Lisbeth & Milkweed

Plus and Take Away

Lisbeth and our cat Jasper (who takes over as guardian angel cat when Lis visits us...)

Plus and take away, a favorite old Lis-ism, perfectly describes what's been going on with Lisbeth's meds of late. Lis has been experiencing tough symptoms since starting on Keppra this summer. Keppra does a fantastic job inhibiting big seizure activity, but the neurological symptoms that slip through the dam are rage, insomnia, loss of appetite, dark perseverative thoughts such as, I am getting dead, body all broken, need to go to church for the dead party (funeral) and light the candles), hallucinations, and pain. We reduced the Keppra to the lowest dose, thinking that this would alleviate some of these symptoms, but no, even on 500 mg a day, this is what we're seeing. Last week we started Lisbeth on Lexapro - she has been off the Cymbalta since July, and hasn't had an anti-depressant on board since then. We are hoping that the Lexapro can buffer some of these disturbances, because if we have to take Lisbeth off Keppra, we have no other anti-epileptic to try. We've reached the end of the med road, we've tried them all, and they all have crap side affects. Choose your poison. Keppra at least does the job of inhibiting seizures - she's only having 3 or 4 grand mals a month now. No other med has worked this well. But the trade off may just be too much. This is SO HARD for Lisbeth, and extremely frustrating for us. Bah, humbug.

Meanwhile, we have lots of wonderful holiday items in the Etsy shop. Lisbeth's big sister Kaitlyn and brother-in-law Cory graciously modeled some of the new mandala tees for us last week, and the weather cooperated with a sweet dusting of snow.

So come on over and browse around - there's still time to pick up some last minute gifts from Brainstorm Studio! Let us know in the comments on checking out that you came by way of this blog, and we'll include a beautiful mandala art card with your purchase! Happy Holidays!

MidSummer Magic and Miracles

You got surprised of it. ~ Lisbeth

The past several weeks have been such a difficult trial for Lisbeth (and us) but we have hit a plateau - a holding pattern - and right now Lis is in a wonderful space. We've kept the Keppra at 1500 mg a day - she has not had a grand mal seizure in over a month, the rages and hallucinations have wound down, she has lost the weight that the former meds had caused, and...(dare I say it?)

Yes.

She is h a p p y.

Lisbeth's expressive arts therapist, Stephanie Cimmet, is currently doing alot of dance and movement with Lis, and Lis says this makes the whole body feel better.

Yes.

Yes, indeed.

Team Work

Holly Spence, Lisbeth's house manager, checks Lisbeth's schedule, while Heather D'Alessio, one of Lisbeth's helpers, looks at the calendar.

Heather D'Alessio, and Duane Hinds, Lisbeth's case manager from Maine Department of Health and Human Services.

Christina Hinds, Lisbeth's case manager from Independence Association, makes notes about Lisbeth's goal list. Milkweed oversees the meeting...

Lisbeth and her Dad. Lisbeth looks forward to her quarterly meetings, and gives her input.

Quarterly meeting is over. Now it is time to go to see The Meeting Doctor (Lis-ism for therapist).

This morning we had Lisbeth's quarterly meeting. Representatives from Independence Association and Maine Department of Health and Human Services attend these meetings along with Lisbeth, Garry and I. We check in about how things are going for Lis at her house, we share our ideas and concerns, and set goals. We are currently working on creating more of a routine for Lisbeth, which is always a challenge with the ups and downs caused by her uncontrolled seizures. But we are looking at things that she already loves to do and turning them into planned weekly activities. Lis loves to bake, so she will be baking items one day a week and delivering them to the IA office for the help there to enjoy. There are weekly potlucks for IA residents, and Lis will be making a salad one day a week for these events. We are re-exploring the possibility of a small part-time job in the community - perhaps one hour a week. Lisbeth actually attended an IA dance last Friday! This is a big step - she has alot of social anxiety. There are monthly dances, and it would be great if she could attend more of them. She loves to buy new clothes, so a motivating factor would be to shop for a new outfit each month to wear to the dances (and she can afford it with her sales in her Etsy shop! :^) Lisbeth is in need of more socialization, yet it is very difficult to get her to do things because of her anxiety. We have to introduce things gradually. And nothing is ever set in cement. Go with the flow and know when to let go. If it works on some days, terrific. If it doesn't, that's OK, too. Tomorrow is always another day.

The Kid Hospital, Part III

Second surgery over. Electrodes removed.

A fighter.

A teacher.

A Little Buddha in Saffron Robe and Bunny Slippers.

The ride back home to Maine.

An immediate trip to the shore.

Clowning with Brother Alec, who played the part of a girl in a skit in the Woolwich Central School talent show that spring. Hence, the wig...

Well, I said I would post more pictures tomorrow, and that was several days ago. Truth be told, it is particularly difficult for me to tell this part of Lisbeth's story. Fifteen percent of people with seizure disorders have intractable seizures - seizures that are not controlled with medication. Lisbeth is in this unfortunate percentage. Surgery is one of the only alternatives for these folks.

The invasive monitoring took place in 1992, and from the onset of her illness in 1988, Lisbeth had been experiencing 12-20 tonic clonic seizures a month, in clusters that would render her non-verbal and perseverative for days. She spent days post seizure clapping and snapping and wandering around the house, spaced out, eating little. She was undernourished and sickly from all the seizures and long postictal periods. Lis had episodes of postictal psychosis, when she would wake in the night after having a seizure, then scream and tear off her clothing. She ran around frantically, bumping into walls, yelling, Mommy! Mom!! Daddy! and looked at us with eyes wild, and blank. Even though we were right in front of her trying to comfort her, there was no recognition. We had to physically restrain her. These were long and torturous nights - the episodes lasted for hours. Thankfully Lisbeth had no recollection of these times, they were like black holes in her memory. But during her handful of clear days, as she got closer to her next seizure cycle, she frequently had episodes of rage behavior - rages so extreme that we would have to call the ambulance, and have her transported to the hospital, where the doctors had difficulty finding the right mix of drugs to sedate her. These rages were neurological events, out of her control, caused by low grade seizure activity in her left temporal lobe, the part of the brain that rules behavior.

We had such high hopes that surgery would be Lisbeth's cure, and that she would be seizure free. Sadly, the invasive monitoring revealed that Lisbeth has more than one seizure focus - we knew about the lesion in her left temporal lobe from her previous EEGs. The EEG from the deep monitoring showed another focus in the back of the right side of her brain. This eliminated Lisbeth as a candidate for surgery, because she had to have one healthy hemisphere to compensate having tissue cut out of the other side of her brain. When the neurology team came into Lisbeth's hospital room with the final printouts and spread them out on the table, I saw it before they said it. I was devastated, and I began to cry. One of the doctors looked at me with surprise, and said a bit judgmentally, "It's not the end of the world, you know." I had to excuse myself. I found a "quiet room" and sobbed. No, it was not the end of the world, but my heart was broken. Years later I saw a documentary on TV about a Russian family that came to the US for their daughter's open heart surgery. The women in this family chanted, cried, moaned, and prayed aloud in the waiting room all through the hours that the girl was in surgery. My God. If only I could have done this.

People tell me that I am strong. And, yes, I now know that I am, but perhaps not in the ways that you think. I held alot in at this time. I had not dealt with my grief about Lisbeth's illness, and I imploded with debilitating panic attacks. I became agoraphobic. Finding out that there was no cure for Lisbeth's condition retraumatized my family. It equaled the onset of her illness in terms of emotional pain and confusion, yet it was a turning point. Issues that were kept at bay with what I now view as a naive hope, came boiling and bursting to the surface. My husband's depression, my anxiety disorder. Our son Andy was fifteen that spring - a tough age under normal circumstances - and this was an extremely challenging time for him. He reeled and rebelled, he began to drink and do drugs. He dropped out of school. He was the bell ringer, pealing out our collective grief and rage. And then Lisbeth began to have pseudoseizures in addition to her clinical seizures. We sought family counseling at this time, and Garry and I sought individual help as well, embarking in earnest on an excruciating but necessary course of grieving, acceptance, and finally, healing. As the title of this blog states, it's not bad thing. Lisbeth and her illness have taught us much...

The Brain Doctor

Lisbeth Miller
A Brain One

The Brain Doctor (Lis-ism), Dr. Heidi Henninger of Maine Neurology in South Portland.

Checking Lisbeth's Vagus Nerve Stimulator. It's good to go for another 4 months.

Lisbeth had her quarterly appointment with Dr. Henninger yesterday. We are going up on her Vimpat - she's only at a half dose right now - and this will hopefully reduce some of the auras and underlying seizure activity that has been the cause of much recent discomfort for Lisbeth. We are also working with Lisbeth's psychiatrist on finding another anti-depressant. Lis was on Zoloft for 15 years and it had become ineffective. We're looking at Cymbalta which is an anti-anxiety/anti-depressant that also works to reduce neurogenic pain, another problem that plagues Lisbeth. One med that can handle two problems would be good, as Lisbeth has to take so many drugs already. It's always a balancing act, and always a guessing game. One neurologist told us years ago that he considers neurology more of an art than a science. I have to agree. Lisbeth is currently in the middle of a seizure cluster - she's had three tonic clonic seizures in the past two days. This really knocks her out. It's been about three weeks since she's had a cluster, though, and for someone who used to have 12 - 20 tonic clonic seizures a month, this is not bad thing...

Milkweed Angel

Little Milkweed Angel is available in Lisbeth's Etsy shop.

Soulmates.
Mmmmmmm, hmmmmmmmm.

Lisbeth slept over this past weekend. I will have to do a separate post about The Sleepover. I'm certain that it will require more than one post, but for now, let's just talk a bit about last Saturday night. Lis and I designed a special ornament together based on one of her drawings of her cat, Little Milkweed. As I've said before, Milkweed is Lisbeth's world. They have a very tight bond (in fact, they look so much alike, I'm convinced that if Lisbeth Miller was a cat, she would look just like Little Milkweed...). Lisbeth needs constant attention, so while Garry was busy fixing our dinner, I suggested that we make a little angel ornament out of snow white felt. She approved. Lis picked out just the right shades of pink and blue for Milkweed's nose and eyes, and supervised the process from a comfy chair.

We made this ornament to add to a shrine for Milkweed that we are building on a wall in Lisbeth's living room. Lis's house manager, Holly Spence, and IA's resident psychologist, JC Edelberg and I have been meeting to brainstorm about ways to help reduce Lisbeth's anxiety. One idea we have is to teach Lisbeth some very simple deep breathing and muscle relaxation, and to help her focus on something soothing while doing these exercises. Lisbeth has difficulty with abstract thinking, and to attempt to teach her specific religious doctrine - the sort of thing that can bring comfort to some individuals - simply does not work for her. Lisbeth knows what she knows. She knows she loves Milkweed, and Milkweed is there for her unconditionally. So thoughts of Milkweed are always pleasing for Lisbeth. We often talk to her about Milkweed when she is perseverating and needs redirection. Milkweed brings her joy.

So we are building this meditation corner for Lisbeth, with All the Things of Milkweed. Our hope is that it can be a place where Lis can sit daily and look at all the little things that bring about feelings of peace and joy. Lisbeth loves to find matching things (one of her neuro-psych evaluations catagorized Lisbeth as having an associative brain, something that I believe all artists possess) and she will love finding flowers and trinkets that are Milkweed's colors and adding them to her little shrine. Lisbeth's therapist, Stepanie Cimmet, has begun teaching Lisbeth the breathing and relaxation exercises, and has agreed to be taped doing this, so that Lisbeth's staff can learn the technique and do the exercises daily with Lisbeth. We hope that Lisbeth will be able to do these exercises in her meditation corner, and that by practicing daily, she will make gains in reducing her profound anxiety.

The Hurt Feelings (Sad of It)

Lisbeth's Tree Frogs Mandala for sale now in her Etsy shop.

Me and Sad Lis.

One of the ways that Lisbeth copes with The Hurt Feelings (Lis-ism for mad and sad)
is by hugging her Hurt Feelings Teddy Bear

(she has had HFTB since she was 9 years :*)

Lisbeth also watches The Hurt Feelings Movie, a video that one of her Ed Techs (a wise and wonderful nurse named Shirley Helms) made for Lisbeth when Lis was at Brunswick High School in 2002. The video is simply footage of Lisbeth telling Shirley why she feels sad. Plugging this into the VCR and watching this little film provides great comfort for Lisbeth and has proved to be a very effective coping tool when she is perseverating.

All Happy

Mom and Dad, didn't cry all day today! Lisbeth gleefully reported to my husband Garry and I when we popped in to see her yesterday to deliver a couple of new packs of colored paper.
(A clear, happy day is a rarity for Lisbeth. Constant neurological interference causes her to be on an emotional see-saw. One of Lisbeth's two seizure foci is located in the front left temporal lobe, the area of the brain which rules behavior. Depending on where Lisbeth is in her seizure cycle, and the amount of "jiggling around" going on in there, she is like a puppet on strings regarding her emotions and behavior).
Lisbeth agreed to demonstrate her paper cutting technique. She starts by placing an overturned plastic plate onto an 8" x 11" piece of paper. (Lis and her helpers have made a nice little paper cutting nook for her to work on her snowflake/mandalas. A little studio corner in her living room. Lis cleaned her pink desk all out to make way for some new supplies, like the pastel and bright colored papers we brought).

This is the plate Lisbeth uses. She has used this 101 Dalmations plate for over 15 years to cut hundreds of snowflake/mandalas. (101 Dalmations Little Puppies Get Stolen, Lis's name for that movie, one of her famous Lis-isms, was one of three favorite movies of hers when she was a young girl: 101 Dalmations, Pee Wee's Big Adventure, and Hook. She watched these films over and over and over. It finally occurred to me one day that all three of these stories have at their core something or someone who is stolen or lost. The puppies are stolen, Pee Wee's bike gets stolen, and in Peter Pan, there are the lost boys. This is poignant considering Lisbeth's loss. She was a healthy, normal little girl up until the traumatic onset of her illness when she was six years old. Like all folks with a TBI, Lisbeth has the experience of a distinct before and after to her life. She remembers being well, and mourns for the life she used to have. This has been a struggle for Lisbeth and the cause of significant depression).

Tracing...

Her favorite cutting shears at the ready...

Cutting the circle. Lisbeth will demonstrate the folding and design cuts in a future post.

All Happy!