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					HUMAN INTEREST FEATURE




                                            We know that old age impacts many
                                            aspects of life. But what role does it
                                            play in the life of someone with CFS?
                                            As more and more people with this
                                            illness reach their senior years, here’s
                                            a look at some of the special issues
                                            they face.



                                           CFS Aging
                                                              &                      BY PAMELA YOUNG,
                                                                                     DIRECTOR OF PUBLICATIONS




                               I
 AT-A-GLANCE                       t’s been more than 20 years since the Incline Village, Nevada, and Lyndonville, New
   It’s important to               York, outbreaks brought attention to the mysterious and complex illness now called
    distinguish potential
                                   chronic fatigue syndrome (CFS). Since then, we’ve seen research expand, health
    illnesses of older age
    from ongoing symp-         organizations become more engaged and the public slowly move toward greater aware-
    toms of CFS.               ness of CFS as a serious and debilitating illness.
     Aging parents, reliance        That’s how time is playing out in the historic sense. But what about how time plays
     on caregivers and         out in the lives of the many individuals with CFS who are now reaching their senior
     housing concerns pose     years? What role does aging play in this illness and what are some of the special issues
     extra challenges for      CFS patients, their families and their doctors face?
     the senior with CFS.

     Therapeutic strategies    The physical
     and medications may
                                   For many seniors with CFS, the challenges of aging begin with a body already com-
     need to be adjusted as
     one gets older.           promised by illness. Immune system imbalances, orthostatic intolerance, sleep dysfunc-


16                                                                               THE CFIDS CHRONICLE FALL 2007
                                                                                                 HUMAN INTEREST FEATURE




                                           Another big factor . . . is the interplay of
                                           symptoms. Joint pain, postexertional malaise,
                                           cognitive challenges, fatigue and unrefreshing sleep
                                           are all common                    to CFS and aging.


tion and years of reduced activity             Another big factor in CFS and          as the fatigue, exercise intolerance,
associated with CFS can make the           aging is the interplay of symptoms.        pain, insomnia or cognitive com-
body less resilient to the effects of      Joint pain, postexertional relapse,        plaints of CFS—conditions such as
aging. Says one 70-year-old Florida        cognitive challenges, fatigue and          coronary artery disease, COPD, sleep
woman with CFS, “Old age is an             unrefreshing sleep are all common to       apnea, dementia, malignancies and
insult to the body, but my body’s in       CFS and aging. This means that for         Parkinson’s disease.” She stresses the
poor shape already. It gives new           many older people with CFS, age            importance of discerning the onset of
meaning to the saying ‘adding insult       tends to reinforce the daily symptoms      these conditions from the ongoing
to injury.’”                               they experience.                           symptoms of CFS.
     The process of aging can make              It can also be hard to sort the           To many seniors with CFS, that
the body less resilient to CFS as well.    effects of one condition from the other.   means even more time and energy
CFS patient Terry Hedrick, 59,             As Trussler puts it, “Between CFS          must be spent monitoring their health
describes how aging has interfered         symptoms and aging, it’s hard to tell      and managing day-to-day care. With
with a strategy she’s long used to deal    which one is causing the problems.”        energy resources limited to begin
with her orthostatic intolerance. She                                                 with, even trips to the lab for blood
                                                More than simply frustrating, this
explains, “Sitting upright in a chair                                                 work can use up a patient’s “energy
                                           can be a deeply troubling experience.
causes me dizziness. Until recently                                                   quotient” for the day.
                                           Longtime CFS physician Dr. Nancy
I’ve dealt with this by sitting down on
                                           Klimas provides an example. “CFS               Says Hedrick, “When the prob-
the floor. Now I’ve developed symp-
                                           patients often experience cognitive        lems with aging were added on top
toms consistent with arthritis, and it
                                           complaints. When a patient has these       of CFS, I had to make some tough
hurts significantly to get up and
                                           symptoms in her 50s and 60s, she           decisions about how to reduce the
down. So I’ve lost the ability to fore-
                                           may assume a progressive dementia is       demands on my life.”
stall my orthostatic problems without
                                           at fault. That can be very frightening.
paying a price.”                                                                      The practical
                                           But it could also just be a symptom of
     Sixty-nine-year-old John Trussler,    her CFS. A cognitive assessment that            As people with CFS age, they’re
who’s had CFS for 23 years, copes          can distinguish CFS from early             confronted with many of the same
with CFS by giving himself time to         Alzheimer’s can be very helpful.”          practical matters that most people face
recuperate from activities, to let his
                                                The opposite situation—where          as they grow old: aging parents,
body recharge itself after any type of
                                           illnesses of older age can be hidden       increased reliance on caregivers,
exertion. He shares, “Now that I’m
                                           by CFS—can also be true. Says Dr.          housing concerns and other needs.
older every trip or activity seems to
                                           Lucinda Bateman, who runs a clinic         But here, too, CFS adds an extra ele-
take even more out of me than it used
                                           specializing in treating CFS and           ment of complexity and uncertainty.
to. I must allow even more time to
                                           fibromyalgia, “As people age, there            For example, few people with
recover. . . . In general it’s harder to
                                           are an increasing number of medical        CFS, particularly in their older years,
manage my illness because everything
                                           conditions that might masquerade           can physically or logistically shoulder
seems harder to do.”


THE CFIDS CHRONICLE FALL 2007                                                                                              17
HUMAN INTEREST FEATURE



the responsibility of caring for aging         Ilene Neely, a 73-year-old woman       experience dealing with the unique
parents.                                  with CFS, is in the situation of caring     needs of CFS may be a challenge.
     Shares Hedrick, “Probably my         for both her son with CFS and her           Even the most extensive online senior
biggest hurdle from aging has been        husband who now lives in a nursing          living Web sites that provide cus-
the need to care for my parents. In the   home. When asked about CFS and              tomizable searches don’t include
past couple of years, my mother sud-      aging, her first thought is about the       CFS in the long list of ailments and
denly died and my father’s health         loved ones she struggles to care for.       health issues a user can employ to
has deteriorated . . . I find myself           “I can’t do what I’d like for either   refine their search. It’s likely that
having to monitor both his care and       my husband or my son,” says Neely.          some CFS education and a frank
finances remotely.”                       “I visit my husband and bring him           discussion of needs will be required
                                          good food, but then I’m out of com-         to determine whether a facility or
     She describes challenges from
                                          mission for one or two days afterward.      program is a good fit.
not being able to travel alone to
complications with staying in the         I want to do so much more than my                For many people with CFS, retire-
decision-making loop when a sibling       CFS allows. It’s anguishing.” She           ment planning and extended care are
or other family member bears more of      continues, “And as I age I also worry       further complicated by limited finan-
the day-to-day responsibility for an      about what’s going to happen to my          cial means stemming from years of
aging parent. She also describes the      son and his CFS. Who will care for          being disabled.
guilt CFS patients can experience         him when I no longer can?”                        Unfortunately, it’s not just the
from not feeling capable of providing          Even for a self-sufficient CFS         patients and caregivers who are aging
enough care. To a person with CFS         patient, ambiguity exists about how to      and facing retirement. Many of the
who knows firsthand the importance        plan for the future. Hedrick explains,      first doctors to recognize, legitimize
of good care and support, this            “Without benefit of good longitudinal       and treat CFS are starting to retire or
dynamic can be deeply distressing.        data on the course of this illness, I       scale back their work load. Though
    What about people with CFS            wonder when I should be planning on         these physicians have served the CFS
whose parents are their primary care-     leaving my house and finding a less         community steadfastly for years and
givers even now?                          burdensome environment.” She also           deserve to enjoy retirement, many
                                          worries about where to go once she          CFS patients will certainly miss their
     For many adults with this illness,
                                          decides to leave her current home.          care. And a new generation of CFS
one or both parents continue to be the
                                          “Ads for ‘active-living retirement com-     experts hasn’t yet been identified.
primary source of care, transportation
                                          munities’ drive me batty given that I            Aside from being another prod-
and shelter. As both the CFS patient
                                          haven’t been active since age 45.”          uct of the aging CFS community, the
and care-giving parents get older, this
arrangement can be jeopardized by              Few resources exist to help aging      retirement of the early CFS-focused
health complications on either side of    CFS patients find appropriate elder         physicians points to one more reason
the equation. These parents, who          care and housing. Although many             why it’s so important to educate the
often provide extraordinarily dedi-       retirement communities and assisted         medical community about the illness.
cated support, may find themselves        living programs are equipped to             The more doctors, nurses, physician
progressively unable to manage their      handle health limitations, finding a        assistants and other health care pro-
adult child’s CFS-related needs.          facility with specific knowledge and        fessionals learn about CFS, the more




For many adults with this illness, one or both
parents continue to be the primary source
of care, transportation and shelter.


18                                                                                    THE CFIDS CHRONICLE FALL 2007
                                                                                                        HUMAN INTEREST FEATURE




                                          Some medications used in the treatment of
                                          CFS can be more                   problematic in older
                                          patients—particularly sleep medications that can
                                          cause excessive sedation and symptoms the
                                          following day.



likely that CFS patients will be able          Both Dr. Klimas and Dr. Bateman       lifestyle that works for me, along
to find knowledgeable care wherever       describe the importance of paying          comes old age and all its attendant
they seek it.                             attention to effects from the duration     difficulties that require revisiting the
                                          of CFS in older patients. These effects    decisions I previously made . . . But
The medical                               include deconditioning from lack of        I’m in the process of figuring out how
     What are some of the special         activity, osteoporosis and vitamin         to deal with the new challenges.”
medical considerations when it comes      deficiencies. Says Dr. Klimas,                  Trussler, having reassessed some
to CFS and aging? According to Dr.        “Deconditioning for many years can         of his priorities now that he’s older,
Bateman, “The principles of geriatrics    cause a variety of problems. Though        shares his outlook. “Over the past 23
apply to seniors with or without CFS.     the CFS patient has limited capacity,      years I’ve been involved in 12 experi-
Be more careful with medications.         some light exercise every day is key.”     mental programs to treat my CFS, but
Use lower doses. Be aware of side             Says Dr. Bateman, “I try to            none has helped. As I’m approaching
effects and drug interactions.”           increase my vigilance across the           70, I’ve come to the conclusion that I
     Dr. Klimas agrees and adds,          board as my patients age—medication        don’t want to do that any more. That
“Most of my patients with CFS are         monitoring, lab screening, symptom         doesn’t mean I’ve given up on life—
drug sensitive to begin with, so I find   management, physical conditioning,         far from it. Life is very meaningful,
I worry more about drug interactions      finances, support systems . . . I’m        even if more difficult.”
and toxicity.” She offers the example     more attentive to monitoring every-              As Hedrick, Trussler, Neely and
of how statin medications for choles-     thing since so many additional things      other people with CFS navigate their
terol can cause muscle pain and how       can go wrong.”                             way into and through their senior
diuretics for blood pressure can lower                                               years, increased attention to the role
an already low blood volume associ-       The outlook                                of aging may help make the way a
ated with CFS.                                 As we begin the third decade in       little smoother. The CFS community,
     Dr. Klimas also notes that some      the history of this illness, aging is an   with its advocacy, support, education
medications used in the treatment of      issue more and more people with CFS        and research, owes it to itself and its
CFS can be more problematic in older      are facing. Even the children from the     aging members to keep the subject
patients—particularly sleep medica-       noted 1984 Lyndonville outbreak of         in view. ❚❘❘
tions that can cause excessive sedation   CFS are now in their 30s.
                                                                                     Special thanks to Terry Hedrick and John
and symptoms the following day. She            As in the rest of society, old age    Trussler, both former board members of the
shares, “I just saw a patient that was    complicates many aspects of life,          CFIDS Association, Association donor Ilene
bedbound with what we thought was         from physical to emotional to practi-      Neely and the other Association members
a CFS relapse, but was actually a side    cal; and as usual, the challenge is        and supporters who contributed perspective
effect of her Xyrem dosage. Dropping      further increased if you have CFS.         to this article.
the dose released her from a frighten-         Hedrick shares, “It seems that
ing daytime lethargy.”                    just when I’ve developed a ‘paced’


THE CFIDS CHRONICLE FALL 2007                                                                                                     19

				
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