Epilepsy Awareness Month: Why the Decline?

Robert has had Epilepsy since he was a child and uncontrolled seizures his entire life but he wasn’t always in a wheelchair. He was an active kid (“hyperactive” was actually the label put on him). Robert had numerous seizures which made him fall but didn’t start wearing a helmet until his twenties. 

I don’t know why.

Looking back, the kid should have not only worn a helmet but been in bubble wrap.

Robert’s injuries were extensive: numerous concussions from falling on concrete, a broken shoulder due to a fall, a broken jaw at one point, and even severely burned his arm when he fell against a hot lamp bulb when he was alone. He miraculously survived a drowning when he had a seizure while swimming and I vaguely remember him getting hit by a car but the details are fuzzy on that one. 

I mean, seriously. We should have looked into the bubble wrap option. 

Robert was in his early forties and living with his companion, Judy, when we determined it was too unsafe for him to live alone. (Caregivers question themselves all the time about whether we should have stepped in earlier than we did. I am no exception but I stepped in when I did and, as my friend Kathy says, it was just the right time.)

Robert’s neighbor told Other Brother (Rich) and I that Robert was falling more than usual. There were some other things happening too and he ended up in the hospital and then a Skilled Nursing Facility for a while. That’s when we decided he couldn’t go back to his house and I took over his care. 

Robert was still walking at this point but eventually needed a walker because he wasn’t very steady on his feet. 

After he moved in with me and Richard, it was clear that Robert needed to wear briefs all the time. He couldn’t make it to the bathroom on time through no fault of his own. He didn’t move that fast but also his brain wasn’t telling him to get to the bathroom as quickly as it used to. 

The mobility decline snuck up on us until one day Robert couldn’t move his legs. He just couldn’t get them to move. He tried. I could really see him thinking about it but his legs (particularly the right one) wouldn’t budge. 

Robert landed in the hospital since this was such a dramatic change and he was there for a couple of weeks while they tried to figure out what was going on. 

The neurologists thought he possibly had Cervical Disc Disease with Myelopathy. Eventually, however, his wonderful neurologist that specializes in movement disorders said he had Parkinsonism (not Parkinson’s disease but, from a very basic understanding, it is just the movement disorder part of Parkinson’s). She put him on Sinemet which did help his movement. She also thought his decline could be due to CTE (Chronic Traumatic Encephalopathy) which is a degenerative brain disorder caused by repeated concussions. 

It can’t be definitively diagnosed, though, until an autopsy is done. 

Robert was always one to sign up for various studies whether it was for a new anti-seizure medication, surgery or medical device. He wanted to help others but also wanted his seizures to stop so he always signed up for trials. It kind of drove our dad crazy but he kept signing up for these things. Robert even tested the Deep Brain Stimulator before the FDA approved it for use in Epilepsy (it was actually first approved for use in Parkinson’s Disease). The DBS trial was showing that it helped reduce his seizures but, unfortunately, it became terribly infected and he had to have it removed. 

Several years later, once the DBS was officially approved, he was able to have it implanted again and it was definitely helping with his seizures. 

Given the suspicion of CTE and Robert’s willingness to participate in scientific trials it really was a no brainer (sorry, pun intended!) to have Robert’s brain autopsied after he died. 

I wasn’t sure how to go about this but I had read about Dr. Bennet Omalu who first discovered CTE in football players. I knew he had connections to UCDMC where Robert was hospitalized so after Robert died I looked up his website and contacted him. He responded within just a few hours and said his assistant would contact me. She did and, after talking to Richard and Rich we made the decision to have Dr. Omalu autopsy Robert’s brain. 

They made it super easy – they would get Robert from the hospital, retrieve his brain and then transport him to the funeral home. Initially, we chose a funeral home a few hours away because it is where our parents are buried but once we found out the cost of the burial (yikes!), we decided cremation would be the way to go and we could go with a funeral home in our area. Richard’s family had used the local option for many years and they were family owned so it was a easy choice. 

I let Dr. Omalu’s office know about the change only to find out Robert was already on his way to the original funeral home! There was some miscommunication with this funeral home who apparently had one department who knew we had declined their services but the message hadn’t made it to another department. Robert’s driver was literally ten minutes away before getting the message that he had to turn around and bring Robert back. 

Rich and I joked that Robert had a field trip to see our parents’ graves one last time. I’m certain he enjoyed it! 

The results of the autopsy won’t be available for several more months but it will be interesting to get the results. Did Robert have CTE or was his decline due to some other neurodegenerative disease? Or was it all because of the lifelong, uncontrolled seizures? 

I told his neurologists what we were doing and that I would send them the results. They were very grateful and told me how generous it was to do the autopsy.

I felt we really didn’t have any other choice. I wanted to honor Robert’s mission to educate others about Epilepsy and I wanted to find answers that might help others who have had years and years of uncontrolled seizures.  

I am grateful to Robert for this one last gift.