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Helpful Hints

From the ShyDrager Group at Yahoo

WHAT ADVICE OR HELPFUL HINT DO YOU HAVE FOR:

Anxiety

My Mother was given Ativan or lorazepam for anxiety

Activities (especially in the later stages of PSP)

We kept the TV on low to mid volume day and night. Massages to relieve muscle spasms are appreciated. Also making sure there were no foot cramps.

Bathing

At the beginning you notice difficulty getting into or out of the tub/shower, later apathy and being unable to clean self, need for a shower chair arises, and then even help with the physical soaping and rinsing/

Later:

Bed baths and hair washing in bed: have your supplies ready plenty of soft absorbent cotton towels, protecting the bedding with large plastic garbage bags with a bath towel placed under the head, and using a cup to pour clean water over the hair. A gentle hair dryer with a cooler setting so the scalp is not overheated is useful afterward. Either a short haircut or setting with rollers and pins can be done if the patient desires. Mom soon lost interest in curls, and was fortunate that her hair had a lovely silvery salt and pepper color and natural waves.

Bladder Control

You must watch carefully, not only that the bladder is not released in the bedding, but also that there is urine output. If your PWPSP goes more than 8 hours without urinating, toxicity begins to build up, to say nothing about discomfort. A catheter can be inserted to relieve the bladder occasionally, or a permanent foley catheter may need to be installed later in the disease progress. For incontinence, Adult disposable diapers can be used. If your PWPSP is sensitive to plastics you might want to try washable waterproofed cotton pads, which are easy to change by rolling the PWPSP from side to side.

Coughing

You will go through phases where the coughing or noise making will be nearly constant. It can get on your nerves, but I don't have any cure for it.

Choking

Early, your PWPSP may choke on food, or cram their mouths full and not swallow. You may need to consult a Speech therapist for exercises that may help with the problem. The choking will continue and worsen, and one of the main causes of death for PWPSP is from aspiration pneumonia - bits of food and drink lodging in the lungs and causing infections to set in. At some point you may make a decision whether the choking is such a problem to consider getting a feeding tube (PEG or Percutaneous EndoGastric feeding tube) to help alleviate the choking incidents. Even with the tube, the PWPSP can take bits of food orally to enjoy the taste, and needs more frequent mouth care to clean and moisten the mouth and lips.

Depression

This may set in early as the PWPSP finds that they are becoming ill and unable to function in their normal ways. It also may be a chemical imbalance which can be alleviated with antidepressant drugs. All four of the women in my family (Mother and two sisters and myself) suffer from depression and use antidepressants which do make a big difference.

Doctor's Questions After Visits

Dry Mouth

This is a frequent problem. We used sponge tipped swabs impregnated with a mouth cleaner provided by the hospital or hospice; they are called toothettes, and are used to clean the teeth and/or gums, tongue, and inside the lips as well as the lips. I also gave Mom a swipe every few hours with a flavoured lip balm, which can be purchased in the dollar stores either one large one or three smaller different flavours in a package. And, even with the feeding tube, we gave her sips of water, or later small amounts of water poured in and immediately suctioned out so that she did not have to swallow and choke from it.

Eating

Manners will steadily decline, and the PWPSP will spill more and more. One of the listserv members recommended making bibs or "aprons" from hand towels with velcro to attach easily to keep the clothing clean during mealtimes. when the eye problems advance to the stage where the PWPSP cannot look downward, it may help to elevate the plate, or to help feed your PWPSP. I tried to keep Mom involved in her own care for as long as she was able, and would constantly remind her to take a bite, chew and swallow. Sometimes, she would fill her cheeks like a chipmunk, or at others she would cry out in frustration asking me to help her.

At first you will be able to prepare regular meals. Later you may want to make things softer even to the point of pureeing everything in a blender. When I could no longer get Mom to eat anything solid, I mixed up a daily pitcher full of "milkshake" comprising canned Boost liquid drink, milk, honey and eggs, which she would readily drink. Later, she could not even swallow the liquids and we were forced by her steady weight loss to make the feeding tube decision. Mom and her doctor and I all discussed it and Mom decided that she wanted it. She lived with the tube another 15 months. I think it is best to be open and allow the PWPSP to make as many decisions about their own care as they are able.

Excessive Saliva

When this became a problem, we first made sure Mom was on her sides so that it could flow out of her mouth, and kept small soft cotton hand towels on the pillow beside her face. We would sometimes find caked and flaky stuff around her ears, and I still don't know if that was waxy scalp build-up, or dried saliva from the overnight drooling. Later we were prescribed a suction machine to help relieve the gurgling, choking sounds by suctioning the excess out of the mouth and throat. Medicare will pay for these machines rentals. If you have hospice, they will help you obtain the correct equipment.

Eye Moisture

The eyes will either dry out or have excess tears, due to dryness. This is best alleviated with either a lubricating eye drop, or gel such as GenTeal that will keep the eyelids lubricated. Both my Mom and our little Lhasa had dry eye problems, and in a pinch, clear Saline solution can be dropped into the eyes to help, too.

Gait/Balance/Falling

Different people use different methods, but we tried Mom with a heavy duty walker, and she could negotiate that for a while, but would skin the backs of her hands going through the door frames. Later, I would stand in front of her, holding hands and walking backward to lead her around. Later yet, as her feet would glue themselves to the floor, I would actually put a foot under the arch of her foot and walk her around like a life sized rag-doll. Some people install poles near often used furniture to aid in transfers from chairs or beds, or hoyer lifts, etc. We used up a lot of Bag Balm on her cuts and scrapes.

Head Posture

Mom was one whose head went rigidly upwards, so that she was looking up most of the time. We tried her on muscle relaxants, but she never seemed to get relief from this neck spasm. Some people have reported good results with botox injections, others had too much relief and forward head drop associated with its use. We were never able to find a doctor locally who gave them.

Impulsivity

I consider this the "different" behaviours that may be your first symptoms showing up. Constant cleaning of the table, and leaning over and falling, even when told repeatedly not to do that, etc. My Mom would wad up her napkins and poke them into her half eaten plate full of food. she would rush to get away from the dinner table, etc. She also repeatedly wanted to go home or lie down whenever we were away from the house. As much as she would repeat, I would repeat my answers.

Spilling Food

Clean it up or help feed your PWPSP.

Tone/lack of

Mother's muscle tone changed - the calf muscles of her legs wasted away, and she had lots of pain from this. We tried adding supplements to her diet, tried having her drink quinine water (tonic), and rubs of every type. Nothing seemed to help alleviate this pain and wasting. During the last phases, her legs did try to bend, and we placed pillows under the knees to elevate them and relieve the spasms somewhat. Her left arm also became stiff and rigid with reduced range of motion. We placed soft teddy bears and pink elephant under this arm to keep it from overheating her body and causing skin breakdown.

Vision

This is one of the earliest and most telling problems by which the movement disorder specialist or neurologist may diagnose the PSP - I was taking Mom to eye doctors every other month in 1995 and the eyeglasses with added prisms are very expensive. Upon getting a new change and leaving the doctor's office, she would immediately complain again about not being able to see! This was one of her most frequent and frustrating complaints, as she could not describe what was the problem so that we could get it corrected. We had laser retinal reattachment done, cataract surgeries in both eyes, and multiple changes of eyeglass prescriptions, with no improvement.

Wheelchair adaptations

Get the best one you can when you get one prescribed. Medicare will pay for only one, and the cheaper, lightweight one you can purchase for about $150.

Other

Watch out from bedsores which can occur from remaining in one position too long, and also from dragging transfers. My Mom got three bad ones on the coccyx area after coming home from the hospital when her feeding tube was installed. Because of the transfers in and out of several beds, etc., when she came home, she had what appeared to be a huge blood blister there. Medicare or Humana health plan would give no preventive care for this until it became an open oozing bedsore. Then, they sent out a wound care specialist nurse to show me how to care for the bedsore. It took us over 6 weeks to heal them, applying special gel into the would after cleansing it daily, and then placing special adhesive films over the wounds, and then applying electrical stimulation around the area. It is MUCH better to prevent them opening than having to heal them!

I hope these hints may prove helpful for some of you.

Linda Ives
Daughter and caregiver to Mary S. 76/6+ dec'd September 3, 2000
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