Helpers Were So Appreciated

We were extremely thankful for three excellent therapists and we realized how fortunate we were to have adequate insurance to help pay them. I had a wonderful husband, four precious children, and a maid, Myrtle, who all helped me with anything I couldn't do myself. They were dedicated to helping me recover, and were making it possible for me to devote all my time and energy to getting well and back to normal.

We had a lovely new home that backed up to a pond which afforded me a great place to walk and recuperate and friends who encouraged and cared about me. I had every advantage! And I felt truly sorry for those that didn't.

Several months after my surgery, I developed a real bad cough that hung on week after week. It scared me because it hurt my head to cough and I was afraid, with so much coughing, I might be popping something loose in my head. I had no protection for my brain... no skull bone...no plate...nothing between my scalp and my brain on the left side of my head. Without protection, I was terrified of maybe stumbling and falling or of being in an automobile wreck.

On my recuperative walks around the pond I had to be so very careful. I was unsure of my footing because of the uneven ground, so I had to watch my feet as I walked to guard against falling. No looking up at the gorgeous pink clouds as the sun was setting in the western sky. No looking ahead to the pond with the little yellow blossoms on the many lily pads. My eyes had to be glued on my feet.

It was not known at this time but it would be as much as a year after the removal of the brain tumor until the protective plate would be inserted, that would substitute for the bone that had been removed for my surgery.

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.

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.