Goodbye For Now
I have been invited to take part in a study about aphasia (don't worry, I hadn't heard of it before the stroke, either). It's been studied once or twice before, and it's been proven it's effective. Now it moves on to more people (there were 28, verses 80 people now). The study lasts for 8 weeks, 5 days a week, 2 hours a day. I'm tired just thinking about it.
But I said "yes," even though:
a) I might not get into the "right" group. There are two groups, one has the traditional method of speech therapy, one has the new phonomotor (fancy!) (read more below). Guess which one I'm hoping for?
b) The rules say I have to stop seeing Jennifer...what?? I know, with the schedule I have to keep, I doubt I will have to time see her anyway...but still.
I met her on July 5th, after being released from Evergreen. Truthfully, I didn't like her (I often don't like people when I first meet them. Some of my favorite people started out this way). She did these tests all about naming things, with the help of illustrations -- hammer, boat, tree. I didn't do well. She asked me if I was willing to work hard, and I said was. I would sign up for as many sessions as she thought I needed to get better -- 7 days a week, if possible. I would practice night and day, she would see. And I did.
(A year later, after that first session, she shared with me she thought I would never talk again, except with a computer.)
Her heart, compassion, patience and her humor, were revealed in the second session, and beyond.
Here are just a few of them:
- She talked me off so many ledges when I was scared (or worried, or angry, or anxious...all different words that mean "fear").
- She practiced with me for an interview to become a Spiritual Director.
- She edited many poems and essays with me (by the way...no matter what she tells you, she's a wonderful writer!).
- And then there was the skeleton with the baseball cap next to the bike. She thought both of them (the bike and the skeleton) would help to relax me, from straining with my voice and clenching my hands.
- We made fun of my mom (for instance) about her new boyfriend. Jennifer wanted to know if I called him "dad." (Hey, do you think that's why my mom stopped coming?)
- Then there was the time I was investigating stroke support groups. I couldn't find one that was the perfect fit -- too large, or the drive was too long. So, I showed up one day declaring, "I want to start a group!" I said. She asked, "at Overlake?" I didn't think that far ahead, truthfully. I answered, "Yes!" She ran with it (with my help and Laurie's, but she does the majority of the work).
Several months after I started with Jennifer, I could use the internet again. Mostly to look up new treatments for aphasia and pass them along to Jennifer. I wonder if there's a way to count every message I sent her like this: "Subject: Have you heard of this??" Nothing was new to her! Patiently, she took those messages and explained what they were for, Parkinson's, MS, stroke (but not the kind of stroke I had).
In short, nothing would be helpful…except time.
Healing from aphasia is a life-long process. I know that now. And it doesn't mean that I am not open to miracles happening. I am. Everyday miracles are how I live my life. And I accept the truth...I am perfect just the way I am. Each day, or several times, or whatever it takes...I remind myself.
She was there, never doubting, always truthful…(the truth has many shades, and she knew how much to say to keep me motivated).
How do you thank a person that gave me speech...and so much more? The answer: Keep going.
I want to thank you from the bottom of my heart, Jennifer. Thank you.
VA RR&D Merit Review Grant (2013-2017): A prospective, controlled study of rehabilitation of anomia in aphasia (PI: Kendall)
The traditional treatment approach to the rehabilitation of anomia in aphasia is to explicitly train individuals with aphasia in whole word naming (see Nickels, 2002, for extensive review) (often called lexica/semantic therapy). Controlled studies have shown that this approach may improve naming performance but generalization is typically very limited; that is, the knowledge gained by the patient tends to be limited to the words actually trained, and there is at best modest improvement in naming performance with untrained words. This generalization may be limited mainly to words that are semantically related to those in the training corpus (Kiran and Thompson, 2003; McNeil, 1997). The mechanisms underlying this generalization are not well understood. Because generalization can be limited with naming therapies, there currently exists no viable means of training patients on the full corpus of words (perhaps several thousand) they are likely to need in daily life, except in the most determined and capable of subjects (Basso, 2003). Two approaches might be taken to solving this problem: (1) develop cost effective means for providing training on several thousand words; and (2) develop alternative training methods. We have developed an alternative method – called phonomotor therapy – and, in this project, we propose to continue development through a phase II clinical trial. In the context of a 2-armed randomized control trial with experimental (phonomotor) treatment versus a type of treatment that is typically delivered (lexical/semantic-based); we propose to study 80 individuals who have suffered a left hemisphere stroke and exhibit aphasia and anomia.