Neurosurgeon's Progress Report

GRAY, ASHLYN

4-5-83:

“This lady returns today for her first checkup following a craniectomy and removal of a meningioma in the left frontal parietal area. Since going home, she has shown a great deal of improvement and walks in to the office unassisted. She is speaking better and using the right hand better, but does so when she is rested and not excited than she does otherwise, according to her husband. This is expected. She is getting physical therapy and speech therapy at this time. She has no headache, nausea or vomiting and except for the frustrations with speech and decreased strength in the arm, has been doing well.

EXAMINATION: The scalp is well healed. The craniectomy site is obvious and is soft and pulsating. The patient is alert, oriented, with a significant aphasia at this time. She can communicate to some degree. Speech is in short phrases and words, however, She appears to receive without difficulty.

SENSORY: Sensory testing over the trunk and extremities reveals some deceased sensory perception over the right side.

MOTOR: Motor testing reveals a right hemiparesis, with the right arm much more involved than the leg. She can ambulate fairly well without assistance but still has marked decreased use of the arm. This is improving according to her husband. She can elevate the arm and hand above her head and has fairly good flexion and extension. She has a very poor handgrip. Reflexes are increased on the right side when compared to the left.

COMMENT: Mrs. Gray is doing well. She still has some obvious neurologic deficit, but has improved a lot since her discharge from the hospital. I think she should continue working with her physical therapy and speech therapy, and is encouraged to do as much as she can at home. She has not had any seizure activity, but is to continue her anti-convulsant medication.”

B. Daniel Passenger, M.D.

BDP/Cm

This was my first follow-up appointment with Dr. Paysinger and I had been able to walk into his office unassisted. I had been taking long walks and getting my strength back. I could now elevate my right arm above my head and use my fingers well enough to pick up cough drops by the paper wrappings. I was beginning to comprehend if spoken to very slowly and able to use short phrases. I was making very good progress and I was proud of myself. But I was totally unprepared for what was to happen next.

MY DEAR FAMILY- Everyone Helped

Jack was having to do almost everything for me.... including helping me get dressed. He would have to tie my bows, help me get my hose on, hook my pearls, change my earrings, get my bra hooked........ In fact, I found a little note I had written at this time describing my situation: Every day Jack would have to hook my bra for me. I hated to have to call on him every time I wanted to get dressed......when often he would be busy in his office. I didn't like having to be dependent! I finally progressed enough to be able to pick up one end of my bra with my good hand, switch it over to my bad hand for holding purposes, catch the other end with my good hand and take it around my back and on to my stomach. There I would be able to fasten the hooks with my good hand, then turn the bra around and stick my arms through the straps. I was so happy. I had crossed a milestone! And had come one step closer to independence, even though I had to lean on Jack for just about everything.

Jack was so good about doing things for me. He bought me shoes with velcro closures, so no strings had to be tied. He called the doctors for me and explained things to them since I couldn't. He was, and still is, so much help in preparing a meal, especially the Sunday morning eggs and cutting up vegetables for salads.

Because I love the yard so much, it made me so happy when Jack and John decided to outline the flower beds in the back yard with long boards that bend easily to separate the beds from the lawn.

Julie and Sally alternated weekends to come be with me and be on call for anything I needed done..... to cut my fingernails or toenails, to shave my legs or under my arms. They took their responsibility very seriously and came religiously even when Julie had to make the trip with her baby, Lane and during her pregnancy with baby, Nathan. Among other sewing jobs she did for me, Julie sewed velcro on a number of my jackets so I could close them by just touching the two sides together. This was such a big help since I could neither zip nor button.

And as you know Eleanor, very conscientiously, took the responsibility on her shoulders, of lining up Speech Therapy and other health care programs after making suggestions to Jack as to what I would need in the way of help when released from the hospital.

A Typical Day

Breakfast

Slowly work at getting dressed (so slow with just one hand)

Appointment with either speech, physical or occupational therapy

Lunch

Nap

Walk; do exercises; do homework

Supper

Do cross-stitch with TV going

(And the same the next day, and the next day, and the next.)

It is impossible for a normal, busy person to conceive of the often boring, lonesome life that is felt by a handicapped person.

My life consisted of hardly anything but therapy and that was about all I had to look forward to. I loved the appointments with Teresa at the hospital, or with Henri or Mitzi who would come to the house. But when, for some reason, one of them would have to break the appointment I would be so-o disappointed, so blue and depressed. It meant I would have nothing to do the whole day and that I would be so bored. It meant, because I knew from past experienced that the hours.... would.... drag.... by.... ever....
so.... s1ow1y.......................and I.......would have......
nothing to do.

MY SPEECH NOW

Apraxia of speech - a motor/speech disorder which makes voluntary/spontaneous speech difficult in that to speak correctly requires motor planning.

Example: I have to depend on being able to hear myself when I speak (auditory feedback) for my motor planning. I have to be able to hear my own voice as I speak which provides me with the auditory feedback as I hear myself speaking. It is necessary to hear myself speaking in order to be able to think (motorically plan out) what I need to say next. The difference between you and me is that now I have to think about how to pronounce the words. Then I can perform the motor act of consciously saying it.

Therefore, I can't think how to speak when another person is talking or when there is a lot of background noise such as loud TV, or a crowded restaurant, or noisy party. They all continue to be a distraction to my thinking ability. In fact, I couldn't get my telephone number to come to mind when signing our church register, just because our preacher was preaching his sermon.

At times I might say ''No'' when I mean to say “Yes'' or vice-versa.

But when I hear myself make the mistake (by auditory feedback) I can catch myself and quickly change my response. I am dependent now on having to be able to hear myself as I speak without noise interference.

As I became more confident in my speaking I began enjoying communicating, one-to-one, with one other person, but I was at such a disadvantage trying to talk with more than one that I let myself be shut out of the conversation and would just remain quiet. That's no fun though, not being able to share myself or my thoughts to add to the conversation.

It's still an effort to try to explain things to others, even though I know what I want to say. I seem to not be able to find the words I need to make myself understood. In trying to communicate it always seems to help me if I can make eye contact with whomever I'm speaking.

Because of my speech, my paralysis, and my deficit, I was secretly pleased that most people knew of my second brain tumor.

Instead of having to be embarrassed if I failed, I felt that because of their knowing, people would understand.

Speech Therapy: Reading & Counting

Henri started me with the simplest of exercises, Matching Beginning Sounds......more like child's play, but it wasn't that easy for me, even though I could get them all correct.

Then after that came recognizing words and pronouncing them, then using words in sentences and learning to spell them. I had to relearn the days of the week and the months of the year. At the same time I was learning to tell time again, to recognize numbers and be able to say them, to count, and to add, subtract, multiply and divide. It would be a poor speech time if I were tired or frustrated. I needed a nap every day.

It became my practice on car trips to read the numbers on a license plate as the car passed us, and to read signs on the sides of the highway while Jack drove along.

“Slippery when wet”,

“Ice on bridge”,

“Speed Limit 65”,

“Exit 119” (some signs had both words and numbers).

When I would take my recuperative walks on the golf course, I would practice counting to myself in rhythm with my steps: 26, 27 28, 29........ but I would have to pause while I tried to think what came next. Finally, I would think of 30.......31, 32, 33, 34, 35, 36, 37, 38, 39....... and again my thinking would be so slow. I would walk many steps while trying to think of 40. And I had to go through the same with 50, 60, 70, 80, 90.

I wanted so badly to be able to read to my grandchildren. They were only children; they wouldn't care about my speaking being not perfect. So they chose one of their favorite little books, My Little Red Bicycle and we cuddled up on the sofa together. I found I couldn't read with any expression in my voice because I was having such a hard time just trying to read the word itself and my words were so dragged out I was not able to hold their interest. They soon got restless and one by one they climbed down. I ended up on the sofa by myself.

SPEECH THERAPY for Aphasia

SPEECH THERAPY

It's something I took for granted.
I used it every day.
If I had a thought or an idea
I could open my mouth and say, “….
Now speaking doesn't come easy,
And I can understand why
I get so frustrated and embarrassed,
‘Cause on my speech I can't rely.


At Eleanor's insistence and my reluctance, Eleanor slowly walked me out from my bedroom to the table in our family room where she introduced me to my speech therapist, Henri C. We all sat down. Immediately my lower lip started quivering in my apprehension of what would be expected of me. I couldn't talk! And I didn't feel good....... and I didn't want to be there. Henri chatted a little to help me feel more comfortable with her while my eyes filled up with tears. Before long I was weeping and the session had to end. I was embarrassed. And the whole experience was very frustrating to me.

But the frustration and weeping didn’t last long. At the next session Henri and I became fast friends. She recognized that I had become aphasic and apraxic of speech in the removal of the tumor that was pressing against the speech area of my brain.

Aphasia of speech - the impairment or loss of the ability to communicate through speech or written language due to dysfunction of brain centers.
This caused:

(1) Loss of memory for words.
Example: when I tried to think how to tell the nurse I wanted the bedpan.

(2) the inability to name objects and people.
Example: when I couldn't even think of the names of my two daughters when they visited me in ICU. I finally got where I could remember the names of Julie? Sally? John, Jack but it was months before I could think of Eleanor's name.

(3)The inability to understand the spoken word.
Example: when Harvey A and Sally M came in ICU to visit me.

(4)The inability to understand the written word.
Example: when Eleanor wanted me to read the Get-Well cards and I couldn't read.

Speech Therapy Started

Penny N., a friend of Eleanor's who had majored in Speech Correction at Columbia College, was living in Columbia at this time. Eleanor contacted her and told her my condition so Penny would come to the hospital when my family couldn't be there and do little personal things for me. And because I was still so weak, she would open the little packets and wait while I ate the meal so she could help me brush my teeth afterwards. She was a dear daughter to me when my own daughters couldn't be there.

Penny and Eleanor wanted to begin speech therapy right away to get me started thinking and speaking again. Eleanor, when she could come up to Columbia, would sometimes point to a card with some picture on it ...like a cat or dog or a pencil or chair...and ask me to try to say it. I would know what the picture was, but I just could not think how to say the word. And Penny, when she came, would ask me to describe to her our new house, knowing this subject would be dear to me. What does the living room look like? How about the dining room? I could see, in my mind's eye, both rooms so vividly and wanted, so badly, to be able to describe how pretty each was. But I couldn't. So she would try to help by asking questions to which I could just nod ''Yes” or ''No”. If I might be able to think of one word every now and then she would exclaim, excitedly, that she was understanding what I was trying to say. That was the encouragement I needed to try again; although, my brain would tire so quickly and so easily and then I would feel worn out and even frustrated by having used my brain to concentrate for too long a time.

I Needed Speech Therapy, Physical Therapy, and Help

As I lay in my bed in the private room I was feeling especially lonesome and alone, even though Eleanor and Jack were sitting at the foot of my bed talking with each other. I didn't know what they were talking about, but I did know I wanted so badly to be able to communicate with them, to feel included in what they were saying. I could hardly hear them because of the bulky dressing partially covering my ears and making me feel separated from the whole rest of the world. In spite of this, I kept hearing, in whispered tones, little snatches of conversation, “maid .........secretary............therapy.......''. I didn't associate any of what I was hearing with me, however.

But Eleanor, at this time, was realizing that things were needing to be done! But nobody was taking any initiative! Jack seemed to not know what to do or where to turn, and it seemed to have been just taken for granted that Eleanor, being a Speech Therapist and the tumor being on the speech area of my brain, would know just what to do. In her job she had helped others, but this was different. This was more extensive and this was her mother! She didn't know quite where to begin, and she was scared!

What could be done for a person in Mama's condition? She knew Mama would need to be taken care of when released from the hospita1............., certainly a maid would be needed, and even maybe a secretary or a part-time secretary to help Daddy in his office so he could be freer to be with Mama when she needed him......and she would have to immediately try to figure out, and then put into a plan, what therapy would be best..............and do some investigating into health care programs that would be beneficial ....and lay out plans for a program of rehabilitation.

She felt the whole responsibility on her shoulders. And now that our mother-daughter roles were reversed she would be faced with tough love. She was frightened...... frightened by the awesome task of having to find ways to rehabilitate her own mother.