Friday, March 30, 2012

Dreaming Big, Just for Fun . . .

What would you do with $640 million?

At 1 in 175.7 million, the odds of winning the lottery are ridiculously astronomical. (By comparison, the Institute of Medicine of the National Academies released their long-awaited “Epilepsy Across the Spectrum” report to the nation and estimates “approximately 1 in 26 people will develop epilepsy at some point in their lives”).

Ahh, but someone has to win the jackpot and because I lean toward optimistic with a healthy dose of delusional, I bought a lottery ticket (or 20).

Because I also like to be prepared, I’m planning what to do with that astounding amount of money.

After the initial “everyone gets a new car/house/boat” euphoria wears off, bills have been paid and college tuition has been set aside for future generations, it would be time to set up a non-profit or two.

I would love to open a facility (eventually going national) for the disabled where they could live and receive individualized levels of care. We would not try to fit everyone into the same plan – individuals need actual individualized plans. Everyone is unique and we will celebrate that!

There would be a bustling activities center onsite with a variety of activities to please anyone (run by my favorite Day Program director, of course).  I would definitely put Robert in charge of teaching the residents how to win at card games!

The Day Program would also be available for people to come just for the day, giving caregivers a break. Heck, we’ll even provide the transportation (it’s a dream so let’s dream big!).

We would provide the opportunity for respite visits for longer periods of time because caregivers need a chance to recharge in order to continue to stay healthy themselves and take care of their loved one.

The facility would err on the side of being overstaffed if needed so there would be enough staff to give full attention and exceptional care to the residents and guests. We would create a positive work environment in order to keep caregiver/employee burn-out at bay. (We would expect exceptional employees in return).

The facility would be both a compassionate employer and a top-ranked, sought after provider of care for the disabled.

Because friends and family have such a love of animals (which have been shown to provide positive emotional benefits to just about everyone whether disabled, elderly or not), the facility would be animal friendly!

The last piece of this dream is that since the state would get a windfall in tax revenue, I would make a request the tax money be used to help replenish the recent cuts made to social service programs.

Let's have some fun and fantasize about winning this huge jackpot.  What will you do with your winnings? We’re dreaming big – please share what you would do with your winnings!

Sunday, March 25, 2012

Why I’m Wearing Purple on March 26

Breakfast of Champions!
March 26 is the Global Day of Epilepsy Awareness (otherwise known as “Purple Day” thanks to the Purple Day Organization ). 

Purple Day is about spreading awareness and education about epilepsy which, hopefully, leads to more research so this disorder can be cured. 

Yes, cured.  The goal is to stop epilepsy in its tracks.

On Monday, I won’t just be wearing purple but I will be sharing purple cupcakes (because what better way to get people’s attention than with chocolate?). 

Hey, you had me at “cupcakes!”

The Purple Day Organization further explains what Purple Day is about: “Purple Day was founded in 2008, by nine-year-old Cassidy . . . Cassidy's goal is for people with epilepsy everywhere to know they are not alone.”

To me, Purple Day is about my brother Robert.  Robert has waited very patiently his whole life to find a cure.  He’s had two brain surgeries, he’s tried most medications on the market and he has participated in a study for the Deep Brain Stimulator. 

He’s waited for a cure since he was five years old. 

The seizures continue but so does Robert.

Robert is willing to try anything to stop his seizures.

He prays every night that God will take his seizures away “completely.” 

He’s never lost his hope or his faith.

I want to do what I can so Robert (and the millions like him) can finally see a cure for epilepsy.  I will do what I can to make people aware of epilepsy and to educate people about epilepsy.

That’s why I’m wearing purple (and eating  . . . I mean, baking . . . so many cupcakes). 

A few facts about epilepsy (for more, please read the epilepsy awareness month series). 

1.  Robert is one of almost 3 million people living in the United States and 50 million worldwide with epilepsy.

2.  Epilepsy is the 3rd most common neurological disorder behind Alzheimer’s Disease and Stroke.

3.  Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.  (Yes, COMBINED!)

4.  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. 

5.  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.” 

Please join me in wearing purple, grab a purple cupcake and help me spread awareness about epilepsy.  Thank you!

Thursday, March 22, 2012

Epilepsy Resources

Monday, March 26 is Epilepsy Awareness Day.  It’s also an excuse to wear purple!

According to the Purple Day Organization, “Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. In 2012, people in dozens of countries on all continents INCLUDING Antarctica will be participating in Purple Day!”

Perhaps in purple snowsuits? 

So how did “purple day” start? According to their website, “Purple Day was founded in 2008, by nine-year-old Cassidy Megan of Nova Scotia, Canada, with the help of the Epilepsy Association of Nova Scotia (EANS). Cassidy chose the colour purple after the international colour for epilepsy, lavender. The lavender flower is also often associated with solitude, which is representative of the feelings of isolation many people affected by epilepsy and seizure disorders often feel.”

Sometimes it’s hard to figure out where to turn, especially if a person was just diagnosed.  It can be overwhelming and confusing trying to process so much information after a diagnosis of epilepsy. The feeling of isolation by those living with epilepsy and their caregivers is very real but we are now fortunate to have many resources available.   

I really don’t know how my parents were able to get through the diagnosis of Robert 40+ years ago.  There weren’t online support groups or websites to visit for more information (heck, there wasn’t anything “online” 40 years ago!). We were still getting up to change the television channel (thankfully, that’s what little brothers were for) and the founder of Facebook wasn’t even born yet (oh goodness, now I’m getting depressed!).

Thankfully, today there are plenty of accessible resources.  To help with the mission of Purple Day, I’d like to share just a few of the many resources and support groups who can help when living with epilepsy or caring for someone with epilepsy. 

The Epilepsy Foundation.  The Epilepsy Foundation is a great place to start.  Their website includes information about epilepsy, seizures, research and much more.  The Epilepsy Foundation website has support communities for both those living with epilepsy and those caring for someone with epilepsy as well as information for educators and advocates. 

Epilepsy Therapy Project.  Another excellent resource.  Their mission is “to inform and empower patients and families facing newly diagnosed epilepsy or those struggling with epilepsy that has resisted treatment.”  They have information on innovative treatments and research as well as an online support group. 

Talk About It Organization.  Greg Grunberg (he starred in the TV show Heroes) started the Talk About It Organization because his son has epilepsy.  In an introduction on the website, Greg proudly calls his son his hero.  This terrific website has many people you will likely recognize talking about epilepsy and different aspects of it, including first aid for seizures, employment, how to discuss epilepsy in your family as well as important information about epilepsy medication.  

CURE: Citizens United for Research in Epilepsy.  Susan Axelrod (whose husband, David Axelrod, was a senior advisor to President Obama) started the CURE Epilepsy organization because their daughter has epilepsy.  This organization does a fantastic job spreading awareness and education and raising money for epilepsy research. 

National Association of Epilepsy Centers.  If researching treatment centers or epilepsy specialists, the National Association of Epilepsy Centers can help with the search.    

PAWS With a Cause.   I can’t leave out my “pet” organization!  PAWS With a Cause  provides Service Dogs trained to deal with seizures as well as other medical conditions. I can't stress enough how these dogs make such supportive and comforting companions. 

Many of these organizations also have their own Facebook pages providing additional information and most can also be found on Twitter.  Both provide wonderful opportunities to connect with others in a similar situation. These real connections will help combat that pesky troublemaker, isolation. 

I’d love to also connect on Twitter (@robertssister1) or through the Robert’s Sister Facebook page .   Please feel free to share more epilepsy resources in the comment section and help spread Epilepsy Awareness and Education (and don’t forget to wear purple on Monday)!

Friday, March 16, 2012

Finding Comfort Even on the Bad Days

I don’t like hearing that Robert got in trouble (or is causing trouble) at his New Home or at Day Program. My first thought is “oh, crap, he’s going to get kicked out” which is a leftover reaction from when his previous care facility used an incident to try to evict him. (Never mind that Robert’s longtime girlfriend had just broken up with him and I had warned the facility he was going to act out. Which he did.)

The call this morning was from Day Program. The director calmly told me that Robert was having a rough day. She explained there is a client at the program who talks loud and incessantly, repeating the same thing over and over. She said it can be annoying to people. It was early in the day and clients were being rewarded with a breakfast (this would be Robert’s second breakfast of the day). Robert became agitated with the constant talking and yelled at the other client. He even used a few curse words while doing so. He wouldn’t stop doing it so the director took away Robert’s breakfast (it was a treat, after all, and he wasn’t behaving).

Taking food from Robert is never a good idea but I understand why it had to be done. There are consequences for bad behavior. (At least he wasn’t in the middle of eating Rocky Road ice cream – I cringe at the thought of what would have happened if he had that taken from him).

Taking breakfast away from Robert further upset him and he took a swing at the director (thankfully, missing).

Robert was having a very, very bad day.

The director calmly explained the story to me and said that he was now in a different room, participating in a different activity with a different group of people. She told me she wants me to know when these things happen and for me not to worry (obviously, she’s met me before and knows worry and I are best buds).

I told her I thought there might be a few things going on that contributed to him getting upset. For one, it’s raining. Robert does not like the rain. If one drop of water gets on him or his walker, it stops him in his tracks and he wants it dried off immediately. For some reason, water really causes him stress. I’ve provided him a rain coat with a hood but he still wants to use an umbrella (although I’m not sure how he manages to push his walker and carry his umbrella). I think one reason why Robert is hesitant to wash him hands is he doesn’t like them to be wet. Luckily, he doesn’t refuse to bathe so this is a manageable problem.

Another possibility for Robert’s crankiness is I told him earlier in the week that I would be out of town this weekend and he wouldn’t be able to come over to visit. I know he looks forward to his visits with us but this is an overdue Valentine’s Day trip with Hubby. This combined with the rain and the other client yelling (and whatever else may have happened at New Home this morning) was just too much for Robert. He acted out and got in trouble.

The director agreed that any of these possible reasons for the acting out (or combination of them) could cause Robert to have a bad day. She assured me this happens and they deal with this all the time. She told me not to worry and that Robert would be fine.

When the director and I finished talking, I spoke with Robert.

“How is your day, Rob?” (Other Brother and I are the only ones who get away with calling him Rob).

“They took my food.” (I saw that coming).

I put on my “mom” hat and explained to him that he can’t get extra treats when his behavior is not good. After I was certain he understood that he needed to behave, we started joking around and he was laughing and cracking a few jokes of his own. I told Robert to apologize to the director and give her a hug. He agreed he would be good and would tell her he was sorry.

After saying our goodbyes, I hung up then called to talk to the director again. She said Robert had a huge grin on his face and “was back.” She said she and Robert agreed to talk nice to one another and then she held out her hand to shake on it. He held out both hands to her and they clasped hands, agreeing to a better day.

Because of this kind of communication, because I know this incident will not get him kicked out of the program, I know I don’t have to worry.

Robert is definitely in good hands, even on his bad days.

Wednesday, March 14, 2012

Can We Please Just Have Gender Neutral Bathrooms Already?

When I am out with Robert at the mall or a drugstore or eating out at a restaurant or enjoying some other activity in a public place, it is inevitable Robert will need to use a restroom.   Robert has mobility issues and, sometimes, bathroom issues.  He has a habit of falling asleep on the toilet (no matter where he is) and oftentimes needs help cleaning up or even changing his clothes. 

He always needs a reminder to wash his hands.

Robert is a 46 year old man so I’m not comfortable taking him into the Women’s Restroom (actually, I’d be fine with it – it’s the other women in the restroom who probably would have an issue).  If it’s just me and Robert out and about and he needs to use the restroom, I lead him to the Men’s Restroom and let him go in, keeping my fingers crossed he doesn’t have a seizure on the way to the stall.

Robert takes his time in the restroom (because of the apparent narcolepsy when he sits on a toilet) and I either have to wait outside for an hour, hoping he’ll wake up, or I wait until I am (fairly) certain no one else is in the restroom, knock on the door, peek in and ask Robert if he is doing okay.  (This usually wakes him up). 

When not knocking on the door and partially opening the door to talk to Robert, I am lurking outside the restroom getting all kinds of quizzical looks from the men going into and coming out of the restroom.  I give a half-smile and feel compelled to mumble that I am waiting for my brother.   The puzzled look on their face usually doesn’t go away.

This is not a new issue.  Parents of opposite gender children face this when the kids get too old to be taken into the gender appropriate bathroom of either mom or dad.  The child is too old to go into the opposite gender bathroom but too young for the parent to feel comfortable letting them into a public restroom on their own.  What’s a parent to do? 

Caregivers of a disabled spouse or parent (or sibling) and parents of disabled children face this dilemma all the time as well.  Sometimes there isn’t a choice.  When Robert is in his transport chair, I will have to take him into the Women’s Restroom if it’s just the two of us. 

This dilemma makes me wonder how many people stay home just to avoid dealing with a potential problem.  I don’t plan to stay home with Robert just to avoid having to lurk outside of the men’s public restroom or risk scorn by other women when bringing Robert into a Women’s Restroom but there might be others that do factor these things into their decision to go out shopping or to a movie. 

The answer seems simple enough: more unisex restrooms!  Gender neutral bathrooms seem to be popping up more and more but I really don’t understand the hesitation in creating these everywhere. 

The next time you are in a public place or at a public event, check to see if there are gender neutral bathrooms and if there aren’t, think about sending an email to their corporate office.  More awareness of the need for these gender neutral restrooms just might help bring about change. 

I plan to send an email as soon as I’m done lurking outside the Men’s Restroom . . .

Friday, March 9, 2012

Epilepsy Interview

Saturday morning there will be an interview about the interview!  Denise M. Brown of will have me as her guest on her Table Talk radio program on Saturday, March 10 at 7:00 a.m. (PST).  We'll be talking about the interview Robert did about his seizures and epilepsy in general and why that was important for us to do. If you have more questions about epilepsy, log in to the "chat room" during the program to submit a question.  To listen to the program, please click here.  If you can't listen live, the podcast will be available shortly after the program finishes.  Hope to see you in the chat room!

Tuesday, March 6, 2012

Epilepsy Questions Answered (Part Two)

Robert enjoyed being interviewed this past weekend.  He answered my questions while snacking on a few cookies and was happy people wanted to learn about his seizures and epilepsy.  He was even happier when I let him have extra cookies since we had a lot of questions to answer!  Because there were so many great questions, we covered the seizure related questions in Part One and are covering the other questions here.

Q: How do you get first responders (or the public for that matter) to react positively and supportively when Robert has his seizures and you need assistance? How do you handle it when you are met with stand-offishness?

Robert:  (Regarding first responders):  “The ambulance people treat me nice.  They’re very nice to me.”  (Regarding people who are stand-offish):  “People are nice to me.” 

Trish:  The upside of Robert having a memory problem is that he doesn’t recall the kids in school treating him differently or the time (several years ago) someone in a public restaurant witnessed him having a seizure and said, “He must be on drugs.”  I have noticed when we are out and about that people will look at Robert because he uses a walker and he wears a helmet.  I realize people are curious so this doesn’t bother me or Robert.  For the most part, Robert and I have been treated with great kindness. 

Q:  Aside from Robert's epilepsy, how does he feel he's treated as a "disabled" person? Does he sense if others view him differently? If someone is cruel, does Robert meet that with humor, anger, confusion...?

Robert:  “I do not get mad at them.  I probably would tell them a joke or laugh or something.”

Trish:  Upon further questioning, Robert says people don’t treat him differently.  I asked how he was treated when he was in high school (trying to jog a few memories) and he said, “When I was in gym, I had to go to a different class.  I taught the other students how to shoot pool.  They liked that.”

Q:  What, if anything, do people “not get”? What is the greatest misunderstanding people have about epilepsy that you have been exposed to?

Robert:  “I’m not exactly sure.  Some people are confused about what epilepsy is.  Some people don’t know what epilepsy is.” 

Trish:  I would have to agree that it isn’t so much a misunderstanding about epilepsy but more of a lack of knowledge about it.  For many, many years epilepsy was feared because those with epilepsy were thought to be “possessed” and there are many countries today that are still working to dispel these kinds of beliefs.  There also continues to be many misconceptions about seizures.  (For instance, it is a MYTH that a person can swallow their tongue during a seizure).  Something else people may not know is that epilepsy is not a disease but is instead is a disorder or condition.  There are many different causes of epilepsy.

Q:   Do you know of people switching to a smaller vehicle so has not to cause others harm during an accident if they have a seizure while driving?

Trish:  Rules for obtaining a driver’s license vary by state but, generally, each state requires people to be seizure free for a period of time 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.  I think it would be difficult to be able to drive (legally) without seizure control.  I haven’t heard of people with epilepsy switching to a smaller car to mitigate the damage of an accident. 

Robert never had enough seizure control to allow him to get a driver’s license.  For many years, he was a master at the bus system and could walk miles to go somewhere he wanted to go.  Only within the last couple of years did Robert tell me a story of how our dad once let him drive on the freeway.  I could only shake my head at the thought since this was not surprising behavior from my dad.  On the plus side, Robert was able to experience driving which made both him and my dad happy but I cringe at the thought of what could have happened if he had experienced a seizure and, in my opinion, do not think it was a risk worth taking.

Q:  In September the committee I serve on will be holding an Emergency Preparedness (EP) fair to coincide with National Preparedness Month. What should I have at the fair to address Epilepsy and how it relates to EP?

Trish:  This is a great topic! Thank you for your work in this regard.  Robert’s biggest challenges in an emergency situation would be:

Sunday, March 4, 2012

Epilepsy: Your Questions Answered

When I asked Robert if he would like to answer questions about epilepsy for people who “read stories about him on the computer,” he got a huge grin on his face. 

“I’d like that,” he said simply but the grin tells me he’s quite bemused with the idea of people reading about him.  (I’ll now have to watch out for any signs of “diva” behavior).

Let’s get to the questions before I have to sort M&Ms by color or fluff up his pillows. J 

(There were so many great questions which came to me through email, and through the blog that I will break up the questions into two posts.  This first post will talk mainly about Robert’s seizures).    

Q:  Does Robert like coming over to our house for the Rocky Road Ice Cream or to visit the animals and us?  (Thanks for the question, Hubby).

Robert:   “I like seeing the animals a lot and I like Rocky Road Ice Cream also so I like both.  And I love both of you.”   (Aw, shucks).

Q:  What does it feel like when you have a seizure?

Robert:  “I’m just out.  Completely.”

Trish:  Robert’s seizures are called “Complex Partial Seizures” in which he loses consciousness (and will fall if he’s standing).  He does not convulse but does twitch his hands or tug at his clothes.  His seizures have changed through the years (for instance, before his brain surgeries, his seizures were the Tonic Clonic type – formerly known as Grand Mal).  

Q:  Can you see or hear anything around you during the seizure?

Robert:  “I don’t think so.”

Q:  Are Robert’s eyes open during a seizure?

Trish:  The first time I was asked this question, I actually didn’t know.  I am so busy timing the seizure, saving dinner plates from falling on the floor or catching him for a soft(er) landing, that I hadn’t noticed.  Now I know:  Robert’s eyes stay open during a seizure.

Q:  Does it hurt when you have a seizure?

Robert:  “No, it does not hurt.” 

Trish:  I have to jump in to say that although the seizure itself does not hurt, he has had plenty of injuries during a seizure that have caused him pain afterward.  He has a very high tolerance for pain which is sometimes problematic in determining whether or not he’s hurt.  When Robert lived independently, he was hurt much more frequently when having a seizure (one reason he no longer lives independently).  During seizures, he has hit his head (several times requiring stitches), fallen on a lamp (severely burning his arm because no one was around), drowned resulting in a three-day coma and has broken his jaw – just to name a few.  So, although the seizure itself doesn’t hurt, the after effects sure can!

Q:  How does it feel before and then after a seizure?

Robert:   Before: “I feel normal.  Sometimes I can feel it coming on.”   After:  “I feel okay.  I feel fine.”

Trish:  When we were talking more about this question, he explained that he isn’t more tired after a seizure.  Then he proceeded to fake a snore (always with the jokes!).   I have noticed, though, that he can be quite tired after a particularly long seizure (or cluster of seizures).  Each person with epilepsy is different but many are pretty tired after a seizure.  

Q:  Robert, do you ever know when you’re going to have a seizure and if you do, can you prepare for it by sitting down in a safe place?

Robert:  “Sometimes I can feel it come on and sometimes I can fight it off.” 

Trish:  Robert went on to tell me that he can prepare for it by sitting down but I have actually never known him to do this.  I don’t know if it’s because his processing of everything is slow or if there just isn’t a lot of time to realize he’s having one and then be able to do something about it.

Q: Based on Robert's having about five over the weekend when you witness the seizures, would you estimate an average of two a day? 

Saturday, March 3, 2012

Epilepsy Q&A: Call for Questions

We've been in the routine of having Robert over to our house most every weekend.  We enjoy having Robert here and he loves being here with us and the animals.  Robert looks forward to coming over on the weekends and even though I tell him each weekend, "I'll pick you up next weekend to come back over" he calls me every Friday to ask if he's coming over and at what time.  Lately, the calls have been coming earlier and earlier in the day – I think he likes coming over!  (My guess is it's the never-ending supply of Rocky Road Ice Cream).  :-)

Robert has always wanted to educate people about epilepsy.  I've become sort of his “PR” person in this regard since he can't use the computer and his ability to communicate is much slower now.  Lately, I've been asked a few questions about his seizures and about epilepsy in general so I will write a Q&A blog post this weekend and want to invite you to let me know if you have any questions Robert or I could answer.  Since he's here (and right now pretty full from spaghetti & ice cream), I'll ask him anything you'd like and I'll post the answers sometime on Sunday (barring any unexpected emergencies). 

As a disclaimer, we're not medical professionals or experts in the field of epilepsy.  We're just people who have lived with it (Robert) or witnessed it (me) our entire lives.  If I don't know an answer, I'll do my best to research the answer. 

My only rule: Don't be afraid to ask questions!  Robert and I want to answer anything you've ever wondered about epilepsy or seizures so please don’t be afraid of offending us.  Also, remember that no question is stupid.  Ask away!

Robert and I look forward to your questions.