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!

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!

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)!

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.