home because I was in such a bad way. It took so long for me to come back from that. But we found a great Neurologist who told me straight away that I was on the wrong medications, they were all too strong and that my Epilepsy was the worse type (Tonic Clonic Partial Seizures) and yet I only need the tiniest amount of Epilum, Tegritol and Topamax to control it… amazing, right?

However, as I’ve aged, my brain’s rewiring has made it easier for me to keep those highways open long enough to learn about what I need to do each day. From going shopping to do my laundry, I can easily do my everyday stuff around the place. But if I have to learn something new, it’s the most difficult thing around. I’m constantly read instructions over and over to get it right; and I hate that – but I’m a stickler to get things right, it’s just how I am.

Over the last few years, I’ve been allowed to drive a car again – yep, I was permitted to drive a car aged 19 and by the age of 27 I had to give it up until I was stablised. This sucked big-time, but it was safer for everyone on the roads; including me. In August 2011, I sold my first car to the wreckers for $150 and said goodbye to it then came home and cried because I never thought I’d drive again. It was a very sad day for me to not see my little red car again; and yet I’d been stabilized since 24th, April 2004.

In 2013, Mum and Dad were going overseas again and they were dropping Mum’s Pajero to my place for me to mind (as usual) but this time they said I could drive it… I had to ask them to repeat the last part! About 2 days after they left, I spent 2 hours talking myself into driving that gas-guzzler… and once I got that thing outside the gate of my townhouse complex and onto the road, I didn’t look back!

I started remodeling my front garden, then my back garden, cleaning out my house, working on more books (I’m a writer) and my shopping took only 4 hours to do instead of 6 hours due to me having a car at my disposal. I also opened my hobby business – Lynda’s Crafty Pegs – and started working at boutique and craft markets on the weekends. This meant I had to get up at 5am some Sundays and get my butt out there in the freezing cold, but it was good to get myself working at places where I’d be away from my house and networking with other creative people like myself.

And last year, Dad bought me a car for my 41st Birthday! It was so cool to be able to drive to the coast on my own for a few days to visit my folks, then come home when I wanted to by car; instead of catching a bus – which took 6 hours to get up here.

I have found that life is only getting better and better. I eat a very healthy diet, have cut out all types of junk food and takeaway food and make all my meals at home from scratch. I’m vegetarian, don’t smoke or drink alcohol and love gardening. I’m the biggest book collector in my family and have dedicated one room of my townhouse to a library of books which either amazes or stuns people… either way, when my friends have asked me about a book, I normally know if I have it and where it might be in the room. I love to recondition and refurbish old furniture and have a lovely old 1970’s chair in my library where I hide here and kick back and read whenever I want to.

Now I’m stabilized completely, I’m looking more into the future of wanting to travel more. However I do find making friends, keeping friends, getting a job and having relationships some of the most difficult things to do – even if I look and act normal, it’s the medication that always seem to bug people. I just have to remember that it’s them with the problem and not me. I’m already okay with myself just the way I am… but then, I’m also still working on my life, I’m still relatively young and there’s still a long way to go with this medical condition to understand it better.” ~Lynda

A Climbers Tale

“It’s your reaction to adversity, not the adversity itself, that determine’s how your life story will develop.” ~Dieter F. Uchtdorf

The story below comes from Kristian Solem and blows my mind.  The guy is amazing.  He’s lived an extraordinary life as a climber.  He gets to see the world from a vantage point most won’t… from the face of rock walls in areas most will never venture to see. I hope his story will help you realize how precious each moment is, how important our physical health is, but also our mental approach to life.

 

It was May 27, 2007.  I enjoyed the steep hike up to Church Dome, a paradise for rock climbers hidden away in California’s Domelands Wilderness. At 54 I was past my prime as an athlete, but I was in good shape and regularly out-performed climbers half my age. I was sitting on the edge of a small precipice taking in the view and watching my friends, three small figures winding their way up the slope. At times like this I would often think of the opening lines of Edward Abbey’s Desert Solitaire: “This is the most beautiful place on earth. There are many such places…”

0007

Then my left hand began to tremor. Annoyed, I focused my attention to make it stop. Resistance was futile; the tremors intensified. Not knowing what was happening I crawled away from the precipice and rolled around in the dirt while convulsions took over my left arm, chest and finally my left leg. I felt my face being pulled in every direction, and my field of vision began to shrink. I will never forget that moment, I was certain that death was at hand. Please. It’s too soon; this isn’t supposed to happen yet… I fought with every fiber of my being, but lost the battle and surrendered.

I was coming to as my friends arrived. They saw me lying in the dirt and thought I had fallen from the cliff above while climbing free solo. After a minute I sat up and assured them this was not the case. I played down what had happened so no one really took it seriously, myself included, now that I was back among the living. Besides, we were 30 miles of rough dirt road from the nearest paved mountain road, and even further from cell reception. If I was about to drop dead there wasn’t much we could do about it. I climbed hard for the next few days.

Two weeks later, back at Church Dome, it happened again. I had told my wife about the first time, but since I downplayed it she didn’t worry. But this time she was there, and the seizure was more intense. Later, Barbara told me she could hear my eyelids clapping. I saw my regular physician, Dr. Lang, the next day. He interviewed me and began to do a series of strength and reflex tests. Suddenly his demeanor changed. “I’ve got a guy here who needs an MRI of the brain stat! Get him to the front of the line; tell them he’s on his way down now!” His assistant sprang into action. I was in a daze as I rode the elevator down to the imaging facility.

Later, as I walked in my front door, the phone rang. “Hello Kristian? This is Dr. Lang. We have a diagnosis. You have an AVM, an arteriovenous malformation.” He told me he had called Dr. Fred Edelman, a respected neurosurgeon and clinical professor at UCLA, who would see me the next day. He referred to Dr. Edelman as “an elder statesman in the field.”

The radiologist had sent the MRI films and report to Dr. Lang and had also given me a cd. I opened the disc on my computer and began glancing through the images assuming that only a specialist would see the problem. Then I hit an image which showed an obvious anomaly, what appeared to be a hole in the right side of my brain. Stunned by what I saw, I searched the web for AVM. I learned that it’s a birth defect where an artery turns directly into a vein without forming the bed of capillaries which nourish the cells and carry away the waste products of metabolism. These vascular defects grow over time and often bleed. Although they are very rare, AVMs are the leading cause of brain hemorrhages in young adults.

avm01

The next day Barbara and I sat in the darkened office of Dr. Edelman. My MRI films hung on light panels on the wall. “The location of your AVM is exquisite.” Barbara (an attorney) jumped in. “Exquisite?? What does exquisite mean in this context?” “The location of this AVM is exquisite, meaning that it cannot be treated surgically.” He went on to say that my AVM was located in the “motor control strips” in the right side of my brain. We moved into an examination room. Dr. Edelman asked me to strip down to my shorts. He led me through a set of physical tests; reflexes, strength, etc. “For someone with your problem you present very well. What do you do to stay in shape?” “I’m a climber.”

Dr. Edelman called Dr. Neil Martin, Chief of Neurosurgery at UCLA Medical Center. Two days later Barbara and I sat in his office. He concurred with Dr. Edelman. “No responsible surgeon would attempt to remove your AVM. The result would be catastrophic.” He told us there were several possible non-invasive treatment options and we should begin the process of exploring these. For the next two months I underwent brain angiograms, CT and MRI scans, functional brain mapping and more. One treatment after another was ruled out. A final option was left. I was to meet with a Dr. DeSalles who would decide if I was a candidate for a precise use of gamma radiation called stereotactic radiosurgery.

As I sat in the waiting room a gentleman in a white lab coat walked in. “Hi, are you Kristian? I’m Dr. Yoshida.” We sat in his office and chatted for about an hour. He asked about my home life, family, friends, work, my interests and hobbies. I mentioned climbing. “I’ve always wanted to know about this sport. For starters, how do you get the ropes up?” I drew a few diagrams of how the system works. “Have you climbed El Capitan in Yosemite?” “Yes.” “Very good. Let’s go meet Dr. DeSalles.”

Dr. DeSalles and several residents were studying my scans. He turned to Dr. Yoshida. “So, tell us about Kristian.” I was amazed as Dr. Yoshida distilled his knowledge of me from our hour together down to the essentials. He spoke for three minutes. It was all there. Dr. DeSalles looked me over. “I think I have some good news for you.” He went on to explain the process of stereotactic radiosurgery. Properly dosed, the radiation would destroy the DNA in the AVM’s cells but not the tissue itself. The cells would stop reproducing and the affected area would become scar tissue over two to three years. He asked me if I wanted to be a part of this program and undergo the procedure. I agreed without hesitation. The next two weeks were a blur of 3d imaging scans and consults with the doctors on the team. Finally medical physicists programmed my exact sequence into the machine, and treatment took place on August 16, 2007.

A year and a half later I was back on my game. I took medication to control seizures, but the effects were manageable. I was thrilled to be climbing again.

Photo credit, Randy Wenzel.

0007

Jane's-bouldering

These pictures were taken post treatment. On top I am leading a climb in Joshua Tree National Park called “Black President.” It’s not cutting edge, but a route good climbers respect. On the bottom I’m just bouldering around. You can see the atrophy in my left arm, a result of muscle recruitment problems related to the AVM.

Since then there’ve been ups and downs, some bumps in the road. I’ve had allergic reactions to meds that worked well for me, and been forced to take ones that were intolerable. The list includes Dilantin, Keppra, Trileptol + Dexamethazone, back to Keppra, then Vimpat and now Lamictal. Since 2007 I’ve had a total of five seizures, not a big number, but each much more severe than the one before. I simply cannot have another, so I’ve faced the reality that the meds are for life. After two years working with neurologist Dr. Mark Nuwer at UCLA I have found one which seems to meet my needs.

So what is there to be grateful for? As a young man my AVM did not bleed. Many do. I could have been disabled or dead.

My AVM did not symptomize until there was a viable way to treat it. It held out until medical technology caught up.

My AVM did not interfere in any way with my love for physical activities until I reached 54. I used to be cocky, “You’re only as good as what you can climb right now, on demand.” Today it’s “no one can take away from you what you’ve done.”

And of course I am forever in debt to the doctors, technicians and staff at UCLA Medical Center. I am not wealthy, a pro athlete or a celebrity, but the availability of PPO insurance plans enable patients to move up through the various doctors quickly, without waiting for referrals from a primary physician. Also, I present well, and I’m proactive and take my interactions with doctors seriously. I walk into every appointment with a list of questions and write down the answers. Often I’ll review the answers with the doctor. Doctors see lots of patients. If you stand out in the crowd they will usually return your interest with their own.

I joke with my friends that I’m in pretty good shape from the neck down. Dr. DeSalles seemed to agree, saying once “You look a lot better on the outside than you do on the inside.” At first I was taken aback, but he smiled and we laughed. It was all good.

Fueling for 500 miles

I’ve been asked by several people, “What did you eat while you were running?”  So, this blog is dedicated to fueling for 500 miles.  To be honest, I’m not sure I did it the correct way.  In fact I’m sure there was much room for improvement for the amount of output I had.  I learned as I went. But, I felt good (all but two days where I ignorantly underfed myself) and I made it through injury free and able to workout two days after the run (I will post later about my recovery tools which also played a HUGE role).

I was so lucky in that I had top level chefs from True Nature Kitchen preparing my meals for me.  They would make them, vacuum seal them, freeze them and bring them to us in coolers.  We had a microwave in Big Blue that I would use for convenience sake, but typically would just throw them in a hot pot of boiling water.

The first two weeks looked something like this…

  • Wake up and almost immediately eat 2 hard boiled eggs and a banana
  • During the run I would eat pre-made baby food (sweet potatoes, turmeric, black pepper, chia) and drink my 100+ ounces of water with electrolyte replacement tabs in it.
  • Post-run I hammered a Coconut Rehydrate and a Gluten Free polenta muffin right away.
  • After Tory worked on my legs (and sometimes during) I would eat a pre-made meal.  These varied but always contained a clean source of lean, organic meat (turkey, chicken, salmon), rice or sweet potatoes (or another root veggie), greens (kale, broccoli or brussel sprouts).
  • Before bed I would try to eat a bit more, but was usually just force feeding.  I would either have a bit more of a heated up meal or some paleo granola with almond milk.
  • I would top the night off with water and my PurePharma 3 packet (magnesium, fish oil and vitamin D).

IMG_3483

At the half way point, I was at my mom’s house.  I knew I had lost a bit of weight, but wasn’t sure how much.  I was shocked to see that I was down 11 pounds.  Then, I got pretty nervous.  I still had 2 weeks to go and didn’t want to come out of this 20 pounds down!  So my food shifted a bit.  Due to lack of appetite, I was already force feeding, so I knew that I couldn’t stick to my strict clean eating diet only for higher calorie consumption.  I spoke with some ultra runners that suggested eating whatever sounded good (oreos, ice cream, pizza).  So…. then it began.

On top of the food I already listed above, I added in the following.  The energy it took to chew food was sometimes too much (I know how crazy that sounds), so True Nature kindly whipped up some amazing Chicken Soup.  I did find that something cold after the run was way more appetizing than something hot, so I had chicken curry salad at lunch and saved the heated meal for dinner.  I also started to allow some junk food in.  I ate things that I hadn’t eaten in 7 or 8 years.  I was craving salt and vinegar potato chips and peanut M&Ms on a regular basis, so they became a staple for quick calories without a lot of eating.  Throughout the last 2 weeks, I also had some ice cream bars, Doritos, gluten free cookies, chips and salsa and whatever sounded good at the time.  I also had good snacks; apple with almond butter, carrots and hummus, more polenta muffins.  Turns out my shift in eating the second half faired way better as I ended the run only down 13 pounds total (2 more pounds lost the second half).

I’m not sure of the amount of calories I was consuming each day.  I’ve never been a counter.  I just ate what sounded good or what people put in front of me.  I remained gluten free as I know my stomach can’t handle gluten and for the most part the majority of my food was nutrient dense and healthy.  On average, I was burning around 2500 calories a day on the run, which meant I would have to be consuming around 5000-6000 calories a day to maintain my weight.  IMPOSSIBLE!

IMG_3187

Now that the run is over, I am back to having the junk food out of my diet (with my necessary occasionally dark chocolate fix).  But, I can tell you that I learned a lot from the True Nature Kitchen staff on how and why certain foods should be in my diet.  Please read on to learn some yourself.

Here is a note from the chefs at True Nature Kitchen on their approach to my nourishment.  Without them I literally would have not made it.  I would have been trying to live on salami, carrots and any other easily accessible food that I could travel with.  Without their love, support and nourishing touch, Move Mountains would have been a totally different experience.  THANK YOU SO MUCH TO ALL OF YOU!

“As we engaged in the monumental task of nourishing Jenny in her Moving of Mountains and her 500 mile run across Colorado, we took many aspects into account. We evaluated caloric intake, Jenny’s dietary guidelines, and the difficulty of eating while running. Also present for long endurance athletes are lack of apetitie and gastric distress. We also looked at rehydration, nutritionally supporting elements of muscle fatigue, inflammation as well as potential energy support and enhancement.

Knowing that Jenny’s background in CrossFit incorporated a lot of Paleo and Primal food preferences, however Jenny felt it was important to not be too confined by any specific modality and prepare foods that met her needs.

With these conditions in mind we set out to supply foods already in our True Nature Kitchen and engage some development for products that would support her monumental efforts. Below are some key ingredients that we work with in our foods.”

Screen shot 2014-11-28 at 3.43.03 PM

True Nature uses all organic ingredients.

Raw Coconut Meat and Coconut Oil –

Benefits of Coconut Meat

About MCT Oil (Coconut Oil)

  • Immediate source of fuel from intestines to liver
  • MCT converts to ketone bodies that may potentially be replacement energy for the brain
  • MCT contain vitamins A and E, and polyphenols and phytosterols, all work together to decrease the levels of LDL cholesterol
Chia Seeds

Benefits of Chia Seeds

What is Chia

  • Provide body with massive amount of nutrients and antioxidants
  • May be a good source to “carb load” without the sugars as most of the carbs are fibers
Pinole

Fuel Your run with Pinole

Turmeric and Black Pepper

Benefits of Turmeric and Black Pepper

Q &A about Turmeric

  • A powerful source of antioxidant, anti-inflammatory, antiseptic, anti-fungal, anti-bacterial agents
  • Black pepper (piperine) enhances the bioavailability of turmeric (Curcumin)
  • Piperine in black pepper can trigger TRPV1 (transient receptor potential vanilloid type-1) in the body, which triggers reduction of pain.
Maca

Benefits of Maca

  • Rich in vitamin B vitamins, C, and E and calcium, zinc, iron, magnesium, phosphorous and amino acids.
  • May increase energy levels and stamina
  • Supplies iron and helps restore red blood cells
Himalayan Salt

Benefits of Himalayan Salt

  • Controls water levels in the body for proper functioning
  • Promotes pH balance in cells
  • Aides in vascular health and respiratory function
  • Reduces cramps and enhances bone health
Bamboo Salt

What is bamboo salt?

  • Contains more than 70 minerals
  • Among these minerals are… calcium, phosphorus, magnesium, iron, manganese, copper, and potassium, zinc.
  • Alkaline Salt (all other salts are acidic)
Terramin Clay

What is Terramin Clay?

  • Naturally supplements with more than 50 micro, macro and trace mineral nutrients
  • Removes toxins, heavy metals and cleanses digestive tract
Dandelion Root

Benefits of Dandelion and Dandelion Root

  • Digestive Aide
  • Helps Kidneys clear out waste, salt and excess water
  • Improves liver function by removing toxins and reestablishing hydration and electrolyte balance
  • Contains phytonutrients and essential fatty acids to lower inflammation
Other Ingredients

Sweet Potatoes, Green Apples, Organic Brown Rice, Figs, Kale /Lacinato, Spinach, Local and Organic Proteins, Local Organic Eggs

 

True Nature Prepared Products that nourished Moving Mountains

Coconut Re-hydrate – which will hopefully be available soon at True Nature Kitchen

Gluten Free Muffins – my goal is to get the dry ingredients of these for sale because they are killer!

Chia Cherry Power Bars

Barefoot Korima ROAD POWER PACKS (baby foods) – also my goal to get these available.  They are great for endurance athletes but also good for CrossFit athletes between multiple workouts in a day

Dandelion Chai – SOOOOO good for you and SOOOO good tasting!

True Nature Prana Burst

True JUN – probiotic drink (also possibly available soon at True Nature Kitchen)

Fortified Chicken Bone Broth and Soup

Packaged Meals

Roasted Salmon, Roasted Lamb, Chia Pinole Meatloaf, Roasted Skirt Steak, Roasted Tamari Chicken Thighs, Whole Roasted Chicken

Jim Schoenberg – A Warrior

I’m so excited to share the following story with you all.  The man who wrote this became a lifelong friend of mine a little over a month ago in a matter of minutes.  We connected via FaceBook and met at the New Mexico border of Colorado to start Move Mountains together.   Thank you Jim Schoenberg for sharing your story with us, for letting me in your life and for being so brave to do what you do everyday.

 

How It Happened

It could’ve been any day. There I was, sitting at my computer scrolling through my news feed when I see this repost from Josh Everett on Jenny LaBaw doing a run through Colorado for epilepsy. I scratched my head and thought to myself, “hmm, what’s this all about?” So I clicked on the link to labawlife.com and started my review. I was blown away. A couple of things instantly came to mind: 1) How didn’t I know that she had epilepsy? and 2) Why is she bringing so much attention to epilepsy? I was puzzled to say the least. So I watched the YouTube videos and read up on Jenny’s background. Things began to resonate. As I meditated over the validity of the project and her stated goal, I left the site and returned to my news feed to see what else was going on. In a matter of seconds, I see another repost from CJ Martin come up on the same story. I shook my head thinking, “can this really be happening – do people really care about this?”

My Background

I began my CrossFit journey in early 2010 after exiting the ultrarunning circuit where I hit my goal of completing a 50 mile ultra under the course time cap (Avalon 50 on Catalina Island, CA). In 2011, I co-founded CrossFit Sandstorm and have been coaching and training ever since. So I’ve got a good understanding of CrossFit and have a great social network. Before CrossFit, I played soccer. I was a goalkeeper, which may explain a lot. I played at the D1 collegiate level for the University at Buffalo. Oddly enough, the first signs of my epilepsy emerged in those same collegiate years and that’s where my journey begins.

The Beginning

It was my junior year in college, making the year 1997. I was pursing my degree in Geographic Information Systems (GIS) and much of my course work was working with computer-based cartographic programs. I’d spend countless hours in front of a Macintosh, creating digital maps, correlating datasets and animating GIFs. But one day that all changed. I don’t remember everything but I do remember “the just before and the just after” parts. I was attempting to digitize a boundary and all of a sudden, my arm jerked and the mouse flew, causing the digital line to travel off-screen. I thought to myself, “that was odd.” So I shook my head to clear the cobwebs, gave myself some assurances, and kept on working. But it happened again, and again and again. I don’t recall how many times it happened or for how long, but I was getting nervous. I had been in the computer lab for 8 hours and clearly something was up. And that concludes the “just before” part. My very next memory is one that is with me forever. Never to be forgotten, never to lose its power. This marks the “just after” part. I am in an ambulance. I hear sirens. I’m traveling somewhere. I feel a mask on my face. My arms are strapped down – I can’t move. I see images of people hovering over me. They are speaking but I cannot understand them – I don’t know them. I begin to fight for my life. I begin to break free of the straps. I begin to yell. I try to get the mask off my face my thrashing my head back and forth. Panic breaks out. But then, I start getting assurances: “Sir, you are going to be OK. We are here to help. You had a seizure. We are taking you to the hospital.”

The Middle

After college and up until my early 30s, I had similar jerking issues when I was fatigued. I never thought anything of it. They were almost 2nd nature. When I got tired, I got jerky. They would happen while driving, while working, while falling asleep, while waking up. They would last no more than a second. I would equate it to someone “being startled.” Imagine you are focused on a task and deep in thought; then all of sudden you are startled – and you jump. That’s about the best analogy I can offer for how it feels to have a myoclonic jerk. They are so short, you think nothing of it. But for me, they started becoming warning signs. In the fall of 2008, I began experiencing a new symptom, persistent tinnitus. But unlike the ringing one would typically hear with tinnitus, I dubbed the sound, “brain noise.” To me, the sound wasn’t a ring and it wasn’t coming from my ears. It felt like my brain was humming at a very high frequency. It was making sleep very difficult and I was becoming exhausted with each passing day. I visited with my primary care doctor and was referred to an ENT for the tinnitus and given diazepam for sleep. At the ENT, everything checked out fine, perfect hearing. Now 2009 and still suffering with tinnitus, my primary care doctor referred me for a neurological evaluation. Upon meeting my first neurologist, the word epilepsy never came up. His first concern was an acoustic neuroma. So an MRI was ordered and once again, everything checked out fine – no tumors. By the time spring came around, I was exhausted – a walking zombie – and was scheduled for an EEG. Just 3 days before the appointment, I was again sitting at my computer when the jerks came back. They were just as intense as they were back in college. And this time, I was worried. I left my computer and headed towards a staircase. While going down, I had a jerk. I missed a step and half-fell into the wall. Shortly after, I grabbed a small piece of chocolate, unwrapped it from the foil, and went to toss it in my mouth. But I tossed it straight across the room. “What the heck is going on?” I thought to myself. The feeling was part déjà vu, part reality. I assured myself that things would be OK and I forced myself to sit back down in my chair and resume working. And that’s all I remember. Twelve years after my first tonic-clonic seizure, I had my 2nd.

The Now

From age 33 to age 39 things have really changed. After that 2nd seizure in 2009, I finally had the EEG and was diagnosed with a form of generalized epilepsy called JME. I was told by my doctor, “you now have a disability.” I was told by my doctor, “you will need permission to drive.” I was told by my doctor, “you may not be able to work.” I was told by my doctor, “you’ll have to take anti-epileptic drugs (AED) for the rest of your life.” The list went on and on. I was officially boxed up, labeled and shipped off into the epilepsy corner. Since that fateful day in 2009 and up until 2014, I experienced 4 tonic-clonic seizures. But after switching neurologists and adjusting my AEDs, I have been seizure free – both myoclonic and tonic-clonic. The quality of my life has vastly improved and the symptoms are all but gone. However, as I reflect back I can tell you that the hardest part of facing my epilepsy was the amnesia I’d experience after a tonic-clonic. After a seizure of that magnitude, I would come to not knowing who I was, where I was, or who anyone else was (including family members). Of the 4 recent seizures, 1 happened to occur at our CrossFit gym and was clocked at over 5 minutes. With my friends, family and customers present, it took me almost 3 hours for the amnesia to run its course. But I continue to be mindful of taking medications, which at times can be challenging. But where I spend most of my effort is in obtaining sufficient rest, especially as I travel. I have found jetlag to be one of the most difficult things to cope with and I am ever-vigilant when I take trips – planning for extra time before and after the travel to ensure proper recovery. With that one exception, I do believe my life has stabilized. I am quite pleased with my new doctor and have more dialogue with those closest to me on how epilepsy has impacted our lives. I am also hopeful because research on JME shows that things are supposed to improve as I enter the 4th decade of life, which is just around the corner. To say the least, I am optimistic that the worst is behind me.

My Family

11160581_829579910454555_3915571725553895139_n

I owe a lot to my family: my wife, 2 boys and my daughter. I can only imagine how hard it must be for them to understand me. They’ve watched me change. They don’t understand how it feels, heck very few people do. But they’ve had to suffer in a very different way. For example, you hear the phrase, “I’m tired” thrown around a lot. But “I’m tired” to an epileptic has an entirely different meaning. I don’t know how to articulate that point but I can’t emphasize it enough. I say “I’m tired” quite a bit – but I say it as a warning. I say it to let people around me know that my brain isn’t working right – that I need to stop doing anything; stop thinking, stop moving, stop talking, stop doing…and just lay down. I need to just…be. Therefore, when you have a big family with lots of responsibilities and 3 kids, the phrase “I’m tired” is not going to go over well and they’re forced to bear the burden of daddy checking out. I also have very fast mood swings and temper flares. If you have kids, think 5x faster than the worst 2 year-old tantrum you’ve ever witnessed. My mood can change on a dime. Not most, but ALL of the time this mood shift is towards the negative spectrum. I end up hurting those I love the most and to make matters worse, I don’t even know I am hurting them. My brain just fires so fast and things are expressed so quickly that there is no chance to censor any of it. There is no filter because there is no time. During these moments, everything feels like a race. Things move faster and faster and it’s almost impossible to slow them down. Eventually, things subside and you’re forced to backtrack so you can figure out “what the heck just happened?” So just recently, my wife and I had a conversation about these past few years. It was the first time we took a step back and reflected on my epilepsy. And then, it dawned on me. I came to the realization that when we were first dating, I was not diagnosed with epilepsy. I wondered, “had it really been that long?” That moment was profound as I sat there contemplating our past. My wife had been there by my side, coping with my epilepsy since day one – I owe her everything.

12002987_10206418577117690_967847363537083347_n

My Future

But why are we even having this discussion? I owe that to Jenny LaBaw. Facing my own issues, both personal and inter-personal, has allowed me to break free from the grasp epilepsy has had over me. With just a few months until my 40th birthday, I finally had the talk with my kids about epilepsy: about what to do, how to help, what not to do, etc. We laughed, we cried, we watched videos and as a result, they loved me even more. And I decided on a whim, with little convincing, and just 4 days after returning from a Caribbean vacation, to help kick off the Move Mountains challenge. Although I had absolutely no training under my belt and flat out told Jenny I was in no shape to run 25 miles to Durango, she was convinced I had to come. On the fence, I turned to a song I use quite often to help me cope with seizures. At the end of this song, the chorus simply repeats [shouting], “walk with me”. As if the message was subliminal, I knew what I had to do. I knew I could walk with her, I knew that I should walk with her. So I gathered up my gear, relied on my past distance running experience and kicked off Move Mountains at the NM state line on September 19th. I gave a valiant effort but at mile 14, I called it quits due to cramping and nausea. In hindsight, I realized how unprepared I was for the challenge – but I was 100% glad that I took part. As I left Durango and now move forward in life, I return with new vigor and a new friend. I always enjoy working out and enjoy the challenges of programming strength and conditioning for our community. Jenny and I talked about perhaps doing a CrossFit fundraiser for epilepsy awareness in 2016 or 2017. Personally, I am a pretty average at CrossFit, always finishing in the top 50% in my region. But that was for the Open; in 2016 it’ll be Open Masters (LOL). But CrossFit teaches me a lot about what can be done. The ability to achieve anything you set your mind to. Perhaps that’s my connection to it. During our 14 miles together I told Jenny a story about the day my EEG was scheduled (just a few days before my seizure). I left the neurologists office that day with his final words being, “…see you in a few days, I’d hate to diagnose you with epilepsy at 33 years old.” How does one respond that something like that? Well, you start by moving mountains.

IMG_3643

Epilepsy Awareness Month

I can’t believe that, as of tomorrow, it will be two weeks already since the completion of my 500-mile run across Colorado for epilepsy awareness.  It seems like only days ago that I looked at Marcus as we were driving over Molas Pass and voiced my decision to run.  It seems like I stepped onto that New Mexico/Colorado border just minutes ago.  Now I am in the process of figuring out what’s next to come for LaBaw Life: Move Mountains.  But the timing for continuing my mission to educate and bring awareness to this condition hasn’t been better.

Unknown-1

November is Epilepsy Awareness month.  I am going to be posting about statistics, research and personal testimonials.  I hope to get medical professionals focusing on epilepsy and people living with epilepsy to participate in some awareness efforts with me.  If there is anything you really are dying to know, or maybe just a little curious about, please let me know and I will do my best to get information posted regarding your questions.

 

To start with, here are some basic, but shocking, stats regarding epilepsy sourced from The Epilepsy Foundation website.

  • 65 million people around the world live with epilepsy
  • Over 2 million people in the US live with epilepsy
  • 1/3 of these people live with uncontrolled seizures because no available treatment works for them
  • 6 out of 10 people who are diagnosed, the cause is unknown
  • 1 in 26 people in the US will develop epilepsy at some point in their life

images

Stay tuned tomorrow for a guest post from someone, who just 2 months ago on the New Mexico/Colorado border, touched my heart and soul.  This man has been living for 5 years with epilepsy, in the dark with fear and embarrassment.  His story will bring you to tears.

Also, I will be keeping the Move Mountains Fundraising page open through the end of this month.

Donate Button

If you want to share your story or a loved ones story, please don’t hesitate to email me at jenny@jennylabaw.com.  Please help me get rid of the global burden and stigma with epilepsy.

“Each one of us can make a difference, together we make change.” ~Barbara Milkusi