Epilepsy Awareness Month: Continuing Epilepsy Education

It’s November so that means it is Epilepsy Awareness Month. In past years, I have shared facts about epilepsy, interviewed people with epilepsy and spotlighted organizations that help people with epilepsy and their families. I have shared what life with epilepsy has been like for Robert. It was important to Robert to educate people about epilepsy and I wanted to help him fulfill that passion – that life goal of his. 

Robert is gone now. (That is still hard for me to believe.) As most of you know, Robert died on September 28. Not from seizures or Status Epilepticus or SUDEP (Sudden Unexpected Death from Epilepsy); not even from Aspiration Pneumonia which I thought for sure would be what did him in. (After all, that’s what the doctors told me in June when they were pressuring me to let them insert a feeding tube which I adamantly refused.)

No. It was none of that. 

It was Necrotizing Pancreatitis caused by gall stones of all things (which were found in June but treatment for that was not a high priority at the time because he was in such bad shape from aspirating after vomiting from the Pancreatitis.) 

Nothing related to Epilepsy.  

I suppose the argument could be made that the Pancreatitis was allowed to get so bad because somehow (maybe due to all the anti-seizure meds he was on) Robert rarely experienced pain. It was always so ironic to me since my husband, Richard, has dealt with extreme chronic pain since I met him and Robert never seemed to feel pain. I always wished that somehow their pain centers could balance each other out and Richard would feel less pain. (Although now that I write that down I certainly didn’t want Robert to experience more pain so my balancing out the pain centers idea kind of falls apart.)

Well, a quick google search actually says it is normal not to feel pain while on anti-seizure meds. This has just always been a theory of mine based on Robert’s experience through the years but apparently that is an actual side-effect of some of the medications.  

I’ve heard that Pancreatitis is extremely painful but Robert never complained about his stomach hurting. He didn’t act like he was in pain. He flinched a little in June when he was hospitalized and they pressed on his stomach but nothing after that. 

Robert casually mentioned at a doctor’s appointment the week before his last hospitalization that his head hurt but he was not acting in pain at all. Looking back, I suppose this could have been “referred pain” but this didn’t occur to me or anyone else. He was actually acting more alert than usual so there was no reason to suspect he was in pain or that anything was “off.” 

That last week he was alert, playing bingo and talking and laughing! I was actually feeling so good about how he was doing! Fewer seizures, less sleepiness – heck, his neurologist even reduced one of his meds and talked about eventually seeing Robert every six months instead of the usual every three month visits!  

This was all so promising! 

Obviously, though, there was a problem because four short days later he was in the ER with septic shock from this necrotizing pancreatitis! 

That’s why this was such a shock. 

As a caregiver, it is impossible to know what is going to come at you. You can say the same thing about dealing with epilepsy.  Medication side-effects, accidents, concussions, surgeries, and an eventual decline from all of it. It can be unpredictable, brutal and heart-wrenching. 

But there can be some really good days. Even good months and I am thrilled to look back on Robert’s last month and be able to say it really truly was super, amazing, excellent and great. 

I’m going to do my best to write something about Robert each day this month. Epilepsy is different for everyone but I hope some of this information will help others. I hope by talking about Robert’s experience it will help others with epilepsy and their caregivers. 

I hope to keep going with Robert’s goal of educating others about epilepsy. 

And I suspect it will keep Robert close to me and his friends, family and “fans.” After all, he did love to be the center of attention! 

Epilepsy Awareness Month Day 25: Epilepsy and Dental Care

Anti-epilepsy medications can ruin a person’s teeth. 

Robert is very comfortable at the dentist

Robert has always been good about brushing his teeth but when he lived independently he didn’t regularly see a dentist.  As we found out this year, the dentist he did see actually did not do very good work (root canals were not properly done, for instance). 

When I took over Robert’s care and he lived in a care facility, he was eligible for regular dental cleanings and check-ups as well as a deep cleaning under general anesthesia.  This made me very nervous and I agreed to it once.  At that time, the dentist said his teeth were in good shape and Robert didn’t need any work done. 

Side rant: How much sense does it make that Robert was eligible for four cleanings per year as well as the deep cleaning every two years yet is not eligible for that while living with me?  I am a reasonable person and would love to know the thinking behind that “logic.”

Anyway, two years later I took Robert to a dental group that supposedly took Medicaid and who proceeded to tell me Robert needed twenty thousand dollars in dental work.  Not only that but the dentist did a cursory cleaning on Robert (which hurt him) and made disparaging comments about him while doing it. 

I filed a complaint and got our money back (Medicaid did not pay for the services contrary to what this company said). I then took Robert to my own dentist.

Robert needed work done but it was not even close to $20,000 worth! The x-rays done showed previous work and the dentist pointed out the improperly done root canals.  Over the course of a few months, Robert underwent a lot of dental work (fillings, crowns and deep cleanings) and I took over brushing his teeth. 

Robert has difficulty keeping his teeth as clean as they should be because of his dexterity issues. After Robert’s summer of hospitalizations and SNFs, we have not gotten back into the routine of me brushing his teeth. 

It showed at the cleaning visit today. 

Keeping Robert’s teeth clean is not just a matter of vanity. Robert is prone to pneumonia and one huge, contributing factor is the bacteria living in his mouth and then traveling to his lungs.  Good oral health helps with good overall health. 

During Epilepsy Awareness Month in 2012, I interviewed Teresa Stallone who also has felt the impact of anti-epilepsy medications on her dental health. Because dental care is rarely covered by Medicare or Medicaid, essential dental work is often placed on the back-burner.  As Teresa said, after developing a life-threatening infection due to severe periodontal disease, “I am experiencing major health consequences as a result, including more breakthrough seizures thanks to medication to ease relentless pain.”

This absolutely should not be tolerated. Dental care is as essential as medical care yet it seems insurance (whether federally or state funded or otherwise) has not caught up to this fact.

People living with epilepsy need to be particularly diligent with their oral hygiene and health. Those caring for someone with epilepsy can help with this task with reminders, visits to the dentist or even helping to brush.  We can also help advocate for better dental coverage and for the awareness of the need for great oral health. 

In the video today, Robert talks about going to the dentist and I stress the importance of good oral health. 

The puppy also demands some camera time!

Blessings and Gratitude All Around

One weekend a few months ago, Robert asked me to find his pocket phone book.  I knew we didn’t have this but I looked in his closet anyway.  I told Robert there was no pocket phone book to be found.

Robert's Bible cover

The next weekend, he asked again. I explained we didn’t have it.

This happened for several more weekends.

I finally realized he wanted a particular phone number so asked him who he wanted to call.

“My church.”

Well, goodness.  I told him I could find the phone number of the church and could call them.  He liked that idea so I called the church and left a message, not really expecting a call back. After all, Robert has been sending Christmas cards to this church for the past five years and hasn’t received a call or card back.

As gently as I could, I told Robert not to expect a response. "I'm sure they won't call" is pretty close to what I said.  

The following weekend, Robert asked for his pocket phone book.

Oh boy.  This topic is not going away.  I had to get a little tougher with my message.

I explained that we had already called the church and left a message. Robert was right there when I had called! I explained that I already looked for the pocket phone book and it was gone.

It’s gone – we do not have it.

“It’s at the other house.”

No – it’s gone; it’s gone.  It’s really gone. There’s nothing more I can do.  I’m sorry.

Silence and a stare.  Never a good combination.

That was on a Sunday. 

Monday morning, someone from Robert’s church called me. 

If ever there was a time for a hallelujah this was it!

Hallelujah!

He remembered Robert and was grateful I had called because they wondered if Robert was okay.  They had grown fond of him and had hoped for the best when he was no longer attending the church. It was great to hear how much Robert meant to this person.  He promised to have one of the pastors call Robert and we discussed the best times to call.

I was thrilled to come home and tell Robert a pastor from his church was going to call him. Robert’s eyes got a little bigger and brighter and his smile was spread across his face.

This meant so much to him; I hoped the pastor really would call and would call soon.

Two nights later, Pastor Franz called to talk with Robert but first he talked with me for quite some time.

Pastor Franz told me how much Robert meant to him and the church. He explained that Robert helped him (a pastor!) solidify his own faith way back when and he was extremely grateful we contacted him and was grateful to know how Robert was doing. Pastor Franz told me he had been on a bad path but he admired Robert’s faith and conviction and their conversations helped put him on the path to becoming a pastor.

For almost 15 years I have held a grudge against this church because a few of Robert’s church friends had convinced Robert God had cured him of epilepsy and he no longer needed to take his anti-seizure medication.  I don’t even know if this church was the same one Pastor Franz was from but I held a grudge against “Robert’s Church” anyway. As a result of this irresponsible advice, Robert had several relentless seizures while our entire family was visiting the ocean with my mom who was dying of cancer. 

To say I held a grudge is an understatement.

After talking with Pastor Franz, I put Robert on the phone.  Pastor Franz spoke with Robert for several minutes (even though it can be difficult to understand Robert over the phone) and I overheard them praying together, talking about God and Jesus. It appeared Pastor Franz was asking Robert if he needed anything but Robert didn’t quite understand him.  They eventually said their goodbyes and Robert handed me the phone again with a look of pure joy on his face.

Pastor Franz thanked me for contacting him and promised to send DVDs of their services - every week - and offered to send anything else Robert needed. 

I in turn thanked Pastor Franz for giving Robert something I can’t give him – a prayer with someone from his church whom he clearly respects.

Robert was elated the rest of the evening and I could feel my heart letting go of the grudge. It kind of didn’t want to but I thought it was time.

I am very grateful for what Pastor Franz gave Robert that evening and am grateful for his gifts of the promised DVDs which faithfully arrive in our mailbox twice a week.

I am also grateful to Pastor Franz for giving me the gift of forgiveness of people who were no doubt well-intentioned but woefully (and dangerously) uninformed.