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.

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.

Occupational Therapy

I don't remember just when I started occupational therapy with Mitzi W, but I do remember a number of times falling back on my bed pillows, exhausted, from just trying so hard to make the muscles in my fingers move….but try as I may, they wouldn't.

In time, I could raise my arm about shoulder height and was able to use my fingers well enough to pick up cough drops by the little paper wrapping with my index finger and thumb.

I remember the time when I first was able to clap normally.....to

use both hands.....instead of just beating on a flat surface, or beating on my leg in order to make the clapping sound. And then when I could first cup my right hand enough to help rinse my face.....instead of trying to rinse with just one hand.

My experience….

How does it feel to be paralyzed?

Hand & Fingers - Feels like rubber bands around hand & fingers that prevents them from being able to move.feels heavy. Feels dead. Not a part of my alive body. Colder than other hand. Very little feeling when touched. Can't tell whether I have moved it or not; have to look to see.

Arm - Numb & heavy. Feels like rubber bands around. Colder than other arm. When trying to play tennis the arm bounces around and won't stay put so I stick it in the elastic of my pants to hold it.

As far as balance is concerned, it's like having just one arm.

Mouth -Feels funny when touched and can't tell quite where. Feels numb. Feels swollen, bigger than other side but doesn't look that way.

Can't eat a carrot, apple, corn on cab, etc.
Will bite lip while eating.

Leg - So tiring. Feels heavy.

Can't feel what position it's in until you look & see .

PHYSICAL THERAPY

By this time, my leg had gotten well from the Phlebitis and I could at last say “Goodbye'' to those tight, white, support hose and Jack would no longer have to line up nurses to give me the Heparin shots. I was making progress. I could now start physical therapy at our Orangeburg hospital.
Jack would drive me to the hospital and then stay the hour to learn from Teresa G what exercises I was to do at home.

-Push arm out.
-Back to side.
-Elbow to stomach....

Most of the time I couldn't comprehend what was being said but even if I had, I couldn't have remembered the exercises two minutes. I didn't at all mind doing the exercises because I had always been an active person, but it was no fun now since I couldn't count well enough to keep track of how many I had done plus my muscles wouldn't do what I wanted them to.
The paralyzed muscles in my right arm made my arm feel heavy and would hardly work at all. My whole arm felt like many, many strong rubber bands all up and down my arm were restricting all the muscles from moving. I would have to muster up all the strength I had to work against the rubber bands...........against the paralyzed muscles.

My right leg muscles made my leg feel as though I were ''trying to run through wafer's”, as Patricia N so ably expressed it in her book As I Am. There was no physical pain.... but just the pain of knowing that the muscles wouldn't do what I told them to do. They just wouldn't work. That's paralysis.

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.

I Am Still Me, Though My Brain is not Right

Monday morning early
Visit: Jack (my husband), and Eleanor
Eleanor’s notes:
“Dr. Clark, one of four surgeons in with Dr. Paysinger, offered to order Physical Therapy for Mamma's right arm. Would order Speech Evaluation too if wanted, but doubted it would help. Said there had been lots of manipulation in ''that area'' of brain so might have problem with seizures.
Too soon for friends to see Mama. Needs rest.”

_____
Mon. 8:00 A.M.
Visit: Jack and Eleanor
Eleanor’s notes:
“Auditory comprehension greatly improved. When speaking to Mother, she comprehends well if she is rested and spoken to really slowly. Recognized names of friends who brought food. Wrote ''SLIPPER” with left hand when wanting bedroom shoes. Sitting up. More alert. Robe and socks on. Shook head “no” 2 or 3 times.”

Later Monday morning I was moved into a private room, number 616 West. I had no idea I would still be occupying this same room for three more weeks. When I arrived on the stretcher, I was so very surprised to see that there, on the bedside table, lay my little cross! It was like seeing an old friend. It seemed to be welcoming me. I don't know when somebody might have found it in its hiding place, but there it was now, ready to help me through some very trying times.

Even though my mind had lost all words, I could respond to what I was hearing with my eyes or with facial expressions, with ''handtalk'' or “headshakes”. I was aware of the things going on around me and would see, from under the bulky dressing, my family moving around and about my hospital room but......... what are their names??! I couldn't remember to save my life. I would ponder.-.and try to think, 'out their names just wouldn't come.

I hadn't realized how bad off I was or how bad off I must have appeared to others. To me, seeing myself from within, I was the same person.... the same Ashlyn, the same Mama, same wife, the same mind, personality, values.... unchanged.... it was just that some parts of me weren't working right, right now. But I think those who looked at me from the outside found my condition to be very grave. I was partially paralyzed! Couldn't speak! Couldn't think! Had a mental deficiency! And nobody knew to what degree I would, or could, be able to make a comeback!