Thursday, April 27, 2017

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!    


Sunday, April 2, 2017

Organizing Robert’s Room: A Win for All of Us

It is hard to believe Robert has lived with us full-time for four years! The first couple of years he lived in our family room and used a downstairs half-bath – no tub; no shower. Boy was he clean, though! It’s amazing how clean a person can get just using a shower chair, a bowl, sink and a thousand towels.

I would never have believed we could do that for two years but it worked. Robert was happy living with us and Richard and I just had to be creative and flexible to make it work for us too.

We moved to a one story house almost two years ago which means Robert has his own room and – bonus! – a bathroom with a shower and tub. He is ecstatic having his own room and I cannot believe how much I appreciate a full bath!

I’ve realized how important it was to have the experience of the first two years, though. It really made Richard and I think about how to efficiently and safely care for Robert in a less than optimal situation. Having to give him sink baths every day for two years makes it easy for me to return to those when he is sick.

Robert’s mobility is one of the first things to go when he is sick. He can’t stand up straight, can barely move his legs forward and certainly can’t turn or step backwards (as is necessary to get into the tub chair). So when Robert is sick, as he has been quite often these past several months, we go back to the sink, shower chair, bucket and towels routine. Even if he can’t move well, he still needs to be cleaned up.

When we first moved to our new house, we organized Robert’s room with his input. Having a television was very important to Robert so Richard mounted one on the wall so Robert could easily see it when he was relaxing before he went to sleep at night. It took a while but we finally got Robert a hospital bed so we could keep his legs up to reduce his edema and keep his head up a bit to help with his breathing and coughing.

His room was filled with family photos as well as a couple of collage boards with his get well and birthday cards he has received through the years.

The oxygen machine was set up so it was easily accessible and the charts we keep for him were on a dresser holding some of his “back up” clothes. (The most used clothes hang in his closet.)

After a while, he collected more medical equipment. He needed a nebulizer so we added that to a corner of the room. He was frequently sick so we kept the humidifier in his room as well. Add a standing fan during the summer since his room tends to stay warm as well as a CD player and an iHome player for the music he likes to listen to when he falls asleep. Half the time, we keep his transport wheelchair in his bedroom so he can use that when he is sick (the larger one is too big to easily move from the narrow hallway and turn into the bathroom).

The room was getting a bit crowded!

Robert had pneumonia this past October and again in January. Thankfully, his medical team agrees it is best if we can keep him out of the hospital when he is this sick. There is such a decline after a hospital stay and if we can administer antibiotics and keep track of his vitals regularly at home (need to keen an eye out for Sepsis), then there is no reason to send him to the hospital.

Keeping him home when he is running a fever, coughing and barely mobile is a challenge but his doctors trust us enough to know we will send him to the hospital if he takes a terrible turn for the worse. (It helps to have the most caring Nurse Practitioner on the planet in daily contact – she even gave me her cell number in case I can’t reach her in the office.)

When Robert was sick in January I realized his room had to be reorganized. I was squeezing between his bed and the window in order to take his vitals and the oxygen machine tubing was unorganized and a mess. I was stressed out enough worried about Robert and being hyper-vigilant with his vitals and needed to make things a little easier on myself.

Once Robert recovered and was spending more time in other parts of the house instead of most of the time in his room, I went to work. I put the medical gloves on, grabbed the cleaning supplies and turned on some music.

I meant business.

I cleared out the unnecessary crap in his room. If he didn’t need it, it was gone. Does he need a CD tower with a hundred CDs? Nope. He listens to one or two. Does he need this extra table in the room? Nope. Gone. He does need better lighting so a standing lamp from my office was relocated to Robert’s room.

I reorganized the supplies in his closet, on his dressers and moved the oxygen machine. I hung hooks so I could organize and loop the pesky tubing on the wall to keep it off the floor. I moved the nebulizer, humidifier and blood pressure machine so they were easier for me to access when needed.

I made sure his personal touches were still visible (calendar, bible, photos and collages). We even went shopping when he was better and found a 49er blanket on sale!

Things were looking good.

When he got sick again in March, the room was put to the test! Thankfully, everything was in easy reach and I wasn’t doing gymnastics in order to use the nebulizer or refill the humidifier.

The room fulfilled two purposes: it was personalized to make Robert happy and it was organized to make things a little easier on me.

I’m sure there will be more changes to come depending on Robert’s health and the addition of even more equipment but I know Richard and I can make do with whatever is thrown at us and am confident we can make a few changes when needed to make all of us happy.

It’s important to me that Robert is comfortable and happy but equally important that things are set up in a way that Richard and I, the caregivers, are happy and comfortable too.

Everyone wins. Nothing wrong with that!  

Tuesday, March 7, 2017

What Would You Do Without Taking Care of Robert?

We all say things that come out different than we had intended. “I’m worried about you” sometimes comes out as “Boy, do you look tired!” Everyone does it but caregivers probably hear more than their fair share of ill-advised comments from good-intentioned people.

Trish, Robert and Richard
Robert is sick right now and, like many caregivers, I keep family and friends up to date on how he’s doing through this blog but also on Facebook, Twitter and Instagram. Robert always gives me a big smile when I take his picture and then loves it when I tell him everyone on the computer is wishing him well and thinking about him.

He’s a big ham that way.

I love the comments and support, too. It is comforting to know so many people love Robert and want him to be his excellent self all of the time.

Every now and then, though, a comment slips through that is well-intentioned but makes me bristle. One of my most favorite extended relatives made such a comment and I know he didn’t mean anything by it. He’s got a huge heart and kind of took us three “kids” under his wing once our dad passed away a few years ago. I love him to pieces.

I really think his question deserves an answer, though.  

“What Would You Do Without Taking Care of Robert?”

I know I am not the only caregiver to be asked this question so let me take a minute to tell you.

I couldn’t respond right away because I was giving Robert his medications and starting his nebulizer so his airway would open up a bit tonight and, oh yeah, I had to put his oxygen on him since his wheezing is loud enough to hear in the next room, but here’s your answer:

If I wasn’t caring for Robert, I would get a good night’s sleep. I wouldn’t need to wake up every four hours to take his vitals when he is sick. I don’t even need an alarm to wake up through the night – the worry about sepsis is enough to keep me in a light sleep until it is time to check his temperature and pulse rate. Even when he is “well” I have to wake up at 5:30 a.m. to give him his medications. A good night’s sleep is a luxury for caregivers.

If I wasn’t caring for Robert, I would be able to work a full week without taking time off for doctor’s appointments, physical therapy appointments and meetings at his Day Program or with his social worker.  

If I wasn’t caring for Robert, I would have a lot more money. The briefs we get through his Medicaid? They’re fine for an hour or so but Robert needs more protection than that. We buy him heavy duty briefs so he doesn’t leak through to his clothes when we go out or at Day Program. We buy wipes for bathroom clean-up and gloves for the same purpose. We go through laundry soap like it’s water and, speaking of water, we go through a lot of that too because of the five or so loads of laundry we do every day. He is on a lot of over-the-counter medications which are not paid for by insurance or Medicaid but they are essential to his well-being. Regular dental visits keep pneumonia at bay so we pay for those too. Robert’s social security helps pay for some things but, believe me, I am not coming out ahead when it comes to his expenses.

If I wasn’t caring for Robert, I would visit the ocean with my husband! Sure, we can take Robert on vacation with us (and have – our Disneyland trips are amazing and memorable and I wouldn’t trade them for anything). Occasionally, it would be nice to go away with just my husband though. Respite care for someone that needs as much care as Robert is tough to come by.

If I wasn’t caring for Robert, I probably wouldn’t feel like Norm from Cheers every time I walk into the pharmacy. Between prescriptions and over-the-counter meds, Robert takes 41 pills a day. Forty. One. That’s sixteen different medications that I keep track of because he cannot go one day without any of them.

If I wasn’t caring for Robert, I might have more intimacy with my husband. Sorry to get personal but sheesh, you asked the question. It is not easy to have the energy for extracurricular activities when I am exhausted by the end of the day. I’m lucky to stay awake for a mindless crime drama or two. Sometimes I cannot even watch shows that require a little brain power because my mind just can’t think about one more thing.

If I wasn’t caring for Robert, I would write more! The topics I write about are usually related to caregiving so I would probably have to start writing about cats or something but at least I would be writing. Writing feeds my soul so I know I would definitely write.

Don’t misunderstand me. I love caring for Robert and I know this is a choice Richard and I made. We do not regret it for a minute. I am grateful that I have been able to get to know Robert more than I ever did when we were younger. I am grateful for Robert for teaching me to enjoy simple things in life and to laugh about silly things. I am grateful for Robert’s smile and his ability to declare everything excellent and my food delicious (even when I know better).

I am honored to care for Robert.

But is there anything that I would do if I wasn’t caring for Robert?

You better believe it.

Wednesday, February 22, 2017

Home Alone

Thursday night: Richard finishes packing for his trip to see Airforce Son before his deployment. Taz sniffs the suitcase, tries to get into the suitcase then paces around the house.

He then pees in my office. (Hey, I’m not the one leaving! Pee in Richard’s office!)

I decide to lose five pounds while Richard is gone. It’ll be easy: stop eating junk.

Field trip! 
Friday morning: I take a vacation day from work and Robert is off to program. Richard doesn’t have to leave until early afternoon so we run to Walgreens to get more supplies for Richard’s leg which is not healing and I get a few things for the house. We watch a couple of our recorded shows once we get back home.  

We both eat a small bag of chips while watching the shows.

Hmm. Apparently, I’ll “stop eating junk” later today.  

Friday afternoon: Matt, our future son-in-law (wow – still practicing that one!), comes over to take Richard to the airport.

I have about 90 minutes before Robert comes home.

First, I turn off the television and can’t believe how quiet it is.  

It is glorious!

I go through my to-do list in my head and start with cleaning my office. First, I tackle the filing that has piled up.

By the time Robert gets home, I have most of it done! Who knew filing would make me so happy!  

Robert is home so I break from filing and go through the usual routine when he arrives home (give him treats to give to the dogs, take him to the restroom, put away his lunch box, refill his travel bag with briefs, get him settled in his recliner to relax and watch Family Feud.)

Back to the filing! To my delight, I get it done before dinner time. Woohoo!

Friday evening: I make mini burritos for Robert and decide I will skip dinner since I had a sandwich during my filing frenzy.

Eventually, I break down and eat a bowl of cereal.

Note to self: work on planning better dinners for us.

Friday night: I get Robert in bed after his dessert of Rocky Road ice cream (he’s not the one trying to lose five pounds!). The dogs and I snuggle and watch television. How is it they can still hog the entire bed even when there is one less person in it?

I set my alarm for 6:00 a.m. instead of the usual 5:30. Robert’s first morning medication is at 6:00 so I can just get up and give him meds.

I’m going to sleep in!!

Saturday morning: I wake up at 5:15. Sigh.

I let the dogs out, make some decaf coffee, feed the dogs and, at 6:00, give Robert his meds. He goes back to sleep; I pay bills and work on our taxes.

This paperwork puts me behind on my cleaning goals but I get some cleaning done before Robert wakes up.

The house is quiet except for the noise of the washer which is constantly running in this house.

Robert wakes up before I can get much cleaning done but at least I finish two rooms.

Saturday afternoon: After I giving Robert his bath and settled in to eat his breakfast, Rachel comes over to deliver an Iced Chai! Taz, Oz and even Taffy go crazy with happiness seeing her. Robert lights up when she comes over, too. We discuss wedding plans for a while then she leaves to meet a friend.

Robert, the dogs and I say our goodbyes and I close the door. Robert says, “What is her name again?”


“That’s what I was going to say.”

He enjoys her visits even if he doesn’t always remember her name.

Robert watches some Family Feud and works on his puzzle book for a bit. I get back to cleaning!

Saturday late afternoon: I take advantage of the break in the rain and take Robert to CVS. He has meds that are ready and I need more furniture polish.

On the way home, I pick up dinner: salad for me; turkey and mac & cheese for Robert.

That should make up for the mini Cadburys I couldn’t resist while at CVS . . .

Saturday night: Robert gets Rocky Road ice cream two nights in a row! We do his usual bedtime routine. I print my “bucket list” spreadsheet of every single Best Picture winner to see which one I should watch tonight.

I text Rach that I really want frozen yogurt. She offers to get it for me but I decide I better not since I remember those mini Cadburys I ate earlier.

I’m hoping I can lose at least one pound at this point.

Back to my spreadsheet. I pick “Ordinary People.”

Good thing I didn’t have FroYo. I have a pit in the bottom of my stomach throughout the entire movie. I realize it is best I watched it now instead of when it came out in 1980 since my family was going through its own dark period at that time and it really would have been too much. 

Sunday morning: I wake up at 5:15 again. Seriously?!

Back to cleaning.

Richard texts me: “I think I may have to change the leg wrap. I keep getting a scent of infection. But it could be the hotel room.”

I bust out laughing but eventually call him to be sure he is okay. I know he is a little panicky about his leg so we talk and decide the smell actually is the hotel room – probably from all the wet, snowy clothes people track in from the North Dakota winters.

I turn on the Sunday news shows while doing laundry and cleaning.

The house is getting a bit too quiet.

Sunday afternoon: Robert sleeps late again so I am making progress on the cleaning! The dogs track in mud after I mop and since it appears the rain won’t stop until July, it’s a futile attempt to actually keep it clean. The floors are at least clean for five minutes – I’ll take it!

I make Robert an omelet for his breakfast/lunch. Usually, he gets oatmeal but thought I’d give him something special today.

Rach offers to pick up anything I need from Target! Wonderful! This saves me from having to take Robert out in the rain. I mobile order drinks from Starbucks for us so she delivers groceries and a mocha (decaf, of course). That’s my girl!

Richard texts me that he is at the Minot, North Dakota “12 store mall” with Christopher and his girlfriend. Richard is sitting while the “kids” check out the stores.

I polish off the mini-Cadbury eggs. It’ll be a miracle if I don’t gain weight this weekend.

Sunday evening: The wind is picking up and I am getting a little concerned about the “atmospheric river” making its way toward us tomorrow. I’m going through an evacuation plan in my head. I have Robert’s meds all ready to put into a bag if needed. Important docs are all in one place which will be easy to grab if we have to leave. It’s a very remote chance but we do live in a flood zone so I need to plan for worst case scenario. It’s my specialty! J

I finish the laundry, feed the dogs and make Robert a sandwich for dinner. I have no inspiration for dinner at all! I am still full from those darn delicious Cadbury eggs so I didn’t eat.

I keep the streak alive and let Robert have ice cream again tonight! He’s not going to know what to do once we get back on the every other day schedule.

For some reason, I am very tired tonight. (Probably from my lack of good nutrition.)

I plan to watch another Best Picture winner but haven’t decided which one yet. Maybe the Godfather!

Richard texts that his leg is “in bee hive pain.” That’s no good.

Monday morning: I wake up at 5:45, probably because I stayed up so late watching The Godfather. I can’t believe I’ve never seen that movie. I am excited to watch Godfather Two!

Robert sleeps in again so I finish all the cleaning. The house is completely clean (well, except for the paw prints from the mud)!

I keep the news on to keep an eye on the approaching storm but also because the house is way too quiet.

Monday afternoon: Rach offers to go to the store for me. It’s raining outside but I am determined to take Robert out anyway. I load him in the car and he doesn’t complain at all about the rain. Probably because I promise him a chocolate shake on the way home. That’ll do it every time! I see Rach and Matt at the grocery store. How fun!

Monday evening: It’s pouring outside so I give Robert soup and salad for dinner and I eat a salad. Finally! Real food!

Monday night: Robert is in bed and I rent Godfather Two. Good grief! It’s three and half hours long?! I make it through an hour and then have to go to sleep.

Tuesday morning: Robert has program today and I have to go to work. Richard is due home later tonight. The dogs will be so lonely today without any of us!

Tuesday afternoon: I leave work early in order to be home for Robert. I make him a salad and pasta for dinner. Matt is kind enough to pick up Richard from the airport.

They get back home and Taz and Oz go crazy! They are excited to see Richard but Taz can’t get enough of Matt. Richard excitedly tells us about his trip and I know this is something both he and Christopher will always remember.

The house is full and noisy and I love it.

As for those five pounds. . . well, let’s just say I’ll try again another time.