Judy: Misc. 8

Cereals and Cereal Products - Farina (not enriched), regular cream of wheat, corn grits, corn flakes, rice, rice flakes, puffed rice, macaroni, noodles, spaghetti, corn meal, cornstarch, tapioca, white flour.
Cheese - 1/2 oz. cheddar or Swiss cheese may be used instead of 1/2 cup milk.
Desserts - Angel cake (do not use commercial mix), white sugar cookies, gelatin, fruit pies (homemade), fruit tapioca, fruit whip, puddings with allowed milk and egg, shortbread, water ices.
Eggs - 1 whole. Whites as desired.

Judy: Misc. 7

Appendix IV

Moderately Low Calcium and Low Phosphorus Diet

The following list of foods allowed and foods to avoid was prescribed for me to help prevent the build-up of stone-like deposits in either the joints or kidneys. Because of my immobility, these calculi deposits become a real possibility for causing problems. Also, in an attempt to control my weight level, I try to maintain a 1250 diet.

Foods Allowed

Beverages: Milk in allowed amounts (4 oz.); coffee, tea, sanka, Postum

Breads: French or Italian without added milk; pretzels, saltines, soda crackers, matzoh, water rolls.

Cereals and Cereal Products: Farina (not enriched), regular cream of wheat, corn grits, corn flakes, rice, rice flakes, puffed rice, macaroni, noodles, spaghetti, corn meal, cornstarch, tapioca, white flour.

Judy: Misc. 6

5. Foot upright - Place hand around the heel, forearm against the ball of the foot. Applying pressure from the arm, bend foot up as far as possible into a standing position; lower and repeat.
6. Ankle rotation - Place hand firmly under the ball of foot. Raise foot first into upright position, then rotate slightly so sole faces inward; return to upright position, then rotate until sole is turned out. Return to upright position and repeat.
Both resistive and active range of motion exercises for my arms as well as passive finger exercises were also prescribed for me, but I feel these areas are too specialized to be mentioned here. (See Appendix I, drawing 7 for sandbag pattern for active range of motion exercises.)

Judy: Misc. 5

Appendix III

Passive Range of Motion Exercises

The following exercises are to be done by someone else. Repeat each exercise 10 times on each leg.

1. Straight leg raise - Place one hand under ankle, the other above the knee. Raise the leg from the hip, keeping the knee straight; lower and repeat.

2. Knee Bend - Place one hand under knee, the other under the ankle. Bring knee to the chest with the knee fully bent; straighten out and repeat.

3. Walk out - Place one hand under the knee and the other under the ankle. Keeping the knee straight and level with the hip, walk leg sideways and back; repeat.

4. Leg Roll - Place one hand above the knee, the other above the ankle. Keeping the knee straight, roll the leg from the hip - first out, then inward so leg is rotating a full 180 degrees.

Judy: Misc. 4

Here, Judy added "Appendix I, Drawings," which includes drawings and directions for a telephone "cuff" a poncho, and devices to allow her to hold a pencil, eating utensil, or similarly-shaped aid.
Next comes "Appendix II," which consists of photographs of Judy and her surroundings. It includes pictures of various aids she used at work, such as specially designed stands for an "electronic differential counter" and glass slides, as well as Judy herself at home and at work in the lab. (She was a medical technician at a hospital in Philadelphia, Pa.)

Judy: Misc. 3

5. Although I have never seen it, I have been told by a rehabilitation nursing instructor that the book Spinal Cord Injuries by Dr. Daniel Ruge (Chas. C. Thomas, Bannerstone House, 301 - 327 E. Lawrence Ave., Springfield, Ill.) contains a good section on rehabilitation.
6. A Mealtime Manual for the Aged and Handicapped is a unique, completely authoritative guide which clearly demonstrates how kitchen tasks can be streamlined to permit the aged and disabled to live active, self-sufficient lives. This manual includes sections pertaining to nutrition, menus, appliances and self-help devices. It also contains a comprehensive listing of organizations and agencies which offer information and help, along with sources for obtaining useful equipment. This little gem is published by Essandess Special Editions, a division of Simon and Schuster, INc., and comiled by the Institute of Rehabilitation Medicine, New York University Medical Center. Their publication department, 400 E. 34th Street, New York, N.Y. 10016, also has other excellent pamphlets, etc., at minimal charges.

Judy: Misc., 2

3. An excellent publication for the handicapped, their family and friends as well as professional people dealing with the handicapped is Accent on Living, which is an authoritative clearing house for problems confronting handicapped people. One of their projects is Accent on Information, a computerized data file which covers and answers specific questions on every aspect of handicapped life. Their address is - P.O. Box 726 Gillum Road and High Drive, Bloomington, Ill. 61701.
4. Clothing and some self-help devices are available through a catalogue published by Fashionable - Clothing for Handicapped Women, Rocky Hill, N.J. 08553.

Judy: Misc. I

Miscellaneous

Because a continuing disability, such as mine, calls for the output of much time, energy, and money, it is foolish to realistically expect that anyone can contribute indefinitely without some help. Therefore, may I suggest a few areas worth of investigation for partial solutions and information.

1. Social Security Disability Compensation - Young adults involved in a catastrophic accident, who have worked a specified amount of time, should investigate their eligibility for disability payments and Medicare.

2. Montgomery County Homemakers furnish a limited, but very valuable service through their Home Health Aides.

Judy: Part IV

PART IV

1 A.M. to 9 A.M. - Sleeping and turning

A. Once ready for sleep, we remove the wedge pillow and I am turned to my left side, using the huck drawsheet to position my hips comfortable and foam pillows behind my back, between my knees and under my head.

1. Although the normal practice dictates turning ever two hours, I have found through experience and the fact that I am using this Alternating Pressure Pad, that I can safely tolerate approximately three hours per side.

2. At the proper time, remove pillows and again using the huck drawsheet, turn to my back.

3. Later, final turn to the right side using pillows as before.

4. Return to back to begin the morning's work.

B. GOOD MORNING! As you can see, my care has spanned the full twenty-four hours of the day, but there is no question that I have benefitted from this routine.

Judy: Part III, b.

B. Because I still have my daily quota of drinking to finish, evening pills and final serving of fruit to consume, I am arranged with my bedside table in front of me and the wedge foam pillow again behind me.
1. Frankly, this is the first time I have had to myself all day for quiet thinking, planning and just being myself.
2. When I feel like it, this is the time that I devote to relaxing, reading for pleasure, studying, listening to radio or records or watching TV.

Judy: Part III, a.

Part III
9 P.M. to 1 A.M. - Evening Care
A. Once back in bed and undressed, evening care never varies. It always includes:
1. A thorough inspection of the skin of the hips, buttocks, heels, etc. for any signs of red or white spots. In the event one is found, it is rubbed with ointment or powder until the color approaches normal.
2. A thorough washing, rinsing and patting dry of all strategic areas. We use abundant Desetin powder in the rear folds and a coating of vaseline from a plastic tube in the front folds of the thighs. (We use the type type vaseline because it remains untouched until used. We apply it to the groin area because we have found this delicate skin to be inclined to slough and split and have been very pleased with the results of this precaution.)
3. Nightgown on, face and hands washed and the ritual is completed.

Judy: II, l. (End of Part II)

2). In the interest of productivity and to a degree, self-discipline, I try to follow my own rule of always having a project going to keep me occupied. Because it is too easy a habit to slip into, this rules out daytime TV or reading for pleasure.
3). While I realize the editorial nature of the proceeding comments, I feel that these areas have added measurably to my attempt at being a functioning, contributing, involved person.
b. Again, generous fluid intake is just as important on this day as it was previously - so I continue to keep my kidneys working overtime.

Judy: II, k.

2. At Home Day
a. These afternoons follow much the same routine as a work day, with the exception of getting into the wheelchair and car. They are usually quite full and often include friends who offer their hands for secretarial work and note taking, purely social visits, keeping up to date with a large correspondence and lecture notes and monthly appointments with the hairdresser, social worker and priest.
1). To help us remain interested in others, we have a very special friend who aids us all in keeping life manageable by listening to us vent our fears and frustrations. She is a social worker from the Family Service of Montgomery County who reinforces our judgements and realistically encourages us to live as normal a life as possible. Fortunately, we already have a very close family relationship, so her talents in helping achieve this goal are not used as fully as they otherwise might be.

Judy: II, j.

6. Though not for me, hand controls for operating a car and available and many handicapped are capable of using them.
7. Thanks to the added mobility given me by the car, work at the hospital, visiting, shopping, dining out, etc. are all made possible.
c. The hours remaining after dinner and before bedtime are also spent in a variety of activities, such as preparing for class, entertaining, working on my latch hook rug or needlepoint (done with my teeth), typing and occasionally TV.
d. Keep drinking!
* * * * *

Judy: II, i.

B. As with the morning program and governed by it, my afternoon also follows two basic patterns:
1. Work Day
a. Once up and able to function slightly more on my own, I can brush my own teeth, feed myself lunch and begin to drink the first of my five large containers of fluid. (Capacity for this quantity of fluid - about five quarts daily - comes from long practice and is not recommended for beginners.)
b. Later, strapped securely into my wheelchair, I am ready to get into my special car which is a Checker Cab converted to include:
1). Extra wide doors which open 180 degrees.
2). Portable ramps for getting into and out of the car.
3). A raised roof to accommodate my wheelchair while I am still sitting in it.
4). Wheel wells in the floor into which the chair wheels are firmly secured.
5). A head rest attached to the back of the wheelchair, completes the transportation picture.

Judy: II, h.

g. Inexpensive book holders, which prop a book open on a table for easy reading, can be found in variety or stationary stores.
1). "Books-by-Mail" is a state funded program made available to shut-ins, through which homebound persons can order library books and have them delivered by mail. Books arrive accompanied by a pre-addressed return label and stamps for return postage. A "patient" can be declared eligible by any doctor, visiting nurse, therapist, home-health-aide, etc. Also made available through local libraries are record and tape libraries. Although I do not use these myself, I understand they are a very enjoyable way of "reading" a book. A record player for listening to these in provided by the Society for the Blind as a service for the visually handicapped.
2). Also available are filmed libraries, which project pre-filmed books onto a wall or ceiling for direct reading. Pages are turned forward or backward by pushing a button. Projector and films are supplied on indefinite loan through local libraries and the titles cover a wide range of topics.
* * * * *

Judy: Part II, g.

f. For typing, I use a portable, manual typewriter and find that the strength and range of motion required is an added source of arm therapy.
1). For actually striking the keys, a second cuff made of Velcro, holding a pencil stub - eraser end down, works very well with the strength applied by both hands.
2). Because my letters are usually fairly short, I frequently use note paper which doubles as an envelope when folded and sealed with its own sticker. These are very attractive and hopefully take the sting out of the brevity of the message.
3). For longer projects or whenever more paper is required, we found continuous teletype paper, either in a roll or folded with perforations (Standard Register Co., York, Penna by the name "continuous letterhead - 9 x 11") to be another aid to my independence, since I do not have to keep asking someone for more paper.
4). Also, self-stick labels which come on a roll have been a great time and effort saver when addressing many envelopes, especially for the Christmas card list.

Judy: Part II, f.

1). To make my writing darker and more legible than with a normal pen, I use a felt tip pen such as the Flair by Paper-mate.
2). A regular desk blotter with gummed photo holders arranged at varying intervals, forms a very simple holder to make writing on small pieces of paper, such as checks or envelopes, a little less difficult. I find it sufficient to secure only the top two corners of the envelope, etc. while writing.
3). A book of crossword puzzles used as a warm-up exercise before printing or writing something important, is a handy and painless way of getting the proper muscles co-ordinated.

Judy: Part II, e.

c). Since I use a tape recorder in my work as a medical technologist, we purchased as record, having a remote control switch on the microphone for which my father built a stand incorporating a lever around the switch. With this beside my work area, I can bump the lever on and off a will, dictating comments whenever necessary. (See Appendix I, drawing 4)
d. A timer switch gives me some degree of independence in T.V. viewing or with other appliances. These come in models to turn one or more electrical appliances both on and off or only off, at pre - set times. (Again, Radio Shack)
e. And elastic ankle-wrist athletic cuff with two extra holes cut for inserting a pen, makes a simple device to hold the pen or pencil in a relatively normal position for writing. (Mine is by Baka Mfg. Co., Sharon, Mass. - model #301.) (See Appendix I, drawing 5)

Judy: Part II, d.

2). For holding the receiver while placing calls and talking at greater lengths, I use a commercially sold shoulder-rest on another phone.
3). We also have a phone amplifier which allows a normal home phone to be used as an executive or conference phone. (Available at the Radio Shack - an electronics store with nationwide branches.)
b. A plug-and-talk intercom system is a convenient addition, especially for night time "sick room" monitoring. Plugged into any two household or electrical outlets it gives clear room-to-room, upstairs-downstairs, indoor-outdoor, etc. communications. (Also available at Radio Shack.)

Judy: Part II, c.

3. Since most of my productivity and relaxation during the day depends upon the field of communictions in one way or another, we have found or devised much adaptive equipment to aid my independence in this area.
a. In order that I might make telephone calls, we have converted to the pushbutton type phone, which while slightly clumsy for everyday calls, at least enables me to push the "0" button for help in case of an emergency.
1.) For picking up the receiver and answering the phone, I have a "C" cuff of orthoplast taped to the back into which I can slip my hand. Any pliable material, light weight but rigid (such as aluminum) could be used for this. (See Appendix I, drawing 3)

Judy: Part II, b.

2. To allow me as much independence as possible, I also use:
a. A universal cuff, made of Velcro, that can be used to hold such articles as a toothbrush, eating utensil or possibly a comb. (See Appendix I, drawing 2)
b. A special adjustable handle which can be fitted onto a glass and hooked over the hand for drinking. This works best with a tall thermo-plastic tumbler.
c. However, because I drink large quantities of fluid each day, a homemade "drinker" is much handier than consuming one glass at a time. This is nothing more than a quart-sized plastic refrigerator container with a hole in the lid through which is placed an elongated straw. (Two plastic straws with ends telescoped and taped together.)

Judy: Part II, a.

Part II
1 p.m. to 9 p.m. - Living
A. Once situated in the wheelchair or chaise lounge for the day, I need many special devices, adaptations and household arrangements to make any routine activity possible. Before describing my afternoon's schedule, I will try to list and explain most of the self-help equipment involved.
1. Within the house, for my convenience, we have included:
a. A low level light switch on the wall which is easy to reach from a wheelchair.
b. A sink, located next to a door for easy access, which includes an individual control faucet rather than the dual control type. This make is possible for me ot ride to the side of the sink and control the flow and temperature of water with the pressure from only one. hand.
c. A desk, which is elevated on blocks for easy access from a wheelchair and is used for reading, writing and typing projects.
d. A large elevated dining counter, with plenty of leg room underneath, is for mealtimes and some of my more ambitious projects.
e. Slow grade ramps replace any outdoor steps and lead to doors amply wide for a wheelchair.

Judy: 1, r.*End of Part I)

c). a metal pitcher, an oblong, pliable plastic dish basin and a cup for scooping water over the head.
d). patient is placed at an angle in the bed with head extended over the side into the basin. My hair is short and lends itself to this treatment. While not the best method, I thought it was a delight for many months.
d. Chest colds - Because of my inability to cough, any chest congestion is cause for concern. My method of coping with this problem is, first, to be helped into a sitting position, then lower myself until my head touches my knees. This applies enough gentle pressure on the diaphragm to allow m to cough and clear my chest.

Judy:1, q.

c. Besides shampooing in the tub, we have evolved two alternate methods for accomplishing this activity:
1). When I am in the wheelchair it is possible, by using a special shampoo tray with suction cups to wash my hair in a sink equipped with an extension spray house. We use a sheet of plastic pinned around my neck to protect both the wheelchair and myself from suds and spray.
2). During those few times when I was unable to get out of bed, we managed to shampoo my hair satisfactorily, if somewhat primitively, while I was still flat on my back. We used:
a). the flannel lined plastic table cloth to protect the bed and several towels for mopping wet hair.
b). the bedside table lowered to bed height and placed as close as possible to the side of the bed.

Judy: 1, p.

5.) Once dressed, care must be taken to keep underpants from constricting the catheter in the crotch area.
6.) Because I do not use a leg bag for urine collection, a larger, more noticeable drainage bag is attached securely to the side of my wheelchair. It is important to make sure that the tubing does not become tangled in the wheels. To make this arrangement less conspicuous, we use a zippered plastic attache case as a cover-up.
b. Menstrual Period - Because of so many h ours spent in the wheelchair, with no possibility of changing the pad, I find the following to be best for me:
1). One-fourth of an extra absorbent birds-eye diaper, folding in sixths, makes a soft, non-abrasive, easily placed pad. This should be situated in such a way that it is smooth, not binding and away from the catheter. (It is because of the catheter that a belt cannot be used.)
2). For slower days, mini-pads are small enough to be used safely.
3). Some might find Tampax satisfactory, but I have never been daring enough to try them with the catheter.

Judy: 1, o.

a). Using approximately six inches of non-allergenic Dermicel silk tape, fold the middle three inches in half, stick sides together. This leaves approximately one and one-half inches at each end for sticking onto the leg.
b). Using the non-sticky portion (middle) of the tape, form a loop loosely around the catheter tube on the inner, upper thigh area. When properly positioned, secure both sticky ends to the leg. These in turn are secured by Dermicel clear tape at right angles to the silk tape. (See Appendix I, drawing 6)
4). Due to a greatly reduced bladder capacity, I cannot clamp off my catheter during the trip to the bath tub. Instead, we have another string and hook suspended from the side of the tub for hanging the drainage bag while I am bathing.