Status Quo

Things here are pretty much status quo.  

Mike did see the new seizure doctor (new to us anyway) at Barrow in August.  I cautiously say we really liked him because we had a bad experience at Barrow when we first moved here a few years ago.  Dr. Saghal had done his homework and knew Mike's entire situation and then assessed him.  He ended up having his attending, Dr. Schusse, come in to the room to be sure they are doing everything they can.  They aren't going to do any new EEGs as of yet because they got all the info they needed from the EEGs Mayo did.  Dr. Saghal IS referring Mike to Dr. Knievel who is the doctor we were hoping to get into to begin with -so that was a relief.  She is supposedly the best in Phoenix when it comes to headaches due to trauma.  Dr. Saghal also made a referral for Mike to see Dr. Cardenas at the Barrow Concussion and BRAINS Clinic.  So now we just wait on an opening to go in.

Mike's still having seizures fairly regularly.  For the first time ever I was able to catch what happens to him on THIS VIDEO.  (It's also in the photos/videos section of this website.)  I will warn you, it's not easy to watch.  But it gives you an idea of daily life for him.  I sent it to our primary care doctor the next day and his reply was "Wow....  just wow!  I had no idea it was that bad...".  I'm glad we have it now so the other doctors can see exactly what I try to describe and the disability court can see exactly what happens!

I guess the biggest thing that's happening right now is we have to go about 3 weeks with NO HEALTH INSURANCE.  We filled all of Mike's scripts the last week on our old insurance and will be buying our own policy October 10th.  We have to wait because it's crazy expensive to purchase your own.  We do have the option of buying the COBRA through my last employer, but it's even more expensive than buying our own.  We are hoping and praying we can get through the next 3 weeks without needing a doctor!  

So - the prayer requests right now are

1)  We won't need insurance this 3 weeks! 
2)  We get a disability hearing date SOON!
3)  We hear from Dr. Knievel and Dr. Cardenas' offices soon with appointment dates

Much love to all!!
Mike & Michelle

Walk a Day in My Shoes...

(Warning...  soapbox rant ahead)

I'm feeling hurt and frustrated, almost even angry this evening after receiving a message from someone that I am so "negative" and not being thankful for what I do have and it's demonstrated by what I post on Facebook.  So, I went back through the entire month of August and re-read my posts....  all 61 of them (wow I post a lot LOL).  Of those, there were 4 that I might consider negative (i.e. today's post about disability) and 2 that were prayer requests.  If those 6 posts upset you or led you to believe that I'm not grateful for what I do have...  I'm sorry!

I guess it leads me to ask a few things....

•  Have you ever watched your husband try to run around or play with the kids and end up in an absence seizure and unresponsive for minutes at a time...  just for trying to be a Dad?
•  Have you ever had to drain your bank account at the 11th hour just so you'd have enough cash to get you through to the next paycheck, knowing that overnight something would clear and leave it in the red?
•  Have you ever not filled a prescription that you desperately needed so that you can pay the athletic fee your child needs to participate in a sport that he/she loves?
•  Have you ever gone to church, gatherings, etc. that were meant for couples over and over alone because your loved one is recovering from a bad seizure the day before?
•  Have you ever not been able to drive to your child's sporting even that he/she loves because you can't afford the gas money?
•  Have you ever watched your child be the patient during a full code in a hospital room?  (and contrary to the belief of a few I do NOT enjoy it!)
•  Have you ever put off appointment after appointment thinking it would fit into the next check's budget?
•  Have you ever held your spouse as he/she cried at night because "this isn't how it's supposed to be...  I'm supposed to be able to work and support you"

I could go on and on....  this is only a list of a FEW of the things that I HAVE done over and over again over the last few years (and some even the last few days!).  But I do still wake up and give thanks for the food on our table, the roof over our heads, and every breath that we take!  And I do still give thanks that I have my husband by my side.  I love my family more than anything and I will keep pushing forward each and every day, come what may!

So unless you've walked a day in my shoes...  please don't judge me for having a bad day.

OK...  off my soapbox now.





Want to know how to help or follow updates on Michael....  click HERE.

What Brain Injury Survivors Want You to Know

This is a really good article Michael posted this week on "What Brain Injury Survivors Want You to Know" from the August 16, 2015 Health Care Solutions Plus Site.  Michael felt like it was pretty spot on and "a good read" for anyone who has interactions with him, or interactions with people who have similar issues.  The original article can be found in the link at the end.




I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.
Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.


http://healthcaresolutionsplus.org/lost-found-what-brain-injury-survivors-want-you-to-kno

17 Years Ago Today.....

(Chase MacKenzie at 1 Year Old)

Chase turns 17 years old today, at 12:25pm Eastern time to be precise! What a day that was for all of us. Grandma and Grandpa Casto made the drive to Bloomington for your birth - we were so glad they were there!

Chase was determined to be born that day regardless of the planned c-section! I woke up that morning and went into labor before we even left for the hospital. Created quite the stir when we got to the hospital considering I HAD to have a c-section! Little did we know that was just the beginning of the day's chaos.

After all 9 pounds 6 ounces of Chase was delivered via c-section things got pretty ugly for a while. I remember being in the recovery room and Mike being with me. Then all the nurses scurrying around, Mike being pushed out of the room, and then rushing me back into surgery. At one point, after losing several pints of blood, the nurse went out to tell Mike and my parents I was bleeding bad and they weren't able to stop it - the outcome was looking very grim. Fortunately, by the power of God, they were wrong.

I don't remember anything after recovery until the next day when I was told what happened. Mike looked at me with tears in his eyes saying I scared them all and I was never to do that again. He was terrified of losing me and being a single father of 3.

I spent the next week in the hospital and have enjoyed every minute of watching Chase grow up! He's struggled with more medical problems than any child should have to endure, yet is always smiling from ear-to-ear!

Chase - you bring so much joy to our lives! We're so very proud of how far you've come and we know that you will continue to reach for the stars!

We love you Buddy!

Mom and Dad

Not Much Going On

Friends and Family 

I am sorry for not updating more often, but sadly, there hasn't been much change.  Michael continues to see his neurologist and primary care physician regularly but at this point there is nothing anyone can do differently.  He is having seizures fairly regularly (usually at least one every 10 days, if not more often) and every day deals with the continued dizziness, balance deficits, headaches, etc. with some days being better than others.  We treasure the good days, and pray through the hard.  Our primary care doctor put it bluntly not long ago when he said "it's time we face the reality that this is not going to get better and focus on managing the symptoms as they come".  Not easy words to hear, but words we knew were coming.  

As far as disability goes Michaels' case is still in "ready to schedule" status for the hearing, but no word on a hearing date.  His attorney feels like it should be by the end of September, but who knows when it comes to SSA!  This has been a VERY frustrating process as we watch our finances sink and credit score plummet every single month, but we know there is an end in sight!  

As always, thank you for carrying Michael through in prayer!  

27 Years, My Angel

Let's begin by establishing the facts:
     1) The couple pictured above met 27 years ago today.
     2) The woman pictured above is an actual earthbound angel.
     3) Her 27 year relationship with the man pictured above is all the evidence required for point 2.

Most of our family, friends and even random readers of this blog know the story of petite 15 year old girl who managed to literally run over the stocky 16 year old jock because she was running late to meet her dad at the car to leave the Strawberry Festival. Instead of rehashing this story again, I prefer to look at the fact that it was destined to occur.

A couple of weeks ago we were sitting in the living room with friends, and this anniversary came up. That discussion then led down a trail that basically covered what an absolutely horrible boyfriend I tended to be, which I could not argue against, and this was without my individual issues, only my relationship actions being discussed. In the time since that I've thought back over those years. She was literally dating a self-destructive narcissist with alcohol issues, a horrible temper and an eye for other girls. Are you turned off after reading that? I am. She should have been. She probably was, but she inexplicably hung in there with me. Even after a run-in with the law that caused a good portion of family and friends to write me off for a long time, she was right there by my side. She's seen a frightening array of skeletons in my closet, but was always there to love, support and set me right. I didn't understand it then, and often throughout our marriage I've tried to figure it out, but she saw something in me that no one else could. I'm still not entirely sure what it was/is, I just know that I am grateful that she never gave up on finding it.

Over the years she has helped me to learn to control my demons. I have learned a certain level of peace and patience. She's taught me how to love, which is something that I did not understand and was not even sure truly existed. I have learned how to put others before myself even though that has never been my first, second or even third natural impulse. She introduced me to God in a way that no one else ever had and is a persistent beam of His love and grace even in our darkest times.

My health has now brought some of these challenges full circle and she is proving to be as strong, supportive and guiding of a light as ever. I hate to admit it but my mood, patience and temperament can again pose quite the challenge at times. My limitations have made her life very complicated with everything she now has to cover. She has endeavored to pursue these challenges with a sense of joy that I have trouble fathoming. The odd thing is that she understands that I have issues wrapping my mind around it and instead of throwing heavy objects at me in frustration, she launches love...always love.

I truly cannot fathom where I would have ended up if I hadn't been run over by that adorably cute girl with the bright addictive smile and incredibly cute bottom. Yeah, that's right, God knew what my weaknesses were before he sent her to mow me down.

I love You Missy. You truly are my angel.

Mother's Day Thoughts...

My eyes are so drawn to the Mother's Day cards in every store this time of year, but I quickly look away, in effort to avoid tears as another year goes by without my Mom. She left us on April 13, 2003 and losing her changed me forever. I miss her every day. I think about calling her all the time... to tell her things, to hear her voice... She was such a huge part of my life, and so quickly she was just gone.

It's funny how now, after she's gone, I realize how much she has influenced my life. The way I raise my kids, the meals I make, the way I keep my house, the clothes I wear, and yes, even some of things she used to say I find myself saying on occasion. As I get older I look in the mirror and see more of her in me... it does make me feel a bit closer to her.

Those of you with your Mom by your side, celebrate Mother's Day with her and honor her. You are blessed.

Those of you, like me, cherish your memories and never ever stop loving or missing your Mom and make her a part of your every day life.

Mom, I miss you with all of my heart and soul. I look forward ot the day we meet again.

UCLA Update

Still processing it all, but wanted to post an update on our UCLA trip.  

I guess I'll start with the good news.....  Michael is officially in the Clinical Research Study on the long term effects of TBI and the role it plays in Chronic Traumatic Encephalopathy.  The assessment covered everything!  Cognition, memory, reaction speed, balance, and more!  He was one tired man by the end of it.  The areas he scored the worst on were memory/recall and balance.  No real surprise to us.  They opted not to do the neuropsych testing because they felt the results wouldn't be valid until some of the symptoms are better under control - primarily pain.  They may have us do it at a later date, but as of right now it's not in the plan.

UCLA discussed MANY different ideas for treatment and symptom management, but he was pretty honest up front and said "if there was a magic pill to make it all go away....  you would have it by now and not be in my office".  He did have some recommendations and we are going to try a medication change that likely won't help immediately, but may over time help to improve things.  We also talked to them about trying acupuncture for some symptom management, and they were on board with that as well.  All of the recommendations UCLA made are being sent to both Michael's primary care doctor and his primary neurologist here in Phoenix.  We don't have to go back to UCLA unless things drastically change....  they will communicate with the neuro here from this point forward.  

All in all we were happy.  We had a great few days just the two of us and even had some good quality time outside of UCLA.  

We came back to Phoenix Thursday afternoon and did hear from our attorney Friday.  She said that Michael’s claim status changed to Ready to Schedule on March 31, 2015.  Basically it means that we could get a call tomorrow or many months from now to schedule an actual disability hearing date.  The hearing date is approximately 3 months from the day we hear from the scheduler.  One step forward....  yes.  But frustrating none-the-less.  
Anyhow - that's the update for now.  As always...  thank you for your love, prayers, and support!!!  

Leaving For UCLA!

The time has come....  we leave first thing in the morning for LA and check in Tuesday morning at 9am with UCLA Medical Center!!  We are a bucket of nerves and have no idea what to expect or what they will suggest.  Our hope is we walk away with 3 things....

1)  Learn more about Chronic Traumatic Encephalopathy and the role it plays in neuromuscular diseases such as ALS and MS.

2)  How do we manage the symptoms to improve overall quality of life.

3)  What can we expect down the road?

No words can describe the thanks we have for all of the financial support to make this week happen!  We thank you, again, for all of the concern and prayers and for sharing the fundraising page to help get us this far!  Please keep praying, sharing, and supporting!  This is a long, bumpy road!  

Much love!

Michael and Michelle

12 Years and Not a Day Goes By I Don't Think About Her....

I can't believe it's been 12 years since the day Mom left us.  It was a beautiful Palm Sunday morning...  much like today.  Shortly before 10am she was surrounded by many of her family...  my sister and I, her siblings, her parents, my Dad's sisters, and my father holding her hand tightly.  We were all telling her we loved her, we would be ok without her.  They were the hardest words to ever say to the woman that we never wanted to let go of.  Finally, when we let our guards down, my Aunt Jeanie started talking about a singing, dancing, hamster gift and we ALL started laughing hard.  Probably the first laughter in that house in several days.  It was then, at 10am,  that Mom opened her eyes for the first time in about a week, looked at us, and then left this world for a world of no more pain or suffering.

Not a day goes by that I don't think about Mom.  She was my best friend, my first teacher, my confidant, and truly my hero.  I can't say that it ever gets easier to be here without her and I miss absolutely everything about her.

A wonderful friend once told me each day without her is a day closer to seeing her again and being reunited at the side of Jesus.  That is the promise that I will hang on to!

Jeremiah 31:13(b) - "I will turn their mourning into gladness; I will give them comfort and joy instead of sorry"

Much Needed Family Time!

What a week!  Michael's Dad and Judy came for 4 days to visit and his sister and family (Tricia, Bill, Zach, and Ethan) came with them.  As an added surprise that his parents didn't know about....  Kayleigh flew in from Colorado to be with us too.   

The highlight of the visit was the few days we spent in Prescott with them and it certainly started off with a bang!  As we pulled down the long steep drive to the cabin the kids tried hard to wake up Michael but he was totally unresponsive.  I parked the van, threw my door open and ran around to his side of the van.  Those automatic doors couldn't open fast enough for me!  His Dad jumped out of their vehicle and came running seeing that something was wrong.  We shook him, yelled at him, and tried hard but we got nothing!  Those few minutes seemed like forever and my heart was racing!  Finally he started to mumble a little and slowly opened his eyes having no idea what happened and we aren't really sure how long he was totally unresponsive.  After he sat there for a few minutes he finally started looking around and realized where we were.  The first words out of how mouth....  "Oooooooh TREES!".  So funny!  Michael's Dad and brother in law walked him into the cabin and he was able to sit and the rest of the night he was pretty much wiped!  Poor guy!  

The rest of the Prescott trip wasn't quite as dramatic thankfully.  Michael is now using his walker when we are out and about so he was able to do a little bit and sit and rest when he needed to.  We enjoyed time walking part of the trail at Watson Lake (there are a few pictures in the Photos tab above), walked the shops in downtown Prescott, had a great dinner at Prescott Brewing Company, and enjoyed lots of sweet family time at the cabin in the mountains.  After returning home last night we finished their trip off with old friends and a campfire.  

Lots of precious memories made over the last 4 days and as always, the goodbyes were hard last night!  

Today, we look forward to UCLA..  In less than 48 hours we will be on the road to Santa Monica and finally get to sit down face to face with a man who we hope and pray has the answers we need!  

As always, thank you ALL for praying, offering financial support, the sweet messages, and just for the love and support!!  

Not Much News to Report...

Not much new to report for this week's update.  Seems like I have been super busy the last week with work and softball, but Michael had a week with NO appointments...  kind of a break for him.  

Michael did go with me to Paige's softball game last night.  Took a lot out of him.  When he gets tired and worn out his walking is awful...  scares me because he refuses to use a walker still.  Walking out of the ball park last night must have scared Jim and Jen too because Jim ended up walking Mike all the way to the car to make sure he didn't fall.  Jen told him it's TIME to use a cane at least!  Ha!

We are looking forward to Michael's parents and one of his sisters - and her family - coming a week from tonight.  They rented a cabin in Prescott to get away to the mountains for a few days before we head to UCLA in just 13 days!!  

As always; thank you for the messages, cards, donations, and prayers!  Keep them coming!  

As If We Didn't Have Enough On Our Plate....

Seems we aren't out of the stormy season of life yet.  Usually, I post about Michael.  But not this time....

I should start with a tidbit of history.  Chase has something called Mild Pectus Excavatum.  In layman's terms....  it means that the right side of his chest is caved in.  We had it checked last back in 2007 at Brenner's and all was good.  It was mostly a cosmetic issue and as long as he didn't start having any pain or other symptoms it just needed monitored.  Year after year all has been well.

In February, Chase decided he wanted to run track at the small school he attends.  I took him for his sports physical and before we knew it we were sent for a stat chest xray because Chase told Dr. Gunn he had trouble breathing sometimes.  Xrays "seemed" ok, the only abnormality was he had a healing fractured clavicle on the left side that we didn't even know was there...  Odd.  But she said it wasn't hurting anything and signed off on track.

The very next day, a Friday, was his first track practice.  After he ran he was sitting in the grass and he suddenly couldn't breathe.  He texted me, then I got a phone call to come get him.  I raced over and got him and he was still having a lot of trouble.  So, we went straight to the urgent care up the road  Another round of chest xrays were done and the doctor there again said the chest xray itself looked fairly ok, but did say that he would benefit from being seen by someone who specialized in chest wall abnormalities.  Monday I took him back to Dr. Gunn who agreed.

One week later, March 11, we went to Phoenix Children's Hospital and met with Dr. Egan, a pediatric thoracic surgeon who specializes in Pectus Excavatum.  After a VERY thorough examination, Dr. Egan explained that Chase's 2+ inch growth spurt in the last year appears to have shifted his chest wall a bit, likely causing the fracture and potentially putting pressure on the right lung making it difficult to breathe.  He said it was time to consider surgery.

(You can see the bone broken off...  as well as another area that looks like a previous fracture)

The plan currently is to have all testing done to get a good picture of what his chest looks like inside.  He is scheduled for xrays of the ribs, CT scan of his entire chest and abdomen, MRI of his spine, echocardiogram and EKG, cardiac stress test, lung function test, and a series of 3 metal allergy tests (the surgery involves metal rods in his chest - ouch!!).  These are all being done during the month of April.  And, once all of these things are done and results are in they will have us bring Chase back to go over it all and put together a surgical plan of attack to correct it.

We are hoping they will agree to hold off on surgery until after school lets out May 22nd.  This surgery will require 4-6 days in the hospital and 6 weeks of NO activity for him....  good thing he likes his electronic games!  As much as we hate to ruin most of his summer, it is too hard for a high school kid to miss that much school and catch back up, especially at the end of the school year.

Honestly, Chase is handling everything like a champ and seems ready to just get this done.  Dr. Egan asked him how he felt about it all and Chase replied "I don't care what I look like...  I just want to do things I like again without collapsing".

Chase is going to miss a lot of school for all of these appointments, and then he's facing a painful surgery with a long recovery.  I'm sure it sounds like a broken record...  but we ask for prayers for Chase through it all.

I truly don't know what God has in store for us...  but I know His plans are WAY better than ours, and I believe that we will see His unfolding and our story of surviving the storms will encourage others!

Infusion Day

While we wait for UCLA,Michael's neurologist decided to try an IV infusion to break the cycle of headaches, atypical seizures, etc that he has now been in for more months than we can count.  The idea was to at least help him feel a little better and function a little better.  They ran a series of IV meds....   Zofran/Benadryl to be sure he didn't get sick, Decadron to reduce the inflammation in the brain, Depakote to help with the constant migraine type headache AND it's to help with any possible seizures we can't see, and a ton of fluids.  .  Unfortunately.... it didn't work and actually was feeling a bit worse after.  Not the result we wanted.  

After talking to the infusion nurse manager who is very familiar with Michael, we are all are in agreement that UCLA is the next step.  Unfortunately, we are still $1500 shy of being able to go and we are facing the decision to reschedule yet again.  Michael is feeling defeated and worn through it all and it kills me to watch him suffer and not enjoy things that we all take for granted. 

Please keep praying....  for Michael's health, for financial provision so that we don't have to reschedule, for us as his caregivers, and for the doctors that he sees.  Also, please continue to share this link for others to pray with us and if they feel led to help us get there.  

28 More Days till UCLA!

This week has been full of ups and downs.  The downs are just more of the same...  Michael feeling just weak, tired, etc. etc. etc.  I'll spare you those details and focus on the ups!

One of Michael's closest friends, Alan Jones, flew in to spend a few days with us.   Saturday, Alan and I were determined to get Michael to a Reds spring training game.  I'm happy to report we DID it!  Alan and I walked Michael through the crowd straight to his seat.  Anything Michael wanted we brought to him.  He was able to enjoy the entire game, even though Reds lost!   Poor guy was exhausted after the long walk back to the car, but it was great to see him out and enjoying something he loves! 

Sunday morning we let Michael sleep in while we all went to church.  Afterwards, we had friends over to visit and catch up with Alan too.  Alan manned the grill with Michael's supervision while we all chatted and enjoyed the perfect weather!    

Monday, Michael got some much needed rest in the afternoon while Alan took the kiddos out for the afternoon.  Monday evening we all were able to go out to dinner, then went to Paige's first softball game ever.  She was nervous, but ended up doing a great job and their team won 15 to 12!  Gracious I forgot how uncomfortable metal bleachers are to sit on for hours at a time!  LOL! 

28 more days until UCLA!  Still have a long way to go to get there.  Praying hard we don't have to reschedule again.  

Thank you for all of the love, messages, hugs, donations, and prayers!  

Weekly Update

I'm trying to do a better job of updating weekly....  
The last week we saw Michael's primary care doctor for 3 month follow up and labs and his then his neurologist on Monday,  Since last Tuesday, he has had a bit more trouble with balance, dizziness, headaches, and just feeling "funky".  He described it to Dr. Saperstein (neurologist) as "numb...  almost like a floating feeling".  They aren't really sure what's causing it.  The neurologist did a quick autonomic test yesterday morning in the office to rule out it being a flare of his dysautonomia, and sure enough that was not it.  I asked specifically if it could be related to CTE and they really can't tell us....  they just aren't familiar enough with the disease.  Just need the input from UCLA.

Michael has continued to not let it totally keep him down.  He went with me to the softball field Saturday to practice with Paige.  After about 10-15 minutes I sent him to the dugout while Chase and I continued to practice and Michael just coached all of us from the dugout.  It was good to get out of the house for a while!  Michael's family is coming the first week of April and that will certainly lift his spirits too!  

Michael's appointment at UCLA is in 4 weeks and we have a long way to go financially to get there.   Again, thank you all for loving us through this journey...  financially, messages, hugs, and prayer!  

Untitled.....

As many of you know, we are hoping to go to UCLA to participate in a clinical research study for Chronic Traumatic Encephalopathy (CTE). He was originally scheduled for early January, then this week, but again we were forced to reschedule for financial reasons. Currently, he is scheduled for April 13-15.

The plan is for Michael to meet with a neurologist to have an evaluation done at the UCLA Center for Brain Injuries to get a "baseline" of where he is so they can monitor him and note his changes over the coming months. When a clinical trial comes, he will be automatically included.

Michael has ALSO been approved to see Dr. Giza, one of the leading neurologists that put together the clinical evaluation tool for the UCLA Study on CTE that was done a year ago on the NFL football players. This is HUGE for him! It will give the doctors here direction on symptom management as well as give us a professional written evaluation to be used when we finally get the disability hearing we've been waiting on for months!!

We need your help to get there though! The cost associated in going to UCLA is high. The doctors at UCLA are all "out of network" through our insurance. Add to that the travel, lodging, time off work for me, etc. and it all adds up quickly! With Michael's disability STILL pending we are already struggling financially. While we wait, the medical expenses of frequent appointments, prescriptions, labwork, tests, hospitalizations, etc., along with regular household expenses just keep coming.

The fundraising page below was created over a year ago when he got sick again. It has been updated and renewed to help get him to UCLA. We humbly ask that you join us in prayer for financial provision, and that you consider helping by using the link.

We thank you from the bottom of our hearts for joining us in prayer and carrying us through this journey with all of your love, support, and prayers!!

Another Door Open!

We posted a few months back about Michael going to UCLA this spring to participate in a clinical research study for Chronic Traumatic Encephalopathy (CTE).  We are currently scheduled to travel there at the end of the month to meet with a neurologist to have an evaluation done to get a "baseline" of where he is so they can monitor him and note his changes.  The benefit of going is that when a clinical trial opens....  he will be automatically included.

Well another door has opened that we are considering.  We have been in contact with a team of neurologists, neurosurgeons, and  other doctors about a new clinic opening in Chicago this upcoming June.  The clinic's goal is to assess and treat patients who have brain injuries and suspected CTE (remember...  it can't be 100% diagnosed until after death).  They will also be conducting studies on brain injuries and the role they play in CTE, Alzheimers, and Parkinsons.

We haven't made any decisions yet on the Chicago trip....  but in talking to the team via email it appears that the benefit of going there is they will be running a clinic and be able to TREAT Michael....  not just have him participate in research.

The cost associated with going to Chicago is pretty high......   time of work for me, travel arrangements for all of us, plus the copays and deductibles associated with that kind of care.  If you feel led to help with the costs, the link below takes you to the fundraising page.

Our prayer requests right now revolve around all of that...

- PRAISE that he has these doors opening and that we are finally feeling like we are getting somewhere!!
- Prayer for financial provision to be able to MAKE these trips
- Prayer that Michael will be up to traveling on either trip and the toll on his body will be minimal
- Prayer for peace to accept whatever the outcome is of both of these trips

Michael's Story....

Michael's story starts back in high school....

Michael has had COUNTLESS concussions from middle school on up as a result of sports.  He was a ROUGH player....  and played it all:  basketball, football, track, golf, and baseball.  He has been taken off the court/field multiple times during his high school career and taken to the hospital for treatment of a concussion.  About half of the concussions he’s had he has lost consciousness and they all had effects that lasted several days before they resolved.  Finally, his junior year his family doctor said no more sports....  that was in 1989.    But that wasn't the end of his head injuries...

In 1994 he was working in a factory that made doors and a 50+ pound solid steel door fell off something above him landing on his head.  Again, he was taken unconscious to a hospital in Indiana where he was treated for a bad concussion and head injury.  After that, he went retail and did ok for while with a knock in the head here and there and maybe 1 or 2 concussions, but not as bad. 

But...  Another came in 2006.  He was the Projection Manager of a local movie theater in Winston Salem, NC and was working on a projector.  A 10,000 watt bulb was inside a metal encased box that it was housed in and exploded with Michael’s head less than an inch away from it.   He was unconscious, unresponsive, and unstable.  They worked on him for over 30 minutes before finally stabilizing him enough to transport him to to Wake Forest Baptist Medical Center where he was treated for a concussion and closed head injury.  He lost a good bit of the hearing in his left ear as a result of this one and the effects lasted quite a while. 

It was in 2011 that he really started noticing a decline in his health and cognition.  Finally, August 1, 2012, Michael had surgery for Chiari Malformation with Syringomyelia (basically brain was herniating out of the skull into the spinal cord and had created a backup of spinal fluid not only in the brain that couldn't get out, but in the spinal cord that couldn't flow) after suffering for months with headaches, dizzy spells, numbness, memory loss, loss of consciousness, and aphasia.  They thought this would fix it all...  Surgery was succesful and they thought the medical scare was over.  Soon after, the Lyons family followed God's call to move across the country to Arizona in the spring of 2013 to share their story of faith and help plant a church with some other families.  

July 28, 2013 things changed again.  Michael was admitted to St. Joe Hospital in Phoenix for 3 days after an acute onset of the "headache of his life".  Since then he has been in and out of Mayo Clinic having multiple MRIs, CTs, and tests.  Not a week goes by without at least 2 appointments!  Michael has now ALSO been officially diagnosed with Pseudotumor Cerebri, High Intracranial Pressure, Hydrocephalus, and Hyperadrenergic Autonomic Insufficiency; and most recently, suspected Chronic Traumatic Encephalopathy as a result of the countless head injuries he has suffered and the explosion he was in back in 2006.

Chronic Traumatic Encephalopathy is a progressive degenerative disease of the brain with no cure, and currently only symptomatic treatment.  Michael suffers with daily debilitating headaches caused by excess pressure on the brain because of the excess spinal fluid his body is producing.  He also suffers from , blurred vision, vision loss, tremors, difficulty with simple problem solving, inability to focus, difficulty with word finding, numbness in his hands and legs, poor hand coordination,irritability, atypical seizures, and poor balance among other issues.   Every day brings new challenges while doctors try to iron out how to best treat him without causing medication side effects or interactions.

Daily life for Michael has changed drastically!  The once workaholic man who loved spending time hiking the mountains with his family now has trouble with even the simplest of tasks like taking a shower.  Standing upright for more than 10 minutes causes his heartrate to climb and then it's followed by dizziness, blurred vision, and poor balance.  His seizures are coming more often, and are worse.  He had his first grand mal seizure in December of 2015.  Everything he does has to be planned in advance with plenty of time to take rest breaks to avoid a 911 call or hospitalziation.  

While health insurance covers a part of his medical costs, it does not cover it all and money is very tight.  Michael has been on unpaid medical leave since August of 2013.  He did not work in Arizona long enough to qualify for short term disability or paid any medical leave through his employer.  His first and second requests for SSDI disablity benefits were denied (which they were told is normal for the state of Arizona).  They are currently in the waiting game for a face to face hearing, but that process can take 12-18 months!   While they wait for financial assistance, the medical expenses of frequent appointments, tests, hospitalizations, etc. keep coming.  In addition to these already mounding medical bills,  the household expenses due to loss of income that they are facing day to day keep adding up making things quite difficult.

If you feel led to help with all of these mounding expenses, you can donate through this site.  Any funds received will be used to help Michael and his family with the travel costs and medical expenses for all appointments, copays, deductibles, other out of pocket medical expenses, day to day living expenses waiting on SSDI to be approved, and the debt incurred as a result of it all.  If you prefer to send a personal check or gift card, please click the "Contact the Organizer" button for an address to mail it to.

No matter the amount or gesture, it is all appreciated and blessed! 

Letter From an Anonymous Caregiver

I came across this today and it hit home in a BIG way!

Dear family and friends,

One of the classic problems for people with a serious brain injury and the people who take care of them is a shrinking support system. Once the immediate crisis is over, family and friends slowly disappear. There are many reasons why extended family members don’t help. They have families of their own to care for. They can’t miss work. They live far away. They no longer connect with the survivor — his impairments discomfort them. Or, they simply can’t be bothered to interrupt their busy lives.

When the person with the brain injury is high-functioning, like Michael, the extended family may see no need for help. He’s out of medical treatment. He walks, talks, and looks “normal.” Therefore, his recovery must be complete. So, why do you need help caring for him? This line of thinking often leads to the oft-used excuse for not helping, “You’re pampering him. Let him stand on his own two feet.  He doesn’t need help. He’s just lazy and irresponsible.”

Before giving up on the family, caregivers should try to educate their relatives about brain injury, in general, and about their loved one’s specific impairments. For many observers, a brain injury truly is invisible. They fail to see the full spectrum of physical, cognitive, emotional, behavioral, social, and/or communication symptoms that people with TBI and their caregivers deal with every day. It’s likely that only the principal caregiver recognizes that their loved one works diligently to appear “normal” to others. Only the caregiver sees him at his worst, at his most vulnerable. Consequently, those who don’t interact with the survivor often may honestly see no need for help.

The extended family may also not understand how much time and energy caregivers spend helping people who live with a brain injury. They may not see how much people with TBI depend on their caregivers. They may not see the sacrifices caregivers make to help their loved ones enjoy better lives.

For caregivers this is no time to be proud. It’s a time for a frank discussion about why we need help, why I cannot care for him by myself, and how you can help.

Research shows that being the primary caregiver for someone who lives with a serious brain injury is debilitating to that person’s health. Prolonged stress, fatigue, and neglect of your own interests and well-being, year after year, can wreak havoc on your physical and mental health. To remain healthy, every caregiver needs some respite from his caregiving responsibilities. A tired caregiver is a poor caregiver.

Since our moves from Arizona to North Carolina it’s been very difficult. Local friends help with small things, at times, but we really don’t know anyone well enough in our new community to ask for help with the big things. Frankly, I just haven’t had the time or energy to make too many new friends.

Michael recognizes my pain and exhaustion.  When I hurt, he hurts more. When I’m tired, he is more tired. Sometimes we talk about this. Sometimes, when I’m particularly upset, we fight about it. But, it’s not going to change.

I’m easily upset these days. I lose patience over the little things: trying to get out of the house on time, his not listening, his forgetfulness, and the fact that he is easily distracted when I'm trying to have a serious conversation with him.

Our life is only going to become more difficult as we age. Michael is a prime candidate for dementia and/or Alzheimer’s. He has been having balance difficulties lately and has nearly fallen a few times. There’s mounting evidence that brain injuries are accompanied by a variety of other medical problems and should be treated as a chronic condition with new symptoms appearing as survivors age.

Michael has become a different person because of his brain injury. He’s not the man I fell in love with, but I still love him dearly and more every day.  You’ve all spent some time with him and have seen some of his impairments. But you’ve never seen the full extent of his disability. You’ve never seen him explode with anger. You’ve never seen him get easily frustrated with the simplest of tasks.  You’ve never seen the purse exhaustion after even just a shower. 

From a distance, our life probably doesn’t seem that difficult to you. He doesn’t work.  He has all this free time. What’s the problem? Well, there’s a reason he can’t work. Believe me, there are few things as frustrating as having time, but not the energy nor the freedom from pain to use that time in an enjoyable or productive way.

Over the years, when asked by others for help, we’ve always responded favorably, with our time, our money, and/or just helping out. At times, when we’ve seen a need, we offered assistance without being asked. For the past year, I’ve hoped that at least one of you would call and offer to visit for a week.  Run a few of the errands so that I be home at a normal hour.  Take the kids for a weekend so the house is just quiet.  Send a gift card for a day at the spa so I can just be pampered for a day.  Have dinner delivered, even from across the miles. 

Thank you for listening, caring, and helping!

(adapted from a message written by an ‘anonymous caregiver’ to Brainline.org)

To learn more about Michael or to donate funds for medical expenses, click HERE for the Loving the Lyons Family YouCaring site.  

https://www.youcaring.com/medical-fundraiser/loving-the-lyons-family/304952

Entering the World of Clinical Studies....

It's been a lot of ups and downs over the last few months and I apologize for not updating more often. We have honestly just needed some time to process some things and tell family what we know and let it sink in them too.  But, it's time we update those of you who have walked this path with us.

So.....  here goes it....

Michael has been accepted into a clinical research study at the UCLA Center for Brain Injury and Disease for  Chronic Traumatic Encephalopathy (CTE).

So what is Chronic Traumatic Encephalopathy?  You may not realize it, but you've probably heard of it.  It's otherwise known as the "NFL Football Players Disease".  It is a progressive degenerative disease of the brain that has no cure and no treatment.  There are 4 "suspected" stages and the progression of it affects both the mind, and the body as it moves from stage to stage.  It affects cognitive function initially, but quickly moves into behaviors.  Things like memory, word finding, mood, temperment, staying on task, etc.  As it progresses, those things continue to decline, but the physical symptoms, like balance deficits, start to begin.  There isn't too much known about it, but there is a lot of research being done to help with diagnosing it and hopefully treating it, or slowing the progression and that's where this study comes in.

CTE is something that has came up a few times over the last year.  While a few of the doctors early on brushed it aside pretty quickly because he clearly had the Chiari Malformation and Spinal Pressure Issues, Michael has kept it tucked in his mind fearful that it is what he was facing and recently admitted he has thought it's what he has been dealing with for a few years now.  At an appointment with the neurosurgeon about 4 weeks ago it came up again, only this time the conversation quickly turned serious.  Dr. Wilson had Michael go back to the very beginning of his head injuries - pre surgery - pre migraines.  All the way back to the 7th grade when he had his first head injury, the 20+ documented concussions since then, the closed head injury in 1995 when an 80+ pound door fell on his head while working in Indiana, and then the explosion at the movie theater he was in back in 2006.  Add to that he had brain surgery....  while controlled.... it's more trauma to the brain.  He said (what we all were thinking) it just didn't make sense why nothing has worked to help him.  Dr. Wilson told us with the symptoms Michael has, the decline he's had physically and cognitively over the last year, and the images he's seen....  it can't be ignored and should be looked into further.  Shortly after that his records were sent to one of the only 2 universities studying the disease.  Not even 48 hours after they were sent we were contacted by UCLA notifying us that he was accepted into their clinical research study.

This Clinical Research Study is just that....  it's research at this point and is not a clinical treatment trial.  We will travel to California the first week of January to get this ball rolling.  Michael will see one of the neurologists, who works closely with the director for the study.  This is when we hope to learn more about how this all works as well as ask our hundreds of questions about CTE (there really isn't much out there on it!  Trust me...  we've looked!)  They will connect him with a neurologist here in Phoenix that that they will consult with after that so we won't have to go back and forth to LA too often.  The neurologist here will track his progress (or decline) and report it to UCLA.  The benefit of participation is that when (and I prefer to say WHEN, not if) a clinical treatment trial starts, he will be automatically included in it.

Michael (and I) have prayed all along to just KNOW what was wrong.  At one point he even said to a doctor "I don't even care at this point if it's a brain tumor....  I just want to KNOW!".  As scary and uncertain as CTE is and with the grim outlook it has down the road, we really are THANKFUL to know what the ugly beast is.  Sure....  it's been a bit of a tough pill to swallow.  It's been hard to let it really sink in that he may never be the way he was 5 years ago or have the energy/ability to hike through the Monongahela Forests again.  Or come to terms with grasping 5 years from now may look even worse than where we are today.  But at least we know what it is and don't have to listen to any more doctors tell him there's nothing wrong....  or worse yet tell him he just needs to see a shrink (yes....  this really happened!).  So....  we choose to be thankful!

This leads us to the prayer requests....

- That there would be a clinical treatment trial implemented soon and it would move quickly to a full treatment for ANYONE who suffers with CTE!
- That Michael would just have the strength and energy to enjoy each and every day through the holiday season!
- That we would be able to get to California without financial worry and stress of travel expenses!
- That our kids just remain innocent and happy through Michael's struggles and not be worried about what tomorrow will look like!
- That on the hardest of days, we would continue to be thankful and have faith that this is all part of God's plan for Michael's life.
- That we would be able to stay firm in our faith and not waiver!
- And that in the end, Michael would be fully healed and restored with ALL of the glory going to God!

Again, we continue to thank you all for your love, support, and prayers along this journey!

"Now to HIM who is able to do IMMEASURABLY more than all we ask or imagine, according to HIS power that is at work within us, to HIM be the glory in the church and in Christ Jesus throughout all generations, for ever and ever!  Amen." - Ephesians 3:20-21 (NIV)

Something on My Heart....

Looking back to fall of 2012 when Riverview Church was still a small group of core team members, we would meet weekly and make plans for the how and when we were to get here, to Arizona.  Each week we would go through prayer requests and they always included things we "needed settled" before we were able to move here.  Jobs to finish up, houses to sell, school years to finish, people to say goodbye to, find a job here, etc.  I remember thinking one night that those are earthly things and sure, they are important, but are we following God's call for our lives if we wait to check off the "must be done before we can move" boxes on a list?  Some might say that if it truly is God's plan for our lives that the house would sell, a job would fall in our laps, etc.  But what if that's not the case and what if that's NOT how God wanted us to follow him?

Matthew 4:19 we are told "Come, follow me," Jesus said, "and I will make you fishers of men.".  Proverbs 3:6 goes a little further saying "in ALL your ways acknowledge Him, and He will make your paths straight".  Doesn't this demand a boldness in faith on our part when you are called?  To take a step, even with uncertainty, showing him that you are willing to follow His lead so He can use you for His kingdom?  Maybe that boldness in faith is moving before the house is sold.  Maybe it's leaving friends and family behind even when you think you need them the most.  I believe that when we do, in bold faith follow Him everything else will fall in place.

The other piece of the whole moving here process that I think about a lot is really, what choice do we have other than to follow Him in faith when He calls?  Aren't we warned in Matthew 7:21 "Not everyone who says to me, Lord, Lord" will enter the kingdom of heaven, but only the one who does the will of my Father who is in Heaven?".  I don't want to be facing him at the gates of Heaven and hear "I asked you to follow me, to serve others, to share my Word and to trust in My ways....  but you did it your way....  you didn't do it in faith...."....  you get the idea.

I think about the Hobeck's story.  I don't want to share their entire story of joining our team (it's their story to share), but just a few things about it.  Jim and Jenni truly felt that God's plan was for them to be here...  this became clear to them after FIGHTING it for months!  After finally realizing that it was God's plan for them, they, like others in our group, started making that checklist of things that had to happen before they could come....  house to bed sold, job to be found, school year to end, find new house.  After praying over it for several weeks they suddenly realized that were doing things THEIR way and not God's way and that might be part of the problem.  That is when their boldness and pure faith started....  Jen flew out here to Arizona in the spring and ended up signing papers to buy a house before theirs was sold in North Carolina...  before Jim found a job and ended up moving here before they closed on their house in North Carolina.  Talk about risky!  Was it risk though?  Or demonstrating boldness in faith?  They held on to faith through it all and that faith proved true!  Not only did their house sell in North Carolina, Jim finally found a job (after being here a month) and got his first paycheck on the very day that was the deadline the bank gave in order for the builder to finish their new house here!  It was so cool to see it all unfold and for their family to be blessed for their faithfulness!

Like I said in the beginning, we still have friends back in North Carolina who are part of our team and not here yet.  There are also a few families who God has truly put on my heart and I feel they are part of our team and just don't know it or haven't acknowledged it.  There are also a few families who were part of our team who have decided not to come at all for various reasons.  I pray every day for them all...  that if it truly is God's calling on their lives that they would feel convicted to just act on faith and be bold. That they wouldn't wait for the job to be found or the house to be sold.  That they wouldn't stay their because they can't leave their family for one reason or another.

Every day those North Carolina families aren't here, or every day that you aren't acting on whatever God is putting on your heart to do to follow and serve Him, someone is missing out on seeing God's love through you and YOU are missing on on seeing God's kingdom grow!

Be bold.
Act in faith.
Be blessed.
And watch God's kingdom grow!