The Deep Brain Stimulator for Epilepsy: Take 2!

One of the questions asked about Robert getting the Deep Brain Stimulator was: what do we hope to get from it? 

While many may think the obvious answer is to reduce seizures the more complete answer is a bit more complicated. 

At this point in Robert’s life, the anti-seizure medications are what are causing so many problems. High ammonia levels (from Depakote) leading to reduced mobility and functionality and increased confusion. Vimpat literally making him lose his balance and his ability to walk (putting Robert on a very low dose has helped with seizures but any increase will negatively affect his mobility). 

Robert is on five different seizure medications along with a bunch of other meds to counter-act side-effects of those medications. He’s on so many a doctor seeing Robert in the hospital questioned him being on so many and said he’s never seen a patient on that many anti-seizure medications. The doctor clearly needs to spend more time in the neurology unit. 

(He tried to make changes to Robert’s medication regimen but anyone who knows me knows that didn’t happen.)

Our hope is that this DBS will control Robert’s seizures so we can reduce his medications and he can maybe even regain some of his functionality and mobility. 

That’s not asking too much, right? 

Robert went through the two surgeries and we were able to move up the appointment to get the DBS activated. (Thank goodness the neurologist was on standby for jury duty and could squeeze us in!) 

Time to activate this baby! 

At the appointment, Robert and I patiently awaited the neurologist. I reviewed my questions I had written down and Robert cracked jokes. 

I thought about how fascinating this device is, and, really, nothing short of a medical miracle. Leads go into the brain, hook up to a battery in the chest and it can be controlled with a phone and a hand-held programmer device that goes over the implanted battery to activate it. 

Robert has been very lucky with the quality of his epileptologists even though he’s had several of them. His current neurologist (Dr. K) is kind, smart and takes his time to explain everything. He knows we’re a team and he is as hopeful about this working for Robert as we are. 

Another neurologist came into the room with Dr. K and she introduced herself as a fellow. She was learning about the DBS which I didn’t mind at all. They are part of an award-winning teaching hospital and I am thrilled to have these talented doctors and students as part of Robert’s care team. 

Dr. K explained the DBS has three settings and delivers a constant electrical current. It starts out on setting A which delivers a low electrical current, then after a month (if it’s not yet controlling the seizures), the patient (or caregiver) can move it to setting B which delivers a little more of an electrical pulse. Setting C is the highest setting and that is where most patients end up but it takes three or four months to get there after the initial activation. 

Dr. K activated the device, showing me the different settings and explaining some side-effects to watch for (depression or tingling on one side of the body). He explained how to control the device at home and said I could increase it to setting B after one month if Robert seemed to be tolerating it okay. 

He said another MRI may be needed to be sure the electrodes are still placed correctly but he didn’t think that was necessary just yet. 

It seemed simple enough to activate and control. It’s basically an app on a phone so I was comfortable with it once I figured out how to open the app and he took me through the steps to control it. 

How will we know it is working? If Robert has fewer seizures, it is working! Simple as that. Robert’s seizures come in clusters every two to three weeks. If the clusters don’t come, it’s working. If his seizures come as frequently as usual, we move to setting B. We left the office feeling very hopeful. 

This is going to work! I just know it. 

The next day Robert had a seizure cluster. I brushed it off since he was “due” (his seizures are pretty regular so I didn’t find it unusual that he had any). 

The day after he didn’t have any. Phew! 

The day after that, he had another cluster. Then another the next day.  

He continued to have seizures almost daily for six days after the DBS was activated. 

This was not a side-effect anyone expected. 

I was in contact with Dr. K’s office and was told on the sixth day to turn it off. 

It was heartbreaking to deactivate it. Robert had gone through so much (heck, we all had) to be able to use this device and now it is causing him more seizures. Knowing he had the electronics in his head and chest and it was just sitting there, not being used, going through all the surgeries and MRIs and appointments . . . 

Heartbreaking. 

I turned it off but did so while hoping the seizures would continue. I’ve never wished for Robert to have seizures but just this once I wish they would continue. I was hoping the seizures were caused by something else and that it was just a weird coincidence they happened after the DBS was activated. 

No such luck. 

The seizures stopped. He’s had a few (his normal) since then but nothing like the daily clusters he was having while the DBS was on. 

We had planned a long weekend beach vacation for later in the month and made the most of it. It was what we all needed after such a stressful and disappointing process the last few months. 

On the last day of our vacation Dr. K messaged me and asked if we wanted to try again with a different setting. Yes! I am hopeful there is a setting that Robert’s brain can tolerate. Maybe there’s a setting below A that we can start with instead. Maybe we need to leave it on longer than a week and let his brain adjust. Maybe we need another MRI to make sure everything is still located where it’s supposed to be. 

Maybe there is still a chance for this DBS to work for Robert. 

Today we go in to try again. I have more questions. Robert will have more jokes. We know we have an army of people saying prayers, sending well wishes and hoping for the best for this second try. 

Hope and support are what we are hanging onto. 

The Waiting

Lily was last seen in Grass Valley, CA

The waiting is the worst.

Waiting for test results.

Waiting to see if a new medication works.

Waiting to feel better.

Waiting to find a lost dog (Lily).

The waiting is the worst.

Waiting to see if Richard's extra pain is something new.

Waiting for Robert to finish eating.

Waiting for a test to even be scheduled.

Waiting to see if the sniffles develops into pneumonia.

Waiting to see if the pneumonia develops into sepsis.

Waiting feels like it sits in the half empty part of the glass.

Waiting is the worst for a glass half full girl like me.

I'm a doer. The waiting makes me "do."

I research tests and symptoms and disorders and diseases.

I print and distribute flyers and reach out on social media.

I create lists of questions.

I take vitals and keep logs and pour over them as if I were some grad student writing a dissertation.

The doing keeps me swimming in the glass half full.

When I am not doing - rather, when there is not anything to be done - the stillness of the waiting overwhelms me.

The waiting is the worst.

Caregiving Blog Party 2015

It is that time of year! Grab a cup of hot cocoa, a bag of tiny marshmallows (oh yes, I said a bag) and a few candy canes.  We are going to have fun this week!

Every year, Denise Brown hosts a Blog Party through her site for caregivers, CareGiving.com.  There are several other participants, including my husband who writes at PickYourPain.org and friends Kaye Swain (SandwichINK.com) and Shelley Webb (The Intentional Caregiver) along with many others.

Of course, no party is complete without prizes and presents! 

This week I will be talking about holidays, decorating, medications and advocacy and anything else that might come up (in caregiving, you never know). Each day I will give you a chance to win a copy of my book, “Forever a Caregiver,” – all you have to do is leave a comment on one of the blog posts.  At the end of the week, Richard and I will give away a grand prize of a $25 Amazon gift card. Visit either one of our sites to enter – just make sure you leave a comment in order to be eligible to win!

I am excited to participate again in this fun event and looking forward to reading the blogs of fellow caregivers. Getting a variety of perspectives during the holidays and during a caregiving situation is both helpful and unifying. 

To me, this season is all about being helpful and loving and giving and hopeful and bringing people together.  (I don’t expect much, do I?)

These may be high expectations for the season but we need as much goodwill and kindness now and all year long!

We just might need two bags of marshmallows . . .  

Another Medication Change

For someone who proclaims to loathe medication changes, I allow a surprising number of them.

One of two containers we use for meds for the week

A year ago, Robert’s seizure activity changed. He went from having one or two a day to having one or two a day and then having dozens every couple of weeks.  These clusters of seizures are scary since there is no telling when they will stop.  We use Ativan (also known as Lorazepam) to stop the seizures and have steadily increased his dose during these clusters.  We are supposed to max out at 4 mg per day but I have on rare occasions given Robert as many as 6 mg by the end of the day.  (I always check his vitals before and after doing so and always notify his neurologist of these clusters.)

Months before the clusters, the neurologist added Trileptal to Robert’s bucket of meds and after much trial and error with the dose finally settled on 150 mg in the morning and 300 mg in the evening.  It is a very low dose but anything more than this makes Robert irritable, grumpy and unhappy. 

Robert’s seizures continued to change over the past year with us seeing clusters of seizures every couple of weeks but days could by without any seizures.  The seizure activity increased significantly throughout the winter and the neurologist suggested the seizures could be “seasonal.”  In Robert’s case, much worse in the winter than in the spring and summer.  This seemed to be the pattern over the last couple of years and with another winter coming, the steady increase in Robert’s ammonia level as well (from years of being on Depakote), we discussed another medication change.

Robert before an early bedtime

Ugh!

Robert and I usually see the physician’s assistant when we go for the quarterly check-ups.  Julie is wonderful and smart and spends as much time with us as we need.  I am satisfied that she consults with the neurologist about any changes in Robert’s health and care and, frankly, she’s much easier to talk to than Robert’s neurologist. (Robert actually has two neurologists: one for his epilepsy and one for the movement disorder. The Epileptologist is the one that is great but not as easy to talk to as the other.)

At Robert’s most recent appointment, Julie and I had a long discussion about the high ammonia levels and recent seizure activity.  Robert slept through most of the meeting which caused Julie much concern.  The sleepiness is caused from his ammonia level being way too high (it is over 100 and normal is under 30).  Julie and I also talked about our concerns that winter is coming and the seizure activity is likely to increase.

Julie suggested a plan to decrease the Depakote and add a fairly newly FDA approved drug (Fycompa). 

As much as I hated the thought of going through another medication change, I knew we had to try.  The seizures last November alone numbered over a hundred – I do not want Robert (or us) to go through that again.  Plus, the ammonia level really is way, way too high.  Robert is already maxed out on Levocarnitine to help reduce that and we had a horrid experience with Lactulose so I won’t try that again.  Reducing the Depakote is the remaining, logical answer. 

Except Julie asked me an interesting question: of all the medications Robert is on, which one do I think provides the best seizure control?  My answer: Depakote and Clonazepam. 

Yep.  This is going to be tricky. 

After the appointment we had to wait a few weeks to get an approval for the Fycompa.  Once that was authorized, we added a very low dose (2 mg) of Fycompa at bedtime and also decreased the morning dose of Depakote by half.  After a week, we increased the Fycompa to 4 mg at bedtime, keeping the Depakote at the same lower dose. 

It has been just over a week since starting the new medication regimen.  We do see some side-effects of the new med such as sluggishness, being off-balance and an ever so slight uptick in irritability. 

We also have seen an increase of seizures over the last week which just proves my theory that Depakote is one of the meds providing the best seizure control for him.  We can’t have such high ammonia levels, however, so we are continuing with the new medication.  I am hoping the Fycompa will “catch up” and get the seizures better under control, particularly since winter is coming (I realize I sound like Jon Snow).

Taz attempts a selfie

What I have realized about these medication changes is that while I don’t like them and they don’t always work out, they are not the center of our universe. 

Robert still enjoys going to Day Program;

Richard still works on his water conservation efforts;

I still post silly pictures of my puppy (who is going on three!);

We all still participated in a caregiving study;

In other words, life goes on whether it is with new medications, seizures, mood swings or drowsiness. 

I may loath the medication changes but I am willing to give them a try in order to give Robert a shot at reduced or (gasp!) zero seizures. 

Yep.  Hope always wins. 

Epilepsy Awareness Month Recap

I thought I was going to take a break from blogging for a day or two after a month of posts but I can’t stop!

Okay, this will be short and there won’t be 30 minutes of video to watch (“Phew!” says Other Brother, who hasn’t quite caught up yet).

When I set out to do this video project, I wasn’t confident I could do one for every day.  I wanted to but wasn’t sure if I could pull it off (hence, all the disclaimers in the first post).  It is important to me to do something every November in support of Epilepsy Awareness Month and creating the videos seemed to be the most personal way I could explain the impact of epilepsy.  

In a third of people with epilepsy, seizures are uncontrolled.  Robert is part of this group and these are the people I want to focus on. As this group ages, what are the consequences of all those uncontrolled seizures, head trauma, medications and surgeries?

Robert is just one example of what can happen when seizures remain uncontrolled.  My focus on this is not meant to scare people who have uncontrolled epilepsy but just the opposite: Let’s focus on these difficult to control cases so we can raise awareness about what epilepsy does to a person over a lifetime. Let’s raise some money so research can be done on this group.

Let’s not forget about these people.

Let’s find a cure.

Let’s not give up.

Robert has not given up – not in the slightest.  He prays every day for his seizures to stop. Robert truly believes his seizures are getting fewer and he has hope and faith every day.

Every. Single. Day.

If Robert can have hope every day, if Robert can get up every day and be positive in spite of his legs not working as well as they used to or his labored breathing making it tough to talk sometimes then I can post a video every day for Epilepsy Awareness Month.

The links to each post are below. Please let me know if you have any more questions for Robert or about epilepsy and I will be happy to post a follow up video.

After all, I don’t want my camera to get rusty!

Epilepsy Awareness Month Day 1: Kick-Off to Epilepsy Awareness Month 2014

Epilepsy Awareness Month Day 2:  Surgeries and Seizures

Epilepsy Awareness Month Day 3: The Decision to Call 911

Epilepsy Awareness Month Day 4:  Just Two Guys Talking

Epilepsy Awareness Month Day 5: Talking About Medications

Epilepsy Awareness Month Day 6: Advocacy and Fun

Epilepsy Awareness Month Day 7: Everyone Loves a Parade

Epilepsy Awareness Month Day 8: Seizure Triggers and Routines

Epilepsy Awareness Month Day 9: Impact of Epilepsy on Caregiving

Epilepsy Awareness Month Day 10: It’s a Small World

Epilepsy Awareness Month Day 11: Driving and Epilepsy

Epilepsy Awareness Month Day 12: Epilepsy and Working

Epilepsy Awareness Month Day 13: Enjoying the Simple Things

Epilepsy Awareness Month Day 14: Ack! The Caregiver is Sick

Epilepsy Awareness Month Day 15: Friendships, Bonds and Blessings

Epilepsy Awareness Month Day 16: Epilepsy and Religion

Epilepsy Awareness Month Day 17: Photo Surprises

Epilepsy Awareness Month Day 18: Caregiving as a Team

Epilepsy Awareness Month Day 19: The Careful Dance of Sickness

Epilepsy Awareness Month Day 20: Memories

Epilepsy Awareness Month Day 21: Managing Incontinence

Epilepsy Awareness Month Day 22: Tips for a Successful Respite

Epilepsy Awareness Month Day 23: Spreadsheets, Spreadsheets and More Spreadsheets

Epilepsy Awareness Month Day 24: Mood and Medications

Epilepsy Awareness Month Day 25: Epilepsy and Dental Care

Epilepsy Awareness Month Day 26: Epilepsy Rant

Epilepsy Awareness Month Day 27: Gratitude

Epilepsy Awareness Month Day 28: Brotherly Love

Epilepsy Awareness Month Day 29: Q&A with Robert and Trish (Part 1)

Epilepsy Awareness Month Day 30: Q&A with Robert and Trish (Part 2)

Robert is Back Home!

After nearly two weeks in the hospital and 48 days in a Skilled Nursing facility, Robert is home!

Packing up to leave the SNF

For weeks I wondered if he would be able to come home or even if I could continue to care for him at home.  By the time he went into the hospital on July 1, he couldn’t walk. Heck, he couldn’t even transfer from a wheelchair to the bed.  We were dressing him, cleaning him, brushing his teeth and dealing with days of excessive sleepiness and grogginess.  Not to mention, his extreme crankiness (and mine!). 

I didn’t think I would see the old Robert again and I certainly didn’t think he would walk again. I even came to the realization that continuing to care for him at home was not in the best interest of anyone. (That was a really tough realization and I will write about that more in depth soon.)

Robert started a new medication called Sinemet while he was in the hospital. It is supposed to help with Parkinsonism which is one of his new diagnoses. The goal was to also get Physical and Occupational Therapy while in the SNF.  Upon discharge from the hospital, the goal was to bring him home.

A lofty goal considering he had to be discharged using a gurney because he couldn’t transfer from the bed to a wheelchair.

Robert's last day in the SNF - Excited to come home!

Once settled into the SNF, Robert loved being served meals in bed and watching television. However, he was irritated with the physical therapy staff – at first.  They were making him do things that hurt his muscles or (worse) stopped him in mid-routine of brushing his hair for the third time or shaving for the fifth time. (Some people have trouble getting their caree to bathe or do their own personal grooming. I have the opposite problem – Robert could spend hours on personal grooming if I let him!)

The physical therapy team persisted.  Robert got into their routine and, for the most part, was cooperative and even enthusiastic. We celebrated each milestone from getting out of bed to learning to use a transfer pole to leg exercises and eventually walking with a walker!

There were days he didn’t want to do the exercises but I participated with him one day and suggested they do PT before breakfast since he was already awake and dressed and just waiting around for breakfast to be served.  That seemed to work except on the days when his excessive drowsiness came back to haunt him (the doctor suspects that might be caused from high ammonia levels so we’re keeping an eye on that).

The physical and occupational therapists came to know Robert and worked around his drowsiness and his occasional reluctance.  They commented on how polite he was and how hard he was working.

The combination of Sinemet, the PT and OT and Robert’s own persistence has worked miracles. 

Robert walking again!

My hope was to get Robert back to where he was in June – using a wheelchair and being able to transfer without us having to lift him. Then I knew he could come home.

He has exceeded those hopes and blown them out of the water! He is walking with a walker but we’re using a wheelchair for long distance as he still gets tired easily. He is dressing himself – including those difficult socks! He is brushing his teeth by himself and is not nearly as sleepy. He actually moves quicker and is staying awake and alert throughout the day. Robert is cooperative and pleasant and is continually surprising us with his progress.

Robert is happier than I have seen him in a very long time. He is grateful to be home. He said he liked the SNF but he likes being home “a lot more.”

Robert was happy to see all three dogs (yes, even Taz!) and said they were all “good dogs.”

Robert's first meal back home: Cheeseburger & shake --
and a little bit of Rocky Road ice cream

Robert told me and Richard on his first night at home, “It is a very happy day to be back home.”

Robert is back – not just back home but back to himself and that makes for a very happy day indeed. 

The reality is that Robert will continue to need physical therapy and for us to help him with “cues” so he doesn’t slip back into old habits. He will need to continue to be monitored to see if the Sinemet needs any adjustment. We still know with all of Robert’s diagnoses, there is no “cure” and we will see a steady decline but we have reset the starting point. We have drastically shifted where we were just a few months ago. 

Even though there is no cure and the reality is that the future holds a decline and probable hospitalizations, the moment right now is what we are celebrating. And if there’s one thing Robert has taught me, it is to appreciate the moments.

The future cannot take this moment from us.

This Thing Called Hope

We are now done with Week 2 of Take 2 of the new medication.  We were this close to not making it through Week 1 but we all pushed through and decided to give this new medication more time.

Getting a nice card in the mail helped get us through Week 1! 

Richard and I were more prepared this time going into the new medication at the lower dose than we used before.  We knew what to watch for: excessive sleepiness, trouble walking and extreme irritability.  I was hoping Robert could tolerate the lower dose without those side-effects and I was also hopeful we would see a reduction in seizures like we did at the stronger dose.

I am nothing if not hopeful.

I wanted to wait to start the lower dose of the new medication until Robert’s cough subsided but his cough is fairly constant and just not going away. I finally started the medication at the end of a day in which Robert had five seizures (one being four minutes long).  It would have been nice to have Robert feeling one hundred percent so I could be certain any behavior or mobility changes were due to the new medication but the excessive seizures were the tipping point for me and I decided we couldn’t wait any longer.

Week 1 was difficult.  Robert was so tired, most days he couldn’t even manage dressing himself.  He was having difficulty walking and had screamed at his afternoon driver that he was lying about a story the driver was telling Richard. Robert was sometimes slurring his words and got so mad at me he threatened to call the police and have me arrested.

He also still had his nighttime cough and threw up a few times during these coughing fits.

It was not a fun week.   

Why would I even consider continuing the medication into Week 2 after that difficult first week?  Because we saw a decrease in his seizures.  The seizures didn’t stop completely like they did on the higher dose but they definitely decreased.  I was hopeful his body would adjust to the medications and that eventually he wouldn’t have the mobility and behavioral side-effects and we could continue to see a reduction in the seizures.

I even hoped once he adjusted we could increase the medication to the point of it stopping his seizures without further side-effects. Could this be the final piece to the intricate puzzle of his medications to stop his seizures?

Hope keeps me going but I find myself tempering it with logic and reality; spreadsheets and logs. Sometimes I wonder if I can ever allow myself to experience unencumbered hope.

The jury is still out on Week 2.  He continues to have trouble walking.  His right foot drags so much, he even has difficulty making it move at all – sometimes it seems “stuck” and he just can’t get it to move forward.  He is still irritable but that seems to be lessening – he hasn’t threatened to have me arrested but he did get so angry at Richard that he predicted a not-so-pleasant-yet-extremely warm place where Richard was going to end up.  

His seizures are still fewer than they were before using this medication.  He went a couple of days without any seizures and then has had one short one each day.  There haven’t been any cluster seizures for ten days and for that, I am extremely grateful.  Before this medication he was having cluster seizures several times a week.

As of yesterday, I thought he was getting used to the medication. He was alert, less irritable and back to his joking-around self. Today, he has slept most of the day (and that includes dozing while eating Easter Brunch) but that could be because he has become accustomed to sleeping until noon on the weekends or because the coughing at night is interrupting his sleep. 

The neurologist’s plan calls for increasing the dose after two weeks.  I’m not prepared to do that just yet.  I talked it over with Richard and we agree that keeping Robert on the same dose for another week is the best idea.  The seizures have decreased and the mobility and behavior issues might be turning a corner.  I don’t want to increase the dose just yet but I am not ready to give up on it either. 

I asked Robert (the worst self-reporter in the history of self-reporting) how he was feeling on the medication and no one will be surprised by his response:

“I feel excellent.” 

Going into Week 3, Robert feels excellent and I feel cautiously hopeful about the medication yet concerned about the continued cough and mobility issues. 

I will continue to use the seizure, vitals and behavior logs to logically determine if Robert should continue on this medication or if, perhaps, he has another bout of bronchitis or pneumonia working on him.

The logs make me feel a bit more in control of a very fluid and quite unpredictable situation, but hope lets me believe in the magic of excellent.

Bring on Week 3! 

Neurology Appointment: The Good, The Bad, The Ugly

The Good:  For years, Robert was treated for his epilepsy at UCSF which has a prestigious epilepsy center.  Robert tried out the Vegus Nerve Stimulator, participated in a study for the Deep Brain Stimulator study as well as underwent two brain surgeries by world-renowned surgeons.  He really has received the best care by the brightest researchers in the field of epilepsy. 

Even though Robert’s seizures continue to be uncontrolled, his seizures changed from Tonic Clonic (formerly known as Grand Mal) to Complex Partial.  The doctors at UCSF developed a regimen of medication for him which allows him to still enjoy daily activities and to have some independence.  Robert had improved seizure control with the Deep Brain Stimulator until he developed a life-threatening infection which meant he had to have the hardware removed from his brain and chest and withdraw from the study.  

When I took over his care, I grappled with the decision of keeping him at UCSF (which is a couple of hours from where we live) or switch him to the local UC epilepsy center which also has a stellar reputation.   I chose to switch him to the local UC Neurology clinic and hit the jackpot.  It turns out Robert’s new neurologist did her fellowship at UCSF and remembered Robert! 

This was such a special find because here was someone who knew Robert before his steep decline of the past few years.  She would understand how much his mobility and cognition had changed.  Any hesitation I had about switching Robert from UCSF was gone once I found out she used to be involved in his care.  I had high hopes he would get great, personal care. 

She did not disappoint.

At his most recent neurology appointment, the neurologist did the usual battery of tests, listened to my concerns about the increased weakness on his right side and the dragging of his right foot when he walks. She confirmed he showed increased weakness on the right side and attributed it to his recent bout of pneumonia and sepsis.   It’s fantastic to be validated and not have the doctor think I’m a crazy, over-protective sister.

Oh, wait – I suppose she could still think that. . .

Robert was put through a battery of tests:   Remember three words: Apple, Table, Penny (Robert remembered only Table); Write numbers in this circle so it creates a clock (Robert got up to the number 20 before stopping and staring at the page for a long time, something telling him something wasn’t quite right);  What city/state/country is it? (he answered “California” for most of these questions).  

He was asked to write a sentence and painstakingly wrote out, “God loves you.” 

He wrote that same sentence for his memory specialist too and it’s always fun to see the look on their faces when they read his sentence.  They don’t really know what to make of it but always say, “Thank you.”

The Bad.  Robert’s neurologist is leaving the clinic!  Ugh!  I’m sure she has a wonderful opportunity ahead of her because she is extraordinarily smart and really knows her stuff.  I certainly wish her the best but the selfishness in me wishes Robert could follow her wherever she’s going.  She was so sweet with her goodbye and said Robert really has a special place in her heart and told me about the other epilepsy specialist Robert could start seeing.  I have to consider what’s best for Robert and ask Robert what he’d like to do (maybe going back to UCSF is an option) but this was a real disappointment.  We are going to be sorry to see her go but I am excited for whatever she is going to do.

The Ugly.  Of course, this involves New Home.  I have always told New Home that I will take Robert to his neurology appointments, there is no need for anyone else to attend and I will update them on what happens.  For whatever reason, they decided this time the House Manager should go.  They weren’t even going to tell me – the only reason I found out is that I had been asking for Robert’s seizure log for a week and hadn’t yet received it.  I was told I would get it when House Manager came to the appointment. This wasn’t House Manager’s call (I actually think she does a terrific job) but came from “higher up.”  I spent an hour first talking to the House Manager, then her supervisor (who only could tell me they “prefer” to do it this way without really knowing why) and finally talking with her supervisor.  Thankfully, this person was reasonable (although she was standing her ground for most of the conversation).  I eventually convinced her we had been operating this way since Robert moved in!  She relented on the directive and I was able to go to the appointment without a babysitter (although sans seizure log). 

I also found out that the neurologist had written an order for non-generic drugs for Robert and sent it to New Home’s pharmacy back in April.  For some reason, New Home hasn’t been getting these scripts!  So frustrating!

More Good.  IOkay,  can’t leave on a sour note, so I will happily share that I was able to leave my Robert’s Sister flyers at the neurology clinic so others can easily have access to epilepsy facts and resources as well as Robert’s story. 

Bonus Good.  As far as what plan the neurologist has for Robert, she talked about new drugs coming on the market but agreed with me she’d like to try the non-generic medications he is already taking first.  She also said when the Deep Brain Stimulator is approved by the FDA, we should consider that for Robert again since it seemed to help him.  The previous infection as a result of the device was a fluke and may have had more to do with Robert’s living conditions than anything (this was right before I took over his care).

I am very pleased with the appointment and can forget about the trouble with New Home. Most importantly, I am hopeful for these treatment options.

Hope outweighs the bad and ugly any day!  

Another Caregiving Hat

Hubby goes in tomorrow for surgery to replace his intrathecal pain pump.

It’s also my birthday (let the singing begin)!

Hubby has been in pain since I met him (although I try not to take it personally).  Mere weeks after hubby’s son was born, Hubby was traveling back to his baby from working out of town when he was rear-ended by a drunk driver (the person who hit him was driving on a suspended license and it was his 4^th DUI). 

Hubby dealt with major injuries and spine pain and was on a lot of pain meds.  He was on quite a bit of pain medication but, over time, went off it and did his best to control the pain with over the counter pain medications because he didn’t like the stronger stuff. 

We met during this over-the-counter drug phase, we married, his pain increased (I tried not to take this personally). 

Hubby saw a pain specialist (and a chiropractor and an acupuncturist and massage therapists and whoever else might have been able to help relieve the pain).  The pain specialist said he had Degenerative Disk Disease caused from the accident.  The doctor tried all kinds of treatments (nerve blocks, stronger medications, physical therapy to name a few). 

Nothing brought him relief.  Hubby was debilitated by the pain and he could no longer work.  He was declared disabled, we took a financial nose-dive, hubby’s view of himself took a major nose-dive, depression enveloped his entire being. 

We had three kids under the age of nine, it was early in our marriage, our finances were a mess and hubby was in severe and chronic pain.

It was ugly.

Hubby tried all kinds of medications to bring him some relief from the relentless pain.  Some medications incapacitated him so completely, he was unable to drive or function as a father or husband (sheesh, he could barely get out of bed).

I should also mention his mood was, well, on the cranky side.   The kids and I all had to not take this personally.

The situation was unbearable for everyone and we had to come up with another solution.

The intrathecal pain pump gave us hope.  The pump promised less pain (never promising to rid Hubby of it completely but promising his life back) and it gave us hope that the strong narcotics hubby was on could be discontinued (or, at least, greatly reduced). 

Fentanyl is delivered from the pump through a catheter into the area in the lower spine causing the pain.  Because the medication is delivered directly into the spinal column, there are fewer side effects from the medication and Hubby is able to actually function without a foggy brain and have reduced pain.  He still takes medication to help control the residual pain but it is nothing like those early days of our marriage (or right after his accident). 

The pump is not a cure-all.  He still has reactions to the oral medications which can cause all sorts of physical and behavioral problems (for instance, he was on Neurontin for quite some time until it turned Hubby into an angry, out of control stranger and I told the doctor he could either live with Hubby himself or change the medication).

Hubby no longer takes Neurontin.

Thankfully, we’ve had a great stretch without behavior issues or depression.  Hubby still has pain but he knows how far he can push himself and when he needs to rest.  I’ve learned to stop telling him what he shouldn’t be doing because it will cause him more pain.  The changes we’ve both made have helped make us happier people and have kept us married for close to 15 years.

The pump runs on batteries so needs to be replaced every few years.  This will be his 3^rd pump (well, 4^th if you count the time the doctor accidentally installed it upside down – oops!).  The device needs to be replaced as soon as possible because it is showing signs of not working and the battery going out (giving Hubby either increased pain or withdrawal symptom s or both).

We found out just before Christmas that a cancellation came up on the doctor’s schedule for tomorrow so surgery has been scheduled.  Hubby feels terrible that he is having surgery on my birthday but I think Hubby having pain relief for a few more years is a pretty terrific present (although – shhh, don’t tell Hubby – it definitely gives me “you owe me” ammunition to use in the future if I ever need it!).

For the surgery, I plan to wear my Mickey Mouse ears from my 50^th birthday celebration in Disneyland last year which, for me, is just the perfect caregiving hat.

Week 3 of Epilepsy Awareness Month

Robert was diagnosed with epilepsy 40+ years ago but, this month, I found that I still have so much to learn about epilepsy.  Researching a variety of sources to share one fact a day has been tremendously helpful to me and, I hope, to others.  I have become aware of so many organizations passionate about advocating for a cure which fills me with such hope and optimism that it can be done!

I’ve also met many wonderful, hopeful, tenacious, persistent and resilient people who either live with epilepsy or care for someone who is living with epilepsy.  I almost feel guilty (you know how I am) because I have personally gained so much from this Epilepsy Awareness Month – and, it’s not even over!

In case you missed any of the facts last week, I am happy to share them here (I’ve added links to get more information and expanded a bit of the information also since we have more room here than Twitter or Facebook provides).   The first two weeks of facts can be found here and here. 

Fact 13:  Inspiration and motivation to help sometimes comes from having a personal experience with epilepsy (and other conditions or diseases).  My passion for epilepsy education and awareness stems from having a 46 year old little brother with lifelong, uncontrolled epilepsy.  Greg Grunberg (he starred in the TV show Heroes) started the Talk About It Organization because his son has epilepsy. They have a terrific website where lots of different people do actually talk about epilepsy.  Susan Axelrod (whose husband, David Axelrod, was a senior advisor to President Obama) started the organization CURE: Citizens United forResearch in Epilepsy because their daughter has epilepsy.  These are just two of the organizations doing great work to spread awareness and education and raising money for epilepsy research. 

Fact 14:  The CDC reports that as many as one third of people with epilepsy and recent seizures have not seen a neurologist within the past year.  The Epilepsy Foundation and The National Association of Epilepsy Centers provide information about where to find epilepsy specialists.  A referral from a primary care physician can be a good place to start too.  I suspect not being able to pay for care and medications might be one reason people haven’t seen a neurologist.  If that’s the case, check out Medicaid benefits in your state.  Start here if you live in California.  It can be a difficult process to get through but worth it to have access to a neurologist.

Fact 15:  For the 30% still searching for seizure control, approval of new medications brings some hope.  A few new medications coming on the market in 2012 are Potiga (recently approved by the FDA), Clobezam (also recently approved by the FDA but used elsewhere for years) & Sabril (which has been used in Canada for years).  Like any other anti-seizure medication, there are serious side-effects to watch out for (Sabril, for instance, causes vision issues in as many as 1/3 of those taking it).  If current medications aren’t satisfactorily controlling seizures, these might be worth a question to the neurologist.  

Fact 16:  Did you know November is also National Caregiver’s Month?   (Okay, it’s also National Raisin Bread Month but, as most of you know, I can’t cook so that’s less of a priority.  Although, I do love a good raisin bread.)  Back to the epilepsy facts . . .

Mood disorders are related to epilepsy and can be a side effect of either the seizures or the anti-seizure medication.  Caregivers can help provide valuable information to the neurologist about possible depression in the person with epilepsy as they can sometimes spot the signs of it first. 

Caregiving Training Wheels

Now that I am a caregiver for my youngest brother, Robert, I have realized my role in the family throughout my life has been that of caregiver. Providing care for Mom when I was a teenager and she was suffering horrible, debilitating, suicide-attempting depression and then again twelve years ago when she was terminally ill with liver cancer, were really just the training wheels of caregiving for me.

My first book Forever a Caregiver covers the “training wheel” experiences, the struggle to accept my family role as caregiver and finally appreciation of my family and acceptance of my role. Caring for Robert, working to help other caregivers and writing about these experiences could not have come about if I hadn’t fully accepted and appreciated my family and my caregiving role.

I wanted to give you a glimpse into Forever a Caregiver and have included an excerpt below. (If you are interested in purchasing you can do so either through Lulu or by sending me an email and I can ship to you with a personal message):

“More than a week passes after Mom’s birthday celebration when I finally call to check on her. It’s odd that Mom didn’t call me yet and it is so easy for me to let time slip with all the activities the kids are involved with, working, trying to find time with Richard – ah, life gets so busy. I usually check in with Mom more often than once a week so am feeling guilty about not calling sooner. Guilt is as much a part of me as my blue eyes and freckles, permeating everything in my life. Wins, losses, relationships, disappointments and successes. All are seen through a shroud of guilt. I love to win but feel guilty someone else lost. If I lose, I feel guilty I didn’t try hard enough to win. Am I being a good wife to Richard? Are the kids getting enough of my time? Did I do a good enough job with that work project? Guilt, guilt, guilt.

“I have learned to live with guilt by wadding it up into a little ball and pushing it into a tiny, dark corner of my psyche, not letting it get the upper hand when making decisions but when I don’t call Mom at least once a week, I know I will experience guilt. Guilt springs up, dances around wildly and stomps on my stomach.

“I tell myself this is normal.

“After the kids have been fed and have found a movie to entertain them this summer evening and Richard finds something to watch on the Sci-Fi channel, I snuggle into a corner of the couch for my visit with Mom. I ask her how the doctor’s appointment went. She hesitates and is clearly reluctant to tell me anything which is always a very bad sign. I press because I know she is holding something back and will eventually tell me if I ask her enough questions.

“Succumbing to my relentless barrage of questioning, Mom tells me that she actually had a couple of appointments last week. She first saw her doctor who, after she explained her stomach pain, ordered an ultrasound for her gall bladder. She went to the ultrasound appointment and the technician scanned her entire stomach, not just the small area of her stomach they had done before when she had gallstones. Mom said she knew there was a problem by the look on the technician’s face. Mom’s concern was confirmed when the technician called a doctor into the room and the doctor informed Mom that her liver was enlarged and covered with numerous suspicious spots. He immediately ordered a chest x-ray which then showed a mass on her upper right lobe.

“The doctor told Mom he is certain she has cancer.

“I haven’t called her in a week. It’s only been a week! How can this happen in a week?”

Have you had trouble accepting your role in the family? Are you the caregiver in the family or is that role filled by someone else? Have you ever thought your childhood experiences were the training wheels for what you are going through now? I'd love to hear your thoughts.

Ice Cream and Emus

Going to the California State Fair is one of my favorite summer activities. I can’t explain it but am pretty sure my love affair with the State Fair began when my daughter was just two years old. We would go on “kid’s day” so admission was manageable (free) and we would bring in our own food (oops, did I say that out loud?! Isn’t that against the rules? What is the statute of limitations on that?).

Daughter and I would meet friends and see all of the animals – petting zoo, livestock, baby animals, horses and elephants (my now grown, college-age, Animal Science major loved animals even back then). We would sometimes drag my Mom with us who, after a couple of years of walking around in 110 degree temps at our hyper-speed pace, was suddenly “busy” with “other plans” during every single day of the State Fair. What are the odds?


Hello!

This year, Hubby and I attended the fair with Robert. A few things have changed since Daughter was little and Grandma trekked through the fair with us – the weather was milder, I signed a petition to remove the live births from future fairs and, in my own version of a protest, refrained from seeing the baby animals (but, I confess, couldn’t stay away from the kangaroos and emus).

I’m happy we didn’t skip the emu because Robert was fascinated with this creature! Every time the emu ventured over to us, Robert would say, “hello” in such a way I expected the emu to respond back!

Tools for Your Caregiving Tool Belt – Support for the Caregiver

We’ve added Education and Navigating Care Facilities & In-Home Care to your caregiving tool belt. We’ve also given a few tips on Navigating Government Programs (which is my personal favorite although it is the most exhausting!). After all that work, the caregiver now needs to do a little something for themselves.

The hardest part of finding help for the caregiver is actually convincing the caregiver how important it is to take care of themselves. In my “Caring for the Caregiver” post, I mentioned women caregivers are six times as likely to suffer from depression or anxiety than their non-caregiving counterparts. Let’s try to fix that.

For many conditions and diseases there are websites and online support groups supporting either the person living with the condition or their caregivers. In-person support groups are also available but many caregivers may find that it is too difficult to find care for their loved one while they attend the group meetings. Others may not be comfortable talking about their feelings or problems in a room full of strangers (even if they are in the same boat).

Online support can be a lifesaver for those who feel alone. This allows for a sense of community as well as an opportunity to learn how others solved problems that we may not know how yet to solve.

The Unknown

“Large area of encephalomalacia” says Robert’s recent MRI report.

Well, of course! How obvious! That explains so much!

Huh??

Even the wonderful world wide web doesn’t give me much more of a definition than “softening of brain tissue.” I don’t have Robert’s previous MRI report so don’t even know if this is something new and won’t know until we see his neurologist on Wednesday. I just know I wouldn’t want my brain to soften and am doing mental exercises as we speak (not that I even have the foggiest idea if that helps prevent softening).

Because we want to rule out the possibility of a stroke, Robert had an MRI last week. He is having more memory problems, dragging his right foot more than usual and also having trouble using his right hand to button his shirts. (Oh my god. Please tell me I don’t have to learn to sew. Sewing large buttons on each of his shirts would take me so long I’d have to quit my job and hire a small army of seamstresses to accomplish the task. Add to my to-do list: search the internet for large buttoned shirts.)

Effort

Sometimes I can be a little preachy – just ask my kids. Or my husband, for that matter. Okay, ask anyone who knows me. Today, wonderful readers (and I do think you’re wonderful because I am just amazed I have readers!), you will find this out about me too.

It bothers me beyond belief when people don’t put their full effort into whatever it is they are working on. Why not put in 100% (or more) effort? What makes people just do enough to get by? Why waste talent and energy and intelligence? Why give up just because something might be a little (or a lot) challenging? My favorite quotes are those dealing with persistence, tenacity and never giving up.

“Failure is falling down nine times and getting up ten.” -- Jon Bon Jovi

“Success consists of getting up one more time than you fall.” -- Oliver Goldsmith

As a part-time freelance writer with a goal of doing so full-time, quotes like these have to be my mantras or I would never get anything published.

The topic of effort has been on my mind lately because I find myself comparing the effort Robert puts in to every day activities to an Unnamed Son’s attitude of skating through school (and life). It takes Robert almost two hours to shave, change and brush his hair in the morning (and that’s without a shower!). It takes Unnamed Son thirty minutes to get ready in the morning (one minute to shower, change, brush his teeth, do his hair and put in his contacts and 29 minutes to let the shower run for no reason).