New Year's Eve Report

Lisbeth, postical sleep. Milkweed and "The Hurt Feeling Bear" keeping watch. Three grand mals this week. A neurologist once compared the energy expended in one grand mal seizure to playing an entire football game.

Lisbeth craves "chadder cheese" after a seizure.

Milkweed likes "chadder cheese," too...

Those eyes. All knowing Milkweed. Bless her little kitty heart.

Lisbeth is chronologically thirty years old, and emotionally six, the age she was when she suffered the brain injury.

Lisbeth has had a rough week. We had to increase the Benadryl because she was having more insomnia, and even with the increase she hasn't been sleeping again. The Benadryl is drying out her eyes and might be causing more seizure activity to boot. We will be talking with her psychiatrist next week about an alternative sleep aid. And the psych nurse has recommended Cogentin for the EPS, to replace the Benadryl. Always this juggling act of trial and error.

I am grateful to all the good folks and critters who help to care for Lisbeth. She's such a trooper!

Here's to a Happy & Healthy 2012, All!

Christmas Gifts

Lisbeth and her Christmas stocking...

...getting some help from our cat, Sal.

Hummingbird socks!

Cairn takes a nibble of Lisbeth's new little unicorn...

Lisbeth and "Big Sister Kaitlyn."

Lisbeth's spot at the table, waiting for her till later...

After a nap. Lisbeth with her sister-in-law, Tracey.

Day after Christmas breakfast.

Silly Lis trying on Momma's glasses...

Lisbeth spent the whole day with us on Christmas by herself (her one-on-one helper called in sick), and slept overnight. She was clear and able to enjoy opening her gifts and being with her family. This is my best Christmas gift, for there are many holidays and birthdays in which Lisbeth cannot partake or even remember because she is in the throws of a seizure cluster. I am grateful that her seizures held off until afterwards (she is down with a seizure cluster now as I type this post). Lis had some anxiety Christmas afternoon; we laid her down on the couch in a quiet room and did massage and tried to redirect her thoughts without success and finally had to administer her PRN Ativan. Being with groups of people, even those she loves, can trigger great anxiety for Lisbeth. So she napped during our dinner and was able to thoroughly enjoy a quiet turkey supper later in the evening. And then she slept through the night, which is a small miracle in itself!!

Happy Holidays, All!

Just Hanging...

photo of Mom and Milkweed by Lisbeth

Lisbeth and I made her Gramma Simmons' party mix together at her house on Friday afternoon, then hung out downstairs with Milkweed. Lisbeth has been sleeping better since starting the Benadryl, and her mood and appetite have improved, but on Friday she was having some anxiety and talking about "feeling dead" again. We work to gently redirect her thoughts if possible, and use massage to relax her. If she cannot be redirected and the anxiety escalates, we give her PRN Ativan. Lisbeth had a seizure later that night - this increased anxiety is often the precursor to seizure activity. Milkweed is the best antidote to anxiety...

Gramma Simmons' Party Mix

1 small box Cheerios

1 box Wheat Chex

1 box Rice Chex

1 T garlic powder

1 T onion powder

1 T celery salt

1 t salt

3 T Worcester Sauce

1 lb butter

3 lbs mixed nuts

Mix cereal and nuts in large roasting pan (Lis didn't have one so we improvised, but you really want to use the one large roasting pan!). Melt butter in saucepan and add seasonings and salt to that. Pour over cereal mixture in roasting pan and stir. Bake at 250 degrees for 3 hours, stirring every half hour. Drain on brown paper, cool, then store in airtight containers. Give as gifts, and enjoy some yourself!

p.s. I can't control the spacing on Blogger lately - don't know what's up with that! Oh, well - here's to imperfection and radical acceptance! :^)

An Update

Lisbeth turned thirty on October 27th.

Lisbeth showing off her new bikini in June.

After a swim in July.

A trip to the ER in mid-October. A gashed forehead due to a fall during a seizure.

A drowsy ride back home.

Milkweed looking out the window for Lisbeth.

I haven't posted for several months for many reasons, one being that I needed a break from all things computer. But I think the main reason for not posting here about Lisbeth is that I've been so discouraged and overwhelmed. After my mother's death I went through a period of deep grieving. I had to work on accepting that she had Alzheimer's and how that changed her. It triggered my old anger and sadness about how Lisbeth's illness changed her, and I have had to work on accepting Lisbeth's situation, again. And I'm learning that I have to keep accepting it, over, and over, and over. I am currently taking a DBT class for my own anxiety issues (I have Panic Disorder) and one of the most important things that I have learned is that acceptance does not mean approval. I'll type that again. Acceptance does not mean approval. We can accept with all our pain attached. Acceptance does not mean we do not have pain. It means we can feel peace even with the pain. It means we do not have to suffer.

Deep sigh.

Lisbeth has been having multiple on-going and worsening problems which have caused me to feel powerless and sometimes hopeless. These problems include extreme insomnia, rapid weight loss (which we were happy about at first, then alarmed) loss of appetite, refusal to bathe, incontinence, decrease in enjoyable activities, depression, anxiety, drooling, increased tremor, body pain, suicidal ideation. We decreased her Depakote - her neurologist thought perhaps that was the culprit. No change.

Fast forward to this week. On Monday her psychiatrist prescribed Benadryl for her insomnia. Lisbeth called me the next morning to tell me, "Mom! I'm back alive! Not dead anymore! All the bones healed up!" We thought, Wow! Perhaps just getting a full night's sleep is helping more than we know. But on Wednesday we had a psychiatric nurse from DHHS come in and do an evaluation. She has uncovered a big problem: Lisbeth has EPS. Extra Pyramidal Symptoms. This is a side effect of Risperdol, the antipsychotic Lisbeth takes for behaviorial disturbances, particularly rage attacks. These symptoms include: decreased appetite, insomnia, agitation, change in hygiene care, restlessness, decreased attention span, increased confusion/dosorientation, tremors in hands, feet lips and tongue, stiffness in arms, back and neck, drooling, rolling of eyes upward, irritabilty, isolates self, and the list goes on. Sometimes these symptoms remain even after stopping the drug.

It was a relief to learn this and at the same time I felt like I was going to be sick. Lisbeth has been taking Risperdol since 2002. It has stopped her extreme rage attacks, but at what cost?? It turns out that Benadryl works to alleviate the EPS - this is why Lisbeth responded so positively to her first dose. It wasn't just that she'd gotten a good night's sleep - the Benadryl masked the EPS.

So what do we do now? We're continuing with the Benadryl for the time being, and we're waiting to hear back from her psychiatrist about how to get Lisbeth off of the Risperdol. It will have to be done very very slowly. Lisbeth started seeing a nurse practitioner at Women to Women last month and she has alot of ideas for Lis including supplements, energy work, and counseling around her sexuality. The psych nurse gave us a whole list of activities that will help Lisbeth with the EPS - alot of OT exercises, and we have scheduled Lisbeth to start a regime of regular massage with her sister-in-law, Oceanna. So, there is hope and room for healing. I am so very grateful that the psych nurse came in with her expertise - she has solved a mystery that slipped by all Lisbeth's doctors.

She is our Christmas Angel.

Mothers and Daughters

My mother with me and my brother Kenny, circa 1954.

Me with Lisbeth, circa 1982.

I haven't posted here in awhile. My mother died on January 24th. She was 89 and had Alzheimer's, and was ready to go. Relief and grief.

But, Lisbeth is doing better! Her mood as improved, her seizure activity is low, and her appetite is coming back. She sees her expressive arts therapist twice a week now - we feel that this is helping a great deal. She is still struggling with insomnia, though. We are considering taking her off of another one of her remaining (three) anti-epileptics. Perhaps her seizure activity is dwindling as she gets older...I've heard tell that this can happen!

Butterfly

Lisbeth had dinner with us last night at her favorite restaurant, China Rose. Lis has gone through so many changes lately, the most visible being pronounced weight loss. Medications had caused weight gain and bloating the past few years, not a good side effect. When Lisbeth was very young, she was emaciated. So we'd lost track of the real Lis as far as size. We think that now she is where she is supposed to be, around a size 6. Lisbeth had a loss of appetite while on Keppra, so that, combined with taking her off Vimpat last spring (one of the drugs that caused weight gain) resulted in dramatic weight loss. Now we want to be certain that she doesn't lose too much weight! She is eating better since off the Keppra, so we have fingers crossed that she's hit a plateau.

Lisbeth's psychological state is improving as well. Her helpers report that she's like a new person off Keppra - more positive, relaxed, and energetic, even though she's having seizures again. She told one of her helpers that the old voice in her head that was saying "getting dead" is going away. She said, "It's going in the trash. Now there is the new sweet voice." (Lisbeth continues to blow us away with her insights...)

Things can still change on a dime - last night Lisbeth was fine for the first half of dinner then suddenly reared up out of her chair panic stricken - saying she needed to go home with us right that minute. We tried to gently re-direct her, but she remained agitated, and started to feel like she was going to have a seizure. We used her magnet, and finally had to administer her PRN lorazepam. We went back to her house, and it took a couple of hours to calm her down and settle her in for the night. I called her house this morning, and her helper reported that she is clear again and in good spirits. The up and down and back and forth of it. This is how it is. It will never be perfect, but all things considered, for now, it's a whole lot better.

The Dance

Lisbeth and her Dad dance a waltz in her big brother's living room...

Lisbeth with her four siblings (and one little sneaky nephew :^) She enjoyed a good night just after we decided to completely stop the Keppra last week. Even on the lower dose, Lisbeth was experiencing perseverative thoughts about death and felt certain she was dying. She is now in the midst of a rugged seizure cluster. We are not sure how we will proceed from here - there are no new drugs out there that can help at this point. We are praying that Lisbeth will emerge from this recent flurry of seizures and enjoy some good days, and are willing to accept a few seizures a month in exchange for a better quality of life. The seizures tend to clear the air like a good storm. Did you know that electric shock therapy was designed after seizure activity? Lisbeth's psychiatrist told us this when suggesting that Lis is possibly better off having a few seizures, rather than none at all.

Interesting...