Lisbeth & Milkweed

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!

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.

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 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.