Looking for Answers

Something is going on with Robert that I haven’t yet figured out. 

During the eleven years Richard and I have cared for Robert, there has been a dramatic decline in his functionality and mobility. It isn’t a straight downward decline but more like going down a staircase. Robert is stable for a while, then gets sick and loses some functionality and goes down to another step. He stays at that step for a while then gets sick again and we repeat the process. 

In the last eleven years we have gone down a lot of steps. 

Keeping Robert at baseline means doing my best to prevent him from getting sick. Seems easy enough but he gets sick not just because he picks up germs from other people but because he has a swallow disorder and easily aspirates which turns into pneumonia (which leads to another step down the staircase). 

Robert’s bouts of decreased mobility are usually explained by three things: the flu, aspiration pneumonia or as an indicator of seizures (the prodromal phase).  

He has very specific symptoms when he is getting sick. Increased pulse rate, decreased blood pressure, lots of confusion and weakness making it difficult to stand, walk or even transfer. If he has the flu or pneumonia he also runs a fever. 

When his seizures are coming he has a high pulse rate and he’s confused. 

Once we figure out what is causing these symptoms we can move on to treatment (rescue meds for seizures and usually the hospital for aspiration pneumonia or the flu since that usually turns into pneumonia). 

I love puzzles but this can get complicated. 

Robert started having worsening mobility and confusion about a month ago. He is acting just like he always does when he is getting sick. 

However, his vitals are fine. His blood pressure is lower than normal but I attributed that to his overall weakness. 

Since March, Robert has left the house only for physical therapy and for his flu shot so I knew it was highly unlikely he picked up COVID-19 or the flu. 

He has had more frequent aspirations and choking episodes but he would run a fever if that was turning into pneumonia. 

He had seizures one day during all this but not since. 

There is something wrong but it’s not his usual three issues. 

His GP moved back east and Robert was not set up with a new doctor yet so I reached out to his movement neurologist. She keeps an eye on his parkinsonism and knows how fragile he is. She speculated that he may have a urinary tract infection (UTI). This would explain the confusion and the mobility issues! She’s a genius! Robert would be good as new in no time! 

Catching the urine was a whole other issue but I finally got some. Just a little but enough to run the test. 

That came back normal. 

Ugh! I was really hoping for a UTI! (I know that probably sounds ludicrous to anyone other than a caregiver but I just wanted an explanation.)  The neurologist said it is possible “this represents progression in his underlying neurodegenerative process.”

No. That’s not what I want to hear. I want to find a problem that we can fix. 

I was so frustrated that we didn’t have any answers that I asked his neurologist to run bloodwork to see if he had an indication of an infection and also asked for another urinalysis. Maybe if I got more urine for the test it would be more accurate. She obliged. 

In the meantime, I set Robert up with a new GP. 

I took him in for the bloodwork. Later that day, I was able to get a full cup of urine! I was never so happy to see so much pee! I rushed to the lab and got there fifteen minutes before they closed. PLEASE let this give us the answers we need! 

The bloodwork came back mostly normal. The urinalysis took longer but came back Friday night. There were quite a few abnormal readings but the neurologist said it wasn’t a UTI and handed me over to the new GP to follow up. 

In the meantime, Richard and I have had some very difficult days trying to get him up and around (Robert is a big guy). Richard and I struggle to move Robert around. It takes both of us to get him out of bed and into a wheelchair then over to the bathroom. I’ve given up on dressing him in anything other than his pjs. (Luckily, we’re in the middle of a pandemic and wearing pjs all day every day actually isn’t all that unusual now.) 

Since we can’t risk hurting ourselves we decided to try new routines and found one that is working! We are changing Robert’s brief in the morning while he’s in bed. We give him breakfast and have him drink water and juice and watch television to wake up a little bit before trying to get out of bed. That is helping! He is definitely stronger and more mobile after eating and drinking. Plus, he has a newfound love of Star Trek and who doesn’t love breakfast in bed?! 

It was such a relief to find something that makes even a little bit of a difference. Just making this one change helps us so we are not hurting ourselves and it helps Robert because not being able to move is getting frustrating for him. 

We still have to find the underlying issue and my hope is that it is something that can be fixed. I worry about kidney damage from all of the medications he is on but hope it’s something simple like dehydration, which we can fix. 

The puzzle of Robert continues but so does our persistence in finding answers so we can slow the inevitable steps down that darn staircase. 

The Caregiving Snowball

It’s hard to tell when you’re in what I call the caregiving snowball.

Here’s how it works: you have survived the beginning of caregiving where everything is whirlwind: doctors’ appointments, diagnoses, documents to create, decisions to make but then things get pretty steady. Things are certainly not easy but steady enough to establish routines with only occasional hospitalizations or emergencies.  The length of this period is as varied as there are caregiving situations.  Some skip it altogether and go straight to the snowball. 

The crew happy to be home

The snowball is when things get crazy. 

There are possibly several falls, repeated illnesses and multiple hospitalizations or stays in a Skilled Nursing Facility. The rebounding isn’t quite like it used to be. It takes longer to recover from pneumonia or a fall.

The days of routine look pretty good right about now. 

Sometimes I wonder if we are in the snowball period with both Robert and Carol. I think it’s really impossible to tell when a caregiver is actually in it but, boy, it sure feels like it sometimes.

We have to celebrate with cake!

Robert has gone from getting sick with bronchitis or pneumonia one or two times a year to four to six times a year. It is getting more difficult to treat him at home when he becomes ill because his mobility goes out the window and he goes downhill so quickly. Not to mention the oral antibiotics that his doctors prescribe are losing their efficacy. He requires IV antibiotics when he’s this sick and that’s something we can’t do at home.

Recovery takes much, much longer. He may end up in the hospital for a week but then needs a few weeks in a SNF to get his strength back. Even when he’s back home, there is a noticeable decline.

The snowball to me means longer recovery times and a steady, permanent decline in Robert’s overall health and mobility.

With Carol, she may have more frequent falls and hospitalizations but she seems to bounce back without an additional decline. At least, if she has a decline in mobility it’s more minor than I have witnessed in Robert.

Freedom!

Both Robert and Carol are back home and the caregiving snowball has been on my mind. They both got home on a Thursday and by Friday, Robert couldn’t walk, had a very tight cough and was exhibiting his usual symptoms of getting sick. His vitals were good but I was concerned, especially since he had choked/coughed a lot during the welcome home dinner!

Thankfully, Robert had a scheduled appointment with his pulmonologist who did an ultrasound to see if there was any fluid lurking in his lungs and agreed with me that antibiotics would help stave off any possibility of an infection. A couple of days of rest and the antibiotics as well as his more aggressive nebulizer treatment (three times a day instead of the usual two) seems to be working. Robert is moving around a bit better but we’re not pushing it. He is using the wheelchair more than usual but we are also letting him walk with the walker for short distances so he can build up his strength.

Sleeping but happy

Carol is sleeping quite a bit but Richard is making sure she is taking her medication and drinking water as well as eating a little something. She eats then goes back to sleep. Sometimes this is an indication she has something brewing but we are chalking it up to not getting good sleep in the facility. (Because we are going to think positive!)

So I don’t know if we are in the caregiving snowball yet or not. I’m happy to have Robert and Carol home, just where they belong and whether we are or not in the snowball really doesn’t matter since Richard and I will move along this journey where it leads us.

I am grateful to have Richard beside me during this crazy caregiving experience and, if we are in the snowball, well – we both love a good snowball fight so I guess things will work out just fine.

My co-pilot

Be Careful What You Ask For

Unbelievably, I received a request to complete a survey about Robert’s recent stay at Gramercy Court.  A day later, I received a statement showing a past due balance for the amount I paid (and was later refunded) for Robert’s stay.

Oh boy! Corporate America – form letters will be your downfall!

I took the opportunity to send a short email to the President and CEO of Generations Healthcare which is the large corporation that owns and operates Gramercy Court.

Good afternoon, Mr. Olds,

I received a letter asking me to complete a survey about my brother's recent stay at Gramercy Court in Sacramento.  I also received a bill for a past due balance.

Obviously, there has been a huge mistake in sending me both of these items which really shouldn't surprise me given the recent, horrific experience my brother had while staying at Gramercy.  I had hoped the experience was safely tucked away in the back of mind as a nightmare never to be relived again. 

Apparently you are unaware of this but, because the experience was so horrible, I was refunded the amount I already had paid.  I do not owe anything.  Please remove this outstanding balance on my account. 

In addition, the experience my brother had while staying at Gramercy for only four days should not be experienced by anyone.  In fact, it was anything but "warm and helpful" as stated in your letter inviting me to take a survey. 

You are welcome to read about Robert's experience here and about my follow-up with the Dept of Health Licensing Division here. I'll cut to the chase: The Dept of Health found deficiencies in your facility which I hope have been corrected by now. 

Further, I hope that you do truly believe "caring for the sick, the elderly and the infirm is a special and sacred stewardship." Unfortunately, the quality of care received by my brother showed a complete disregard for basic rules of care let alone the lofty goal of "sacred stewardship."  (I am happy to send you the cringe-worthy photos of the bruising on my brother due to the lack of attention paid to him during his stay.)

You, sir, have a long way to go to realize your goals of quality care. 

I am happy to discuss this matter in more detail with you in order to help you improve the care received by others in your facilities.  As far as my brother is concerned, Generations Healthcare will not be caring for him ever again. 

Thank you for your time.

Advocacy for the Win!

Whoever says the government doesn’t act quickly has never met the Licensing & Certification Program (L & C) within the California Department of Public Health. 

On July 12 I filed several complaints with the L&C regarding Robert’s respite stay and by July 31 they validated my complaints!  (At least a few of them.)

Advocacy for the win!  (At least a partial win.)

The investigation involved reviewing my claims, the photos of Robert’s injuries and documentation of the incidents, interviewing me, visiting Gramercy Court (the Skilled Nursing Facility involved), reviewing their files and conducting interviews at the facility.

When I first talked to the investigator, I was not sure how the investigation would go.  She started with my first complaint of Robert being injured due to two falls in four days and not being properly watched.  Her first comment was that Skilled Nursing Facilities are understaffed and it is unrealistic to expect someone to be watched 24/7. 

Are you kidding me?  The licensing agency is excusing a SNF because they are understaffed? Isn’t that a problem to be fixed?

Rach, Robert and Trish (l-r)
at the State Fair for some fun

Of course, I took a breath before saying anything to her.  (I am only a hot-head in my own head.)

Yes, I understood how understaffed SNFs are; however, I think it is reasonable to expect some sort of plan to minimize falls for a person that is a fall risk.  I explained Robert is in a wheelchair and needs assistance in transferring and in the restroom.  I told the investigator that this was made clear when I admitted Robert to the facility. 

She then explained how the investigation works and acknowledged getting my photos and follow-up documentation.  She said they will investigate the falls and the procedures the SNF has for preventing them and handling of them if they do happen.  She said she will look into why my request for the fall reports was delayed and will investigate the medications issues.

She explained they have no jurisdiction over my getting a refund.  I knew that but thought I’d throw it in to my complaint.   (Oh, by the way, after promising me a refund, Gramercy has not sent me one.)

The investigator explained that I would be told the outcome of the investigation once it has concluded. 

While she went to work on the case, I kept an eye on Robert’s bruise.  It had developed a hard lump under the skin which the doctor was slightly concerned about.  The doctor ordered an ultrasound so I kept Robert home from his Day Program and we went to the ultrasound.   Robert was having a terrible cluster of seizures that day on top of his ultrasound appointment so that was a not-so-excellent day (contrary to Robert saying it was). 

Robert is feeling excellent
and loving the State Fair!

Thankfully, Robert’s seizures eventually stopped and the ultrasound did not show any internal damage, bleeding or clots.  One less thing to worry about. 

I tried once again to ask for my money back.  My email was left unreturned and no one was “in the building” to accept my call. 

I knew filing a complaint would most likely result in me not getting my money back but I did not want that to stop me from trying to get changes made at the facility.   Robert was only at Gramercy for a short stay so the point of my complaint was to force them to make changes so this does not happen to another resident, whether they are short- or long-term. 

When the investigator called on July 31, she explained they found two deficiencies from their investigation.

1.   A fall risk assessment was not done upon admission nor was a fall risk plan instituted upon admission even though they had notice that he was a fall risk;

2.   A care plan was not developed after the first fall;

A few days after talking to the investigator, I received their formal letter with their findings.  The letter states they completed the investigation and “substantiated your complaint.” Further, “L&C validated the complaint allegation during the onsite visit” and the provider will need to document “their plan/s of correction.”

Yes!  I knew they could have done better!  Changes will have to be made!

I will make changes, too, when taking Robert for a future respite (although I have soured on that facility so he will not be returning there).   I knew admissions seemed disorganized but now I know a few more things to look for when taking Robert in for a respite stay. 

As far as the complaint about the medication schedule, the investigator could not find that the medication schedule was attached to the doctor’s orders originally faxed to the facility.  My schedule was in Robert’s chart but the medications were only sent in a list from the doctor without specific times to be given.  I did not see a copy of the doctor’s orders but know they had the schedule.  I think they only attached his medication list and not the schedule the medications should be given. 

This whole thing was a learning experience for me.

I know better than to think the nurses will follow the schedule I have worked so hard to develop with his doctors unless it is included in the doctor’s orders.   Robert’s doctor was very upset the nurses didn’t follow my schedule or even question it when it didn’t correspond to her orders. 

But I know this! I know this is how they work! I have gone through this before and absolutely should have double-checked that the orders included the medication schedule. 

Definitely a learning experience for me. 

At the next appointment, I will talk to Robert’s doctor so she knows the nurses will not deviate from doctor’s orders – regardless of information they have from the caregiver.  She is a terrific doctor and does so much for her patients and their caregivers and I am sure she will appreciate knowing this and change the way respite orders are written for her patients. 

Now that my complaints have been validated, I will try again to get my refund.  Not only was the care given not what I had paid for but I picked Robert up early so he wouldn’t continue to be injured! I paid for more nights than he was actually there. 

(Update: The refund came in for the full amount of the stay and I didn't even have to ask again.  Not surprisingly, the check was dated the same day as the conclusion of the investigation.)

Refund or not, this was a win.  A WIN!  Changes at Gramercy have to be made because problems were brought to their attention and care for other residents will be improved because of these changes. 

Advocacy for the win!

Epilepsy Awareness and Advocacy: Interview with Coach Jerry Kill

I don’t know how I got so lucky! Coach Jerry Kill’s marketing team recently contacted me and asked if I was interested in interviewing Coach Kill.

Coach Kill, the former head coach of the Minnesota Gophers?

Coach Kill who continued his high-profile job while seizures very publicly besieged him?  

Coach Kill who became an inspiration to those with epilepsy and those of us who care for someone with epilepsy?

Yep, that Coach Kill.

You want me to interview him?

Pinch me! I must be dreaming!

Typically, I run interviews throughout the month of November to bring readers the stories of those with epilepsy and those caring for someone with epilepsy. November is officially “Epilepsy Awareness Month” but, as anyone with epilepsy knows, epilepsy really doesn’t care what month it is! Seizures happen whenever and wherever.

Even to a head coach on the sidelines of a nationally televised football game.

This interview cannot wait until November! I so appreciate Coach Kill taking time out of his busy schedule (on a Sunday, no less!) to talk to me about his epilepsy and how he is using his high-profile platform to help others.  

My interviews are typically written but Coach Kill wanted to have a phone interview instead. I quickly agreed and had a wonderful conversation with him. He is easy to talk to and didn’t even mind that I am a Huskers fan. In fact, he said he has lots of friends who are Huskers!

Robert’s Sister: Coach Kill, thank you for taking the time to answer a few questions about your epilepsy and advocacy work. When were you first diagnosed with epilepsy?

Coach Kill: I was officially diagnosed with epilepsy in 2006. I had a few things that happened before that. Nobody knew too much about it.

Robert’s Sister: You also had cancer. Did the cancer bring on your epilepsy?

Coach Kill: No, the cancer didn’t have anything to do with it. It was coincidental that epilepsy was caught around the same time.

Robert’s Sister: Being diagnosed with epilepsy as an adult can be a life-changer. Tell me how you dealt with the diagnosis.  

Coach Kill: I was the head football coach at Minnesota at that time and stayed for five years after the diagnosis. It is hard to balance out life beyond football. I didn’t sleep a lot and didn’t eat right. All the things you aren’t supposed to do to control seizures, I did. I am wired to take on tough jobs but the body can only take so much.

Robert’s Sister: You became an inspiration to many (including me) after demonstrating such perseverance. What gave you such strength to keep going? You must have a very strong support system.

Coach Kill: I am wired to keep going and I do have a great support system. Kammie Powell – one of our athletic trainers – knew what to do on game day if something happened.

My wife, Rebecca, and kids, Krystal and Tasha, have been there through all of it. I have the right people in my corner.

Jill Gattone (of the Epilepsy Foundation) introduced me to Dr. Brien Smith who is a neurologist in Grand Rapids, Michigan. I had hit rock bottom. I never missed a game and then I had 16-17 seizures in two to three days. Dr. Smith did a great job in getting my seizures under control.

Dr. Patricia Penovich – she’s with the Minnesota Epilepsy Group– also partnered with Dr. Smith to help me.

I haven’t had any seizures in about a year and a half.

Robert’s Sister: What type of seizures do you have? My brother has Complex Partial Seizures (even after two surgeries and loads of medications).

Coach Kill:  I have both the grand mal or tonic clonic seizures and the staring (absence) seizures.

Robert’s Sister:  What treatments have helped? 

Coach Kill: Definitely medication but also exercise and diet and I am sleeping a lot better. I used to have trouble sleeping and would only sleep two and a half to three hours a night. I am sleeping a lot better now.  

I still communicate with Dr. Smith even though I am now in New Jersey. I am in the process of finding a doctor in New Jersey and Dr. Smith is helping me with that.

Also, I am active in helping other people with epilepsy and have my own foundation.

My wife and daughters have been through it all with me.

Robert’s Sister: Did your family treat you differently after your diagnosis?

Yeah, my wife probably did. She was very cautious about what I was doing, worries and is hyper-alert. She is very worried about me having a seizure at night. If I am on the road and don’t call for a while, she worries.

My wife was part of the reason I considered leaving as head coach. I was tired of putting my family through it all. Once I left the coaching position at Minnesota in 2015, I basically did my own program: exercising and eating right. We went to Florida and I did some speaking, wrote the book (Chasing Dreams: Living My Life One Yard at a Time) and laid low. I realized I was very exhausted.

Robert’s Sister: What are you up to now?

Coach Kill: After a while, I went to Kansas State as an Associate Athletic Director and am now Offensive Coordinator at Rutgers. I am enjoying doing what I am doing and my body is able to handle it. I didn’t want to give up what I love to do but being a head coach – it’s a lot different than being an assistant coach. I had to make a compromise.  

Robert’s Sister:   What is the biggest impact epilepsy has had on your life?

Coach Kill: The other people that have it. I have been fortunate that I can still do what I love to do. So many people cannot. I had no idea about all the issues. I had no idea that 1 in 26 have it – no idea. I didn’t even know what an epileptologist was. Just the awareness and the struggles that a lot of other people with epilepsy have. Even prestigious people in high ranking positions in companies who don’t want to share they have it. Lots of people worry they might lose their jobs. I am lucky that I have a platform but am inspired by others that don’t have a platform and still keep going.

Robert’s Sister:  Please tell us about your book Chasing Dreams: Living My Life One Yard at a Time. What made you write it?

Coach Kill: I had the time and could write it on the beach with my co-author, Jim Bruton. Jim kept on me about it. It is something where I could talk about football, my life, epilepsy, cancer and my views on certain things. All money raised has gone to my two foundations (Coach Kill Fund and the Chasing Dreams Coach Kill Epilepsy Fund).

Robert’s Sister: You have become a vocal advocate for those with epilepsy. Tell us about your foundations and your campaign to #TackleEpilepsy.

Coach Kill: The Coach Kill Fund is based in southern Illinois and we have teamed up with Southern Illinois Healthcare. Many people with cancer in southern Illinois need to go to St. Louis for treatment which is quite a distance.  The Coach Kill Fund raises money to help if a person has to go to St. Louis for a few days. People apply for funds and the money gets to them in just a few days. The money helps cover costs for hotels, gas expense, medications, travel, childcare, etc. and even funerals.

The Chasing Dreams Coach Kill Epilepsy Fund is affiliated with the Minnesota Epilepsy Foundation. Money goes toward Camp Oz (a camp for kids with epilepsy) and to the Seizure Smart Schools program.

Robert’s Sister: Is there anything else you’d like to say?

Coach Kill: One of the best things that has happened to me because of all of this happened last night at our spring game. Five years ago, someone from Pennsylvania contacted me about his son who had epilepsy and I sent him an autographed picture. Last night after the game, a kid came up to me and said he wanted to shake my hand. He said he was the kid I sent the autographed picture to and he showed me a photo of it on his phone and told me how much it had meant to him. That made my night. It was better than winning any national championship.

Well, Coach Kill, you made my day and I am sure you have many, many other fans. Thank you for your advocacy and your generous spirit. I didn’t think it was possible but I am even more inspired by you than I was before! It really is amazing how even the smallest kindness can make a huge impact on someone. Thank you for all you do!  

Please be sure to check out Coach Kill’s book as well as his foundations.

While I am still a die-hard Huskers fan I will definitely start rooting for Rutgers too!    

Trish

Epilepsy Awareness Month: Grateful and Inspired

November is the “official” Epilepsy Awareness Month but epilepsy and seizures and caregiving don’t stop just because it is December. People live it every day, every month, every year.

Every moment.

The people I was able to interview this year know what I am talking about. These people have epilepsy or care for someone with epilepsy and somehow find time to also advocate and educate others. They still have time to follow their dreams, go to college, get advanced degrees and continue to live their lives day in, day out.

Epilepsy does not stop these people. There may be stigma and lack of awareness about epilepsy or what to do when witnessing a seizure but people who have epilepsy in their life don’t let that hold them back.

These people have grit!

I absolutely loved following up with the people I interviewed in November 2012. These people and their stories of resilience, persistence and tenacity are as inspiring as anyone could be.

I also was delighted to interview people I missed the first time around! These people are just as resilient, strong and persistent in their fight against epilepsy. (And, heads up, you know I’ll email you for a follow-up interview in four years). J 

My heart hurt to read the struggles that so many people face with epilepsy but I was also overcome with emotion when these same people persevered through terrible obstacles.

I was so inspired by these people who think of others, are kind and who do not give up. Ever.

Below is a brief recap of these exceptional people. Please click on their name to read their full interview.

Cathi Shaw, author and mom, has found that delicate balance of caring for her daughter who has epilepsy without being overprotective and is, in fact, extraordinarily supportive. Cathi has watched her daughter struggle with reactions to medications, start her own non-profit and win the Terry Fox Humanitarian Award.

Michelle Reichartz was first interviewed in 2012 and she has since moved to be closer to family, got her Master’s Degree and plans to pursue her Ph.D.! Epilepsy definitely does not stop this woman from following her dreams and finding success along the way.

Tiffany Kairos is a strong, relentless advocate for those with epilepsy. She educates others, shares her personal story and was nominated for the WEGO Health Awards, Best in Show: Twitter – which she won! Congratulations, Tiffany! Oh yeah, she’s also a badass.

How many people start a non-profit to help support families with children who suffer from epilepsy? There are several. How many do so without personally having a child with epilepsy? Probably one: Susan Noble. Susan and her foundation, Epilepsy Warriors, are doing great work for families with a child who has epilepsy.

Eileen Murray’s story struck a chord with readers. She cares for her son, Will, who at 23 years old has had epilepsy most of his life. They have tried numerous treatments for Will which is all too common of an experience for families. Will is a gentle soul with a fantastic sense of humor and, as Eileen shares in one of her stories, a heartwarming empathetic side.

The absolute brutal side of epilepsy is shared in painful detail by Christy Shake. Christy was interviewed in 2012 and she graciously gives us an update on treatments and progress over the last four years. Her personal blog, Calvin’s Story, is a must-read.

Teresa Stallone not only has epilepsy herself but cares for her mom who also has epilepsy. We followed up with Teresa from 2012 and do you know what her favorite moment has been these last few years? Finding a compassionate dentist and getting much needed dental work done. (Do not even get me started at the lack of adequate dental care for those who cannot afford it yet need it most. Anti-seizure medications can do horrible damage to teeth and general oral health.)

Sometimes epilepsy takes away our loved one, too. While epilepsy was just one piece of a whole host of issues that Mike and Lorraine Kimball’s son Mikie had, his health did not define who he was – or who they are. Mike and Lorraine are devoted parents and gave Mikie lots of love and protection in his 43 years here.

Then there is Connor Doran who has inspired me since I first saw him on America’s Got Talent. Connor continues to follow his dreams in spite of his epilepsy and the medication and epilepsy induced side-effects and has graduated with an AA, found the love of his life and was recently accepted to the University of Puget Sound (he had his fingers crossed for such a positive outcome when we interviewed him.) Congratulations, Connor!

Leslie Hammer’s story is one that rips my heart apart. She has overcome so many obstacles and sometimes that means just moving one foot in front of the other. But she does it and she does it every single day. Epilepsy needs a cure so Leslie and people like her can just be given a break.

Amy Schlenker has had to make some very difficult decisions in order to get her daughter, Paige, the treatment she needed to control her epilepsy. Can you imagine having to put your eight year old through her third brain surgery? And this one was a complete right modified functional Hemispherectomy! But it worked! I am not really in charge of these things but I hereby declare Amy Schlenker Mother of the Year!

Of course, I had to interview my brother, Robert Wright. I was just today having a conversation about Robert and his “excellent” attitude. Robert has somehow managed to live in the moment and to be content and happy with simple things. He also stays optimistic and is convinced when I interview him again in four years that “Probably I’ll get healed completely.” His faith is unwavering and he inspires me every day. I still have a lot to learn from him.

I also interviewed my husband and co-caregiver extraordinaire. 

Richard Kreis is just what Robert needs: a fellow jokester and Mr. Fix-It. I am delighted every day when I hear the two of them laughing and joking around. It drives me nuts sometimes when I’m trying to get a word in edgewise or talk about something serious but I couldn’t care for Robert without Richard. Plus, he’s a relentless advocate for caregivers!

Laurie Adamkiewicz is another mom who deserves Mother of the Year (for several years running now). Since I’m not really in charge of that award, I think it’s okay to give it away to several people. Laurie takes care of her son Kyle and has seen him and their family through some very difficult times. She was happily caring for two sons when one, at age six, started having seizures and ended up having up to 100 a day. That is life-changing. Laurie is a devoted mom and strong advocate and also a very talented photographer. Check out her website!

My last interview was with me (which is quite a trick!). I mainly wanted to answer the same questions I asked of others and to share how Robert has changed in the last four years. There has been a significant decline in his health but Robert lives with us now and it has been the best possible solution for all of us.

I am extremely grateful to have been a part of these interviews and to share these amazing people with you.

If you ever need a reminder of some of the inspiring people in this world, please re-read these stories and know that if you have epilepsy, you are not alone. If you care for someone with epilepsy, you are not alone. If you advocate for those with epilepsy, you are not alone.

Please share their stories so others know they are not alone.

Let’s change how people think about epilepsy and let’s do this together.

Epilepsy Awareness Month 2015: A Sea of Advocacy

Our recent trip to the Epilepsy Awareness Day at Disneyland brought us face to face with many wonderful and inspiring advocates – all full of life, laughter, education and a passion for managing and curing epilepsy!

Epilepsy Awareness Day at Disneyland not only is a way for families affected by epilepsy to connect with others while being at the Happiest Place on Earth, it is also an educational opportunity.  EADDL was started three years ago by Brad Levy and his wife, Candy, along with the enthusiastic support of pediatric neurologist, Dr. Diane Stein. These three are tireless advocates not just for great epilepsy care but for a cure for epilepsy.

Dr. Diane Stein and Robert

While I did not have an opportunity to meet the Levy family (next year for sure!), I did meet Dr. Stein as did Robert. They became fast friends and we promised to participate in the International Epilepsy Day which is February 8, 2016. 

Fact: There are approximately 65 million people world-wide living with epilepsy (Epilepsy.org). 65 million people affected by epilepsy – not even counting families, friends and caregivers!

There were so many advocates at EADDL!

Julie Hutchison and
Robert in a  Mickey Mouse nose

Seeing Julie Hutchison, founder of the Chelsea Hutchison Foundation, is a delight for me (and obviously Robert). Julie’s foundation is a founding partner of the EADDL and has raised money to bring several families to the event each year. Also, through their advocacy, CHF recently gave their 84^th grant for a seizure response dog! Julie’s story is one of resilience yet is heartbreaking. Julie and her husband, Doug’s beautiful daughter Chelsea died from SUDEP.  They walk through that unfathomable grief to help others. Julie shared with me during one of our chats, “It is the reason I get up in the morning.” That kind of advocacy is an inspiration.

Julie is an inspiration.

Fact: Epilepsy is also a disease that can be deadly.  According to CURE Epilepsy, “It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents." 50,000! This number stuns me every time I read it.

The EADDL Educational Expo brought a day of speakers and a large conference room of advocates and exhibitors. The Expo was full of a wide variety of organizations sharing information (medical professionals, dietary experts, medical technology companies, service dog companies and many, many others. You can see the complete list here.) 

EADDL 2015: Expo Room

Another EADDL founding partner, the Danny Did Foundation, was at the Expo. CURE Epilepsy was there. The Purple Peace Foundation was there. Livy’s Hope, Sophie’s Journey, International League Against Epilepsy all were there.

EADDL 2015: Expo Room

Families visited each booth soaking up the information so they can be the best advocate they can. 

Fact: While two-thirds of people with epilepsy are able to find good seizure control, the fact is one-third do not (Epilepsy.com).  That is one-third too many!

Many advocates and organizations were borne out of the loss of someone to epilepsy or have been affected by epilepsy in some way and are advocating for the cure or management of epilepsy.

All an inspiration. All doing something to manage or cure epilepsy.

The day in Disneyland did not have had exhibitor booths but there were probably a couple of thousand families enjoying the park in their EADDL purple shirts. Each one of them an advocate in their own way for their friend or loved one with epilepsy.

Watch out, Epilepsy! You cannot win against this much advocacy.  

EADDL 2015: A Sea of Advocacy