Tuesday, December 27, 2011

Another Caregiving Hat

Hubby goes in tomorrow for surgery to replace his intrathecal pain pump.

It’s also my birthday (let the singing begin)!
Hubby has been in pain since I met him (although I try not to take it personally).  Mere weeks after hubby’s son was born, Hubby was traveling back to his baby from working out of town when he was rear-ended by a drunk driver (the person who hit him was driving on a suspended license and it was his 4th DUI). 

Hubby dealt with major injuries and spine pain and was on a lot of pain meds.  He was on quite a bit of pain medication but, over time, went off it and did his best to control the pain with over the counter pain medications because he didn’t like the stronger stuff. 
We met during this over-the-counter drug phase, we married, his pain increased (I tried not to take this personally). 

Hubby saw a pain specialist (and a chiropractor and an acupuncturist and massage therapists and whoever else might have been able to help relieve the pain).  The pain specialist said he had Degenerative Disk Disease caused from the accident.  The doctor tried all kinds of treatments (nerve blocks, stronger medications, physical therapy to name a few). 
Nothing brought him relief.  Hubby was debilitated by the pain and he could no longer work.  He was declared disabled, we took a financial nose-dive, hubby’s view of himself took a major nose-dive, depression enveloped his entire being. 

We had three kids under the age of nine, it was early in our marriage, our finances were a mess and hubby was in severe and chronic pain.
It was ugly.

Hubby tried all kinds of medications to bring him some relief from the relentless pain.  Some medications incapacitated him so completely, he was unable to drive or function as a father or husband (sheesh, he could barely get out of bed).
I should also mention his mood was, well, on the cranky side.   The kids and I all had to not take this personally.

The situation was unbearable for everyone and we had to come up with another solution.
The intrathecal pain pump gave us hope.  The pump promised less pain (never promising to rid Hubby of it completely but promising his life back) and it gave us hope that the strong narcotics hubby was on could be discontinued (or, at least, greatly reduced). 

Fentanyl is delivered from the pump through a catheter into the area in the lower spine causing the pain.  Because the medication is delivered directly into the spinal column, there are fewer side effects from the medication and Hubby is able to actually function without a foggy brain and have reduced pain.  He still takes medication to help control the residual pain but it is nothing like those early days of our marriage (or right after his accident). 
The pump is not a cure-all.  He still has reactions to the oral medications which can cause all sorts of physical and behavioral problems (for instance, he was on Neurontin for quite some time until it turned Hubby into an angry, out of control stranger and I told the doctor he could either live with Hubby himself or change the medication).

Hubby no longer takes Neurontin.
Thankfully, we’ve had a great stretch without behavior issues or depression.  Hubby still has pain but he knows how far he can push himself and when he needs to rest.  I’ve learned to stop telling him what he shouldn’t be doing because it will cause him more pain.  The changes we’ve both made have helped make us happier people and have kept us married for close to 15 years.

The pump runs on batteries so needs to be replaced every few years.  This will be his 3rd pump (well, 4th if you count the time the doctor accidentally installed it upside down – oops!).  The device needs to be replaced as soon as possible because it is showing signs of not working and the battery going out (giving Hubby either increased pain or withdrawal symptom s or both).
We found out just before Christmas that a cancellation came up on the doctor’s schedule for tomorrow so surgery has been scheduled.  Hubby feels terrible that he is having surgery on my birthday but I think Hubby having pain relief for a few more years is a pretty terrific present (although – shhh, don’t tell Hubby – it definitely gives me “you owe me” ammunition to use in the future if I ever need it!).

For the surgery, I plan to wear my Mickey Mouse ears from my 50th birthday celebration in Disneyland last year which, for me, is just the perfect caregiving hat.

Sunday, December 25, 2011

Merry Christmas from Robert's Sister!

Confession:  After Robert woke up from his nap this afternoon and ate some candy from his stocking, I asked him to finish his last Christmas card.
No more Christmas cards! Please!
Yes, I know today is Christmas.

Robert was so close to having them done last Sunday.  So close!  He was down to two more to go when we had to leave to make it on time to a Christmas program at church.  Robert would have agreed to pretty much anything since I was actually taking him to church instead of making him watch it on television. 
He agreed to finish them in the car (big mistake and my apologies to cousin Adam if Robert’s handwriting is a bit difficult to read – bumpy roads combined with my driving aren’t very conducive to easy writing in the car).    

We got to the church before he could finish the second one so it stayed in my purse until Robert came over again this weekend.   Even I didn’t think it would be okay for him to finish the last one during the church program (plus, the lights were out most of the time . . .).

So, yes, on Christmas, Robert finished his last card.  I actually may have him do a few more just to get a head start on next year!   (Okay, I kid). 

I am grateful the cards are finished but I’m also grateful for a Christmas season filled with love, happiness, family and friends.  There has been so much laughter with our daughter who helped with the Christmas lights and assisted with shopping.  I am grateful for our other daughter for being a wiz in the kitchen and supplying us with delicious treats (and giving me a reason to join a gym in 2012!).  Both are busy with work and school and their own friends but find the time to be with family.  Our son seems to have turned a new leaf since he realizes he’ll be leaving for boot camp in 5 weeks and is (gasp) actually fun to be around (and seems to  be more on board with making good decisions).  Hubby and I have been enjoying working as a team in our usual Christmas roles (I shop; he wraps – we do make a great team!) and Robert hasn’t been in the hospital for quite some time due to illness or falls (knock on wood).   

I am grateful Hubby’s family, Robert and all the kids joined us today for a Christmas morning filled with laughter and way too many breakfast treats.  Other Brother and his family are visiting tomorrow so the Christmas fun and treats will continue for another day.  

(I definitely need to join a gym or invest in more sweat pants.)

I hope your Christmas was as delightful as ours.  Just one word of advice: take it from me, you may want to get started on your Christmas cards tomorrow . . .

Sunday, December 18, 2011

Is it Christmas Yet?!

It better not be – Robert isn't done with his Christmas cards yet!  (Um, mine are “in the mail.”) 

One thing we do have finished: our decorations (which is no small feat).  Our tree, despite a rockystart, looks very festive and is just waiting for presents to be wrapped and put around it (still on our list).  Indoor decorations can be checked off the list (as soon as I unpack those kitchen boxes).  Every inch of the house is covered with garland or snowmen or candles or countdown calendars (holiday bonus – the decorations do a fantastic job of covering up the dust).
The finishing touches were put on the outside decorations yesterday (I love crossing things off my list!).  Aside from needing a permit to display thousands of lights (I kid – a little garage conversion humor), the lights went up fairly smoothly aside from many of them not working this year and having to make numerous runs to the local Holiday Decorations/Cat Food store (otherwise known as Target).

Yes, we made another trip to Target yesterday before we could finish. . .
But they are finished!!  (Unless I find something else at Target too cute to pass up).  Hmm, I may have a problem.  Is there Christmas Decorating Rehab?

Well, before I am “cured” of decorating too much, enjoy the video of our outside décor. (If I knew what I was doing in taking videos, I’d add a bit of holiday music and maybe Photoshop some snow into the picture but since I don’t you will have to imagine “Frosty the Snowman” playing in the background and a blanket of snow on our green, Northern California, grass.)

I’d love to hear what your holiday passion is – is it decorating?  Baking?  Wrapping?  Will I be seeing you in Christmas Decorating Rehab in January?  No matter your holiday passion, enjoy the last week (or two) of the holiday season! 

Monday, December 12, 2011

“The Butter is Having a Meltdown”

That’s the best quote I’ve heard in a long time.  It comes from June’s 9 year old autistic son who was watching the butter melt in a pot as his mom did some holiday baking. 

I had my own meltdown this weekend and I’m not proud of it.  I got pretty cranky with Robert which always tells me it’s time to step back and take a break (although, I wish I could figure this out before I start snipping at him!). 

There are all kinds of reasons (I’m not making excuses) for the meltdown:  work is super busy this time of year, there are the extra tasks associated with the holidays (don’t get me wrong – love the holidays but adding holiday cards, parties, decorating, shopping and eating mounds of chocolate to an already busy schedule can be a bit stressful).  Then there’s all those lemon bars my body is trying to decide what to do with (is this junk food or does it count as one of the five fruits/veggies a day?). 
It was a short visit with Robert but packed full of activities.  I picked him up mid-morning on Saturday and had him change into his pajamas for a Christmas PJ party (my giant cow slippers were the hit of the party!).  I could have asked New Home to already have his pajamas on but there’s always the possibility Robert would put on pajamas that aren’t, um, clean.  Alright, they might smell.  He has a tendency to not notice if he’s wearing clothes that suffered through a protective brief leak and then dried.  I can’t have Robert wearing smelly clothes.

People already are wary of Robert because of the walker and the helmet and the slow speech and the seizures.  The last thing I want to add to his resume is “I smell like pee.”

I arrived to pick him up, had him change into some good smelling pajamas and we went to the party.  We were late but not late enough to miss out on any of the activities.  Robert won a prize (a set of Spongebob mugs with packages of hot chocolate mix) and grinned from ear to ear.
It was a full day and we all took it pretty easy when we got home that afternoon. 

So where’s the meltdown? 
Later in the evening when Robert was getting ready for bed, he had some bathroom issues.  Let’s just say he had trouble cleaning up (I think I’ve mentioned before that Robert likes to use one square piece of toilet paper to clean up.  No amount of me telling him I can afford to buy as much toilet paper as necessary seems to convince him to use more.)  I’ve even bought him wet wipes to clean up and told him he can use as many as he needs but he is determined to save some trees. 

As any caregiver will tell you, it is sometimes necessary to step in and help.  It was at this time I realized I didn’t have any gloves so had to resort to supervising the clean-up.  It was not going well because Robert was not listening to my instructions which were pretty clear:  USE MORE WIPES!  During this chaos, Robert’s pens that he had removed from his shirt pocket and set on the bathroom counter fell into the wastebasket along with all the used wipes. 
I wasn’t about to go fishing for them.   

He continued to get cleaned up (and not listen) and I could feel the crankiness well up in me and I was snippy with him while he finished up. 
(That’s not the meltdown).

Sunday, December 11, 2011

We Have a Winner!

This was the first year I participated in the caregiving.com Holiday Progressive Blog Party and I am already counting the days to the one next year!  Hubby baked sugar cookies and habanero cheesecake and (gasp) Lemon Bars for the occasion (well, he actually baked all that for a family Christmas Party we attended yesterday but I’ve enjoyed a few lemon bars while reading blogs). 

Okay, okay, fine.  I admit it.  More than a few. . .
During the Blog Party, I was introduced to a few new caregiving sites (Care About You; Caregiving LibraryA Day in the Life; Intentional Caregiver; Jersey Jenny and SandwichINK) and continue to support and admire the work done by Denise Brown at Caregiving.com.

Along with reading great blogs, we had prizes this week!  From the caregiving.com site, NJ won an autographed copy of my book, Forever a Caregiver (I may add in a few extra goodies to her gift bag just because it’s the season to do that!). 

Also, as promised, I picked a winner from the commenters on my site this week and the winner is (imagine a drumroll, please): June Sockol.  June also writes (excellently) at Life of a JuneBug about, as she says, her “life as a mom-preneur to an autistic son.”

June also wins an autographed copy of Forever a Caregiver.  June just may find a few extra treats in her gift bag as well, although, I’m going to have to keep those Lemon Bars for myself!

Congratulations to the winners!! 

If you’re looking for a Christmas gift to give to a caregiver (or to someone who just likes to read about crazy families), Forever a Caregiver continues to be on sale until December 14.  Enter the code BUYMYBOOK305 at checkout. 

Now, off to sneak another Lemon Bar or two . . .

Wednesday, December 7, 2011

The Story of Robert

It occurred to me after telling the story of Linda and her son, Jason,  and of Cindy and her son Robert and their assistance dog, Boomer, I could tell more of the story of my own Robert. 

Most readers know Robert is my little brother who, at 46 years old, has lived with uncontrolled seizures his entire life.  He is physically and cognitively disabled and seems to lose a little bit more of something all the time. 
Everyone also knows he’s a card shark and delights in beating me at his favorite card game, Kings Corners.  If that ever changes, I know we’ve got serious problems.

It’s been extremely difficult for me to reconcile the Robert that I know now with the Robert I remember as a child.
Robert started having seizures when he was five or six.  He recalls the experience as either being able to watch cartoons in his head or seeing the colors “red, blue and green.”  Either I have a terrible memory or I’m an inattentive big sister but what is so remarkable about Robert’s childhood is that he was so normal.  Sure, he struggled in school.  He was even held back in either 4th or 5th grade because of absences.  He had seizures but he ran around like any other young boy.  He got into mischief and was “a handful” as we parents like to say about high energy kids.   Robert was diagnosed as hyperactive and was put on Ritalin for a while.  I don’t really remember that helping.  Having a brother with epilepsy didn’t seem all that unusual to me. 

He was kind of a pest but isn’t that the job of the little brother?
Robert tried a variety of anti-seizure medications.  Tegretol, Phenobarbitol, Dilantin – loads more.  The side effects were brutal when he was a teenager.  Rob would spend hours in the darkened closet of his room, refusing to come out.  Mom had a tough time handling him and he lived with our dad for a while once our parents divorced.  Rob was aggressive and surly and depressed.  He threw a punch at our mother at one point and was aggressive toward me as well.   I thought I knew everything about this period until we were at his recent neuropsychology appointment.

Rob told the doctor he tried to kill himself when he was ten years old.

Monday, December 5, 2011

A Caregiving Holiday Blog Party!

For whatever reason this year, many of our Christmas decorations decided this was the year to stop working.  Several strands of lights went through the “testing” phase of putting up decorations, only to stay dark (and, yes, we checked them on a different outlet in case our outlet was the problem).  Our lighted candy canes that usually brightly line our walkway still line the walkway but you’ll need to use the light from the lights in the nearby tree and the snowflakes hanging from the gutters to illuminate your way to our door.  We also had to say goodbye to the usual lighted holly we hang above our garage. 

Goodness, it was as if they all looked at each other and said, “We’ve worked long enough.  Let the elves make a few more candy canes and string lights and holly, we’ve paid our dues.”

So, off they went to Occupy the Garbage Bin.  

Inside, the situation was similar.  Lights didn’t work and a couple of ornaments broke (both of them Nebraska Cornhusker ornaments, no doubt shattering themselves to oblivion due to a disappointing football season).  At least we had about a thousand other ornaments and a beautiful, albeit, slightly banged up tree.
Looking good after a rocky start!
We don’t usually intentionally get a banged up tree but this year was special.  This was the first year our tree flew off the roof of our car during the trip home.

Yep.  A 10’ foot tree, freshly cut from a nearby Christmas Tree Farm flew off of our SUV on a two lane road and landed in the next lane over but miraculously avoided hitting any other cars.    

Bonus: it didn’t even get run over.

My husband would have loved to keep that part of our Christmas tree experience just between us and our son who was riding in the backseat (and who looked about as shocked as an 18 year old boy trying to maintain some semblance of “cool” can look), but with technology today, I had already texted our daughters and was in the middle of posting the event on Facebook when his request for privacy came through. 

Gotta make that request that a little quicker, honey.  My typing fingers are pretty darn speedy.  (Plus, who really could keep that experience to themselves?)

Now that the decorations are finished and the tree is in our home instead of the highway, it’s party time.  Since this is a blog, this is a blog party. 

This week, I’m participating in the Caregiving.com HolidayProgressive Blog Party  It’s a great opportunity to read the blogs of other caregivers as well as those blogs of a few people running businesses which are designed to help caregivers. 

I never tire of mentioning what a fantastic resource Caregiving.com is for caregivers.  It offers a community – no, a family – of support, resources, inspiration and caregiving tips.  If you are a caregiver with a blog or have a business geared toward caregiving, you can join the party too!  Visit caregiving.com for the details to join and how to win great prizes.

Speaking of prizes, at the end of this week I will give away one autographed copy of my book, Forever a Caregiver, to a random visitor/commenter.  This book is for anyone who is a caregiver or who has a family.  J
Now, imagine sitting around our tree (which doesn’t look too bad after having spent some time on the highway), grab some hot chocolate (with a candy cane in it, of course), a couple of cookies and enjoy the party. 

Saturday, December 3, 2011

Introducing Another Robert

For my final blog about Epilepsy Awareness Month last week I was going to list the last few facts and briefly talk about the people I met who either care for someone with epilepsy or who have epilepsy themselves.

What I realized is the stories of the people I met cannot be summed up in one or two sentences.  These are people who, like Robert, have lived with epilepsy or cared for someone with epilepsy a good part of their lives.
So my final blog has turned into a never ending "final" blog consisting of several posts.  I posted the final few facts and I introduced Linda who cares for her son who has lived with epilepsy most of his 40 years.  Both Jason and Linda “choose happy” in order to manage their situation. 

On Day 18 of Epilepsy Awareness Month I presented the fact about Seizure Response Dogs and learned of another Robert with epilepsy that day! 

Cindy cares for her son, Robert, who was paired with a Seizure Response Dog (Boomer) from Paws with A Cause in 2009.  
Cindy’s story touches on one of the astounding aspects of epilepsy which, according to the CDC, is that “epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.”   

If there was one drum I continuously beat during the month of November it was that more funding is needed for epilepsy research.  Now I’m no math wiz (as many of you know) but it seems to be a very simple formula.  Increased funding for research = better seizure control or (gasp!) a cure = less medical costs & fewer lost earnings. 

In Cindy’s case, not only is her son not able to work but Cindy left her career seven years ago to help care for Robert.  Cindy shares her story:
“My son Robert is 24 years old.  Robert's first known seizure occurred when he was 2 ½ years old.  The doctors told us it was a febrile seizure since he had a sudden spike in body temperature at the onset of the seizure.  They assured us we didn't need to worry, that it wouldn't happen again.  It did.  We were reassured once again, and then he had another.   After the third seizure we were reassured that he would grow out of this common childhood condition and wouldn't develop epilepsy.  Soon after, he had his first non-febrile seizure and then another.  He was then diagnosed with epilepsy – all before his fourth birthday. 

Friday, December 2, 2011

Meet the Faces of Epilepsy

When I was growing up, I knew one person with epilepsy: Robert.  My knowledge of epilepsy was limited.  I knew he had seizures, I knew not to panic when they happened (early training for my overall “let’s not panic” motto) and our parents took him to a lot of doctor appointments.  They were on such a quest for a cure they once even took him to see a neurologist in Switzerland (from our home in Nebraska).  They wanted the best neurologist in the world to see him and made it happen.  Unfortunately, they returned defeated since the neurologist didn’t recommend surgery (or any other options) at that time.

Robert was different because he had seizures but he had friends. Not all the kids were very understanding but he did his best to educate them even then.   By the time high school came for him, he had friends but many people shied away from him too (having tonic clonic seizures with a loss of urinary control doesn’t do much to put you on the popular track in school).  Robert once told me that he realized people were saying mean and incorrect things about him after one of these seizures so he asked his teacher to let him give a talk to the other students to educate them about the disorder.  The teacher allowed him to talk to the class and Robert spread epilepsy awareness in his own way.  I am grateful to that teacher because, even years later when telling me the story, Robert feels great pride that he was able to educate the other kids about epilepsy.  
During Epilepsy Awareness Month in November, I was fortunate to meet many other extraordinary people either with epilepsy or caring for someone with epilepsy.  Over the next few days, I want you to meet them too.  

One of the first people I met when I started the month of epilepsy awareness was Linda.  Linda is a mom, grandmother and wife living in North Dakota.  She’s probably living with a bit of snow right now!  She’s also a caregiver to her son, Jason, who (if I didn’t know better) would think was Robert’s twin.  Their stories are very similar. Linda shares their story:
“Jason had his first seizure in 1971. Up until then he was a normal, happy, healthy 2 ½ year old. From that day forward our whole world turned upside down for him and our family. Epilepsy not only impacts the person who has it, but the whole family unit has issues in many different areas of their lives as well. We live in a small rural community in SW corner of North Dakota, so, we had to travel many miles to find the medical help we needed for Jason. There was no Internet or great support systems back then. We made numerous trips to Mayo Clinic, U of MN, and other clinics in ND and SD. We tried the Kerogenic Diet, surgery in 1983, VNS implant in 1990 and of course every med and combo of meds on the list. Jason just seemed resistant to all meds. Usual side effect was horrible behavior and since he lived at home, that was just not acceptable. At present he is on Carbatrol and Zonisimide, which seem to be working well together for behavior.
“After 40 years, he still averages about 30 seizures a month. Every year he goes downhill physically and mentally. Jason lives at home with me and his Dad.  I have always been a stay at home Mom. We are basically his shadows. He attends a sheltered workshop 5 days a week.  Jason has two younger brothers, who he calls his "big brothers," and he is an Uncle to 5 kids. He loves home, puzzles, books, movies, especially the Star War Movies and playing board games. He always tells people "you can choose to be happy or sad. I choose happy.

“My husband, Gary, retired early to help care for Jason and we basically just live a simple quiet life and enjoy home and family. We were told in June, by the doctors at Epilepsy Group in St. Paul, MN, that we were pretty much out of options.  Unless research can find some miracle, I doubt Jason will ever be seizure free. Sadly, I've resigned myself that this is probably the best it will be for Jason for now. After 40 years, one just gets worn down mentally, physically and financially.”

Even with these frustrations, they "choose happy."

I am grateful to have connected with Linda and look forward to sharing with her any new information about Robert and learning more about Jason.  You can read more about Jason’s story at Crowdrise which is a fundraising site.  Linda has stepped out of her comfort zone to raise money for CURE to help, as she says, “keep the lights in an epilepsy research lab for a day or two.” 
Tomorrow, I will introduce you to another Robert and his assistance dog Boomer!

Wednesday, November 30, 2011

Winding Down Epilepsy Awareness Month

Epilepsy Awareness Month started with me thinking I was going to raise awareness for epilepsy!   I was going educate people!   I was going to put on my advocacy hat and put those skills to the test!  As the self-appointed spokesperson for my brother, I was going to let people know what it’s like to live with epilepsy!  

I had big plans.

I almost feel guilty about it (because that’s what I do) but realize I gained so much more from Epilepsy Awareness Month than I gave.  I became aware of many, many stories of others living with epilepsy or caring for someone with epilepsy.  People educated me about epilepsy.   I saw just how many other advocates there are out there but know there’s room for more!  People told me what it was like to live with epilepsy or care for a loved one with epilepsy.  I learned a few facts along the way, too, as I did my research to come up with one fact a day about epilepsy and shared them on my Robert’s Sister Facebook page , through Twitter (@robertssister1) and each week here, here, here and here   

The last few days of the Epilepsy Awareness Month included several facts that were new to me. 

Fact 27:  Men with epilepsy have their own hormonal changes which can be caused by both the seizures and from the antiepileptic drugs.  These changes can affect mood as well as reproductive function and fertility.  (Many thanks to reader and fellow caregiver, Cindy Mitchell, for sending along articles addressing this topic)!

Fact 28:  According to the CDC, “epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.”  Yet another reason to increase awareness and funding for research.  (Sometimes this month I was compelled to editorialize the facts).

Fact 29:  New research (from Science Daily) indicates that people with epilepsy who used the older generation antiepileptic drugs (such as Phenobarbital, Dilantin, Tegretol, Depakote) for extended periods of time may be at increased risk of hardening of the arteries.  This information shouldn’t dissuade anyone from a treatment that is effective in treating epilepsy but this information may be useful when talking treatment options with your neurologist.  Robert has been on all of these at some point in his life (and still takes Depakote) so I’ll be talking to his neurologist about this study (I'm sure his neurologist loves me).   Of course, this is a trade-off – many times the side-effects are something people with epilepsy have to live with in order to gain seizure control.  Another reason why more research is needed.  (Obviously, I could never be an unbiased news reporter).

Fact 30:  The last fact of the month is something I’ve come to realize even more this month.  Epilepsy affects everyone in different ways and as many people as there are with epilepsy (almost 3 million in the U.S. alone), there are that many ways to live with epilepsy.  Epilepsy presents challenges (stigma, necessary treatments and their unpleasant side effects, discrimination, interruptions from the seizures) but finding support and information is possible.  Living well with epilepsy, living with hope for a cure is possible.  I’ve seen it this month with the fantastic people I’ve met and know it is true with my own brother, Robert. 

Thank you so much for joining me during Epilepsy Awareness Month.  I’ve met some extraordinary people this month who I will share with you in the coming days.  For now, let’s continue to search for a cure and better treatment and bring awareness (and more funding) to epilepsy. 

Please share what your experience has been during Epilepsy Awareness Month 2011. 

Monday, November 28, 2011

Holidays & Tradition

We love Christmas at our house.  Oh, who am I kidding?  We love all the holidays!  Any excuse to decorate the house and yard (Halloween, Christmas) or cook a big meal (with homemade pecan pie) for the entire family (Thanksgiving) or watch fireworks from the local Futon Shop parking lot (4th of July and a blog post all its own).
Only the beginning!
We have our holiday traditions although some of them may not be for everyone (it takes a special person to want to watch fireworks from the parking lot of a furniture store).  One of our traditions at Christmas is to decorate the outside of the house  with hundreds of lights, candy canes, snowmen, blow up penguins – you name it, we probably have it and if we don’t it’s because it won’t fit in the yard.

Confession: we have so many holiday decorations that my husband gave me a birthday gift of a shed to store them all in!
I know this isn’t very “green” of me to indulge this tradition but it is fun, it brings us joy to set it all up and brings joy to people driving by our house to look at the decorations.  It even brings the electric company joy (okay, that’s my least favorite part aside from taking them all down).

Yesterday, hubby hauled all the decorations out of the shed (no small feat for someone with chronic back pain) and my daughter and I went to work setting everything up.  Once hubby recovered from the hauling, he helped hang snowflakes from the gutters.  Robert was visiting for the Thanksgiving weekend but, at first, didn’t care to sit outside to watch the transformation.  He thought it would be too cold outside; plus, he had a word search puzzle to finish.
Midway through the decorating, Daughter and I had to make a trip to Target to get more lights (hey, it was needed - this was the year many of the lights decided to not work and there were those cute snowflakes we needed more of).   When we returned, Robert joined us on the porch wearing a warm jacket and watched us blow up penguins, put together a train and install solar candy canes along the sidewalk.  We’re getting more “green” this year after all!

We were thrilled with the result after working on it all day (and we’re not even done yet – there are always more lights to hang!).  Robert looked at the finished product and proclaimed it looked “excellent” which is saying a lot, considering his usual response to anything is a very understated, “that’s nice.”
Daughter, husband and I had to agree: it was pretty excellent!

What traditions do you enjoy with your family?  Anyone else enjoy decorating to the extreme?

Sunday, November 27, 2011

This Week in Epilepsy Awareness

There are only a few more days left in November, the designated Epilepsy Awareness Month, but I plan to continue increasing epilepsy awareness and supporting other individuals and organizations doing the same even after November ends.   I have learned so much while researching epilepsy and have enjoyed sharing a fact a day.
In case you missed past weekly recaps, please visit the first few facts, week two, and week three.

We’re in the home stretch now!
Fact 20:  According to the fact sheet from Epilepsy Foundation of Florida, “the leading non-medical problem confronting people with epilepsy is discrimination in education, employment and social acceptance.”  Here’s the solution:  Everyone who discriminates - knock it off!  (I thought I’d try to be a bit subtle this Sunday morning).

Fact 21:  Statistics don't lie - Epilepsy research needs better funding.
2005 National Institutes of Health Research Funding Statistics (courtesy of CURE Epilepsy): 

Alzheimer’s: 4.5 million affected; NIH research money:  $149 per person;
Epilepsy:  2.7 million affected; NIH research money:  $39 per person
Autism: 1.5 million affected; NIH research money:  $68 per person;
Parkinson’s:  1 million affected; NIH research money:  $225 per person;
Multiple Sclerosis:  350,000 affected; NIH research money:  $314 per person;

Fact 22:  Rules for obtaining a driver’s license vary by state but, generally, each state requires people to be seizure free for a certain period of time, ranging from a couple of months to over a year, before they are able to obtain a license.  Other considerations such as the types of medication a person is on to control seizures are factored into the decision to grant a driver’s license.  In California, there are two types of Medical Probation.   One is for drivers who have 3 – 5 months of seizure control and the other is for those with 6 months or more seizure control.  Check the DMV in your state to get the specific rules. 

Fact 23:  What is epilepsy exactly?  First, epilepsy is a disorder; not a disease.  A seizure can be described as an electrical storm in the brain.  Normal brain function limits the spread of electrical activity but a seizure happens when this breaks down and allows this electrical storm to spread in the brain.  A person is thought to have epilepsy when they have had at least two seizures.    
Fact 24: A diet related fact for Thanksgiving!  A Ketogenic diet is sometimes used to treat epilepsy in children.  This is an extremely high fat, very low carb diet and was first developed in the 1920s after it was noticed that when people with epilepsy fasted, they had fewer seizures.  This diet is generally more successful in children but a doctor should be consulted before trying it. 

Fact 25:  In almost 75% of cases of epilepsy, no cause can be found.  So many conditions can cause epilepsy or are related to epilepsy that it’s difficult to track down the exact cause.  It can be caused by an abnormality in brain wiring, imbalance of brain chemistry, injury, poisoning, brain tumor, stroke, Alzheimer’s, cerebral palsy, or any combination of these (just to name a few).   Medicinenet.com says “Researchers believe that some people with epilepsy have an abnormally high level of excitatory neurotransmitters that increase neuronal activity, while others have an abnormally low level of inhibitory neurotransmitters that decrease neuronal activity in the brain. Either situation can result in too much neuronal activity and cause epilepsy.”
Fact 26:  Women living with epilepsy have unique issues to manage.  For instance, some antiepileptic drugs can interfere with the efficacy of oral contraceptives.  Half of women with epilepsy report increased seizures around the time of their menstruation and it’s been found that menopause and perimenopause can cause changes in seizures as well. 

Thank you for reading and I hope you learned at least one thing new about epilepsy!  Please share your experiences with epilepsy in the comment section. 

Friday, November 25, 2011

Giving Thanks

My blogging group is made up of artists, writers, entrepreneurs, retired actors, illustrators, moms, political activists, dog rescuers and computer experts – and that’s just two of them (I kid).  All have great hearts and I am fortunate to call them my friends.  Occasionally, the group comes up with a “challenge” and we write about a particular topic.  Last month, we wrote a list of random things about ourselves (and I did one for Robert as well).  Appropriately enough, this month we are writing about what we are grateful for.  For starters, I am grateful to be a part of such a diverse, passionate, kind group of individuals!

I think the rest of what I am so grateful for can be summed up in one word: “family.”  (No, the blog post is not ending now.  Have you ever known me to write a short post?).   I couldn’t ask for a better family.  Everyone always says that but I actually really do have the best family and I hope you think you have the best family too because there’s enough room for a lot of “best” families.  Why am I so grateful for my family?
1.       I’m grateful to my husband for his clever ideas.  “Leave the plastic wrap on the new sofa bed mattress that Robert is going to sleep on.”  Brilliant.  Hubby just saved us $30 for a mattress cover.  I’m also grateful that he is willing to spend the day with Robert (and have a great time, too!) so I can hang out with my daughter shopping.
2.       I’m grateful for my daughter.  Yeah, she’s 22 and we were supposed to have gone through that difficult period where mothers and daughters don’t get along but we missed it because we were laughing so much. 

3.       Even though he sometimes drives me crazy because he doesn’t pick up on the life lessons I’m trying to teach him, I am grateful for my step-son.  He chose to join the Air Force and I am thankful to him for his commitment to our country.  Now, about that money you owe me. . .  

4.       I am grateful to my step-daughter who is strong-willed and opinionated (hmm, sounds like someone I know!) but would have all of our backs if the situation called for it.  

5.       I can’t forget how thankful I am to all of our animals (of course, they are part of the family)! Years ago, my mom called our house “Noah’s Ark” because of the menagerie we had.  We still have a slew of animals and I couldn’t imagine life without any of them.

6.       I’m grateful to my Other Brother.  Other Brother and I have been close since our mom brought him home from the hospital close to five decades ago and I would climb into his crib to take care of him.  I can always count on his sound advice and good sense whenever I need it and know that no matter how busy we get with our lives, we can make each other laugh within two seconds of seeing each other.

7.       I am grateful to my in-laws, especially my mother-in-law because she became friends with my mom when Hubby and I first married and has always been a mom to me but even more so after my mom died.  I treasure her for that.

8.       I’m grateful for Robert.  We were never close growing up but in these last few years he has taught me to slow down and appreciate the little things (like a good card game and a brain that doesn’t randomly misfire).  He has also shown me how someone can be happy with nothing more than a word search puzzle, a great sense of humor and his belief in God. 

9.       I am also grateful for the friendships I have and consider these friends a part of my family.  My best friend is there for me whether I am happy, cranky or overwhelmed and knows exactly what to do in each situation (which usually involves coffee or chocolate).  I am truly grateful for my friendships with other caregivers who have enriched my life this past year.  I am forever indebted to them.

I am grateful for all of these people not just this month or just on Thanksgiving, but every day of the year. 
Thank you for indulging me this expression of gratitude.  Even though Thanksgiving is over, please grab a piece of leftover pie and share what you are thankful for. 

Sunday, November 20, 2011

A Lazy Sunday with Robert

6:45 a.m.:  Robert and the dogs sleep in!  Woohoo!  I go downstairs to let the dogs out.  From the sofa bed in the family room, Robert says “good morning!”  Good morning, Robert.

6:46 a.m.:  I give morning meds to Robert. 
6:50 a.m.:  Robert sits up and takes his soaking wet night shirt off as he tells me it’s dry. 

6:55 a.m.:  Let the dogs in; dry their paws since it’s raining outside.  Robert moves on to taking off his socks.
7:05:  Robert puts on his helmet and pushes his walker to the bathroom.  He takes his wet pajama bottoms off and I grab a pair of disposable gloves.  Note to self: invent a better diaper.

7:10:  Wet briefs are placed in the garbage bag I hold out for Robert.  Robert uses the bathroom while I strip the bed and throw a load of sheets, pajamas and blankets (just for good measure) in the washer. I turn the sofa bed back into a couch.
7:25:  Fill the sink full of soapy water and give Robert a warm washcloth to wash off.  I help as needed.

7:50:  Washed and dried, Robert starts to get dressed.  It’s Sunday which means he’ll wear a white shirt.
8:05:  Hubby starts making blueberry muffins.  Yum!  I throw another load of bed linens in the washer. 

8:15:  Robert finishes dressing and pushes his walker to the couch.  He takes his breakfast meds and starts to watch a church program that I’ve recorded for him.
8:35:  Muffins are ready!  Robert enjoys the muffins and makes sure he eats every last crumb.  Hubby asks if he wants another.  You have to ask? 

9:30:  Robert finishes with muffins, banana, cereal, juice & milk and returns to the bathroom to brush his teeth.
9:55:  Back to the couch to finish watching church.  I have another church program recorded for him so he’ll be busy for a while.

10:30:  Robert is sleeping through church.
12:30: I give Robert his lunch meds and start to make grilled cheese.  It’s a rainy day so grilled cheese and soup sound fabulous.  I find some sort of meat & pasta soup in the cupboard that teenage son hasn’t yet found so heat that up for Robert. 

12:40: Robert tries to eat half of his sandwich in two bites.  I scold him as he tries to shove bite #2 in his mouth.

Saturday, November 19, 2011

Week 3 of Epilepsy Awareness Month

Robert was diagnosed with epilepsy 40+ years ago but, this month, I found that I still have so much to learn about epilepsy.  Researching a variety of sources to share one fact a day has been tremendously helpful to me and, I hope, to others.  I have become aware of so many organizations passionate about advocating for a cure which fills me with such hope and optimism that it can be done!

I’ve also met many wonderful, hopeful, tenacious, persistent and resilient people who either live with epilepsy or care for someone who is living with epilepsy.  I almost feel guilty (you know how I am) because I have personally gained so much from this Epilepsy Awareness Month – and, it’s not even over!
In case you missed any of the facts last week, I am happy to share them here (I’ve added links to get more information and expanded a bit of the information also since we have more room here than Twitter or Facebook provides).   The first two weeks of facts can be found here and here. 

Fact 13:  Inspiration and motivation to help sometimes comes from having a personal experience with epilepsy (and other conditions or diseases).  My passion for epilepsy education and awareness stems from having a 46 year old little brother with lifelong, uncontrolled epilepsy.  Greg Grunberg (he starred in the TV show Heroes) started the Talk About It Organization because his son has epilepsy. They have a terrific website where lots of different people do actually talk about epilepsy.  Susan Axelrod (whose husband, David Axelrod, was a senior advisor to President Obama) started the organization CURE: Citizens United forResearch in Epilepsy because their daughter has epilepsy.  These are just two of the organizations doing great work to spread awareness and education and raising money for epilepsy research. 
Fact 14:  The CDC reports that as many as one third of people with epilepsy and recent seizures have not seen a neurologist within the past year.  The Epilepsy Foundation and The National Association of Epilepsy Centers provide information about where to find epilepsy specialists.  A referral from a primary care physician can be a good place to start too.  I suspect not being able to pay for care and medications might be one reason people haven’t seen a neurologist.  If that’s the case, check out Medicaid benefits in your state.  Start here if you live in California.  It can be a difficult process to get through but worth it to have access to a neurologist.

Fact 15:  For the 30% still searching for seizure control, approval of new medications brings some hope.  A few new medications coming on the market in 2012 are Potiga (recently approved by the FDA), Clobezam (also recently approved by the FDA but used elsewhere for years) & Sabril (which has been used in Canada for years).  Like any other anti-seizure medication, there are serious side-effects to watch out for (Sabril, for instance, causes vision issues in as many as 1/3 of those taking it).  If current medications aren’t satisfactorily controlling seizures, these might be worth a question to the neurologist.  
Fact 16:  Did you know November is also National Caregiver’s Month?   (Okay, it’s also National Raisin Bread Month but, as most of you know, I can’t cook so that’s less of a priority.  Although, I do love a good raisin bread.)  Back to the epilepsy facts . . .

Mood disorders are related to epilepsy and can be a side effect of either the seizures or the anti-seizure medication.  Caregivers can help provide valuable information to the neurologist about possible depression in the person with epilepsy as they can sometimes spot the signs of it first. 

Saturday, November 12, 2011

Another Week of Epilepsy Awareness

Some excellent organizations are helping raise awareness about epilepsy.  This is not a new condition but epilepsy has been kept in the shadows for far too long for reasons that basically boil down to fear.  The Epilepsy Foundation, the Talk About It Organization and CURE: Citizens United for Research in Epilepsy are just a few of the organizations doing great work to spread awareness and education and raising money for epilepsy research. 

My own efforts this month are concentrating on education and awareness.  My Facebook page has a new fact each day and you can follow me on Twitter (@robertssister1) to get facts about epilepsy and how they relate to Robert.
I’d love to know if the facts posted last week are new to you and would enjoy learning facts from you!  Post your own fact in the comment section and I’ll be sure to credit you if I use the information this month. 

Did you know . . .
Fact 6: It is a MYTH that a person can swallow their tongue during a seizure.    Also, nothing should be placed in a person’s mouth during a seizure.  The best way to help a person having a seizure (if they are lying down) is to help keep them safe.  If possible, roll them over to their side and place something soft under their head.  The tongue swallowing MYTH persists today so please spread the word that this is not true.

Fact 7:  In 1990 Congress passed the Americans with Disabilities Act. According to the World Health Organization, as recently as the 70’s it was legal to deny people with seizures access to restaurants and theatres.  According to The Epilepsy Therapy Project (www.epilepsy.com), there were even laws forbidding people with epilepsy to marry or become parents and some states allowed sterilization!  Can we all agree to just stop discriminating – whether or not there's a law telling us not to?
Fact 8:  Most people with epilepsy live a full life but the mortality rate among people with epilepsy is approximately 2 to 3 times higher than the general population.  Up to 50,000 deaths occur annually in the U.S. from SUDEP (Sudden Unexplained Death in Epilepsy), prolonged seizures, and other seizure-related causes.  When Robert was 15 he came very close to being a statistic when he had a seizure in a swimming pool.  He was in a coma for a few days but survived (he apparently couldn’t pass up more opportunities to beat his sister at cards!).

Fact 9:  Epilepsy surgery is one treatment available for people living with epilepsy.   After surgery, 70% of patients are seizure-free, with 85% having a significant reduction in seizures.  In September, Aurora Health Care conducted a Temporal Lobectomy on Twitter!  Did you “watch” it?  It was exciting and informative!

Thursday, November 10, 2011

Piecing Together the Puzzle of the Brain

Robert has had uncontrolled epilepsy his whole life.  At 46 years old now, after numerous head injuries (even with a helmet – yeah, that’s a neat trick), surgeries and medications, Robert is not quite the person he used to be. 

Robert finished high school and even took a few community college courses many, many years ago.  Now, he falls asleep reading a book after two pages (I’m trying to not take that personally since it was my book) but he can finish word search puzzles like there’s no tomorrow.  Most days he can’t remember what he had for lunch and sometimes he even forgets he ate lunch (even though he always enjoys eating it).
Robert was able to ride bikes when we were kids, figure out the bus system as he got older (he never was allowed to drive although our dad let him drive once because he was irresponsible that way) and was able to walk for miles to the mall or to the movies.  Today, he uses a walker to keep his balance, drags his right foot while walking and occasionally (okay, often) trips. 

For many years, Robert was able to manage his own medications (taking them and picking them up from the pharmacy) and all of his doctor appointments.  That would be virtually impossible today and so he has people give him his meds on time and I take him to his appointments. 
The decline in his motor function and cognitive ability has been dramatic when comparing him at age 20 to now at age 46. 

I want to know why.  Is it the uncontrolled seizures?  They can, after all, cause brain damage.  Is it all the head injuries?  Perhaps the medications are clouding his “normal” functioning?  Maybe it’s something else completely.   
Robert’s neurologist gave us a referral to a Memory Specialist and to a Neuropsychologist.  The appointment with the Memory Specialist was on Halloween; we see the Neuropsych in a couple of weeks. 

We (as in I) filled out a lengthy form before the visit and answered a gazillion (I counted) questions about family history, present behavior, past accidents and surgeries, current medications and goodness knows what else. 
The Memory Specialist arrived in the tiny exam room with another neurologist and a med student.  The three of them sat across from us and asked Robert several questions, glancing over in my direction every now and then for confirmation of his answers.  They asked him to remember 3 words but he only remembered one after being given multiple choice answers.  He couldn’t remember the city he lived in but remembered his brother lived in Danville.  He knew the date but thought it was Sunday instead of Monday.  He didn’t know the party affiliation of the president but guessed it was “the American party.”  He did some math problems (subtracting backwards, mainly) and I was a little worried about this section myself (because, of course, I was silently answering all the questions and remembering all the words just to be sure I could).

Robert was asked to write a sentence.  I had no idea what he would write or if he would be able to do so and I was fretting like he was taking the SAT and his college career depended on it, but as I glanced over at his glacially slow handwriting, I saw a sentence take shape.  “God loves you.”
Of course.  What else would he write except maybe, “God Bless You?”

The doctor then did the physical exam and it became very obvious very quickly that Robert has a huge vision gap on his right side (that explains so much – running into people, doors, anything on his right side!).   The field of vision on Robert’s right side is so compromised that he couldn’t see the doctor’s fingers when he held them up.  This was probably the most useful information I got out of the appointment because it’s information all of us can use in order to help Robert make safe decisions when walking around.   Heads up to those visiting: don’t stand to his right!