Goodbye 2012, Hello 2013!

We’re at the end of 2012 and there are Top Ten lists for everything (and I mean everything!).  I love those lists, although a list of “Top Ten Apologies” makes me pretty skeptical when Libyan President Mohamed el-Magariaf and Vice-President Biden are listed alongside Kristen Stewart of Twilight fame.

Really, Time.com?  I think you just made my list of “Top Ten Disappointing News Outlets.”

Anyway, I love almost all lists so had the “brilliant” idea to ask Robert what he enjoyed about 2012.  I thought it would be a fun way to create our own Top Ten list to end the year and get started on 2013.

Sometimes conversations with Robert are pretty, hmm, well, short.  He’s been known to surprise me, though so I didn’t know what to expect.   

I started by asking, “What did you like about 2012?”

Robert took a bite of his Rocky Road ice cream and said, “A lot of things.” (Even though he didn’t say it, I’m pretty sure “Rocky Road Ice Cream could be at the top of his list so we’ll count that as Number 1).

Um, like what?

“Watching movies.  There’s a lot of good movies at Day Program.” (There’s Number 2)

That’s nice.  What else did you like this year?

“It was excellent.  I had a good time.” (Nothing specific but good times definitely count as Number 3)

I reminded him he was in the hospital this year (thinking this would trigger gratitude for getting better).

“I had a good time there too.”  (Not the answer I expected but I have no doubt he did have a good time!  While I was worried sick as he battled pneumonia and sepsis, he was also getting plenty of sleep, eating in bed and being visited by nurses around the clock.  Let’s count “good times in the hospital and getting better” as Number 4)

Is there anything else good about 2012?

After scanning the family room, “My walker is good too.” (Number 5 – we’ll take it)

Is that pretty much it? 

“Yeah.”

He didn’t quite make it to ten but I can think of a few more to add to his/our Top Ten List of What Made 2012 Wonderful:

6.  2012 was the year of New Home getting a terrific new House Manager!  Robert may not realize how important this is but it has eased my mind tremendously having someone there with Robert’s best interests at heart.

7.  Robert’s adaptable clothing from Buck and Buck.  He now doesn’t have to worry about buttons on any of his shirts or pajamas and I’ve even switched him to Velcro closing jeans.  After I worried he wouldn’t like the switch to a Velcro close in his jeans, he now won’t wear any other kind!

8.  Robert and I were part of an interview for the AARP produced PBS program, Inside E Street.  Robert giggled when I told him people would be asking for his autograph once he was filmed and he loved every minute of it (even though he was sick at the time and ended up in the hospital the next day!). 

9. Robert was able to visit our grandmother for the first time in years and, although the visit was much shorter than anticipated, Robert’s happiness meter was off the charts. 

10.  Robert may not have been able to meet all of the amazing, new people and fellow advocates I’ve met by advocating for Epilepsy Awareness, but I’ve told him about everyone and he knows people read about him on the computer.  He always says, “That’s nice” when I tell him about it. 

Thank you for sharing 2012 with us!  I look forward to many more moments in 2013 that will make the Top Ten next December 31.  Robert will be doing what he loves: eating Rocky Road Ice Cream and seeing the “excellent” in everything.

Have a very Happy New Year filled with many moments to make you smile. 

Down to the Wire

Today is Sunday, December 23.  Two days before Christmas and Robert is still working on his Christmas cards.  Ack!  The pressure!  (Oh, who am I kidding? Robert feels no pressure whatsoever since he does not have any concept of deadlines).

  

I picked up Robert this morning and he is staying with us until Wednesday morning (although, remember, that’s just between us). 

 

Robert working on the Christmas Cards

Robert had a pile of unopened Christmas cards at New Home which he enthusiastically read once we got back to my house.  I explained who everyone was if he couldn’t place them and he said, “That’s nice” after reading each card.  Being the borderline hoarder that he is, he will no doubt save them forever (I just realized I do the same thing!). 

 

Robert is feeling better (except still having intense seizures) and I am also feeling better.  No one else in the household has caught the nasty bug going around (knock on wood) so we are getting back into the swing of things.

 

Which, for this time of year, means working on that never ending pile of Christmas cards. 

 

Yep.  Robert is still working on them.  Unfortunately, he will not be able to finish them all but it isn’t because he hasn’t tried.

 

Our conversation this afternoon went like this:

 

Do you want to work on your Christmas cards, Rob?

 

"Sure!"

 

How about just signing ‘Love, Robert’ on the cards?

 

Robert looked straight at me, “Okay, I will.”

 

Then proceeded to write several, painstakingly slow sentences. 

 

He wants to send the cards but he also wants to write what he wants to write.  What can I do – I have to pick my battles and, call me crazy, but rushing him on Christmas cards can't be a battle (you know, because of that whole peace on earth and good will toward men thing).

 

I am resigned to the realization this is probably Robert’s last year sending Christmas cards.  Unless we get started in July.  Hmm, maybe . . .

 

I apologize if you don’t get a Christmas card from Robert but please don’t think it was because we weren’t thinking of you!  The cards weren’t in any particular order and he just did them as he could. 

 

So if you didn’t make the cut, don’t take it personally (and know that if we do cards next year, you'll be the first in the pile!).  Robert basically writes the same thing on all his cards, only changing the salutation and signature so please consider this a Christmas card to all of you! 

 

“Dear Uncle/Cousin/Friend.  I, Robert Wright, want to wish you a very merry Christmas and a very Happy New Year.  God Bless You.  Love, Your Nephew/Cousin/Friend, Robert Wright”

 

Merry Christmas and Happy Holidays!!

 

 

 

What Epilepsy Means to Me: Gallery of Interviews

The Sacramento Bee created a gallery called “The Faces of Epilepsy” based on some of the interviews done here during Epilepsy Awareness Month. 

This thrills me no end since you’ve heard me say I cannot let Epilepsy Awareness be confined to one month.  This point was driven home repeatedly throughout November when people would apologize profusely for not being able to participate in the interviews.

Because they were dealing with the after effects of seizures. Or their child was having breakthrough seizures. Or there were medication issues that needed to be resolved. 

Epilepsy does not care what month it is and seizures do not care what a person is doing.  Just this weekend, Robert had a few seizures while in the bathroom getting changed.  I try to balance his need for privacy and independence with keeping an eye on him at all times so he is safe.  During one seizure, I caught him so he didn’t fall but the other time, I was giving him privacy and he fell against the toilet, giving himself a pretty good raspberry on his back. 

Seizures don’t say, “Hey, I’m coming so get to a safe spot, clear your calendar and get comfortable.” 

Maybe the unpredictable nature of epilepsy makes me admire those dealing with it all the more.  These people have strength, resilience, persistence and guts.  And they all have to have plans and back up plans and the ability to throw all plans out the window at a moment’s notice. 

I am so grateful to everyone who participated in the interviews in November and I learned more than I ever could have imagined from each and every one of them. 

I’ve gained new friends as well as fellow advocates in our fight against the stigma of epilepsy, in our fight for more education and awareness as well as funding of epilepsy research.

If you have an epilepsy story to share, I want to hear it.  Please email me at robertssister@att.net and I will tell your story.  Your story is important in the fight for epilepsy awareness, education and funding. 

Enjoy the slideshow of just a few of the amazing people I was able to interview in November:

 

 

This Did Not Happen

Because Robert lives in a care facility paid for by his Medi-Cal coverage, he is only allowed to stay overnight somewhere else 73 nights in a year.  That may seem like a lot until you count up weekends, holidays, vacations plus the occasional doctor visit that happens late in the day or early in the morning where an overnight visit would be more convenient or when someone is sick and might be better cared for by family. 

I am not asking the state to pay for Robert to stay at my house overnight but do want the care facility to be paid.  I also don’t want to have to pay the care facility close to $200 a night for taking him out of the facility on night 74+. 

Call me crazy but that seems a bit excessive.  I mean, there are a lot of nice spas/hotels charging a comparable rate and I guarantee you Robert is not getting spa service over here at our house.  He might get Rocky Road ice cream or chocolate Frappuccinos from Starbucks but spa service – um, no.  Nobody is leaving fancy chocolates on his pillow. (Quick note to hubby: I wouldn’t mind fancy chocolates on my pillow!).

Apparently, the state doesn’t care about the actual days – just overnight visits.  I could, theoretically, pick Robert up first thing in the morning and return him to his care facility a minute before midnight and it wouldn’t count toward the 73 days.  Considering he lives 45 minutes away (one way), this solution isn’t that appealing to me. 

Although, for purposes of this story, that’s exactly what happened. 

Oh wait.  First, you are getting sleepy.  Very sleepy.  Look at this shiny object.  You are getting sleepy. 

Now repeat after me:  Robert did not stay at our house overnight this week more than one night. 

Now that we’re clear about what did or did not happen, and I can probably take the 5^th if ever asked about it and I know where to find a good lawyer, I’m pretty confident I can continue with the story.

I picked Robert up at his facility on Saturday and it was immediately clear he had a cold.  By Sunday morning, he was running a fever but it went away by mid-day (letting him sleep all morning and loading him up on Tylenol helped).  We had a family party to attend and, although we were late, we got there just in time for lunch and a gift exchange.  To Robert, this was perfect timing.

Once we were back home, I got Robert settled on the couch to relax with a box of tissues and a Frappuccino.  We had several recordings of Jeopardy so he couldn’t be happier.  While he watched television (and dozed), my daughter and I tackled the outdoor Christmas decorations!  Richard came out to figure out the most efficient way to hook up several dozen extension cords (you think I’m kidding) and after just a couple of hours, Phase I was complete!

Robert continued to feel the effects of a cold and didn’t eat a lot at dinner.  By Monday morning, he was again running a fever and coughing quite a bit.  Being the paranoid sister that I am (hey, his hospital stay in May for pneumonia and sepsis has me a little wary of colds), I took the day off and had him rest and see a doctor.  She ordered a chest x-ray mainly to appease me which turned out to be clear. 

 

When Robert has a cold, he gets very wobbly and it’s as if his legs turn to Jell-O. He moves slow to begin with but when he’s sick his usual two hour routine in the morning of bathing, dressing, eating and grooming (all done independently) become impossible tasks without help.  It takes me a few minutes to know whether or not I should step in to help because I don’t want to step on his independence but once I do, he’s always very appreciative.

 

“Thank you for putting my right sock on.”

“Thank you for putting my left sock on.”
“Thank you for putting my right shoe on.”

You get the idea.  He may be sick, but he’s polite.

He woke up without a fever on Tuesday (yay! We’re on the mend!).  He went to Day Program but Hubby picked him up early so he wouldn’t overdo things.  Robert and Richard spent the afternoon together while I was at work.  Robert watching Jeopardy and relaxing and Richard washing all of his bedding (Now that I think about it, I guess I should be leaving Hubby chocolates on his pillow). 

I came home a bit early that day and made potato soup for dinner.  Robert told me how delicious it was but me, still bitter about how he raved about Richard’s pancakes, jokingly said, “Just say that 10 more times and I’ll be happy.”

Looking straight at me, he repeated, “This is delicious.  This is delicious.”

Rachel said, “I think he’s counting.”

Richard said, “He’s up to four.”

He continued: “This is delicious.”

“FIVE,” we all shouted.

“This is delicious.”

“SIX.”

“This is delicious.”

“SEVEN.”

On it went until we shouted “TEN” and broke into cheers! 

Robert grinned from ear to ear.  After dinner, he went to bed a little early and seemed well enough on Wednesday to last a whole day at Day Program.  He was still wobbly but Day Program is flexible enough that Robert could enjoy a quiet activity for the day.  Just a movie and quiet time and then back to his care facility where he can stay until this weekend. 

They know he’s been sick and are keeping an extra eye on him and (hopefully) helping him get around until his legs get their strength back and his balance returns.

It’s this sort of collaborative care and communication with his other caregivers that I wished the state was concerned about instead of how many overnight visits one client may (or may not) have.  After all, isn’t this sort of collaboration what keeps people healthier?  Out of hospitals?  Happier?  Saving the state money?

I’d love for the system to allow more flexibility but, in the meantime, if someone asks if Robert stayed with us for a few extra nights this week, in true Sergeant Shultz fashion my answer will be a resounding:

“I know nothing.” 

Oh, you can wake up out of your trance now.  Just remember, this was all a dream and this did not happen.

What Epilepsy Means to Me: More Epilepsy Resources and Organizations

It may not be Epilepsy Awareness Month (No! It's go-crazy-for-Christmas month!) but there were so many resources people shared, I thought it would be helpful to have them consolidated in one place.

A favorite photo from Pinterest

At the end of November we recapped the organizations and resources that were founded by some of the people interviewed throughout the month. The ones included in this list are the other resources that are important to the people who were interviewed plus a few others I found that might be useful.  

Teresa's Story. Teresa shared her story of how she was diagnosed with epilepsy and then 15 years later, watched as her mom was diagnosed with it too. Teresa supports and has found help through these organizations:

The Epilepsy Foundation of Greater Chicago;

Thresholds (Emotional/Mental Needs);
Chronic Babe (CI Support);
Rest Ministries (Christian CI Support);
Caregiving.com (Caregiver Support);

Leslie’s Story.  Leslie had an excellent recommendation during her interview.  Leslie says, “I would recommend one joins local, state, and national/international organizations, both for seizures in general, and one's type of seizures specifically. Any of these organizations can give you valuable information on how to care for and live with epilepsy, how to find the best doctor and treatment options available, and give you support.” 

 

And because Leslie really tells it like it is, she follows that guidance with, “Because believe me, you're going to need it.”

Susan and her dog, Nicky.  Susan’s story about her dog, Nicky, who had epilepsy had me searching for information about dogs and epilepsy.   A few websites stood out for me:

“Real Dogs, Real People” (they have a section on their website about canine epilepsy); 
Canine Epilepsy Network; 
Canine Epilepsy Resource Center;

Kathy Patterson and her daughter, Jenny.  Kathy tragically lost her 18 year old daughter, Jenny, to epilepsy.  At Jenny’s memorial service, Kathy and her family requested donations be sent in lieu of flowers to the Epilepsy Foundation. 

Gwen told us about her daughter, Cindy, and shared social services agencies that have been helpful to them. 

Gwen tells us a little bit about them, “Cindy’s disabilities have enabled her to be put on Social Security Income. Cindy is very fortunate to have ALTA helping to support her.  They helped her to go to job training when she graduated from high school.  They have supported her in her need to have 24/7 care at her house.  The company InAlliance supports her with trained help to deal with her health problems and work to train her to someday may be self-maintaining, not likely but a nice goal.”

To my knowledge, our family wasn’t aware of the services ALTA provides so Robert wasn’t a part of their organization until just a few years ago.  I have found them to be extremely helpful to us in finding various resources for Robert (such as his day program) and am grateful he is now involved.

Helen of Manchester (I love having a friend in England!), supports Scope.  Helen said in her interview, “I've been a member of Scope for a long time. This organization is a charity based organization. They helped me over the years with holidays, day trips. I've given back on some occasions by collecting money for their charity.” 

The list will grow as more people tell their story about epilepsy or caregiving.

I am planning to run more interviews throughout the year so if you’re interested in telling your own story about epilepsy or caregiving (or know someone who wants to tell their story), please contact me at robertssister@att.net. 

The more we share, the more we help each other!

It’s Party Time!

For someone who claims to be fairly anti-social and introverted (me), I do love a good Christmas party!  We have two parties planned for today as well as one or two several items left over from my to-do list yesterday. 

Our first party is the online “Caregiving.com Progressive Blog Party.” 

 

I participated last year and had so much fun!  I was introduced to new sites helpful to caregivers as well as had fun visiting other caregivers with their own blogs.  It’s interesting to visit the other caregiver blogs because I learn so much more about caregiving!  Whether it’s how to have a sense of humor even while watching Hubby disappear into Lewy Body dementia or learning how to gain the strength it takes to help your child through an undiagnosed heart defect which eventually led to Pulmonary Arterial Hypertension and a possible future heart/lung transplant or teaching how to take a calm, healthy approach to caregiving while also educating about senior LGBT caregiving issues, all have something for someone.  

 

Other caregivers are participating as well and more usually join throughout the week.  If you are a caregiver and want to join, please visit here to find out all the details.

 

Oh!!  And there are prizes!  Who doesn’t love to get a gift at the holidays (or any time!). Caregiving.com is hosting this blog party and there are door prizes for visiting and commenting on that site. 

 

Party two is going to be a little trickier.  Robert was congested yesterday but didn’t seem to be feeling too sick.  He even got a few of his Christmas cards done (Okay, he did five.  Five!  Considering his list has grown to 40+ over the last few years, some people may be getting Easter cards).  He loves doing the cards (I’ve asked him if he wanted to skip it and he always says, “no.”).  He also likes to write a personal note in the cards.  A long note.  A painstakingly very long note.  He can’t just write, “Love, Robert.” 

 

Easter is our goal date now . . .

 

This morning, Robert woke up with a fever, cough and one of his eyes almost swollen shut (which I’m assuming is from a sinus infection).  I’m letting him sleep in and haven’t yet made the call whether or not we attend Party Two.  Hubby’s family gets together for great food (they never disappoint in that area!) as well as a fun ornament exchange.  Robert is always invited and it’s fun to see people I don’t get to see often enough.  Hubby and I usually keep our eyes out for clever ornaments throughout the year so we can pick just the right one for the party. I would hate to miss it but, unfortunately, caregiving throws a lot of curve balls and doesn’t really care what time of year it is (or what party might be missed).   

 

I’m hoping Robert will be feeling better with a little more sleep.  There’s the promise of meaty lasagna which he will not want to miss!  Robert is definitely not anti-social or introverted – the boy loves a party and, well, food. 

 

Plus, he has to get better so he can work on more of his Christmas/Easter cards today!

 

Hope you can join us this week for the holiday (blog) party!

 

Working and Caregiving: Communication, Flexibility, Creativity

On today’s to-do list:

·         Decorate the outside of the house;
·         Start and finish Christmas cards;
·         Pick up Robert and bring him to our house;
·         Help Robert maneuver through the myriad of Christmas decorations I have (hopefully) just installed;
·         Have Robert start his Christmas cards; Expecting him to finish in one day is unrealistic – actually expecting him to finish before Christmas is a stretch; (Yikes! I should have started a month ago!)

The list goes on but you get the idea. It’s the holidays and there’s a lot to do!

Before tackling my to-do list today, I joined Denise M. Brown of Caregiving.com on her internet radio program, “Table Talk.”  I join Denise the second Saturday of each month to talk about the issues facing working caregivers.  As Sally Abrahms, a blogger on AARP.org, shares from the AARP Public Policy Institute, “61 percent of family caregivers age 50-plus work either full-time (50 percent) or part-time (11 percent).”

That’s a lot of caregivers impacted by policies and benefits in the workplace that may or may not be sensitive to the needs of those caring for a family member or friend.

On the show today, Denise and I talked about how the holidays add extra stress to people already stretched thin with their responsibilities: work, family, caregiving, self and now the holidays.  How does the working caregiver juggle not only these responsibilities but the very real possibility of the unexpected (a hospital stay or illness) happening?

For starters, with communication, flexibility and creativity.

Employers don’t always know what an employee may need and it’s going to take a while for the law to catch up to the ever changing needs of both the employer and employee.  I know this first-hand after fighting for an expanded definition of family under CFRA.  Sibling care is not covered under either FMLA or the California version of it (CFRA).  If the law hasn't caught up yet, then employees need to ask for what they want from their employer.  Whether it’s a more flexible schedule or paid sick time to care for a relative not covered under FMLA or CFRA, communicating the employee’s needs to the employer is the first step to change.

Working caregivers can be the hardest working employees an employer has.  Add to this the benefit of having long-term employees and these are the employees employers do not want to lose.  Flexibility – from both sides – is essential to making this working caregiver situation work. 

Coming up with creative solutions so the working caregiver does not feel compelled to quit their job and the employer maintains a high quality employee is not easy but it is possible.  Flex-time, job sharing, a combination of working from home and the office are just a few creative solutions. 

Caregivers are very adept at creative decision making and problem-solving in their caregiving role and there’s no reason to think they wouldn’t be in workplace either. 

In our conversation this morning, Denise tells a funny story about how she “creatively” managed her full-time and part-time jobs. 

As a working caregiver, how do you manage both the caregiver and employee roles?  What creative solutions have you suggested or implemented as an employee or employer?  I’m interested to know how people have resolved this conflict without leaving the workforce. 

If you’d like to listen to the show today, please click here.  

I’m off to tackle my to-do list!  Wish me luck or the next picture I post could be me tangled in holiday lights and Christmas cards!

What Robert Loves About Christmas

Robert Loves Christmas!

Okay, I admit, Robert isn’t the only one in the family who loves Christmas (and Thanksgiving). 

My daughter is CRAZY for Christmas (okay, yes, so am I). 

Tree #2

For years I have wanted a second, smaller tree in the corner of our family room and, fighting the “oh my god you’re going to extremes/lost your mind/are a Christmas nut case” voice in my head, we got one this year.

Having the second tree helps so we can use all the ornaments we want to use (rationalization) and gives the room more holiday cheer than just the garland over the fireplace and since Robert is the family room quite a bit, this brings the holiday cheer to him (more rationalization).

Getting into the holiday spirit, I thought it would be fun to ask Robert what his favorite part of the holiday was.  On the way to Day Program, when he usually busily works his word search puzzle, I brought up the subject.

Me: What’s your favorite part of the holidays, Robert?

“Christmas.” (He’s so literal sometimes).

Back to the word search puzzle.

Me: Well, what’s your favorite part of Christmas?

“Everyone gets gifts.” (Sweet that he is thinking of all of us getting gifts, not just him).

Back to the word search puzzle.

Me: What else?

“Word search puzzles.”  (Hmm, is he trying to tell me something?)

He continues searching for the next word in his book.

I’m relentless: I mean about Christmas.

“Everything. I love it all.”

Back to his word search.

Alright, I can take a hint (finally).  It wasn’t exactly the warm, fuzzy talk about the holidays I was expecting but who can argue with, “I love it all.”

Now I wonder what I should get him for Christmas . . .

What Epilepsy Means to Me: Epilepsy Resources and Organizations

Today is the last day of Epilepsy Awareness Month – the “official” Awareness Month, I mean. 

As anyone who is familiar with epilepsy knows, there’s also the “unofficial” eleven other months we spread awareness, advocate, and take care of seizure and medication challenges. 

Through the interviews this month, I learned so much about not only epilepsy but about the resilience and spirit of people. About overcoming obstacles and not giving up.  About dealing with unthinkable loss and doing so much for others anyway.  About wanting to become involved because of the passion for this cause.

About just wanting to be heard.   

Robert is the reason I'm passionate about
epilepsy awareness and education

Some people shared with me they had never told their story of epilepsy before.  One mom told me her friends and family have a better understanding of her situation now. 

Several months ago, I wrote about a few epilepsy resources who I found to have great information as well as strong advocacy efforts.  This month, I have learned of so many more!  Included in this additional list are the organizations and websites of those who were interviewed. 

Many of those interviewed also recommended websites they are passionate about and I will cover those in a future post. 

Christy Shake: Calvin’s Story.  My favorite quote from Christy was, “I want to kick epilepsy’s ass.”  That’s all you need to know about Christy.  That and she’s smart, a terrific writer and a tireless advocate for her son.  She writes one blog post a day at Calvin’s Story and partners with CURE: Citizens United for Research in Epilepsy to raise funds for a cure here.    

Linda and her son, Jason.  Linda and I have shared many stories since we’ve met because her Jason and my brother, Robert, are so similar.  Linda is a devoted mom and also does fundraising for CURE Epilepsy in Jason’s name here.

Susan Noble, Epilepsy Warriors Foundation.  Susan said in her interview, “As President and Founder of the Epilepsy Warriors I am striving to reach as many people within the local communities to help educate and bring an end to the stigma of epilepsy.”  She’s a warrior herself so I have no doubt she will succeed! 

Michelle Reichartz and Alex DeYoung, Calm the Storm Within.  These two best friends found a shared passion: epilepsy.  Michelle shares in her interview, “All I've ever wanted was to understand what's happening to me and that's what CTSW is all about for me. No matter what, I just want to understand how epilepsy works so hopefully we can begin to better manufacture ways to control the cause.”  Michelle and Alex have set a goal for their Facebook page likes in November so, please take a minute to “like” their page.

Gina Restivo, Fly Danny, Fly.  Gina has become a passionate advocate for epilepsy research and made a terrific point in her interview, “when it comes to actual funding for research, there needs to be a public outcry from more than those suffering with Epilepsy and the foundations supporting them.”  She is so right!  Everyone – affected or not – needs to be involved in finding the cure.  A portion of the proceeds from the sale of Gina’s book goes toward the Danny Did Foundation. 

Julie Hutchison, the Chelsea Hutchison Foundation.  Julie and her husband founded an organization in Chelsea’s name after suffering the unbearable loss of their daughter.  They have helped many, many people with epilepsy and their families through their organization.  Julie reminds us in her interview, “Be your own advocate!  Know that seizures can be more than a little inconvenience and don't let any doctor treat you as though you are being overly protective.” 

Mandy Krzywonski, My Life as Mandy . . . with Epilepsy.  For someone who is only 19 years old, Mandy has accomplished an awful lot!  She runs a popular blog, donates care baskets to children in the hospital and runs several support groups on Facebook.  She’s got something for everyone!

Connor Doran, Dare to Dream.  Another successful young adult!  (Boy, I better get with it!).  Connor has been a Top 12 finalist on America’s Got Talent with his Indoor Kite Flying act. He performs all over and is a role model and inspiration for many with epilepsy (and many without!). 

Many of these organizations also have their own Facebook pages providing additional information and many can also be found on Twitter.  I encourage you to “like” their pages or follow them on Twitter.

The interviews are over (for now) but if you’re interested in telling your own story about epilepsy or know someone who wants to tell their story, please contact me at robertssister@att.net.  I plan to share the stories for as long as people want to tell them!

Thank you all for your support during Epilepsy Awareness Month!  Reading the interviews, posting comments, indicating “likes” and “shares” on Facebook and RTs all meant the world to me.  (Especially the RTs since I’m a Twitter addict). 

So what’s in store for December?  Should we have a new interview every day about the holidays?  (That’s my husband you hear screaming in the background.)

They may not be every day but there will be more posts about epilepsy, advocacy, the working caregiver and, of course, Robert!  Maybe one or two about the holidays . . .

 

What Epilepsy Means to Me: Epilepsy Facts

It’s hard to believe Epilepsy Awareness Month is almost over.  I am so grateful to everyone who agreed to be interviewed this month about epilepsy and sharing so much of their lives with such candor and openness. 

I’d like to share some facts about epilepsy today and tomorrow I will share some epilepsy resources that I hope are helpful.

First the facts, Ma’am:

•             Almost 3 million people living in the United States and 65 million worldwide live with epilepsy. Source:  Epilepsy Foundation

•             500 new cases of epilepsy are diagnosed in the United States every day.  Source:  CURE: Citizens United for Research in Epilepsy

•             Epilepsy is the 4th most common neurological disorder behind migraine, Alzheimer’s Disease and Stroke.  Source: Epilepsy Foundation

•             Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.  (Yes, COMBINED!) Source: CURE: Citizens United for Research in Epilepsy

•             It is a MYTH that a person can swallow their tongue during a seizure.   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.  Source: Epilepsy Foundation

•             Epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.  Source:  CURE: Citizens United for Research in Epilepsy

•             Epilepsy can develop at any age and can be a result of genetics, stroke, head injury and many other factors.  Source: Epilepsy Foundation

•             One study suggests 68% of people with poorly controlled epilepsy do not have personal friends.  Personal friendships help develop good self-esteem which reduces depression.   Source: Epilepsy Foundation

•             Mood disorders are related to epilepsy and can be a side effect of either the seizures or the anti-seizure medication.  Source: The Epilepsy Therapy Project

•             In over 40% percent of patients, seizures can’t be controlled with treatment which can lead to brain damage and death.  Source: Cure: Citizens United for Research in Epilepsy

•             In almost 70% 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).   Source: Epilepsy Foundation

•             Keeping a seizure diary can help someone with epilepsy and their neurologist figure out possible seizure triggers and what medications are or aren’t working.  Download a seizure diary at www.epilepsy.com.

If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.netand I’ll be happy to share your story at any time. After all, Epilepsy Awareness Month actually never ends! 
 
Tomorrow I will share epilepsy resources with you to finish this month of Epilepsy Awareness. 

Then, I’m going to say hi to my husband, pet my animals and go take a nap. 

What Epilepsy Means to Me: Mary and her Old English Sheepdog, Morgan

When I was a little girl, I wanted an Old English Sheepdog.  I loved their fluffiness and the idea of them trudging through the snow to save people.

(I obviously got them mixed up with St. Bernard’s).

We didn’t ever get an Old English Sheepdog but had other dogs (a crazy poodle and then a lovable Samoyed).

Animals touch our hearts in such permanent ways (even my crazy poodle) and the person we are interviewing today is no different.   Mary C. Russell shares what it was like caregiving for Morgan, the Old English Sheepdog who had epilepsy. 

Mary rented a room in a house in the late 1980s through the early 1990s and shared the house with the owner, four dogs and two cats. Morgan was one of those four dogs.

During the interviews this month, I’ve offered to let people use their own questions if it made it easier to tell their epilepsy story.  Mary has done just that and I am grateful to her for telling her story and for caring for Morgan.

Q:   Did Morgan already have epilepsy when you first moved into the house?

Mary C. Russell

Mary:   Yes.  At one time I was told that Old English Sheepdogs were the most abandoned dog.  I'm not sure if that's in the United States or in the world.  They are prone to epilepsy.  If they're going to get it, they get it when they're three.  Pretty much the day Morgan turned three, she had a seizure.

I think they tried her first on Dilantin and then it was Phenobarbitol by the time I was there.  Before the pills, Morgan had seizures several times a day.  On the pills, she had a seizure about once every three weeks.

I heard that she had been a happy, frisky, big dog before the pills, but then she became slow and logy, the opposite of energetic.

Q:  How did you feel when you saw that?

Mary:  I had never seen her when she was frisky.  I was sad to hear that she wasn't like that anymore. 

Q:  Were you Morgan's main caregiver?

Mary:    Not at first.  Morgan's owner was also the owner of the house and we both took care of her.  I fed Morgan her pills some of the time, three tiny pills twice a day.  Sometimes I would find some of them behind a couch.  She would get it into her cheeks and one would think the pill went down.  But it went behind the couch.

I was the main pooper scooper for the dogs.  I probably turned into being the main pill giver.

Q:  How long were you with Morgan?

Mary:    Six or seven years.

Q:  Did you have to clean up after her seizures?

Mary:    Yes.  Morgan would let go of solids, liquid, and drool.  We used a hand wet-vac to clean some of it out of the rug, and then the wet-vac had to be cleaned out.  I did some of that.  Sometimes when the rug was down to damp, we used vinegar as a disinfectant and deodorizer. 

After Morgan died, my landlady changed out the rug and the rug backing.  Liquid had gone through both layers and had soaked into the flooring.  You could see black marks on the wood.  My landlady got the floor sanded and polished, pretty much back to factory issue.

Q:  What was life with Morgan like between seizures?

Mary:    She didn't do much.  She mostly just slept.  She and the other dogs barked at passing cars and people.  Sometimes they would switch windows to follow the passersby going around the corners of the house.  I don't know if Morgan had much muscle strength, because she didn't get exercise.   After a seizure, she would bump around as though she couldn't see.  If that meant she got in the way of things, you could push her and she would bump somewhere else.  That could mean she ended up in a corner.  Nobody was around to push her away from that. 

She'd stand with her head against the wall for a few minutes and sleep afterwards.  It was moving and gushing and walking and bumping and standing in a corner, then sleeping half an hour or so.  If she slept on a wet spot, you didn't clean it during that time unless you could pull her off.  A large dog like that, you'd just have to cantilever your body at an angle, or maybe get another person to help you move her.

Q:  What was Morgan's relationship with the other three dogs and the two cats? 

Mary:    They got along.  Once Morgan stuck her nose too close to one of the cats and got a back-off swipe.  I never saw any torn flesh there.  But the cat never had trouble with the dog again.

Q:  How did the other animals act during a seizure?

Mary:    I didn't see other animals in Morgan's vicinity while she was having a seizure.  That would tend to imply they backed off.  Maybe the smells were a bit much for them, or they didn't want the wetness.  And Morgan made strange sounds.

Q:  Did they avoid her the rest of the time?

Mary:    No, not at all.  They just ambled around the house. 

Morgan paid attention when it was mealtime.  She didn't make herself scarce then.  For a while my landlady ran a dog-sitting business.  I think Morgan was around during part of that time.  She was amiable about having other people in her sphere. 

Sometimes Morgan would stand on my foot while I did the dishes or prepared food for the other animals.  She was interested in that food smell, so I guess the drugs didn't dampen her appetite or nose too much.  She wasn't trained about personal spaces.  Sometimes I shoved her off.  She weighed about 90 pounds, so if she stepped on you, you noticed.  Sometimes I felt sorry for her and didn't bump her away.

Q:  What was your attachment to Morgan like compared to the other animals?

Mary:    Combing took a lot of time and effort.  Sometimes I combed one of the cats, who was Persian and temperamental, but I combed Morgan more.  Her hair smelled.  Some of the smell may have been because she hadn't been shampooed, but Morgan also lay down in her moisture after a seizure.  I washed my hands every time after I combed her.  Sometimes the volume of the hair that I removed got to be about a quarter of the size of Morgan.  It was good upper body exercise.

Q:  Did you have any particular feelings concerned with taking care of Morgan?

Mary:    At least picking up poop, I was out in the yard and surrounded by trees.   Morgan liked going in the back yard if she could find shade near the wood fence.  She could even get to a cooler space by digging up the grass a bit and getting to the loam.  She was part of why the back yard was destroyed, for her getting to the cool dirt.

Also, Morgan would eat worms.  It might be that she wasn't just going for the cool dirt.  Maybe it was more interesting to sometimes eat worms, rather than just kibbles and table scraps.

Q:  Did she see the vet more often than the other animals did?

Mary:    No.  She just had the pills twice a day and a seizure about every three weeks.  I think my landlady noticed Morgan's distress when the hair built up.

Q:  Was Morgan licking the hair off and was that upsetting her stomach?

Mary:    I think it had to do more with heat.  I tried to comb her every week and I was also a student at the time, so there was not always an activity schedule match.

Thanks to Morgan, I felt quite at ease dealing with the seizure of one of the special needs people when I was driving them in a van, to and from their training center.

Q:   What was that like?

Mary:    Startling.  I didn't see the seizure as it was going on.  The man was slumped in his seat, still mildly seizing.  The other riders noticed it and told me.  I was driving down a pretty wide street in the middle of winter.  I pulled to the side, took off my coat, and laid it on the grass on the road verge.   I don't think it was very snowy. 

With help from others I maneuvered my passenger out of the van and onto the coat.  He finished having his seizure and maybe lay there for a few minutes, but then he was able to get up.  I asked him if he needed to change his clothes.  He said no.  His general activity level was no different from that of other people in the van.

Robert’s Sister:  Many thanks to Mary for telling us about Morgan. It sounds like Morgan helped spread epilepsy awareness and prepared Mary when her client had a seizure. 

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”  Tomorrow and Friday I will be sharing epilepsy facts to close out Epilepsy Awareness Month.   If you’re interested in telling your own story about epilepsy, you can still contact me at robertssister@att.net and I’ll be happy to share your story at any time.  After all, Epilepsy Awareness Month actually never ends!