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 fiancé, 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

Epilepsy Awareness Month: CTE and Epilepsy – Making the Connection

The connection between blows to the head (even those not resulting in a concussion) and Chronic Traumatic Encephalopathy (CTE) is clear thanks to the persistence, innovation and research of Dr. Bennet Omalu, a forensic pathologist and the doctor who wrote the book, “Play Hard, Die Young: Football Dementia, Depression and Death.”

CTE is quite the hot topic right now because of the number of high profile NFL players confirmed to have CTE (including Junior Seau) and the NFL finally recognizing the dangers of repeated concussions. It doesn’t hurt to have Will Smith releasing a new movie, “Concussion”, which is based on Dr. Omalu’s work.

What exactly is CTE?

The UC Davis Medical Center (a university at which Dr. Omalu is part of the faculty) describes CTE as a “progressive, degenerative disease that results from repetitive brain trauma that can only be definitively diagnosed after death.”   CTE cannot be confirmed until a post-mortem brain analysis checks for tau proteins but brain imaging while the person is alive can be reviewed for “markers” of the tau protein. Interestingly, tau protein is “an abnormal protein common in the brains of elderly Alzheimer’s patients.”

The CTE Center at Boston University describes the symptoms of CTE as including “memory loss, confusion, impaired judgment, impulse control problems, aggression, depression, anxiety, suicidality, parkinsonism and, eventually, progressive dementia.”

Robert has (or has had) every single one of those symptoms.

I am convinced there is a link between CTE and epilepsy.

I am no scientist. Heck, I couldn’t even take biology because I refused to dissect a frog. But I am pretty good at observation. And research. And taking notes. And being pretty darn persistent.

I know what Robert was like as a child. His motor and verbal skills were perfectly normal. He had trouble in school but mainly because he missed quite a bit of it because of doctor appointments and medications and seizures and he also was diagnosed with ADD (probably ADHD, now that I think about it).

Robert grew up on a variety of anti-seizure medications and did not wear a helmet until he was well into his twenties and continued to have uncontrolled seizures and falls.

There were a lot of head injuries and concussions. He had numerous falls resulting in all kinds of injuries (including a near-drowning) and more head injuries than any of us could count.

Robert’s head injuries alone could be the reason for the symptoms he now has.  The depression and attempted suicide Robert experienced as a teenager could have been the result of medications or epilepsy.  Or was it CTE?

More than a year ago, Robert was hospitalized for a few weeks because he could not use his legs. At the time, he was using a walker and we had to make the switch to a wheelchair. He quickly lost the ability to even transfer from the wheelchair to the bed or to another seat. He was sleeping constantly. He was very, very sick and his neurologist thought he might have “cervical disk disease with myelopathy.”  A CT scan showed he does have that but while in the hospital, the neurologist on rotation also diagnosed him with Parkinsonism. I asked about CTE and she agreed with me about seeing the symptoms.

Let’s include epilepsy in the discussion about CTE.

What if the falls and head injuries are not the only contributing factor to CTE?

What if the uncontrolled seizures are causing CTE?

What if the depression associated with epilepsy is actually because of CTE?

What if epilepsy itself is a cause of CTE? 

When I broached the subject with Robert’s Neuro Nurse Practitioner, she thought these were great questions. The neurologist, probably playing devil’s advocate, asked something to the effect of what good it would do to know whether epilepsy can result in CTE.

My answer:  PLENTY!!!

If there is a connection between epilepsy and CTE then the research can move in a whole new direction, possibly finding new medications and treatments for epilepsy.

If that is not reason enough, then consider:

If there is a connection between epilepsy and CTE, parents may be more inclined to make their kids wear a helmet. Our parents did not make Robert wear a helmet because he didn’t like it – it made him look different. (Keep in mind, this was before kids even wore helmets to wear a bike or before motorcycle helmets were required.)

If there is a connection . . . helmet technology would have even more reason to improve! Let’s make more improved helmets to better protect those precious brains during a fall.

If there is a connection . . . there is even more reason to strive for a cure. To reach 100% seizure control. If uncontrolled seizures can take Robert from a lively, outgoing, mobile rascal of a kid to a depressed teenager to a 50 year old who cannot remember what he did earlier in the day, then it can happen to others with uncontrolled seizures too.

If there is a connection . . . the availability of caregiver resources and respite will need to rise to the occasion. If we, as caregivers, are managing the health and well-being of a person with uncontrolled epilepsy and know that in the future there will be more and more care needed, then we have to be prepared. I would have loved to have known that Robert’s steep decline was just ahead as I began to care for him. Not because I would have refused to take on the job but because I would then know what I was in for and could plan for it.

If there is a connection . . . the availability of social services will need to increase. Day Programs and social service agencies handling an increasingly needy population will be understaffed and underfunded if we do not recognize the decline in people with uncontrolled epilepsy. These agencies are already understaffed and underfunded but gathering data about the impending increased needs of consumers will allow these agencies to plan for it.

If there is a connection . . . research will have to improve and become better funded. There is already an enormous burden on the healthcare system to care for the chronically ill, disabled and elderly. Robert’s care is paid for by Medicare and Medi-Cal – I know the extraordinary costs associated with his care and know the government (and, frankly, the people) are paying for it. Multiply his costs by a million (a third of those with epilepsy do not have seizure control) and the numbers are . . . , well, ridiculous. (I am not a mathematician either.) 

I am not trying to alarm anyone who has uncontrolled seizures or who is caring for someone with uncontrolled seizures.

I understand no one wants to talk about the long-term effects of uncontrolled epilepsy. We want to be in the category of those with epilepsy living long, productive lives. The long-term effects can be scary as hell.

However, just as many people don’t realize SUDEP is a very real risk from uncontrolled seizures, a possible link between epilepsy and CTE needs to be discussed and researched.

Let’s at least include epilepsy in the discussion of CTE. Let’s do some research to see where this takes us.

Let’s give families another reason to find a cure for epilepsy and to get the support and help they need in treating epilepsy.

Let’s not be alarmed – let’s do something about it.

Kick Off to Epilepsy Awareness Month 2014!

As promised in October, Epilepsy Awareness Month is going to be full of education, awareness and ROBERT! 

Robert is getting pampered on the first day
of Epilepsy Awareness Month 2014

This has been a year in which I was pretty much hit over the head with the damage uncontrolled epilepsy can really do.  I knew about SUDEP and horrific epilepsy disorders that can cause infants to have hundreds of seizures a day but the damage to an adult with uncontrolled epilepsy? 

What happens to adults with uncontrolled epilepsy who do not succumb to SUDEP or fatal accidents?  What is the toll on these adults?  There is not a lot of information out there. 

For Robert (and I can only speak about Robert’s experience with uncontrolled seizures), this has meant a cognitive decline, a physical decline in mobility as well as generalized weakness and new diagnoses Cumulative Traumatic Encephameylopathy and Parkinsonism.

The revised mission of Robert’s Sister is to educate and advocate for those with uncontrolled epilepsy in order to generate solutions and resources for both the person with epilepsy and their caregiver, particularly the working caregiver.

The goal is to post a new video every day throughout November but as all caregivers know, sometimes caregiving gets in the way of the best of plans! (That’s my disclaimer if I miss a day or two).  J

To follow Robert’s Sister, please sign up to follow this space by email or follow us on Facebook, Twitter, Instagram, Pinterest or You Tube.   

This month, our theme is The Impact of Epilepsy on Robert. I recognize the value of your time (and truly appreciate you taking time to read this blog and view the videos) so am keeping these videos fairly short without compromising the message Robert would like to convey.

Oh, another disclaimer! I am not a professional videographer so please forgive the camera-person (me).

Let’s kick things off with Robert talking about his seizures.