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!