Thursday, November 27, 2014

Epilepsy Awareness Month Day 27: Gratitude

Today is a day for gratitude! Richard, Robert and I share what we are grateful for and wish everyone a very Happy Thanksgiving!

One impact epilepsy has had on Robert is that it has made our family that much closer.  For that, we are all grateful.
We have much to be grateful for! 

Wishing everyone a wonderful day and a year full of blessings.

Happy Thanksgiving!

Wednesday, November 26, 2014

Epilepsy Awareness Month Day 26: Epilepsy Rant

I am usually a positive person but today has been especially trying. I realize tomorrow is Thanksgiving and I should be espousing everything I am grateful for.  I will. 

Just not today. 

Today I am on a rant. 

Epilepsy sucks.  It is more insidious than people realize.  People who have seizures lose minutes, hours, and days of their life.

Epilepsy has no regard for schedule. Does it care tomorrow is Thanksgiving?  Absolutely not.

Epilepsy changes without warning.  I am used to Robert’s Complex Partial Seizures. He averages 20 – 25 seizures a month. This month, his seizures are out of control.  He has had not one but two days of non-stop cluster seizures (totaling at least two dozen each day).

When it happened earlier this month, we thought maybe he was super excited about our trip to Disneyland.  We (meaning me and his neurologist) couldn’t figure out any other reason for the unusual cluster. I chalked it up as anomaly.

Then it happened again – three weeks later. 

Are his seizures changing?  Are we moving from one or two every few days with an occasional cluster of 3 – 4 to a few dozen in a day? Will this become the norm? 

Who knows!  Because epilepsy is unpredictable and in a third of people with epilepsy it is never controlled.  Never.

Epilepsy kills. Yes, it kills.  Fifty thousand people die annually in the United States from epilepsy (prolonged seizures, SUDEP, and accidents caused from seizures).


Epilepsy changes lives. A woman – a kind, wonderful woman – loses her daughter and mother to seizures. A mom takes a low-paying job because it allows the flexibility to support her son who has epilepsy follow his dreams. A mom advocates for the legal use of CBD after seeing her son’s epilepsy continue to be uncontrolled. A man and his wife care for their disabled son and have sat bedside with him numerous times when he was on the brink of death. A confident, empowered woman becomes self-conscience because the of damage epilepsy medications have done to her teeth.

Let's do more research to find a cure for epilepsy.  Let's do more advocacy.

Let's do more ranting. 

Tuesday, November 25, 2014

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!

Monday, November 24, 2014

Epilepsy Awareness Month Day 24: Mood and Medications

Robert is generally very polite, sweet and overall in an excellent mood.  It might be physically difficult to care for him but it is not emotionally difficult when he is cooperative, joking around and full of laughter. 

Robert playing ball with the dogs
When Robert (or any caree for that matter) is cranky, caregiving becomes one hundred times more difficult.  It takes so much extra energy to convince Robert to cooperate when helping him dress when he doesn’t want the help (but needs it) or for him to be sensitive to the bath water and complain about it being too hot or too cold (or both) no matter what I do and to even be yelled at when I am trying to help him walk safely.

Robert gets cranky when he has a reaction to medications (which can happen with many anti-epilepsy medications as well as other medications such as pain meds).  He also got very irritable earlier this year when not only was his medication being changed but he was losing his ability to walk.

I can only imagine how scary and frustrating this is for anyone but for someone with a slight cognitive impairment, it must be especially frightening. 

Anti-epilepsy medications can have many side-effects but, of course, not everyone is affected in the same way or for the same length of time.  When Robert was younger, he was on Tegretol and Phenobarbital (and lots of other medications – he may have tried them all). He has been on Depakote and Klonopin for as long as I can remember.  Robert definitely had depression, anger and impulse control issues as a teen and young adult.  The new medication he was put on earlier this year is at a very low dose because he just couldn’t tolerate any more of it.

The Epilepsy Foundation has a terrific list of anti-epileptic medications with the side-effects associated with it. Unfortunately, many times trying a new medication can be a difficult and time-consuming process that in itself can be frustrating.    

When these nasty side-effects show up, it makes caregiving that much more difficult. The caregiver not only has to deal with a cranky caree but has to figure out if the mood change is due to the medication or something else happening to the caree or a change in the environment. For instance, even a dramatic change such as a new Day Program or a simple change in schedule can affect a sensitive caree – especially those driven by routine.

It is important to bring any attitude and mood changes to the attention of the caree’s physician in case there is something new going on or in case medication can be adjusted. 

We were very fortunate that with a few medication changes and intensive physical therapy, Robert got his “excellent” back.  He still has his irritable moments but I am grateful he is generally in a good mood again.  I realize the solution isn’t always that easy or even, possible.

Although, now that I think about it, the solution for Robert wasn’t that easy – it was a long and difficult summer getting him well.

I am definitely grateful for his return to excellent but know that there will be difficult, cranky times as well.  The most important thing I learned this summer is that we can – and will – get through any difficult period.