Thursday, December 1, 2016

Epilepsy Awareness Month: Follow-up Interview with Trish

Boy is it ever hard to interview yourself! J

I did it four years ago and wanted to participate again this year in the follow-up interviews. Four years ago I posted one interview every day during the month of November for Epilepsy Awareness Month and wanted to do the same this year with a mix of new interviews and follow-up interviews.

Trish, Robert and Richard
(left to right)
I didn't quite manage to do one per day during the month of November this year but am going to cut myself some slack and not feel too bad about it (and, as you may have noticed, it's December and we still have an interview or two!). 

My hope is we can run more interviews throughout the year. After all, we need to keep talking about epilepsy year-round! 

Let’s get straight to the questions:

Robert’s Sister: I am curious what changes have occurred in the last four years. Please remind us how epilepsy has affected your life.

Robert has had uncontrolled epilepsy his entire life. He has complex partial seizures. He also has been diagnosed with Dysphagia (a swallow disorder), Parkinsonism (a movement disorder) and Restrictive Lung Disease making him prone to pneumonia.

Robert’s Sister: What is the most significant change in your life since our last interview?

Robert moved in with me and Richard at the end of March 2013. It’s hard to believe it’s been three and a half years! Also, in June 2015 we moved from our two-story house to a one story house with a bedroom and bathroom (and tub!) for Robert.

When Robert first moved in with us, there was only one bathroom downstairs and it didn’t have a tub or shower. Robert’s “room” was our living room and we transformed it into his bedroom every night. It was quite an operation giving him daily baths in a small bathroom without a tub! Robert sat on a shower chair and we used a bucket, the sink and a lot of towels. No one would have guessed he didn’t have a “real” bath every day, though.

Robert loves having his own room now and bathing him is so much easier. We wouldn’t have been able to make the move when we did without the help of our Other Brother and we are all very grateful to him for his help.

Robert’s Sister: Has the treatment changed for you or your loved one?

Over the last few years Robert has tried a few different medications and current medication dosage has changed a bit. Unfortunately, nothing has helped and Robert continues to have dozens of seizures every month. His seizures come mainly in clusters every couple of weeks with one or two seizures breaking through between the clusters. I don’t know why his seizures behave this way but this is what happens now.

A few medications that Robert tried caused behavior problems so he either had to stop them completely or be on a very low dose of them. Trileptal (Oxcarbazepine) caused Robert to be in a terrible mood all the time which, as most people know, is very unusual for him. It helped reduce his seizures but the price was too high. He was angry and upset more often than not and we gave it a good try. He is on a low dose of it which seems to help some without the nasty side-effects.

Robert also takes Sinemet now because of a movement disorder diagnosis a few years ago. This does help him with his Parkinsonism (not Parkinson’s disease) symptoms.

Fycompa was added in 2015 which also seemed to help but Robert ended up in the emergency room from it. As we eventually figured out, this was causing compulsive masturbation and he was literally not getting any sleep. It affected his behavior at all times during the day and also caused severe enough edema we thought he had a blood-clot or pneumonia. It was a horrible experience which, thankfully, we figured out within a few weeks. The medication was fairly new to the market at the time Robert tried it and there hadn’t been reports of these side-effects. Robert’s nurse practitioner reported the side-effects to the FDA since they were so severe.

2016 trip to
Epilepsy Awareness Day at Disneyland
Robert’s Sister: What sort of cognitive, intellectual, emotional or physical changes have you noticed these last four years?

How much time do you have? J

Robert has had significant physical changes in the last four years. All the new diagnoses come with additional tasks to help manage his care. Robert has had urinary incontinence since I started caring for him but he now also has bowel incontinence at times as well. That’s a tough one for me.

Robert uses a wheelchair at Day Program and when we go out but we have him use the walker around the house. He still has to eat while in his wheelchair since he’s been known to have a seizure while eating using a regular chair and then fall sideways out of it.

Robert’s nurse practitioner and I suspect Robert may also have Chronic Traumatic Encephalomyelopathy (CTEM), caused from his uncontrolled seizures and numerous concussions from falls and seizures. CTE and CTEM cannot be diagnosed until after death but with his declining motor function, decreased memory and history of depression and behavioral issues when he was younger, it is a strong possibility.

Since moving in with me and Richard, Robert has fewer angry outbursts and is very happy. His new favorite phrase is that he is doing “excellently great!”

Robert’s Sister: What caregiving help do you use?

Richard and I get IHSS hours to use for Robert but have not hired an outside caregiver. Robert is a client of the Alta Regional Center and he gets his Easter Seals Day Program funded through that as well as transportation to and from the program. With Robert’s increasing physical needs, he moved to a different program with more staff members. Robert loves it and we are very happy with it. The people are absolutely fantastic and they care greatly for Robert.

Richard and I are also eligible for 14 days of respite per year through the Alta Regional Center but, unfortunately, there are not enough care facilities available for people needing as much care as Robert. We have not had overnight respite in a very long time so we will occasionally make our own respite. When we need a break, we declare a weekend a “respite” weekend and I take a Friday off to spend with Richard while Robert goes to Day Program. Our daughter, Rachel, and her fiancĂ©, Matt, have stayed with Robert in the evening while Richard and I go to dinner.

These are the bits of help that we are grateful for and which help keep us going!    

Robert’s Sister: Do you think your life with epilepsy has improved, stayed the same or become worse these last four years? Can you tell us why you think so?  

Our life with epilepsy has definitely improved since Robert moved in and since we moved to a one-story house. Not because the epilepsy has gone away but because it makes it much easier to care for Robert. I am much happier having him live with us so I can make sure he is getting the best possible care than when he lived in care facilities that were not a good fit for him.

However, it is very expensive being a caregiver! Robert needs quite a few over the counter medications to help manage congestion so it doesn't get out of control and lead to pneumonia. We also purchase better quality briefs than he gets from the state every month. We buy him velcro close clothes so he's able to dress and undress himself to some extent. We also found that taking him to the dentist several times a year for cleaning and various dental work keeps pneumonia at bay! Expensive but worth it. 

Robert and Puppy (Taz)
Robert’s Sister: What has been your favorite moment these last four years? 

There have been so many! All involve family or friends. Rachel and Matt got engaged; Richard and I, along with three of our caregiving friends, published a couple of books and started a website to help caregivers with practical caregiving tips; Robert moved in; Robert has developed a wonderful relationship with our dogs and even has come to love the crazy puppy; we moved to our one-story house which helps both Richard and Robert.

I have so much to be grateful for.

Robert’s Sister: What do you see for yourself or your loved one in the next four years?

Oh boy, this is a hard one. Robert’s health is such a “house of cards” I wonder if he will be around in four years. That may seem morbid but that unknown makes me more focused on the present and making sure Robert is able to eke every bit of life out of the time he does have.

Two and a half years ago Robert’s pulmonologist said Robert would most likely live only one to five more years. Of course, Robert has come back from so many near-death experiences I kind of take that prediction with a grain of salt. For all I know, Robert may outlive all of us with as many miracles as he can pull off.

I hope we are able to continue to do fun things like go to the State Fair and the movies and River Boat cruises and Epilepsy Awareness Day at Disneyland.

I really hope we are able to continue to care for Robert at home. I just don’t know if that will be possible since Richard has his own health and chronic pain issues and I have to make sure his health doesn’t deteriorate because of the physical care he is providing Robert.

We have to take things day by day and re-evaluate as needed.

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

I am very grateful to Robert’s team of doctors, the staff at his Day Program as well as the drivers who take him to program and bring him back home. It may be physically difficult and emotionally tiring to care for Robert and work full-time but I am a much better person because of it.

I want to continue to advocate for an expanded definition of family under FMLA so that sibling care is included and would love to see more research done on the connection between uncontrolled seizures and CTE/CTEM. CTE is not a disease that just football players get. I firmly believe CTE is a real threat to those with uncontrolled epilepsy as well. More research is critical.

Robert’s Sister: Please tell us how we can contact any organizations you support or if you have a website or business.

I am very happy to help other caregivers and the best way I have found to do so is with my fellow authors in creating our 365 Caregiving Tips books. We have two books so far as well as a 2017 calendar which includes the gorgeous art of Pegi Foulkrod as well as practical tips taken from our books. More books will be out in 2017!

Please follow my Robert’s Sister Facebook page, the 365 Caregiving Tips Facebook page or website and find me on Twitter here and here.

Of course, I am very passionate about helping others tell their stories of living with epilepsy or caring for someone with epilepsy. I would love to run interviews throughout the year so please let me know if you are interested!

Thank you so much for reading and sharing these stories of people living with epilepsy!

Trish


Wednesday, November 30, 2016

Epilepsy Awareness Month: Interview with Laurie Adamkiewicz

It takes courage to share one’s story about epilepsy.

For one thing, people are busy living with epilepsy or caring for someone with epilepsy which takes an incredible amount of energy and time. It involves managing doctors (many times, several doctors and several medical centers), medications, treatments and school care. It involves managing relationships, fighting stigma and educating the misinformed.

Kyle
It takes courage to share one’s story about epilepsy when it can be painful and when the truth is very difficult to live much less put it out there for everyone to see.

Aside from that, it can be really difficult to talk about caring for our loved one. We’re living it – why do we want to talk about it too?

Laurie is an amazing mom who I think is very courageous for sharing her story. Her family has been through all the difficult crap that comes with epilepsy and she wanted to share her story. Laurie hadn’t written about it before but I am so grateful she did. I admire Laurie for openly sharing so much of what her family has been through for the past 20 years.

Robert’s Sister: Tell us about the person you are caring for.

My son, Kyle.

Robert’s Sister: When was Kyle first diagnosed? Tell us about the process of getting the diagnosis. 

Kyle had his first seizure at the age of six. I came home from a meeting and saw Kyle snuggled in his dad's arms as they were watching TV. All of the sudden I saw Kyle's eyes turn up and sideways into his head and he went into a full blown seizure. His dad carried him downstairs and onto the floor. We called 911 and while we were waiting he was throwing up. Nothing the paramedics gave him could stop the seizure. I jumped into the back of the ambulance and he continued to seize.

In the hospital they were giving him all kinds of things, but his seizure lasted 2 ½ hours. There was no official diagnosis at that time. He had been a perfectly healthy young boy. We didn't know what had caused this. It was a process of many doctor visits, and continued seizures (another one was 1 ½ hours), and calls to 911.

We visited six hospitals, including those in NYC, Philadelphia and Boston, as well as a call to Johns Hopkins in Baltimore. Kyle continued to have an enormous amount of seizures after the initial one, and various kinds. At one point he was having around 100 “mini” seizures a day. I don't know how his young body wasn't exhausted. It probably was. How could it not be?

Kyle and Laurie
Robert’s Sister: How did you feel when Kyle was first diagnosed with epilepsy?

Of course, the first thing is heartache and fear for your child. Then it was how could this happen. I nursed Kyle a long time. He never had formula. We made most of his food. He had regular doctor visits, and progressed at a “normal” rate (I hate that word “normal”). Who's to really say what is “normal”?! He did fall and hit his head on the edge of a wood burning stove as a toddler, needing two layers of stitches. No scans or tests of any kind showed internal damage to any area of the head or brain.

I don't think at the time I was aware how epilepsy would change everything in our family – forever. The common goal was “what should we do?” Were we doing our best to help him? It was all-consuming. The endless tests, scans and medication adjustments. There were constant hospital stays for video EEGs – having to sit still each time while all those wires were glued to his head, hurting his scalp (and the smell of the glue was so toxic).

Then, the constant entertaining of a young boy who wanted to go out and play – not sit in a bed for a week – again while being filmed. Wires would come off – Kyle would peel them off. There were activities for kids in the hospital, but after so many trips nothing was “just a kid being a kid.” How many times can one blow up a rubber glove and toss it around the room! I stayed with him day and night, and his dad was there so much too. I slept in bed with Kyle, in chairs, on cots, whatever. Our families were watching our younger son, Keith. Not the same as Mommy or Daddy...

Robert’s Sister: Did your family treat Kyle differently after the diagnosis? If so, how?

I think it's natural to have a protective guard up. We told all the neighbors in the neighborhood what to do if he had a seizure at their house, and as he got older and was outside with friends, told them as well. Kyle has a brother 2 ½ years younger than him, and I think he felt protective of him. When Kyle would have a seizure in school, his brother, Keith, would run to the classroom. The main people surrounding him had an Ativan in their “pocket” at all times to break the seizure clusters.

Robert’s Sister: Did the kids at school treat Kyle differently because he had epilepsy? 

Absolutely. Kids can be mean. Kyle was in special needs classes because of missing so much school. I don't think – correction – I know he did not get proper teaching despite the fact that we would go to IEP meetings, and had an advocate for a while. We believed “Kyle was doing fine, etc.”

In reality I believe he was cheated out of so much, and now at the age of 26 he still struggles with the basics, despite being extremely intelligent. I thought we were so on top of things, but were sold a bunch of malarky. I wish I could go back and see exactly what was going on. Kyle was called “epilepsy kid” – a painful “name” that Kyle remembers well to this day.

Robert’s Sister: What treatments did Kyle try? What worked? What didn’t work? 

Kyle has been on so many drugs, I honestly would have to go back into pages of notes and records to try and remember them all. Some had very specific side effects. Depakote made Kyle put on excessive weight. I hardly recognize him in photos during that time.

Something else made him go through an aggressive period. His brother put a dead bolt lock on his door. If his dad was working overnight (he was a fire captain), and Kyle was acting out, I would call my neighbor who was a police officer. He would go for a walk in the neighborhood with him and get him settled down and bring him back. It was a very difficult period of time.

At the age of 10, they were finally able to pin-point the focal point of the seizures. Just prior to having a left frontal lobectomy, he had a WADA test (torture in my book). I sat behind him in his hospital bed trying to keep him calm as they “turned parts of his brain on and off,” so they could tell where they would be able to cut.

Kyle remained SEIZURE FREE for two years. Then he threw up one day with a stomach virus. We didn't think to realize his meds had not been in his system long enough. Nobody ever told us. Kyle had a seizure. I ended up having NYU Comprehensive Epilepsy Center start a “Parents info section” in their newsletter....things parents (or caregivers) had experienced and might help someone else. Kyle had his fourth brain surgery this June. He had a shunt put in to try and relieve an area of fluid causing pressure in his head, and continuous headaches. He remains, with the exception of an occasional “aura,” seizure free, taking medicines three times a day.
 
Robert’s Sister: Do you think the medications affect how Kyle feels and behaves?

Yes, I think Kyle just feels different. He is lethargic, and lacks drive. He has a lot of anger that he has epilepsy, as well as how things played out during his school years. He has not been able to accept things for how they were and get past the anger. I was very sick when I was 20, and I missed out on a lot of things my friends were doing. I can empathize with him – perhaps that is why I had gotten sick – because I would end up being Kyle's mom.

Robert’s Sister: Have you done any advocacy work (individually or with an organization)?
What made you want to be involved?

I donated some of my original photography for a gift auction for the Epilepsy Foundation of NJ fundraiser, and solicited several people to donate desserts. This year I have signed up for the committee. I have written an article that was published in the FACES newsletter years back for NYU. I really could and should (another word I dislike) be more active, but life has a way of getting busy. I have also considered the Make-a-Wish-Foundation, as Kyle was granted a wish when he was younger.

Robert’s Sister: How has epilepsy affected your life?

I've had so many mixed emotions. Fear, sadness for my child, anger, frustration, joy for the control they've gotten over the seizures, sadness for time missed being spent with our other son (who I think could have managed his own apartment at 12 years old).

I feel frustration regarding all the suggestions I give to Kyle, even in regard to “meet-ups” to make friends. He doesn't have a network of people his own age that accept him. He has to come into his own. I worry. I wish he and his brother were close. But that's how it is in families regardless of if anybody has any challenges. I just wish it was different.

Kyle's dad and I couldn't really have a “couple” life. We had to keep track of things, sleep with our door open. At one point I was sleeping on the floor outside of Kyle's room. It would be pretty accurate to say it changed the whole family dynamics.

Robert’s Sister: What is your favorite memory right now of Kyle? 

Of course as a mom, my heart and mind are filled with memories. We had a dog that we rescued. She had a wonderful, affectionate personality but was destructive. Kyle adored her and she would lay with him and he would hug her. I remember the love he had for her. Kyle is a very kind person.

Robert’s Sister: What do you want people to know about epilepsy?

I want them to not be scared. People with epilepsy are NOT stupid. Kyle had the highest IQ of any “kid” NYU had done surgery on at the time. He has an invention patent-pending. Epilepsy affects people of all ages, including the senior population. There are different types of epilepsy. Read. Become educated.

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

It would be nice if people with any kind of challenges were more readily accepted by the general population. And if you know a caregiver, ask what you can do to help. Learn about their situation, and give them a “break.” Doing what we do, though I wouldn't have it any other way, is lovingly exhausting.

Robert’s Sister: Please tell us how we can contact any organizations you support or if you have a website or business. 

Facebook: Laurie Adamkiewicz Photography (Please “LIKE” my page) :)

(I am happy to donate a matted print of my choosing to legitimate epilepsy fundraisers.)

Also, be aware of this event:

SAVE THE DATE!

Come back and join us for our 6th Annual Paint the Pony Purple event for epilepsy awareness on Sunday, March 12th!

We are returning for our 6th year at The Stone Pony for a purple-themed, family-friendly day full of entertainment, and refreshments!

Paint the Pony Purple for Epilepsy
Sunday, March 12, 2017 1-5 pm
The Stone Pony
913 Ocean Ave, Asbury Park, NJ 07712

I am very grateful Laurie shared Kyle and her family with us and I hope their story helps other families going through their own epilepsy diagnosis and treatment. It can be a brutal road but all you can do is your best and Laurie and her family clearly did just that.

I think all caregivers go through periods of reflection and have moments of regret or wish things would have been different. It’s important for us to cut ourselves the same slack and give ourselves the same grace we would give to others.

Also, I know today is the last day of November which officially ends Epilepsy Awareness Month but I have one more follow-up interview tomorrow: mine! J 

Trish  


Tuesday, November 29, 2016

Epilepsy Awareness Month: Follow-up Interview with Richard

As most readers know, Richard is my husband and is my co-caregiver for Robert. I really wouldn’t be able to continue to care for Robert while working full-time without his help. Richard is at home every day to make Robert’s breakfast, send him a delicious lunch to program and then greet Robert when he gets home from program.

Richard and Robert at Disneyland
(2016)
Robert loves his “guy time” with Richard and they joke and laugh and enjoy watching Family Feud or Wheel of Fortune together.

Richard is my “MacGyver” and is constantly coming up with ideas to make caregiving easier or more fun. He installed grab bars in our new home; he set up a rotating bath seat so Robert wouldn’t hurt himself in the new tub (and it would be easier for me to get Robert in and out of it) and he is the one who, years ago, found what has become our lifesaver: a urinal guard for Robert to use when he uses the bathroom!

Richard also has ingenious ideas about fixing Robert’s walker or wheelchair and has even come up with a way to make a bowling alley for Robert! Robert loves to bowl and we have a very long hallway which Robert uses for playing ball with the dogs. Richard is creating bowling pins from large sparkling water bottles and we are going to have a bowling alley in no time!

Of course, living with “two wild and crazy guys” can drive a girl batty sometimes but I wouldn’t have it any other way.

I loved hearing Richard’s perspective on caring for Robert and the decline we’ve witnessed the last few years. (You can read his first interview posted in 2012 here.)

Robert’s Sister: I am curious what changes have occurred in the last four years. Please remind us how epilepsy has affected your life.

My wife and I care for my brother-in-law, Robert, who is now 51 years old. He now lives in our home and has for just under four years now and has been his advocates for just about eight years.

Robert’s Sister: What is the most significant change in your life since our last interview?

The biggest change in our lives since the last interview in 2012 is we ended up moving to a single story home to be able to give Robert a bedroom of his own as well as the access to an actual bath tub instead of giving him sponge baths. The second noticeable change in Robert is that his balance, incontinence and his overall ability to care for himself is very limited to feeding himself, once we cook everything.  Robert is able to feed himself as long as we prompt him to keep things moving or else he can take two to three hours to eat a basic meal.

Robert’s Sister: Has the treatment changed for your loved one?

The treatment is pretty much the same. He is being watched more closely to make sure there are no major declines and this comes from us watching him and relaying it to his doctors.

Robert ready for Day Program
Robert’s Sister: What sort of cognitive, intellectual, emotional or physical changes have you noticed these last four years?

Robert’s memory seems to be off by a year or so, yet at times when he starts telling you about his childhood and when things happened in his life his mind is like a steel trap. His religious connection is a strong as ever and he makes sure he’s watching church, wearing his white shirt on Sundays. He does seem to repeat thing quite often and more than normal. He can say, “Good afternoon, Richard” to me and five minutes later say it again as if the first time never happened.  In that respect, this does seem to have gotten worse.

Robert’s Sister: Do you think your life with epilepsy has improved, stayed the same or become worse these last four years? Can you tell us why you think so?  

Robert’s life with epilepsy has improved as he went from sleeping on a fold out twin bed in our living room on the first floor of our home with only a half bath and he was unable to make it up the stairs to a bath tub or shower.  He now has a full bath room 2 ½ feet outside his bedroom door.

Robert’s Sister: What has been your favorite moment these last four years? 

My favorite moment this past four years has been working with four other caregivers and coming up with a series of books, 365 Caregiving Tips: Practical Tips from Everyday Caregivers to help those starting their journey in caregiving or even those who are now veterans. These benefit not only those caring for someone with epilepsy but all ailments. The next best thing is getting involved with Epilepsy Awareness Day at Disneyland (EADDL) and for the past several years now being able to attend and take Robert down with us. Seeing his face when someone says they “know who Robert his from seeing his face on the internet,” – his face just lights up. It’s priceless.

Robert’s Sister: What do you see for yourself or your loved one in the next four years?

I am hoping to see minimal decline yet in looking back to four years ago and seeing his decline from then to now, I’m not sure where he’ll be. I am hopeful that some new treatment or medication will be created that will benefit him if even only in the slightest.

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

With everything Robert has had go on in his life with the surgeries, medication changes, failed treatments and his recent decline I am so happy that none of it affected his religious beliefs.  Without his praying, watching church on Sundays to his asking how you are 10-15 times a day or out of the blue saying he said a prayer for whatever ailment you have at the moment, he would not be Robert. 

Robert’s Sister: Please tell us how we can contact any organizations you support or if you have a website or business. 

I run a website to help those with chronic pain and I also cover topics to help the caregiver. I’m also on Twitter and Facebook.

Many thanks to Richard for all he does and for taking the time to answer my questions. I love how hopeful he is for Robert’s health and admire Richard for all he does, in spite of his own health issues. I should nominate him for Husband of the Year or something! J

Trish


Monday, November 28, 2016

Epilepsy Awareness Month: Follow-up Interview with Robert

Robert is a man of few words but sometimes what he says really makes an impact. I interviewed him four years ago during Epilepsy Awareness Month and his answers were short but they gave me (and I hope others) a glimpse into how his mind works. He is a very positive person who can best be described as content. He is just a happy guy. He wasn’t always like this but I like who my brother has grown to be and have learned a lot from him.

Robert and his word search
From my perspective, a lot has changed in the four years since I last interviewed him. I was curious if he thought so to.

Robert’s Sister: I am curious what changes have occurred in the last four years.  Please remind us how epilepsy has affected your life.

I was born with epilepsy.

Robert’s Sister: What is the most significant change in your life since our last interview?

I’m doing more activities. I walk around the room a little bit.

Robert’s Sister: Has the treatment changed for you?

Not really.

Robert’s Sister: What sort of cognitive, intellectual, emotional or physical changes have you noticed these last four years?

My behavior has gotten a lot better. I think a lot better than I used to.

Robert’s Sister: What caregiving help do you use?

I don’t need much help but some people do help me.

Robert - Always with a word search book
Robert’s Sister: Do you think your life with epilepsy has improved, stayed the same or become worse these last four years? Can you tell us why you think so?  

It’s gotten a lot better. I have not had as many seizures now. The seizures I have are minor. I don’t have the grand mal seizures anymore.  

Robert’s Sister: What has been your favorite moment these last four years? What is your favorite moment or thing?

My word search book is one of my favorite things. My friends are my favorite too and playing games with my friends.

Robert’s Sister: What do you see for yourself in the next four years?

Probably I’ll get healed completely.

Robert Wright: Happy and Content
Robert’s Sister: Is there anything else you want to say?

I love doing word search books. (Long pause.)

I love shooting pool too. I’m happy I remembered that! (He laughed while saying this.) 

  
Simple. Content. Happy. Hopeful.

It doesn’t get any better than that.


Trish