I spent the first few months of this year “soul-searching” where I wanted to live for the next several years. Having lived in the same house since I moved to Richmond 27 years ago, this was home to me. I’ve had the same next door neighbors and the majority of my friends lived in this neighborhood. I was comfortable in this area of Richmond, which has grown increasingly convenient over the years. Everything I need is at my fingertips. But there was one problem… I was a single woman who had an acre of property and a two-story house, along with increased fatigue and muscle weakness. What was I going to do?? How could I manage this??

OK… I was going to approach this as realistically and methodically as possible. Many others in my PPS support group had dealt with this problem. They had found new housing that suited their needs; given up two-story houses or townhouses for one level homes, patio or cluster homes, condos or smaller homes with minimal yard. If they could do this, so could I. But there was one problem, this turned out to be a very emotional issue for me.

I turned to my most “logical” and practical friends. I talked with friends in the support group who had gone through this housing dilemma. Help me brainstorm this issue. Help me figure out the pros and cons. Walk with me through the options. I need someone who can distance themselves from the emotional parts.

The first thing I decided was that I didn’t want to leave this area of the city. I was not giving up my social base. I was comfortable here. I had friends I could call on for help if needed. To me, this was of utmost importance since I don’t have family in town. Next, I talked with realtors, visited new construction sites of empty-nester communities, saw what was available for resale and considered my finances. I had to consider the physical, emotional, financial and stressful aspects of an actual move!

After looking outside my property for options, I then looked at what I had. Because I always had some limited mobility… used crutches outside the house and wore a brace, I had bought a house that had only one step from the garage into the house. I had to be able to get groceries in the house! Several years ago, my father had built me a sectional portable ramp which could be set up in the garage to get a wheelchair in and out easily. OK, this getting in and out of the house was a piece of cake. I had already put raised toilet seats in the powder room and master bath, plus there was room to increase door width in both rooms if necessary. I already had the bathing situation taken care of… transferable bath benches that I had used for a number of years. I had accumulated more medical equipment over the years than Westbury Pharmacy!

Now, for the yard. I had been fortunate that over the past several years, I had found wonderful people to cut my grass, do my leaves, mulch, plus any other heavy yard chores that came up and they were reasonably priced and dependable. I compared that annual cost to the costs of “maintenance fees” in maintenance-free communities and I came out ahead! I also had two beloved dogs that loved their wooded, fenced-in yard. I wasn’t ready to send them into retirement too!

Now, for the stairs. This seemed to be the biggest drawback to staying in this house. Several years ago, I had started my research on stair lifts, so I started looking into it again. There are several places in town that carry and install different brands. I had three companies come to the house to give prices and discuss options. They were all within a few hundred dollars of each other in price. I went to each showroom to “test drive” their stair lifts and see what they looked like in person. I eventually went with Virginia Elevator Co. who took a special interest in the polio community and I felt went beyond the normal sales situation. It is now installed and I love riding up and down the stairs instead of wasting that precious energy or dealing with the possibility of a fall.

I have heard many members of our group talk about moving or making changes in their present homes. It’s something that most of us, able-bodied or not, will have to face eventually and it isn’t an easy decision So many factors come into play that make it a very individual decision for each person or couple.

What this mental (and emotional) exercise answered was essentially: Where will I be happiest? I am happiest in a home I have taken great pride in, which has “Carol” written all over it (I am a designer for goodness sake!), in a neighborhood where I feel safe and comfortable, where my friends live and where I can make the house work for me. I feel most of the major problems have been solved. Is it ideal? Probably not. But for the time being, it works for me and contentment is a wonderful feeling.
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From Henry’s Desk by Henry Holland

The Grief of Post-Polio Syndrome

I went to another funeral this month. Another long time member of our Post-Polio Support Group died. His name was Mel Bleiweiss. Like many of us Mel was courageous, persevering, gentle, generous and a man of integrity. Each month I read a lot of Post-Polio Support Group newsletters from around the country. The mention of the deaths of polio survivors is becoming more frequent. The vast majority of our number originated from thousands of people who had polio in the twenty-year span from 1935 to 1955. Thus, most of us are over fifty years old and many of us are over sixty years old. Most polio surveys indicate that the average age of polio survivors with Post-Polio Syndrome (PPS) is around sixty-two to sixty-four years. Thus, we are entering an age group where death becomes an increasingly higher risk.

I looked at the obituaries in today's Richmond Times Dispatch (May 9, 2004) and found twenty-five deaths in which the age of death was mentioned. Of the fourteen women who died, ten were over the age of eighty. Of the eleve n men listed, six were over the age of seventy. These numbers are somewhat indicative of national averages. The average death age for women in the USA is approaching 80 (around 78). The average death age for men is around 74 to 75. Are polio survivors at a greater risk to succumb before reaching an average life span? The answer to that question is not clear, but gives one reason to think.

So much of what happens as the result of PPS may increase the risk of some life threatening event. Because of increased stress on the total body system, reduced activity, weight gain, systolic and/or diastolic hypertension, accidents/falls, infections, emotional factors and aging before our time, PPSers very well may be at a higher risk to die at an earlier age than our relatively able bodied peers. I wrote an article on “Is PPS Fatal” two years ago and came to the conclusion that PPS is not likely to be fatal. The reader can read that article on our web page at http://www.cvppsg.org/index2.html. Look at the link for “From Henry's Desk” and the article is listed.

I recently went to a medical conference on stroke. The five risk factors given for increasing one's likelihood of having a stroke or a cardiovascular event were cited as:

1. Elevated glucose (blood sugar) even at moderate levels

2. Elevated systolic or diastolic blood pressure. The optimal blood pressure is 130/80 or below

3. Elevated cholesterol or blood lipids. The statin drugs are effective lowering cholesterol especially the bad cholesterol LDH

4. A history of tobacco or illegal drug use

5. Lack of exercise.

With all of these medical warnings I believe that we still have to deal with the grief of PPS, which alone can be a burden. Grief is often caused by the loss of a loved one or the loss of a significant part of one's identity. The vast majority of polio survivors had an identity apart from polio. This identity may have been associated with marriage, parenting, occupation or career, community involvement or by religion. With PPS, all of the previously mentioned components of our identities may have been affected and lost in part. We are confronted with “Why is this happening to me now?” We are having to make life style changes that we did not expect and the necessities of these changes does not seem fair after so many successful adjustments earlier in life.

As a result of PPS our independence may be lost or at least threatened. Many of us have to depend more on our spouse, family members and friends. Some of us have to pay for necessary help. Some of us are no longer able to work and have to live on fixed incomes with rising medical costs. Some of us are not able to drive a motor vehicle as safely as in the past. Some of us have been forced prematurely to bring a successful career to a close. Some of us can no longer safely lift our grandchildren. Physical barriers can often be overcome or marginalized. Every older person eventually faces a reduction of activity and energy, but PPSers often face these reductions long before becoming truly elderly.

All of these realities for many polio survivors produce a feeling of grief which may never be fully resolved. I think many of us have worked through this grief. Hopefully we will not withdraw or isolate ourselves from family members, friends and other polio survivors. Expressing and talking about what we feel is usually helpful and therapeutic. Often the inner resources of one's faith can certainly be both helpful and inspiring in facing the grief of PPS. I have also found that some of the poetry that I read and studied in my youth can be uplifting and even more meaningful as I grow older. One example is the poetry of English poet William Blake (1757 -1827). The excerpt below, written in 1808, reminds us “not to cease from mental fight.” Most PPSers can understand this approach to the grief of PPS.

And did those feet in ancient time
Walk upon England's mountains green?
And was the holy Lamb of God
On England's pleasant pastures seen?

And did the Countenance Divine
Shine forth upon our clouded hills?
And was Jerusalem builded her
Among these dark Satanic mills?

Bring me my bow of burning gold:
Bring me my arrows of desire:
Bring me my spear: O clouds unfold!
Bring me my chariot of fire.

I will not cease from mental fight,
Nor shall my sword sleep in my hand
Till we have built Jerusalem

The following article is published with permission from Post-Polio Health International for education of our members regarding the necessary knowledge about Pulmonary health and the role which it plays with the sometime necessity of using Pulmonary Assist Machines in maintaining our independence.

Post-Polio Health
Spring 2004, Vol. 20, No. 2, continued
(ISSN 1066-5331)
©Copyright 2004 Post-Polio Health International (PHI).
All rights reserved. No part of this publication may be reproduced or transmitted in any form without permission in writing from the publisher.
Published quarterly in February, May, August, November. Edited by Joan L. Headley

Post-Polio Breathing and Sleep Problems Revisited

Judith R. Fischer, MSLS, Editor, Ventilator-Assisted Living, and Joan L. Headley, MS, Editor, Post-Polio Health

“Post-Polio Breathing and Sleep Problems” was published in the fall of 1995 (Polio Network News, Vol. 11, No. 4). As a result of the continual flow of phone calls and emails from polio survivors and family members about this life and death topic, Judith Fischer, editor of Ventilator-Assisted Living (our other quarterly newsletter), and I decided to revisit and revise the original article. Our goal is to educate and to clarify misinformation about breathing problems of polio survivors.
—Joan L. Headley, Editor, Post-Polio Health (ventinfo@post-polio.org)

New breathing and sleep problems in aging polio survivors can be insidious and often go unrecognized by either polio survivors, their family members or their health care providers. Polio survivors may have weakened breathing muscles as a result of the initial damage by the poliovirus; the lungs themselves were not affected. Those who were in an iron lung during the acute phase should be aware of the potential for developing problems later in life and educate themselves in order to recognize important signs and symptoms which may indicate underventilation which may lead to respiratory failure. Even those who did not need ventilatory assistance during the acute phase may also be at risk for underventilation and should be aware of problems with breathing and sleep.

Underventilation (hypoventilation is the medical term) means that not enough air reaches the lungs to fully inflate them. The result may be too little oxygen and too much carbon dioxide (CO2) in the blood. Underventilation can be caused by one or more of the following: weakness of the inspiratory muscles (mainly the diaphragm and rib muscles) for breathing in, weakness of the expiratory muscles (the abdomen) for breathing out and producing an effective cough to clear secretions, scoliosis (curvature of the spine), and sleep apnea.

Other factors contributing to a polio survivor’s breathing problems are a history of smoking, obesity, undernutrition, and other lung diseases such as asthma, bronchitis and emphysema.

Vital capacity (VC) is the volume of air that can be expelled after taking a big breath and is a measure of how well the lungs inflate. VC normally decreases with age, but this decrease in VC is more serious in an aging polio survivor with weakened breathing muscles. Many polio survivors had impairment of their inspiratory muscles, and the normal changes due to aging may cause them to lose VC at a greater rate. Polio survivors may not experience symptoms of underventilation until their VC falls to 50% or less of predicted (normal).

Signs and symptoms of underventilation during sleep include:

•weak cough with increased respiratory infections and pneumonias.

Polio survivors experiencing one or more of the above signs and symptoms should seek a respiratory evaluation (simple and noninvasive pulmonary function tests) by a pulmonologist, preferably one experienced in neuromuscular disorders. Physicians are listed in the Resource Directory for Ventilator-Assisted Living (www.post-polio.org/ivun/d.html).

Pulmonary function tests should include the following measurements. The values that indicate a warning sign for respiratory problems are in parentheses.

•VC — upright (<50%)

•VC — supine (a drop of >25% from upright to lying down)

•MIP — maximum inspiratory pressure (<60 cm H2O)

•MEP — maximum expiratory pressure (<60 cm H2O)

•peak expiratory cough flow (<300 L/min)

•end-tidal CO2 (>45 mm Hg)

•overnight oximetry may be prescribed to detect episodes of oxygen desaturation (<88% during sleep).

Management of breathing and sleep problems can be achieved largely through the use of nocturnal noninvasive ventilation, commonly in the form of small, lightweight bilevel positive pressure units. The units have a long tube/circuit that attaches to a mask (nasal, facial or oral), nasal pillows or mouthpiece worn during sleep. Polio survivors may find themselves gradually extending periods of ventilator use, perhaps during a daytime nap. Some polio survivors may need to use a volume ventilator to guarantee delivery of a larger volume of air than a bilevel unit can provide. Noninvasive ventilation may eventually fail, and invasive tracheostomy positive pressure may be necessary.

Treating underventilation with oxygen therapy instead of assisted ventilation can lead to respiratory failure and death because supplemental oxygen can blunt the function of the brain’s respiratory control center. However, polio survivors who use assisted ventilation and have additional medical problems such as COPD, pneumonia or heart problems, or who are undertaking long airplane flights, may benefit from oxygen therapy under careful supervision.

Polio survivors may also have sleep apnea contributing to underventilation. Sleep apnea, an interruption of breathing during sleep, can be obstructive, central or mixed. Obstructive sleep apnea (OSA) is the most common form and is prevalent in the general population. The standard test for OSA is a sleep study; the standard treatment is the use of a continuous positive airway pressure (CPAP) unit with a nasal mask or nasal pillows during sleep. However, polio survivors with both weakened breathing muscles and sleep apnea should use bilevel positive pressure or volume ventilation, not CPAP.
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This concludes the newsletter for this time. I hope that this format can be used in the future to everyone's satisfaction. Until the next time we wish everyone good health and good fortune!

"Where's my purse! I have to go! Now!" Alice demands.

"Where are you going, Alice?" I ask.

"I have to go! I have to be there! I need to go home! Rightnow!" Alice mumbles as she tries to push past me and out thedead-bolted door of the house she's lived in with her daughter for more than 10 years.

During the day Alice is fine. She dresses herself and eatswithout assistance. She'll help Linda fold laundry, or dust.She enjoys the occasional joke, and she loves to get out inthe car. She dozes contentedly in her chair off and on.

By late afternoon, though, Alice changes. Increasingly she becomes more agitated. She rummages through things, tossingthem wildly about as if she's looking for something she can'tarticulate. Sometimes she gets aggressive. Other times she'si inconsolable with a grief she can't explain, wailing and wringing her hands. She doesn't seem to want to be touched. It's a fight to get her ready for bed, and she's up and down all night. Linda is exhausted and desperate.

Alice is sundowning.

Sundowning is aptly named after the time of day - late afternoon or evening - when people with Alzheimer's or other dementiasoften become upset, agitated, suspicious, paranoid, and generally difficult. Not infrequently, sundowners don't sleep well at night. Many will pace incessantly. Often they seem to get their days and nights mixed up - sleeping well in a chair during the day, but wakeful and up at night. Often sundowning is worse after a change in daily routine or after a move.

The theory used to be that sundowning was caused by the reduction of light in the evening. Now it appears more likely that being tired at the end of the day probably has a lot to do with sundowning behavior. Individuals with dementia are using their energy reserves simply getting through the day. Even the smallest, most "routine" activity is a demand on their thinking ability. By the late afternoon their reserves are used up, and they no longerhave the ability to cope with what, for them, is a confusing environment. Every new stimulus, even hunger or a need to use the bathroom, adds to the accumulated stress.

The research continues. But, no matter what the cause,caregivers need strategies to manage sundowning behaviors.

First, and foremost, a thorough medical examination and a medication review is essential. In some cases, an adjustment in the kind or dosage of medication, or the time of day it's being taken, can make a big difference.

Work with the physician to treat any medical conditions.Arthritis pain is often a contributor, and a pain reliever given in the afternoon might make all the difference. Urinary tract nfections very often contribute to sundowning. Allergies, skin irritations, even a slight cold can make things worse.

Anticipate and prevent as much physical discomfort as you can. Schedule regular trips to the bathroom, or changes of undergarments. Keep the house at a comfortable temperature and check to see if a sweater is needed (or needs to be removed). Check to see that socks aren't wrinkled inside shoes and that waistbands aren't too tight.

Plan activities or trips out of the house for the morning hours, when the sundowner is usually at his or her best. Avoid toomuch stimulation in the afternoon, if you can.

Try to plan no more than one activity or trip out each day. Even early in the day, too much going on can be overwhelming, and will lead to problems later.

Limit the amount of noise and activity at home. If the dishwasher is running, the vacuum is roaring, the television is on, and the dog is barking, there is too much going on at once for the dementia victim to process.

Create private spaces. If you can't avoid a certain amount of normal chaos, provide a safe and quiet place for your sundowner to retreat to. Create "off limits" private areas with doors you can lock for yourself and other family members, too.

Watch for patterns. If you can identify things that seem to set off agitation, maybe you can modify your behavior or routine. If bathing is a battle in the evening, try bathing in the morning instead.

Clear out clutter. Cluttered classrooms have been proven to increase hyperactivity in children. A cluttered home will have the same effect on a sundowner. Clear off tables and other surfaces. Move breakables and collectibles to a safe off limits room. Take away small tables, throw rugs, and anything else that could trip up a pacer. Make a safe walking area where
your sundowner can work off built up energy.

Turn on the lights. If your sundowner tends to see or hearthings that aren't there, dark places can be scary. Sometimesa soft light left on in the bedroom helps reduce shadows and fears at night.

Encourage a rest period for an hour or so just before the time sundowning usually starts. If being overtired contributes to sundowning, some quiet time to regroup may help. If she resists lying down on the bed for a nap, try a quiet hour in a comfortable chair or recliner with calming music (no TV).

If all else fails, go back to the doctor. You may need a new medication or a change in the dose. It might take several tries to find something that helps.

Remember that this, too, shall pass. If you feel that it's becoming more than you can handle right now, call for help. Reach out to family members. Look into respite care. Talk to an eldercare specialist for more ideas and resources. Takecare of yourself. Your sundowner needs you, even if he doesn't know it or won't admit it.
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Although this article only refers to she and her , "Sundowning" does occur in the male population as well. The same points of care are very similar for the male. Not every hint is totally adequate in different situations that might occur.
When in doubt contact your Physician or any of the support groups that might be available in your community. ---Comment by Ethel E. Killgore Taylor aka Blueangel---
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If you wish to receive this Newsletter you can contact:

Molly Shomer
Head Coach
The Eldercare Team
http://www.eldercareteam.com
mshomer@eldercareteam.com
Box 700291
Dallas, TX 75370
(972) 395-7823