Seizures & Meds

Here is a post I made earlier tonight on a Seattle Brain Injury MeetUp.com Group Discussion Board:

Background info: my husband (left-hemisphere stroke in Apr. 2008) started having seizures in Aug 2008. He has severe aphasia and profound oral apraxia and cannot talk or write. He can only draw, so in turn, we are left wondering how each med really affects him. It's up to me to report to the doctors anything I've noted since he started each med. So, this is all me (wife and caregiver) reporting this info, not the patient/stroke-survivor/person on the seizure meds.

In Aug 2008, he was put on Dilantin (phenytoin). I really wanted to get him off of the Dilantin as I noticed his comprehension and awake-time-alertness decrease significantly (and there wasn't much of either of those to begin-with anyway). Another tidbit regarding Dilantin, our neurologist/epileptologist stated that some of his students in his UW classes have epilepsy and they have commented to him that while they were on Dilantin they would have to re-read their lecture notes several times to just begin to grasp the info, and then when they went off of Dilantin they felt their IQ increased by 10 or 20 points--they seemed to "get" stuff the first time they heard it, they didn't have to study as hard as they did when they were on Dilantin--I found this info VERY interesting and useful as my husband was relearning to do SO much regarding basic living (e.g., getting dressed, eating with a utensil, etc.) as well as more complex things (e.g., writing, copying letters, etc.).

Dilantin didn't control the grand-mals, so then Lamictal (lamotrigine) was added a few months later to his regimen.

The Dilantin and Lamictal didn't control the seizures either, so then a third anti-seizure med was added several months later (maybe 6) which was Topamax (topiramate). The way the neurologist/epileptologist explained it to me was that Topamax was originally created for people with migraines and it works on several proteins in the brain (I think I recall him saying "7 proteins"), so our hope was that since the other meds hadn't controlled his seizures, this one would increase the likelihood of controlling them since it works on more proteins in the brain.

He was still having 3 to 6 grand-mals a week and in Aug 2009 he had three grand-mals within 24 hours. At that point his doc prescribed Lorazepam for him to take if he ever had 2 grand-mals within a 24 hour period again. He was admitted for long-term video-EEG monitoring (LTM) in Sept. 2009 and after 5 days, they found the location in his brain that the seizures seemed to be starting or being initiated by his brain--it was the motor-strip and specifically, the part of his left, top brain that controlled his right hand... so it was decided that we would not do the brain surgery to remove that piece of his brain (to control and stop the seizures from being initiated) since we didn't want to destroy the chance that he would regain some of his hand and arm movement, or possibly affect any of the walking-ability that he has regained since the stroke.

As he was going to be discharged from that LTM, I asked that he be put on Keppra and to not be put back onto Dilantin (since they remove you from your anti-seizures meds so you'll have seizures while in hospital and hooked-up to their EEG cables). Also, I had heard great things about Keppra from a lot of people and via my own research (i.e., Kessler Institute for Rehab was doing a clinical trial investigating Keppra's effect on Chronic Aphasia--as though it might help it).
Another component for me not wanting him to go back on Dilantin was that I overheard hospital roommate (also there for LTM) say that they heard that Dilantin can actual increase the amount of grand-mals you have if you're having more than just petite and/or partial seizures. Argh! That frustrated me to hear that--no wonder his grand-mals were increasing... but then the doctors should know what they're doing, right?!?!?!?!
Then, the last med we have added to the 'ammo' against seizures is Lorazepam. Again, this was from overhearing our hospital roommate talking to his doctor on the other side of the curtain. He wanted to leave the LTM since he was having so many seizures, and the doc suggested he stay one more night but that he's give him some lorazepam to calm his nerves and to not let the seizures spread as far.
Ding, ding, ding--a light bulb went off in my head... "Couldn't we use that at home to control the seizures when my husband feels the grand-mal starting?" Sure enough, we now always have one 1mg tab in his pocket and some in my purse. He can sense something when a seizure is starting, so he does his 'routine' to stop the seizure: a lot of stretching his right hand, swinging his left arm, bending at the knees/very controlled squatting, and usually all of this takes place in front of the mirror--I think it helps him to see his body or something (again, since he can't talk or write or understand a lot of what I say so I can't really ask him, I can only guess). If it continues to get worse, he also opens the blinds, turns on the lights, opens the windows--he seems to like it cold and bright. If it continues to progress, he'll clear everything out of his way in a pathway, like the hallway, and he'll pace up and down the hall while breathing very controlled and swinging his left arm in an exaggerated way. If it's still not getting better, then he'll take a 1 mg lorazepam and go into the bedroom and continue the stretching, swinging, and squatting routine in front of the mirror.

He is currently on Keppra (1000mg 2xday), lamotrigine (400mg 2xday), a decreasing dose of topiramate (was on 50mg 3xday for 12 months & is now on 25mg 2xday--hoping to get rid of this one as he starts to talk again since it inhibits word-retrieval), and the 'as-needed' lorazepam (1mg at a time, not to exceed 5mg/wk).

I am happy to report that with the Keppra and the lorazepam on board (along with lamotrigine and topiramate), and maybe even his 'natural' methods of controlling the seizure, he has not had a grand-mal since Sep 2009. I can't say that I miss seeing him lay on the bed crying when he knows one is coming-on, and then convulse and foam at the mouth and stop breathing and turn blue, and then slowly after 30 minutes start to 'come to' again. I think the 30 minutes after the seizure also reminded me of the initial stroke, especially when he couldn't focus on me as though he couldn't even see me, couldn't move his right side, couldn't talk, couldn't sit up, kept looking up to the left like something was up there... just freaked me out more than the seizure itself I think.

Man--this has gotten long--sorry about that.
~Julie

Acceptance or Resistance

Is this Acceptance or Resistance that I'm feeling?

I am at a point of what feels like so many 'heavy' decisions but I don't even know 'which way is up' right now. I feel all turned-around and unable to make even one big decision.

I was laid off in February and kept Morgan in daycare because I thought I would find work fairly quickly; now I am struggling to forgive myself for paying-out that money each month. However, with that said it's so risky to forfeit a daycare spot downtown and that seemed to be a dumber choice at the time than keeping her at home and saving money.
I accepted the fact that I didn't find a job straight-away and used the last few months to grieve and finally begin to deal with such a big loss and the daily struggles that go along with living with life after stroke and Wayne's eagerness, yet inability, to be independent and a fully-functioning adult.
I have spent hundreds of hours applying to numerous 'discount' programs based on being low-income and disabled. We were accepted to some (i.e., Seattle Senior Services' Minor Home Repair and City of Seattle's City Light and Public Utilities discount program) but have been denied many others (e.g., King County Home Repair; DSHS--food stamps, Medicaid, Cash benefits, WIC, Welfare; etc).
I need weekly counseling appointments because I am finally dealing with the grief and loss of Wayne's stroke, but I can't afford the $35 copay for each visit... that's about $135 a month! And in the midst of trying to decrease our monthly output so that our home loan modification can be approved, I can't justify $135/month on my financial output spreadsheet.
I am now looking at changing Morgan to a school closer to home that is cheaper and to only a part-time status. It has been good having her gone and in a stable place during the day so she hasn't had to witness my melt-downs. With all the 'work' that I have been doing in regards to the low-income applications for discounts and assistance programs, I would've likely been pushing her to the side and telling her to be quiet and setting her in front of the TV anyway. I am BUSY during the day. Even now, I'm wondering if I should just keep her home with me to save on daycare all together... but if I find a job, I'll need her in daycare and it takes a month or more to get into one, if there is even an opening at all.

I feel like I step onto one path and that's not right, so I try another path and that's not working for us either...

As I told someone yesterday, actually it was Morgan's daycare administrator--I find myself talking to just about anyone who will listen these days--I have no idea of what lies ahead and therefore I can't plan for it. One example is I don't know if I'll have a job...

Is this what happens to families that have a stroke at such a young age and can't draw-on retirement early?
Is it just part of the path to lose our house?
Is it just part of the path to be in the 'black-hole' of earning too much to receive aid but not enough to get-by?
Do I just need to resign to these facts and "accept" them or is it good and diligent to continue to "resist" these as truths? Acceptance... or resistance.... ? Maybe it'd be easier to stop resisting all that I'm being told...

Maybe I need to just accept that Wayne has stopped progressing.
I might just need to accept that I will never have a full-functioning spouse again and that it-is-all-on-me.
Just accept that we will lose the house.
Maybe just accept that more than 50% of who I am now is a 'caregiver'. I mean, that's what happens when you become a parent, right?
Maybe I just need to accept everything that has plopped itself on my plate and say, "Okay, thanks for defining my new life for me" and stop fighting and pushing-forward and proving everyone and everything to be not-quite-correct and that we can do this if we just put our minds to it and a lot of effort behind it.

Accept all that? I do feel like that would be easier, much easier than resisting it all. But that would mean the stroke changed me. Especially that it changed the one attribute of myself that I'm not ready to relinquish yet.
Anyone who knows me (and I am reiterating this mainly to myself to remind me of who I was before the stroke and who I continue to be and want to be), we know that I don't take the 'easy path'... I take the path less traveled, I take the more difficult but honorable path.... I will continue to fight that this stroke will not destroy us and that we won't lose the house and that Wayne will continue to get better and that Morgan will not be tainted by the effects of the stroke in our lives...
I will continue to resist because that other path just isn't okay with me. Not yet anyway. But maybe in time, that's what happens. The resisting wears you down and you end up accepting....

I guess we'll find out in the weeks and months... and dare I say years... to come. Yeah, it's probably gonna take years.

Thanks for reading. Love, Julie

Who am I? (other than a "caregiver")

Here is a “Welcome to the Caregivers” speech that I gave today at an Aphasia Day Retreat for Stroke Survivors and their Caregivers:

Good Morning—

My name is Julie Bacon, I am 34 years old, and I am married to Wayne Bacon who had a stroke 2 years ago. I usually describe myself and my role as a caregiver as defined by the events that surrounded Wayne’s stroke. Right now, I am going to try to talk about me and who I am and how I was affected by the stroke and not tell ‘his story’ (even though I feel like the description of his stroke and length of stay in the hospital, surgeries that were done to save his life, and condition in which he came home helps to define what type of caregiver I have to be and what is on my plate)… but, here is my story:

On April 1, 2008, I was a 31 year old new-mom. I had just given birth to our first child, Morgan, a girl 3 weeks prior. It was a quick and easy (so to speak) labor and delivery, and I felt empowered as a woman and a person to know what I could go through and survive. I felt more connected and interdependent with Wayne than ever before—his support during labor was amazing and I was so glad he was there by my side the whole way. Wayne and I had just bought our first home 10 months prior and were excited to have Morgan grow up a bit so we could start our renovations and landscaping plans that we envisioned when we bought the house. My family lives in Minnesota, and his in New Zealand.

My mom flew into Seattle on April 1^st to meet her new, 3-week old granddaughter. She and I had just arrived to our Shoreline home when Wayne pulled up—he just got off of work, was going to take a shower and then cook us some dinner. He never came out of the bathroom. Once the ambulance came and left, I tried to rush and get everything together to follow the ambulance but as a new mom, I didn’t know what to pack, I had only been out of the house once before with Morgan and the diaper bag and the stroller and jingling toys… I had to stop for every stoplight on Aurora and all I could think was, “Hold on Wayne… just don’t die before I get there.”

Everyone tried to convince me to sleep that night in the ICU waiting room, but I couldn’t… my best friend was lying in the ICU seemingly completely obliterated… he looked confused, not present, an empty slate—his personality seemed gone, there was no voice, no recognition, no eye contact, just wandering eyes, odd head movements, and an extremely fidgeting left side. It was so scary to me—I realized, even though I’m 31, I would never be willing to lose my best friend, spouse, partner. I envisioned myself as an 85 year old woman with Wayne in the ICU… I would be sad to say “good-bye” to him at some point. And unfortunately, I now know what that’s going to feel like.

That trauma has affected me—I don’t think I will ever be the same as I was before April 1^st 2008. I am determined to make myself better in some way, but I don’t yet know who that will be. This may sound strange, but I feel like an addict who doesn’t know themselves without their drug of choice—I don’t abuse any drugs, I’m not an addict, but I am just as lost as an addict going into rehab for the first time. I feel like I need to go to a month of inpatient counseling to just learn who I am, what I like, what type of person I want to be, and then be put back into this situation and my life.

I want to describe the pre-stroke Julie Bacon… but I feel like I can barely remember her. It is a struggle to remember me, or interactions that defined me before the stroke. The moment that helps me remember who I was before the stroke was an incident where someone was accusing me of being extremely selfish 2 months after Wayne’s stroke—it was someone that I didn’t know very well and I remember saying to them, “I’m sorry you didn’t know me before this, because I think I was a very giving, accepting, loving, patient, unconditional, energetic, full-of-laughter, and fun-loving person. If you had known me, I think you’d be able to be a bit more patient with me right now. Now is my time; now is the time, when all the love and patience and answering of 3 AM calls from crying girlfriends pays off for me… I get to have my friends hold me up for once.”

I was athletic and loved playing beach volleyball, I was vivacious, I was social yet enjoyed being alone and doing Sudoku with music playing in the background, I knew I always wanted to be a mom, I never thought I would get married but when I met Wayne I knew I couldn’t live without him being my best friend everyday forever, I took my dog to the dog park every Saturday morning at 7 AM so he could swim for an hour with not many dogs around because that’s how he preferred it, I walked around Green Lake with girlfriends, I went dancing once a month and had fun at happy hours with Wayne, I played pool and darts… I was thoughtful and methodical in my planning and decision making (that is, if I could make a decision at all… Caesar salad, soup… Caesar salad, soup? Ahhh!!!! I can’t decide!).

I also worked 50 to 60 hours a week… at the least, I always put my needs last, I worried way too much about what others thought of me or my actions and making sure that everyone else was always "okay" and felt safe, I focused too much on self-evolution and introspection and not enough on just being and accepting myself as “okay" right now at this very moment, I worried about my loved ones dying and leaving me alone, …

All of this had to go by the wayside—some of those attributes I was ready to be done with and the stroke was a definite point in time where some of those characteristics had to die. And I am grateful for that—I am glad that my work-life balance is more even, I have found peace in learning to ‘just be’ rather than push forward all the time, and I’ve realized “I’m a pretty okay person”. And I’ve somewhat lost the fear of one of my loved ones dying… I know what it feels like now, or almost. I know I will be able to deal with it and survive.

The other parts of me will come back—but only with time, and self-nurturing. One counselor told me: in order to survive and "make it" as a caregiver, I would have to delegate whatever I could to other people and return to just being a mom, a wife, and a friend again.

Why today is so important is so that we can come together, and know that we are understood and not alone in what we are going through, learn some tools and educate ourselves. The caregiver group that meets every Saturday is essential to my ‘recovery’; I have sometimes compared it to AA—I need to have somewhere to go, regularly, to find support and help.

Cheers Wayne! (and back at me too)

Today is officially the end of the clinical trial for Wayne (with the exception of the 2-month post-treatment testing in late-July).
It felt sad, as I knew it would, but it also feels like we've accomplished a big goal. Woo-hoo!
We were at the UW Aphasia Lab (http://depts.washington.edu/sphsc/labsites/kendall/about.htm) everyday for 8 weeks. I ended-up feeling like part of the staff at the UW Speech & Hearing Clinic--a permanent fixture in the waiting room. (Although, this ended-up being very conducive for my efforts to getting the logistics squared-away for a Caregiver Support Group specific to Strokes and Head-Injuries to be formed, so no time wasted.)
Wayne and I got home and had one beer each on our front step and just beamed with gratitude for the busting through of the "roadblock" of his speech--apraxia, the elation regarding the words that he has regained, the comfort in the hope we gained and the assurance of knowing that with enough time and effort he could speak again to some extent, and the exhaustion of having to be somewhere everyday (very taxing for Wayne at this point).

Cheers Wayne, (and since he can't type, I'll say it for him...) Cheers Julie! That was tough, amazing, and so incredibly worth it! Well done!

Bittersweet: Wayne's Clinical Trial is coming to an end

Although I would gladly fight for the clinical trial Wayne is involved in to be extended since he's making such amazing progress, the fact that this week is our last week of daily treatment (2 hours/day) is exciting to me.
[Note: I actually already have fought for it to be extended twice--it was originally only supposed to be 4 weeks of daily therapy and we got it extended twice to be 6 weeks in duration!]

Wayne is so exhausted everyday after the two hours of intensive therapy that he doesn't really do anything else during the week. He comes home from therapy and naps anywhere from 2 to 5 hours; the therapy is very taxing on him, and like a newborn, he must sleep to "fix" the new information into his brain.

He usually is very helpful around the house: he sweeps and vacuums when the floor is "too far gone"; he completely maintains the kithcen (by emptying and loading the dishwasher as needed, washes dishes, wipes down the counters, etc.); he helps put away the groceries; he does his own laundry, folds it, and puts it away.
However, since he's been in therapy, he has been too tired to do anything around the house; I have been totally okay with picking-up-the-slack since he is thoroughly enjoying therapy, gaining confidence in himself again, and progressing verbally due to it... but let's be honest... it'll be nice to have some help around the house again.

We are so grateful that he's progressed as much physically and cognitively since the stroke as he has--the fact that he can do all these duties around the house is incredible!! But, there's a lot more to life than the dishwasher, clean counters, and his individual laundry... so for him to have "mental space" again next week to do these tasks again for our family will be very beneficial to my well-being and the relationships within our household.

Speech!

Wayne has been involved in a Clinical Trial for speech at the UW for 5 weeks and it SEEMS TO BE WORKING! He said Morgan's name for the first time last Thursday! He said his full name, "Wayne Bacon" on Friday.

So thankful for the therapists and this clinical trial!!

Hello! Welcome! A new place for our blog

I am going to attempt to continue our blog on this website regarding our journey, Wayne's recovery, and life after a stroke in a young family.

Look forward to continued visitors and support by you all.

Sincerely,
Julie