We Will Get to Disneyland!

Thank goodness for lifelines.

It’s been a challenging couple of weeks. Yes, I’m up for a challenge and usually have a positive attitude about things and know that I can overcome pretty much anything thrown at me but let’s get real:

The last few weeks sucked!

Robert being his excellently great self

Richard had a procedure on his back (a steroid shot into several of his lower back facet joints). Then a few days later he had to have a procedure on his lower leg veins (clipping off another valve that would randomly become a geyser). Robert started to get a cold during all this and was lethargic, congested and ran a low-grade temp which then triggered a seizure cluster. He seemed to recover for a few days then the same thing hit again, only worse.

Of course, when things like this happen all kinds of crap happens too. It’s like all the bad energy conspires to have a party. Hey! Look! They’re having a bad couple of weeks! Let’s join in the fun!

Robert’s routine dental cleaning became anything but. He has a problem with his gums so the dentist recommended a skin graft (yikes!). What are my options? A tooth extraction instead. Okay, I choose door number 2!  We scheduled it for a few days later but had to postpone it until after our trip since Robert came down with the respiratory infection.

Oh, and I practically choked on a piece of metal in a take-out salad; I banged my ankle into Robert’s wheelchair while walking through the house in the dark; we are now into the busy time at work . . . oh, you get the idea.

I am not telling you all this so you feel sorry for us but because I am sure you know what it feels like to have a pile of crap happen all at once.

You are not alone. Know that we can commiserate in our big ole crap piles together.

Next week we are going to Disneyland for Epilepsy Awareness Day at Disneyland. It has become an annual event for Richard, Robert and I and surgeries, respiratory illnesses, bad gums nor nearly breaking my ankle will stop us from going again this year.

Everyone is going to be healthy even if I have to will it to happen myself!

Robert seemed better for a few days once we started him on antibiotics but now the congestion is back in full force. His last dose of the antibiotics will be on Saturday and we leave the following Tuesday. We are pulling out all the stops to get him cleared out:

1. Hot Sprite;
2.  Hot chicken & noodle soup;
3.  Humidifier (with eucalyptus oil);
4.  Vick’s Vapo-rub;
5. Acapella vibratory therapy;
6.  Lots of fluids;

Robert had been going to Day Program once he felt better but we decided to keep him home today. Richard was the smart one to suggest it. I am so busy willing Robert to get better that I was pushing him to stick to his routine. (Yeah, even after he threw up last night a few times from so much congestion and, obviously, didn’t get enough sleep).

YOU WILL GET BETTER! (Hey, Jedi mind tricks do work sometimes.)

Thankfully, I have a husband with a bit more common sense than I do. We also have our Wonder Woman pulmonary nurse practitioner, Lana, who has been my lifeline while Robert is sick. I suspect she will hear from me again today or tomorrow. I am so grateful for her too!

Robert may be sick but he was very surprised when Richard told him he would stay home from program today. “Oh?” he says in his most surprised voice. Robert doesn’t even realize he is sick because, of course, he feels “excellently great!” (That’s his new, expanded version of “excellent.”)

Okay, Robert. Let’s keep being excellently great for at least ten more days!  We are going to Disneyland and going to have an excellent time!

We may need a little help from our friends so if you wouldn’t mind sending Robert some excellently great, healthy mojo we would all appreciate it!

Epilepsy Awareness Month 2015: A Sea of Advocacy

Our recent trip to the Epilepsy Awareness Day at Disneyland brought us face to face with many wonderful and inspiring advocates – all full of life, laughter, education and a passion for managing and curing epilepsy!

Epilepsy Awareness Day at Disneyland not only is a way for families affected by epilepsy to connect with others while being at the Happiest Place on Earth, it is also an educational opportunity.  EADDL was started three years ago by Brad Levy and his wife, Candy, along with the enthusiastic support of pediatric neurologist, Dr. Diane Stein. These three are tireless advocates not just for great epilepsy care but for a cure for epilepsy.

Dr. Diane Stein and Robert

While I did not have an opportunity to meet the Levy family (next year for sure!), I did meet Dr. Stein as did Robert. They became fast friends and we promised to participate in the International Epilepsy Day which is February 8, 2016. 

Fact: There are approximately 65 million people world-wide living with epilepsy (Epilepsy.org). 65 million people affected by epilepsy – not even counting families, friends and caregivers!

There were so many advocates at EADDL!

Julie Hutchison and
Robert in a  Mickey Mouse nose

Seeing Julie Hutchison, founder of the Chelsea Hutchison Foundation, is a delight for me (and obviously Robert). Julie’s foundation is a founding partner of the EADDL and has raised money to bring several families to the event each year. Also, through their advocacy, CHF recently gave their 84^th grant for a seizure response dog! Julie’s story is one of resilience yet is heartbreaking. Julie and her husband, Doug’s beautiful daughter Chelsea died from SUDEP.  They walk through that unfathomable grief to help others. Julie shared with me during one of our chats, “It is the reason I get up in the morning.” That kind of advocacy is an inspiration.

Julie is an inspiration.

Fact: Epilepsy is also a disease that can be deadly.  According to CURE Epilepsy, “It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents." 50,000! This number stuns me every time I read it.

The EADDL Educational Expo brought a day of speakers and a large conference room of advocates and exhibitors. The Expo was full of a wide variety of organizations sharing information (medical professionals, dietary experts, medical technology companies, service dog companies and many, many others. You can see the complete list here.) 

EADDL 2015: Expo Room

Another EADDL founding partner, the Danny Did Foundation, was at the Expo. CURE Epilepsy was there. The Purple Peace Foundation was there. Livy’s Hope, Sophie’s Journey, International League Against Epilepsy all were there.

EADDL 2015: Expo Room

Families visited each booth soaking up the information so they can be the best advocate they can. 

Fact: While two-thirds of people with epilepsy are able to find good seizure control, the fact is one-third do not (Epilepsy.com).  That is one-third too many!

Many advocates and organizations were borne out of the loss of someone to epilepsy or have been affected by epilepsy in some way and are advocating for the cure or management of epilepsy.

All an inspiration. All doing something to manage or cure epilepsy.

The day in Disneyland did not have had exhibitor booths but there were probably a couple of thousand families enjoying the park in their EADDL purple shirts. Each one of them an advocate in their own way for their friend or loved one with epilepsy.

Watch out, Epilepsy! You cannot win against this much advocacy.  

EADDL 2015: A Sea of Advocacy

Epilepsy Awareness Month Day 7: Everyone Loves a Parade

Robert graduated high school while being in the mainstream classes.

Enjoying the kid in all of us

Robert even took a few Community College courses in psychology (although, he will tell you he has a BA in psychology).

Robert lived on his own for many years and then with a woman who also had epilepsy for many more years. They lived as husband and wife and went to doctor’s appointments together, the grocery store together and regularly attended church and many prayer groups. 

Robert’s cognition and mobility weren’t always impaired.  In fact, when I took over his care six years ago (Wow! Has it been that long?), Robert was walking on his own. No walker, no wheelchair – nothing to assist him.

At the time I took over his care, his medical records indicated he was “slightly mentally retarded.”

I became unglued when I read this statement in his chart as not only was I offended by the terminology offended but I disagreed with the assumption.

Robert was slow to respond to questions.  He was a little foggy headed due to his medications but he was not cognitively impaired.

Over the last few years, I have come to the realization that Robert does have a cognitive impairment.  He wasn’t always like this but his decline due to the seizures and medications and surgeries and the numerous concussions has affected not only his mobility but his cognition. 

I guess I have always known this because, ever since I can remember, I have thought of the book, Flowers for Algernon when thinking of Robert and his life. That book affected me deeply when I was a young girl and I remember feeling so hopeful when the experiment worked to increase Charlie’s intelligence and was so devastated when the experiment ultimately failed and we saw the effects on Charlie.  

I remember Robert when he was just like any other boy. I remember him as active and verbal and mobile and accident prone (an example: he somehow stuck a fork in his eye!).

I remember Robert as a young man who lived with our dad for a time after our parent’s divorce.  Robert still talks about how he stopped Dad from having a nervous breakdown (he didn’t actually, but was there when our Dad had a psychotic break and he ended up on a 3-day hold in the mental ward of our local hospital.)

I remember Robert visiting for holidays and birthdays and remembering to take his medication when he kept in his left shirt pocket. 

A pocket now reserved for two black pens and his glasses case.

I remember many negative aspects of Robert growing up (effects of various medications and life circumstances) but mostly remember his laughter and his impish grin.

Oh and his ability to get into the most unusual situations! (Stuck in a mud pit or letting a frog loose in the car during a family vacation to name just a couple.)

Now that I think about it, Robert has always tried to squeeze whatever he could out of life and this vacation has been no different. 

It has been a delight watching Robert’s childlike enthusiasm for the parades and the rides.

I am still having some technical difficulties with new videos but this is a short one that I took during one of the parades. Robert managed to get many of the characters to wave at him.

It must be his infectious smile!

Epilepsy Awareness Month Day 3: The Decision to Call 911

Robert’s seizures do not scare me.  He has had seizures for as long as I remember having my second little brother.  The only reason he needed to be taken to the hospital due to a seizure was because of what happened during the seizure: falls, concussions, broken jaw, a burned arm, near drowning.

Of course, Robert told everyone he was
"excellent."

I had to pick him up from school a few times when he had a seizure (resulting in a loss of bladder control) and mom was at work. I picked him up and drove him home.

Let me rephrase: Robert’s “normal” seizures do not scare me. 

It’s the out of the ordinary ones who give me a run for my money. 

The seizures that last three or four minutes – watching the clock in case he doesn’t come out of it at the five minute mark.

Those scare me.

A cluster of seizures with falls involved.  He had numerous seizures last February – complete with falls and his legs bent every which way. I thought for sure he was going to break something during that turbulent month.

That scared me.

A cluster of seizures that do not stop.  Robert typically has cluster seizures involving five or six seizures but I am able to give him 1 mg of Ativan between them and they stop. 

Sunday they did not stop.  Twelve seizures before I was even able to safely give him an Ativan. Then several more while I waited for it to do its work.  When the seizures didn’t slow, I gave him another Ativan.

That scared me too. 

Richard and I waited.  I called the on-call neurologist (because, of course, this couldn’t happen during office hours)!  He advised I take Robert to the emergency room. 

I didn’t want to.  I really don’t like taking Robert to the hospital because I know the decline that happens afterwards.  I know what a mess the ER is (great staff but it is a trauma hospital so it is very chaotic).

Here’s my confession of the day:

I really didn’t want to call the paramedics this time because we have a trip to Disneyland planned (for Epilepsy Awareness Day at Disneyland) and our flight leaves on Tuesday.

I am determined to take Robert to Disneyland, gosh darn it! I am willing the Universe to make this happen!  Robert is very excited about the trip (as are Richard and I) and I am not going to let anything stand in the way of going. 

That might sound irresponsible but I know how hospital visits go.  I did not want Robert admitted and didn’t want him to have any sort of decline/

By the time I called the paramedics, I had lost track of the number of seizures but estimated approximately 25 – 30 in a two hour span. 

That’s as many as he has in a month.

So, yes, I called the paramedics. 

BUT, UNIVERSE, WE ARE STILL GOING TO DISNEYLAND!!

Robert had another seizure while the paramedics were at our house and one at the hospital that I witnessed, once I was with him again.

That was at 1:00 p.m.  Robert finally saw a doctor and had blood drawn and a chest x-ray to check for an infection.  Nothing came back and I insisted it was okay to discharge us.  I promised to contact his neurologist the next day. 

Robert was discharged and I put him into the car around 8:00 p.m.

He proceeded to have three seizures on the way home and two once home.  I gave him another Ativan, got him ready for bed and watched him on the video monitor for quite a while. 

The neurologist’s office opens in a couple of hours and I will call them to see what they say about all of this. 

For today’s Epilepsy Awareness Month video, I am posting the video I took of Robert while he was having several of his seizures.  I actually was trying to capture one for the doctors but since he continued to have a cluster of them, there are several on the video.

I know on Day 1 I promised short videos.  This one is long and I haven’t had a chance to edit it.  Skip through anything that doesn’t interest you. 

(And, yes, I will post video of us in Disneyland – because WE ARE GOING!)

Disabled or Not: Disneyland is the Happiest Place on Earth!

I am going to admit something right off:  I love Disneyland!  It’s not that I am a huge cartoon fan but I do love smiles and laughter and all things happy.  Oh my gosh!  And I love the parades and life-size characters and the music and going on It’s a Small World several dozen times –

Good grief!  Please stop me!  You can only imagine how annoying I am at Disneyland.  It’s so bad my husband, Richard, threatens to wear ear plugs while in It’s a Small World!


At the Happiest Place on Earth

Maybe I love it because I grew up in Nebraska and didn’t to Disneyland until I was in my twenties.

Maybe I’m enthralled with the persistence of Walt Disney and his brother, Roy, following a dream. 

Or maybe I’m just a sucker for a fantastic marketing campaign.

Whatever the case, I do love Disneyland.  I even went there two years ago with the kids (okay, I know they’re grown!) and my husband to celebrate my 50^th birthday.  (Oops, did I just give away my age?). 

I was fortunate enough to go again earlier this month.  The stars were aligned perfectly.  I had a legal administrator conference in Anaheim and, coincidentally, my mother-in-law turned 70 in May and was determined to visit Disneyland during Halloween as a present to herself.  Richard and his brothers decided to surprise her with an all-expense paid trip to the Happiest Place on Earth! 

An added bonus was the conference was held at the DISNEYLAND HOTEL (!) with room rates drastically reduced.  Richard and his mom, Carol, and I shared a room with a view of the “Neverland” swimming pool and Disneyland mere minutes away. 

Well, mere minutes for someone without mobility issues.  Richard and Carol both have mobility issues (Richard because of his chronic back pain and Carol due to her heart and knee issues) so our visit through Downtown Disney was more leisurely than most. 

We anticipated needing to rent a wheelchair but Richard also brought the transport chair with him just in case.  We had carefully planned our visit with mobility issues a huge consideration.  However, Carol refused to be pushed around in the transport chair or a wheelchair and instead insisted on renting a motor scooter.  I offered to push Richard in the transport chair but he preferred to walk and take breaks when his pain got too much. 

So much for planning!

Disneyland itself is well prepared to handle anyone with a disability.  It’s a Small World even has boats designed to let a motor scooter ride directly onto it so the person never has to leave their scooter yet can enjoy the attraction. 

Most rides and attractions have disabled access lines which means a shorter wait time which is a huge help to those who can’t stand for long periods of time.  The Disneyland website has a whole section dedicated to describing the services available to those with hearing, mobility or visual disabilities.  There is even information about service animals which are welcomed at Disneyland as well as a warning about lighting sensitivity in case of a seizure disorder. 

Yes!  Disneyland is sensitive to those with epilepsy!  (I'm not sure I could take Robert, though, since we'd have to fly and don't think he'd do well on a plane).

We were all excited to be in Disneyland and Carol was happy to have some independence on her scooter so she wasn’t a burden to anyone which was her fear.

The park does get crowded though (as you might imagine) and we quickly found out it is a little difficult to navigate a motor scooter through all the people.  It doesn’t help to have a first time driver (yes, Carol, I’m talking about you) who is so eager to take in all the sights that she becomes easily distracted by the constant stimuli surrounding her while still driving. 

We did our best to give Carol a wide berth all the while discreetly directing traffic in front of her, behind her and on all sides of her. 

When that wasn’t enough, we resorted to screaming “LOOK OUT” to anyone within earshot (or in danger of having their foot run over).    

Even with this extra bit of adventure, I would love to go to Disneyland again with her and I’m sure we’ll rent the scooter again.  After all, she needs to be able to see everything she can while not feeling like she’s slowing the rest of us down.  At Disneyland, they make that possible.

Next time we’re there, though, be sure to look out for a smiling lady wearing flashing mouse ears.  She’s at the Happiest Place on Earth and isn’t about to let a few people/strollers/toddlers/curbs wipe the smile off of her face. 

Don’t say I didn’t warn you!