We're “Going” to the Movies!

I love movies! When I was younger I really wanted to be an actress and even had opportunities to be an extra in movies being filmed in our city.  It was such fun watching the process, being involved in the process, the multiple takes, the energy of the production and just everything about it. 

Watching a really good movie is just as exciting and if I had my druthers, I would stick around to the very last credit just to honor every single person who worked on the movie.  (Staying to the end is always dependent on how many people are trying to climb past me to get out, who I am seeing the movie with and whether it was a long movie and I have to use the restroom.)

It’s complicated.

Replicas of Academy Award statuette in a gift store
in Hollywood (Photo credit: Wikipedia)

My dad loved going to the movies too. Seeing a movie together was usually the most enjoyable times we had together.  I didn’t have to muster up patience to listen to his conspiracy theories or about his latest escapades that involved choices he was making in his life (most of which I didn’t agree with).  We could watch a movie together and then talk about the impact it had on us and what we liked and didn’t like about the movie.  We mostly enjoyed the same type of movies: action or thought-provoking or inspiring.  I cannot watch horror or gory movies so we avoided those. 

We liked movies so much we both decided we wanted to see every Academy Award winning Best Picture movie.  Dad saw a lot of movies but we didn’t even come close to polishing off the list of 85 movies (those who know me have no doubt in their minds that I have a spreadsheet listing these movies). 

Seeing all of the Best Picture winners is still on my Bucket List but so is seeing other movies that are meaningful, powerful or just pure escapism.  I’m not really a movie snob but I do have one rule:

BE QUIET!  Please don’t talk during a movie (whether at home or in the theater – even during previews)!

Now that Robert lives with us it is a little more difficult to go out to the movies.  Robert has mobility issues plus he doesn’t usually have much warning when he needs to use the restroom. It makes being able to watch a movie without interruption a little challenging.

Richard and I have decided to watch movies at home (we’re on a documentary kick right now) and I hope to check off a few more Best Picture movies from my list.  I also want to watch a movie or two with Robert if I can ever tear him away from Jeopardy or his new favorite show, Family Feud (admittedly, that show is addicting for some reason).

Caregivers and their carees need entertainment and many times it needs to be cheap! It’s not easy to take a family to the movie theater with the expense of tickets, popcorn and drinks.  I sneak in water or soda (shh! Don’t tell!) but I’ve yet to try sneaking in popcorn.

Watching movies on DVD or through Netflix is a great option for caregivers and their carees.  It’s home-based, the snacks are cheaper and mobility problems are no longer a consideration.  Since availability of family restrooms is always a consideration of mine, the bathroom at home is close, available and the movie can be paused if needed!

I think it would be fun to review movies that caregivers can watch at home with (or without) their caree for either free or fairly cheap as well as the occasional first release movies in the theater.

Watch this space (or www.caregiving.com) for the occasional movie review!  I’m not a professional reviewer but I do love the movies and will give a “regular person” review of the movies. 

I look forward to “going” to the movies with all of you!

Jeff Klauk: Golf, Epilepsy, Advocacy and Family

Jeff Klauk is a professional golfer, dad, husband, son and brother.

He also has epilepsy and is an advocate for epilepsy awareness and has taken The Pledge to Go Beyond Okay.  On this website, I watched a clip of his wife talking about being his caregiver and describing Jeff’s seizures.  She describes Jeff chuckling at the onset of his Partial Onset Seizures which immediately endeared this family to me as Robert will oftentimes chuckle when he is coming out of his seizures.   

In order to get the word out about this initiative, he and Dr.Selim Bendadis (who is the Professor and Director of the Comprehensive Epilepsy Program at University of South Florida and Tampa General Hospital) sat for hours doing interviews about The Pledge and life with epilepsy.  

Hours of interviews and I was fortunate enough to be one of the interviewers!  The format was very simple: I had ten minutes to ask one or both of them whatever questions I could come up with.  They would be filmed and my voice would be heard asking the questions.  This immediately set my mind at ease – no need to buy new Spanx!

The first order of business was to refresh my knowledge of golf.  Okay, there wasn't much knowledge to refresh – I had to basically start from scratch.

Clubs. Eighteen holes. Patience. PGA tour card. 

Got it.

I next concentrated on what to ask both of them (I couldn’t just ask one of them questions and have the other sitting there - Miss Manners would have my head!)  It took me several days to figure out what I wanted to know from Jeff and Dr. Bendadis but soon realized I wanted to tailor my questions to what I am passionate about: family and advocacy.  

It didn’t take long into the ten eleven minutes to realize how passionate Jeff is about his family and epilepsy advocacy too.  Jeff shared what he would like his kids to learn about epilepsy: be persistent and never give up.

Dr. Bendadis shared what he sees as the future of epilepsy treatment and research.

I should note that while Jeff is following one treatment plan that has successfully worked for him, he is the first to point out that no one treatment plan works for everyone.  Jeff reminds us that epilepsy has no cure but it’s important to never give up in our search for it.

It was an honor to talk with both of them and I thank both of them from the bottom of my heart for their time, passion and advocacy.

Thankfully, they didn't ask me any questions about golf . . .

What Seven Minutes Means to Me

Seven minutes is not a lot of time to do anything. 

Heck, 10 to 20 seconds isn’t any time at all to get anything on my to-do list accomplished but it is long enough for Robert to have his typical seizure.

Robert's helmet has taken a few good knocks

Head down and to the right.

Tugging on his clothes.

Hands twitching.

Giggling as he awakens.

If he is standing and has a seizure and there is no one behind him, he falls backwards to the floor (or against a wall or onto the toilet). Looking at the many scrapes on his helmet tells me that is the best piece of medical equipment he could have.

Robert doesn’t know when he has a seizure and will usually argue with me if I tell him he had one.  I stopped telling him unless he asks or he lands on the floor (he has had enough seizures in his life to realize if he wakes up on the floor, he had a seizure).

The typical seizure for Robert doesn’t involve convulsing and doesn’t usually last very long.  A couple of years ago and with his permission, I filmed one of his seizures to give people an idea of what they look like since his aren’t like they are portrayed in the movies.

Robert’s seizures are uncontrolled and I’ve always estimated he had probably five seizures in a week. It was really difficult to gauge because New Home never kept track like they were supposed to and would give me seizure logs showing maybe three seizures a month if I got a log at all.  I knew he was having more than that because he had them almost daily when he was with us on the weekends.

Now that he lives with us, I have been able to keep better track of his seizures.  It’s difficult to know if he is having more than normal because they weren’t always noted before he lived with us.  Either Richard or I are always with Robert and even if we aren’t, we are watching him on a video monitor.  I’m fairly confident we are aware of most of his seizures (although, at ten seconds a shot, it is easy to think we miss a few here and there). 

Since moving in with us, we have recorded Robert having at least two seizures every day.  Sometimes more than that but rarely lasting a minute or longer.  There’s a seizure in the morning while he is getting cleaned up for the day which I can prepare for (he’s standing when it happens so I’m prepared to catch him).  So far, that’s the only one that is predictable but I feel lucky there’s any consistency at all since one of the biggest problems with seizures is how they strike without warning. Sure, there are triggers which people can figure out but it’s never consistent (at least we haven’t found them to be).

Three to four minute seizures are really at the extreme of his “typical” range.  A few years ago, Robert had a cluster of long seizures just after moving into New Home. As it turned out, it was because Nurse Ratchet had arbitrarily decided to change his medication schedule to fit better with her own schedule.

I was about as happy about that as you might imagine.  

These blocks of time seem so tiny when thinking about any activity other than a seizure.

Ten seconds?  Who even thinks about ten seconds passing by?

Unless you’re counting or watching the stop watch, waiting for the seizure to pass.

Three minutes?  My husband can load and unload a dishwasher in that amount of time.  I can put a load of clothes in the dryer and a new one in the washer.  Crazy Puppy can eat his meal and our other dog’s meal in that amount of time. 

It can also be a very long wait for the seizure to pass.

Seven minutes?  I can get a lot done in seven minutes – make Robert’s bed in the evening and get started on play time with the dogs.  Robert can eat his bowl of Rocky Road ice cream in seven minutes. 

Robert had a seven minute seizure this week and it was extremely unsettling.  The stop watch kept ticking away the seconds, then minutes while his head bent down and to the right at the dinner table.  His hands twitched and he started smacking his lips.  At the ten second mark, I expected him to come out of it and begin to eat dinner.  Twenty seconds passed and I stood by him, watching. One minute went by and Richard stood on the other side of him in case he fell off his chair.

Robert continued to look to the right with his eyes closed, smacking his lips and twitching his hands.

Two minutes. Three minutes. Three and a half minutes.

The wait was excruciating.

At five minutes, I gave him an Ativan which we have on hand for just such a scenario.  It wasn’t easy since it is in a pill format but somehow, he swallowed it.

Two minutes later, he started to come out of the seizure.  After a few more minutes, he knew who I was and who Richard was but didn’t know where he was.

Several more minutes later, he was eating his dinner and declaring the meal excellent.

He was pretty groggy and sleepy the rest of the night but once he was in bed, I again asked how he was feeling and, of course, he answered, “Excellent.”

Seven minutes of a seizure was extremely scary and unnerving for me and my husband.  Seven minutes seemed to last forever for us. 

For Robert?

Seven minutes was not near long enough to take the excellent out of Robert.

Robert’s Bucket List

Richard started sharing his Bucket List on Caregiving.com (he actually calls it his 55 Gallon Drum List because, well, just because my husband is goofy sometimes).  It’s fun to read about his dreams and to see if there is any wish I didn't know about (there is!).

Photo Credit: Matt Stevens
(who can now cross this off his own bucket list)

Richard’s list includes:

1. Learn to scuba dive;

2. Fly a glider; (I didn't know about this one)

3. Visit Paris;

4. See Stonehenge;

5. Learn to brew beer;

Richard's list got me thinking about my own wish list of places I want to go and things I want to do in this lifetime:

1. Go to Paris;

2. See the Mayan ruins;

3. Go on a cruise to Alaska;

4. Watch every movie that has won the Best Picture Academy Award;

5. Read all the books that I have on my living room bookshelves;

We were talking about this when returning from what is now our tradition of dinner out on Friday nights and Richard asked Robert what was on his bucket list.  Robert didn’t know what the heck Richard was talking about so Richard explained: What are some things you have always wanted to do? 

The simplicity of Robert’s answers should not have surprised me.

1. Watch Jeopardy;

2. Do Word Search puzzles;

3. Go bowling;

4. Go to France;

Robert jokes about going to France so I love that it is on his bucket list.  He also jokes about drinking whiskey and going to New York so I suspect those will show up on his list the next time we ask him. 

What’s on your 55 Gallon Drum list?