FirstStep 71

LIVING
WITH LIMB
DIFFERENCES
Li mb amputati on i nter fer es wi th getti ng on wi th l i fe, a si tuati on that can be compounded
by the fal se concepti ons of peopl e who have never exper i enced amputati on or been cl osel y
associ ated wi th someone who has. Most peopl e tend to bel i eve that a per son l oses a l i mb,
gets a pr osthesi s, and ever ythi ng i s fi ne. The fi r st task of new amputees, thei r fami l i es, and
fr i ends may be to l ear n that i t i s not so easy.
72 FirstStep
O
BUILDING
SELF-ESTEEM
Gettingby with a littlehelp
fromyour friends, family, and
other amputees
by Gail M. Williamson, PhD
One way to expedi te thi s pr ocess i s to tal k to
other amputees, pr efer abl y, those who ar e
si mi l ar to you befor e under goi ng the sur ger y.
Knowi ng what to expect si gni fi cantl y decr eases
both physi cal and psychol ogi cal di str ess.
Unfor tunatel y, few amputees ( onl y about 10
per cent) ar e offer ed thi s oppor tuni ty. But those
who do tal k to another amputee befor e sur ger y
ar e much better adj usted after thei r sur ger y
than those who do not.
A second opti on i s to tal k to another
amputee shor tl y after sur ger y but onl y about
25 per cent r epor t havi ng been gi ven thi s
oppor tuni ty. I t i s har d to expl ai n why so many
peopl e under go amputati on wi thout bei ng
mor e awar e of the chal l enges that l i e ahead.
Al though some amputati ons ar e unexpected
( as i n tr aumati c i nj ur y) , l i mb r emoval usual l y
i s not unexpected but, r ather, the r esul t of
pr ol onged attempts to save the l i mb. Mor e-
over, a l ar ge number of amputees ar e mor e
than wi l l i ng to vi si t wi th pati ents both pr e-
and post- sur ger y. Thus, i t appear s that you
may have to take contr ol of the si tuati on
your sel f. I f you ar e faci ng, or have r ecentl y
exper i enced, amputati on, ask ( demand, i f you
must) that your heal thcar e and ser vi ce pr ovi der s
r efer you to other amputees i n your ar ea. The
i nfor mati on they can pr ovi de, most l i kel y
gl eaned fr om thei r own tr i al - and- er r or
endeavor s, may wel l be i nval uabl e to you and
those ar ound you.
Despi te thei r l ack of for ewar ni ng, many
amputees adapt qui te wel l , but substanti al
per centages do not. I n col l abor ati on wi th
col l eagues at the Uni ver si ty of Pi ttsbur gh,
Car negi e Mel l on Uni ver si ty, and Hobar t and
Wi l l i am Smi th Col l eges, r esear ch at the
Uni ver si ty of Geor gi a has been focused on
i denti fyi ng di ffer ences between these two gr oups.
The r esul t i s that we can offer some addi ti onal
cl ues about factor s that r el i abl y pr edi ct
adj ustment. Among these ar e: ( 1) extent of
sur ger y, ( 2) pati ent age, ( 3) fi nanci al r esour ces,
( 4) i ndi vi dual di ffer ences i n per sonal i ty, and ( 5)
suppor t avai l abl e fr om cl ose other s. A per son
who adj usts most r eadi l y i s one who has the
best- case scenar i o i n al l ar eas. Thi s does not
mean, however, that al l ar e necessar y. I ndeed,
they ar e cl osel y i nter twi ned, and some can offset
defi ci enci es i n other ar eas.
Pr eser vati on of the knee ( or el bow) j oi nt
enhances use of a pr osthesi s. Thi s has to do wi th
the actual physi cs i nvol ved, but i t al so r el ates to
over al l physi cal condi ti on, the pr esence of
compl i cati ng i l l nesses, and psychol ogi cal factor s
such as per sonal moti vati on. For these ( and
pr obabl y other ) r easons, many ol der adul ts ar e
never abl e to use a pr osthesi s. Does thi s mean
that ol der adul ts ar e l ess l i kel y to successful l y
adapt to amputati on? Not at al l .
I n fact, r esear ch str ongl y suggests that el der l y
peopl e adapt better to al l for ms of chr oni c i l l ness
and di sabi l i ty than do those who ar e younger.
Thi s may be because i l l ness and di sabi l i ty ar e
mor e expected i n ol d age and, ther efor e, of l ess
concer n. Our r esear ch shows, however, that i t i s
exper i ence r ather than actual age that makes the
di ffer ence. Ol der chi l dr en ( adol escents) , who
have had mor e exper i ence wi th chr oni c
di sabi l i ti es, ar e l ess di str essed than ar e younger
chi l dr en who have, by necessi ty, had l ess
exper i ence. The same i s tr ue for ol der ver sus
younger adul ts. Thus, ti me appear s to be an
i mpor tant factor. The l onger peopl e deal wi th a
heal th pr obl em, the better adj usted most
become.
Resear ch by Dr. Ri char d Schul z and hi s
col l eagues at the Uni ver si ty of Pi ttsbur gh i ndi cates
that thi s i s the case for even sever el y di sabl i ng
condi ti ons such as spi nal cor d i nj ur y. Over ti me,
most eval uate thei r qual i ty of l i fe as bei ng as good
as ( or even better than) peopl e who have no
di sabi l i ty. But ti me i s not the onl y factor that
i nfl uences both shor t- and l ong- ter m adaptati on.
FirstStep 73
As cr ass as i t may seem, fi nanci al r esour ces
hel p a gr eat deal . Our own r esear ch cl ear l y
shows that adequate i ncome faci l i tates the abi l i ty
to conduct nor mal acti vi ti es, and thi s abi l i ty then
l eads to l ess depr essi on. Addi ti onal i nfor mati on
pr ovi ded by par ti ci pants i n our r esear ch hel ps
expl ai n why. For exampl e, a r eti r ed denti st, who
had never mar r i ed, r epor ted feel i ng for tunate
that he was fi nanci al l y abl e to hi r e a compani on.
He stated, Money can make i t easi er to deal
wi th al most any of l i fes di ffi cul ti es.
Another man, a 48- year- ol d vi cti m of a j ob-
r el ated acci dent, had l ost both l egs at the hi ps.
However, the l ar ge fi nanci al settl ement he
r ecei ved al l owed hi m to tr avel extensi vel y wi th
the wheel chai r Ol ympi cs pr ogr am. He r epor ted
havi ng a ni ce gi r l fr i end and vi ewed hi s l i fe as
better than befor e hi s acci dent. Both of these
men wer e extr emel y wel l adj usted.
Now, l ets assume the opti mal si tuati on: An
amputee has r etai ned the cr i ti cal j oi nt, i s ol der,
and has ampl e fi nanci al r esour ces. I s he or she
necessar i l y wel l adj usted? The answer i s no,
because other factor s al so pl ay a r ol e. Among
these ar e aspects of the i ndi vi dual s per sonal i ty.
For exampl e, peopl e whose di sposi ti ons ar e
mor e neur oti c ( e.g., they mor e easi l y become
di scour aged, feel l i ke gi vi ng up when thi ngs go
wr ong, feel hel pl ess, and want someone el se to
sol ve thei r pr obl ems) and l ess opti mi sti c ( e.g.,
they fr equentl y feel that i f somethi ng can go
wr ong for them, i t wi l l , and r ar el y count on good
thi ngs happeni ng to them) ar e l ess l i kel y to
adapt to any for m of l i fe str ess. I n addi ti on, we
have r epeatedl y found that, when faced wi th a
di sfi gur i ng medi cal condi ti on, peopl e who ar e
mor e sel f- consci ous ar e mor e l i kel y to avoi d
acti vi ti es conducted i n publ i c and to exper i ence
mor e depr essi on as a r esul t of r estr i cti ng thei r
val ued acti vi ti es.
The suppor t that other peopl e pr ovi de can
make a cr i ti cal di ffer ence. But soci al suppor t i s
not a one- way str eet success depends on
both the suppor ter and the r eci pi ent. New
amputees often fi nd accepti ng hel p di ffi cul t.
Thi s i s under standabl e. I t thr eatens ones sense
of i ndependence and, per haps, the most basi c
sense of sel f- wor th. But peopl e who ar e wi l l i ng
to pr ovi de hel p, despi te the fact that i t takes away
fr om other aspects of thei r l i ves, ar e al so those
who car e the most about your wel l bei ng. They
may fal ter i n thei r effor ts; they may want to hel p
too much or they may be afr ai d of hel pi ng too
much and, thus, hel p too l i ttl e. Knowi ng exactl y
what to do i s compl i cated by the dynami c
r ecover y pr ocess that i nfl uences the amount of
car e an amputee needs.
Communi cati on i s of the utmost i mpor tance
dur i ng thi s per i od. Do not be afr ai d to ask for
hel p you need but al so do not be afr ai d to r efuse
hel p that you do not need. Peopl e who ar e cl ose
to you wi l l appr eci ate your gui dance because
they ar e l i kel y to have no cl ear concept of what
you actual l y need. Wor ki ng i n the dar k i s
extr emel y str essful i n any si tuati on. Above and
beyond ever ythi ng el se, tr y not to take out your
fr ustr ati on on them. Demonstr ate that you
appr eci ate thei r effor ts and that you do
r ecogni ze that they ar e moti vated ( per haps
er r oneousl y) by thei r concer n for your wel far e.
Communi cate! Tal k about your feel i ngs and
encour age your cl ose other s to expr ess thei r
feel i ngs as wel l . Chances ar e that they ar e as
scar ed and uncer tai n as you ar e. Shar i ng these
fear s and uncer tai nti es wi l l str engthen, r ather
than weaken, your r el ati onshi p.
Of al l the factor s known to i nfl uence
adaptati on to amputati on, i nter per sonal
r el ati onshi ps wi th other s may be the most
cr i ti cal . They can over come mor e sever e
physi cal di sabi l i ty, age- r el ated adj ustment
pr obl ems, l ess- than- opti mal fi nanci al r esour ces,
and potenti al l y hamper i ng per sonal i ty tr ai ts. I t
Gail M. Williamson, PhD,
isan associateprofessor,
Department of Psychology
at theUniversity of Georgia.
can be har d to focus on a si gni fi cant other s
feel i ngs when you ar e goi ng thr ough a maj or l i fe
tr ansi ti on of your own, but the effor t i s mor e
than wor thwhi l e. You need to make ever y effor t
to under stand the other per sons per specti ve,
and i t i s of extr eme i mpor tance that you
conti nue to pr ovi de some r el ati onshi p r ewar ds
that super sede your medi cal condi ti on.
Compl i ment your par tner. I ndi cate that you
appr eci ate hi s or her effor ts. Spend qual i ty ti me
together, even i f i t i s no mor e than r el axi ng,
watchi ng a movi e, and eati ng popcor n. Taki ng
the i ni ti ati ve wi l l not onl y make your par tner feel
that you r ecogni ze hi s or her feel i ngs and
concer ns but al so wi l l gi ve you the per sonal
sati sfacti on of bei ng abl e to i nfl uence
thi s, per haps most i mpor tant, aspect of your l i fe.
About the Author :
Agroupof youngamputeesat the2000ACAConferencein Orlando, Florida.
74 FirstStep
F
SKIN AND
SOCKET CARE
Basic tips on
caringfor your skin
(Always consult your physi-
cian or prosthetist if sores
or blisters erupt, which can
lead to ulcers and serious
infections.)
by Paddy Rossbach, RN
For your pr osthesi s to wor k at maxi mum
effi ci ency, your socket needs to fi t your r esi dual
l i mb i nti matel y. Thi s i s cal l ed a total contact
socket, and fabr i cati ng thi s socket r equi r es the
ski l l s of a pr ostheti st. Though sockets ar e
usual l y made of fl exi bl e mater i al s, often they ar e
l i mi ted i n thei r abi l i ty to fl ex and change shape
whi l e mai ntai ni ng suppor t. However, i f you
have a maj or change i n the shape of your
r esi dual l i mb, the socket has to have one, too, to
avoi d the compl i cati ons of fr i cti on and pr essur e
that can cause sor es, bl i ster s and even ser i ous
ul cer s and i nfecti ons.
Comfor t i n a pr ostheti c socket depends on:
Mai ntai ni ng a good fi t
Cor r ect al i gnment
Ski n car e
Fi t and al i gnment ar e the r esponsi bi l i ty of your
pr ostheti st; however, he or she cannot hel p you
unl ess you tel l hi m or her when somethi ng i s
wr ong. The fi r st r ul e, ther efor e, i s Communi -
cati on.
Ski n car e i s the r esponsi bi l i ty of the i ndi vi dual .
Ther e ar e a few basi c r ul es, the fi r st of whi ch i s
cl eanl i ness. Remember that your r esi dual l i mb
i s encased i n a compl etel y - or par ti al l y - ai r ti ght
socket, whi ch does not br eathe or al l ow sweat to
evapor ate. Sweat i s aci di c and sal ty and, when
al l owed to dr y, for ms ti ny cr ystal s ( l i ke sandpa-
per ) on your ski n. I f thi s sweat i s l eft on the ski n
and socket, bacter i a can gr ow, and i f the ski n i s
br oken, i nfecti ons may occur, whi ch can become
sever e i f l eft untr eated.
To avoi d ski n pr obl em s, fol l ow
these steps:
Ever y day, or mor e of ten i f necessar y, wash
the r esi dual l i mb wi th a mi l d or anti bacter i al
soap and r i nse wel l .
Ever y day, wash ever ythi ng i n contact
wi th your ski n wi th a mi l d or
anti bacter i al soap and r i nse wel l . Thi s
i ncl udes socks, nyl on sheaths, si l i cone
sucti on sockets, gel i nser ts and fl exi bl e or
har d sockets. Note the manufactur er s
i nstr ucti ons for cl eani ng and fol l ow cl osel y.
Do not shave your r esi dual l i mb. Shavi ng
can cause i ngr own hai r s,
and of ten l eads to i nfected
hai r fol l i cl es.
Onl y use sof teni ng
cr eams when your
ski n i s at r i sk of
cr acki ng or
peel i ng.
Do not use
al cohol - based
pr oducts on your r esi dual
l i mb; they dr y out the ski n, can cause
cr acki ng or peel i ng, and cr eate a potenti al si te
for i nfecti on.
I f you must cover an abr asi on, use the
thi nnest dr essi ng possi bl e. I f the abr asi on was
caused by pr essur e, addi ng a bul ky dr essi ng
wi l l i ncr ease the pr essur e.
Do not add soft mater i al s such as wool to
pad a sor e spot. Thi s wi l l onl y add mor e
pr essur e.
Be awar e of how your socket fi ts. Adj ust sock
pl y i f appr opr i ate. I f you cannot mai ntai n a
good fi t, vi si t your pr ostheti st.
Tr y to mai ntai n the same body wei ght. A gai n
or l oss of fi ve pounds shoul d be manageabl e;
mor e than that wi l l pr obabl y r equi r e a
pr ostheti c adj ustment.
I f a pr obl em does occur, i t usual l y fal l s i nto one
of the fol l owi ng categor i es:
Rash
Bl i ster
Ul cer
I nfecti on, l ocal or di ssemi nated
Ver r ucous ( war tl i ke) hyper pl asi a
Fi r st, vi si t your pr ostheti st. The pr obl em can
usual l y be sol ved wi th a pr ostheti c adj ustment. I f
you have an ul cer or i nfecti on or i f you have
di abetes or ci r cul ator y di sease and have anythi ng
mor e than a mi l d r ash consul t your physi ci an
i mmedi atel y. The fol l owi ng tr eatments ar e shor t-
ter m. Pr obl ems that per si st r equi r e hel p fr om
both your physi ci an and pr ostheti st.
FirstStep 75
Unl ess contr ai ndi cated by the manufactur er,
l i ghtl y powder the i nsi de of si l i cone l i ner s or
fl exi bl e pl asti c sockets unti l they l ose the
tacky feel i ng.
Bl i ster s can be avoi ded by usi ng a
commer ci al l y avai l abl e pai nt- on fi l m
dr essi ng, such as MedLogi cs Li qui Shi el d,
desi gned to hel p pr event ski n br eakdown.
To tr eat bl i ster s: ( i ndi vi dual s wi th
di abetes or ci r cul ator y di sease
shoul d see thei r physi ci an)
A sur face bl i ster shoul d be l eft i ntact i f
possi bl e. I f i t opens, keep i t cl ean and cover ed
wi th a thi n l ayer of anti bi oti c oi ntment. Soak
a smal l pi ece of ti ssue ( such as Kl eenex) i n
mi ner al or baby oi l wi th vi tami n E; pl ace the
ti ssue over the bl i ster and then don the
si l i cone l i ner as usual . The ti ssue i s used
because i t does not add bul k. Unti l the bl i ster
heal s, you may fi nd water y fl ui d i n your l i ner.
Wash and dr y the l i mb and l i ner fr equentl y
thr oughout the day, r eappl yi ng the anti bi oti c
oi ntment and oi l .
A l i ne of i tchy bl i ster s someti mes appear s
ar ound the edge of, or i nsi de of, si l i cone
l i ner s, especi al l y i n hot weather. A l i ttl e
mi ner al or baby oi l ar ound and under the
edge of the l i ner pr events thi s. Tr eat the
bl i ster s as above.
Bl i ster s that occur wi th above- knee sockets
can someti mes be cover ed wi th ver y thi n see-
thr ough dr essi ngs such as Li qui Shi el d.
Ul cer s and l ocal and di ssemi nated i nfecti ons
shoul d al l be tr eated by your physi ci an; however,
the fi t of your pr osthesi s shoul d al so be checked.
I f the cause of the pr essur e i s r emoved, the
pr obl em wi l l often be r esol ved wi thout the need
for aggr essi ve measur es.
Ver r ucous hyper pl asi a
Thi s i s an i tchy, r ed, r ai sed, ci r cul ar ar ea on the
di stal end of a r esi dual l i mb, caused by sucti on
bei ng appl i ed to the end of the l i mb. Thi s
condi ti on fr equentl y occur s when the socket i s
too ti ght and the l i mb does not make total
contact wi th the bottom of the socket.
To pr event ver r ucous hyper pl asi a:
Mai ntai n a good total contact socket fi t.
To tr eat ver r ucous hyper pl asi a:
Remove the cause.
Mi scel l aneous ti ps:
Excessi ve sweati ng can be r educed by usi ng a
str ong anti per spi r ant gel on the r esi dual l i mb.
Appl y ever y ni ght unti l sweati ng i s r educed, then
as of ten as necessar y to contr ol sweati ng. Do not
use thi s i f ther e ar e any br eaks i n ski n i ntegr i ty. A
str onger pr epar ati on, Dr i - sol , i s avai l abl e by
pr escr i pti on.
About the Author :
Paddy Rossbach, RN,
istheformer chair of
theACAboard of
directors(1997-2000).
Sheiscurrently an
ACAconsultant in the
areasof fundraising
and healthcare
education.
Rashes
A r ash can be caused by ei ther an al l er gi c
r eacti on, often to your own sweat, or a fungus,
si mi l ar to athl etes foot. I t occur s mor e
fr equentl y i n peopl e who per spi r e heavi l y and
use heavy sucti on l i ner s.
To avoi d r ashes:
Wash and r i nse l i mb and l i ner ever y day.
Li ghtl y dust the r esi dual l i mb wi th a
medi cated tal c powder such as Gol d Bond at
ni ght, and, i f thi s i s not contr ai ndi cated by the
manufactur er, befor e donni ng your l i ner.
( Ammens i s pr efer r ed by some because i t
does not contai n tal c.) Sucti on wi l l not be
affected as l ong as the dusti ng i s l i ght.
Or
Use a l i ght fi l m of di aper r ash cr eam such as
Bal mex at ni ght and under the l i ner i f not
contr ai ndi cated by the manufactur er. ( Thi s
has been found to be ver y effecti ve for smal l
chi l dr en.)
To tr eat r ashes:
Use an anti hi stami ne l oti on, such as
Benadr yl , whi ch wi l l usual l y take car e of the
r ash i f i t i s an al l er gi c r eacti on.
I f you do not catch the r ash qui ckl y enough,
you may have to r esor t to an over- the-
counter- str ength cor ti sone cr eam.
Use a commer ci al l y avai l abl e athl etes foot
tr eatment such as Ti nacti n.
Remember, i f the r ash does not r espond wi thi n
24- hour s, seek medi cal hel p. Someti mes, i t i s
necessar y to wear a thi n sheath under the l i ner
dur i ng tr eatment to al l ow for a l i ttl e ai r fl ow.
Bl i ster s
A bl i ster can be caused by abnor mal pr essur e or
by shear i ng of the ski n agai nst tacky si l i cone
or pl asti c.
To avoi d bl i ster s:
Mai ntai n a good fi t; i f necessar y add or
r emove a sock dur i ng the day.
76 FirstStep
G
KEEP
MOVING
Exercises for
Lower-Extremity Amputees
by Melissa Wolff-Burke, EdD, PT, ATC,
and ElizabethCole, PT
Getti ng back to your pr evi ous acti vi ti es may be
your obj ecti ve fol l owi ng amputati on. Even i f
you deci de not to use a pr osthesi s ( or ar e unabl e
to use one) , the fol l owi ng exer ci ses ar e desi gned
to hel p you r each your goal s. Many of these
acti vi ti es can be done wi th or wi thout a
pr osthesi s whi l e l yi ng on a fi r m sur face, si tti ng
i n a str ai ght back chai r or on the edge of your
bed, or standi ng at a counter. Ver y l i ttl e
equi pment i s needed to keep you and your
r esi dual l i mb i n good wor ki ng or der. Exer ci ses
ar e an essenti al par t of mai ntai ni ng your heal th
and functi on, and getti ng back to your hobbi es
and acti vi ti es i s possi bl e i n the near futur e, i f
you keep movi ng!
Pl ease be sur e to check wi th your doctor or
physi cal ther api st befor e begi nni ng these
exer ci ses or any other exer ci se pr ogr am. Your
cur r ent l evel of fi tness, your gener al heal th, and
the condi ti on of your r esi dual l i mb ar e al l
factor s that wi l l pl ay a r ol e i n how r i gor ousl y
you can exer ci se. A qual i fi ed heal th pr ofes-
si onal can teach you how to take your pul se and
stay wi thi n your tar get hear t r ate.
Range of m oti on
Fol l owi ng your amputati on, you wi l l need to
decr ease the amount of ti me your l eg i s bent.
Because you wi l l i ni ti al l y spend mor e ti me
si tti ng, the r emai ni ng j oi nts of your l eg, and
even your back, wi l l spend mor e ti me bent or
fl exed. Too much of thi s can cause pr obl ems for
your muscl es and j oi nts because they get used to
bei ng i n a shor tened posi ti on and you may
devel op a contr actur e. A contr actur e i s when
your j oi nts cannot go thr ough the ful l r ange of
moti on. Thi s can cause pr obl ems whether you
ar e r eady for a pr osthesi s or not. Often a
contr actur e can be avoi ded by si mpl y payi ng
attenti on to the fol l owi ng si mpl e exer ci ses.
Per for m fl exi bi l i ty/ r ange of moti on sl owl y,
hol di ng each posi ti on for 30 seconds.
Do not bounce.
Count al oud sl owl y ( tr y counti ng i n another
l anguage) or use a ti mer.
Str etchi ng i s a mi l d sensati on of tensi on -
not pai nful agony. Use your good j udgment
to fi nd the r i ght amount of str etch.
Be sur e to str etch your knee and hi p many
ti mes ever y day.
Do not hol d your br eath.
Knee fl exi bi l i ty
exer ci ses and posi ti ons
To keep the moti on i n your knee, l et your knee
r est on a cushi oned boar d or on the l eg r est of
the wheel chai r i n i ts ful l y extended posi ti on. I f
you dont have a wheel chai r l eg r est, posi ti on
your l eg on a couch or chai r. See i f you can
devi se other ways thr oughout the day to avoi d
si tti ng i n the same posi ti on. Per haps you have a
cane or sti ck handy and can do the r otati on
str etch shown i n Pi ctur e 2. Lyi ng on your
stomach i s a gr eat way to str etch out many
j oi nts. See Pi ctur e 1.
Hi p and back fl exi bi l i ty
exer ci ses and posi ti ons
By r esti ng fl at on your stomach or on your
el bows, as shown i n the pi ctur e, you can
mai ntai n or i mpr ove the fl exi bi l i ty ( extensi on) of
your knees, hi ps and l ower back. I t i s r ecom-
mended that you l i e on your stomach twi ce a
day for 10- 20 mi nutes. I f your br eathi ng i s
i mpeded or i ts uncomfor tabl e for you, use
pi l l ows under your chest for suppor t or ask the
advi ce of a physi cal ther api st.
Picture1
Picture2
FirstStep 77
Str ength
Now that you ar e on the way to bei ng mor e
fl exi bl e l ets l ook at some ways to make you
str onger. You wi l l need to r el y on your
nonamputated l i mb heavi l y now. Ther efor e,
str engtheni ng exer ci ses wi l l i nvol ve both your
amputated l i mb and your nonamputated l i mb.
Any of the exer ci ses shown bel ow can be
per for med wi th ei ther l eg.
I I f you ar e addi ng wei ghts as shown i n
Pi ctur e 3 the nonamputated l eg may be abl e to
manage heavi er wei ghts.
I You can begi n wi th no wei ghts on your l i mb
and tr y to move i t i n al l di r ecti ons as many ti mes
as possi bl e. As you add wei ghts, keep the
r epeti ti ons to a maxi mum 25 and then move on
to a heavi er wei ght or a mor e chal l engi ng
exer ci se ( Pi ctur e 4) .
I Dont for get your stomach muscl es and your
ar ms as you wi l l need a l ot of hel p fr om them to
get movi ng ( Pi ctur e 5 and Pi ctur e 6) .
Picture3
Picture4
Picture5
Picture7
I Stand up and turn from side to side, with or
without a prosthesis. Hold on to a counter and reach
forward, sideways, and back to exercise the balance
center in your brain. ( Picture 10, Picture 11)
Picture8
I Tr y pl ayi ng tug of war wi th an el asti c
band ti ed to a stur dy obj ect or hel d by your foot
or a fr i end ( Pi ctur e 7) . Pul l the band i n al l
di r ecti ons. Begi n i n a si tti ng posi ti on, and then
tr y i t kneel i ng and standi ng.
Str engtheni ng does not need to be done ever y
day. I t i s best i f you do i t ever y other day and
al ter nate i t wi th a di ffer ent acti vi ty. On your days
off fr om str engtheni ng you can wor k on bal ance
and agi l i ty ski l l s.
Bal ance
Whether you ar e si tti ng up, l yi ng down, standi ng
or wal ki ng, your bal ance wi l l be di ffer ent
fol l owi ng your amputati on. You wi l l need to
r etr ai n your br ai n and that takes pr acti ce. Many
peopl e wi th amputati ons have r i sen i n the ni ght,
tr i ed to take a step and found themsel ves on the
fl oor. Thei r br ai n for got to r emi nd them that the
l i mb was no l onger ther e and the bal ance center
di d not fi gur e i t out soon enough.
I Hel p your br ai n by pr acti ci ng ver y si mpl e
acti vi ti es such as si tti ng and r eachi ng for obj ects
( Pi ctur e 8) , kneel i ng ( Pi ctur e 9) and standi ng
on one l eg.
Picture9
Picture6
Picture10
Picture11
78 FirstStep
I f you ar e goi ng to use a pr osthesi s, you wi l l
need to wor k on basi c bal ance acti vi ti es befor e
you become an accompl i shed wal ker. Bei ng
abl e to bal ance on your pr ostheti c l eg wi th ful l
wei ght i s necessar y for a smooth wal k. Wi th
ever y step, ther e i s a moment when you have
onl y one l eg on the gr ound. That l eg, whether
pr ostheti c or natur al , wi l l have to be abl e to hol d
al l your wei ght. Pr acti ce accepti ng wei ght on
your pr osthesi s by l eani ng over the pr ostheti c l eg
( Pi ctur e 12) . Then ki ck a bal l to someone usi ng
your nonpr ostheti c l eg to do the ki cki ng ( Pi ctur e
13) . Hol d on to a r ai l and l i ft your nonpr ostheti c
l eg up to the step and then br i ng i t back to the
floor ( Pictures 14 & 15) . If both of your legs have
been amputated, step up with ei ther l eg.
Agi l i ty
I n addi ti on to good bal ance, you wi l l want to
pr acti ce your agi l i ty. Agi l i ty i s what l ets you
move confi dentl y fr om pl ace to pl ace and gets
you out of the way of a fast- movi ng obj ect.
I Si t or stand and pl ay catch ( Pi ctur e 16) .
Begi n by havi ng your par tner thr ow the bal l
di r ectl y to you, then make thi s mor e chal l engi ng
by havi ng the bal l tossed out to the si de. Thi s
shoul d be done i n a pl ace wher e you cannot fal l
i nto anythi ng that can i nj ur e you.
I Si t i n a chai r and thr ow or ki ck a bal l
agai nst a wal l .
I Danci ng wi th or wi thout a par tner i s a gr eat
way to wor k on your bal ance and agi l i ty. Even i f
you j ust stand i n one spot and r ock back and
for th, you ar e wor ki ng on your str ength,
bal ance, agi l i ty and together ness! ( Pi ctur e 17)
Picture12
Picture13
Picture14
&15
Concl usi on
Range of moti on, str ength, bal ance and agi l i ty
al l pl ay a par t i n your pl ans to get back to what
you l i ke to do. By fol l owi ng these exer ci ses or
those pr escr i bed by your heal th pr ofessi onal , you
wi l l r eap the r ewar ds when you ar e r eady to get
movi ng!
Aspecial thank you tothemembersof the
Winchester AmputeeSupport groupfor being
modelsand reviewersof thisarticle.
About the Author s:
Melissa Wolff-
Burke, EdD, PT,
ATC, isdirector of
clinical educa-
tion and
assistant
professor in the
Division of
Physical Therapy
at ShenandoahUniversity, Winchester,
Virginia. Shehasalsobeen thedirector of
ACT Children'sCampfor seven yearsand
serveson theACAExecutivePublications
Committee.
Picture16
Picture17
ElizabethCole,
PT, hastaught
amputeeshowto
walk, run, and
parachutefrom
airplanessince
1989at Rehab
Designsof
America
(formerly Austin Prosthetics Center) in
Austin, Texas.
FirstStep 79
T
VETERANS
HEALTH
ADMINISTRATION
Dedicated to Veterans Causes
by David Whatley
The Veter ans Heal th Admi ni str ati on pr ovi des
compr ehensi ve pr ostheti c and or thoti c ser vi ces
to el i gi bl e veter ans i n a ti mel y, customer- fr i endl y,
cost- effecti ve manner. These ser vi ces ar e
pr ovi ded i n the Pr ostheti cs Tr eatment Center
( PTC) by a team of wel l - tr ai ned pr ofessi onal s
who ar e dedi cated to veter ans causes.
Ser vi ces pr ovi ded by the PTC staff i ncl ude, but
ar e not l i mi ted to, eval uati on, pr escr i pti on,
measur ement, fabr i cati on, fi tti ng and fol l ow- up
of or thoti c and pr ostheti c devi ces. Other ser vi ces
i ncl ude the or der i ng, i nstr ucti on, del i ver y,
pi ckup and r epai r of medi cal equi pment and
suppl i es. The PTC al so pr ovi des hear i ng and
communi cati on ai ds, envi r onmental contr ol s
and adapti ve equi pment for motor i zed vehi cl es
for el i gi bl e benefi ci al s, as wel l as cr i ti cal car e
equi pment such as food pumps, i n- home
oxygen equi pment, r espi r ator s and ai r fi l tr ati on
systems.
The Or thoti c Labor ator y staff pr ovi des cl i ni cal
and consul tati ve ser vi ces to the physi ci an staff
r egar di ng pati ent eval uati on and pr escr i pti ons
for or thoti c and pr ostheti c devi ces. When
necessar y, the staff al so pr ovi des techni cal
suppor t by fabr i cati ng, fi tti ng and adj usti ng
pr escr i bed devi ces.
Or thoti c ser vi ces ar e pr ovi ded upon r ecei pt of
a physi ci ans pr escr i pti on. For pati ents
r equi r i ng cl i ni cal eval uati on or custom devi ces,
appoi ntments ar e schedul ed to ensur e the
cl i ni ci an takes the ti me necessar y to pr ovi de
ser vi ces that meet pati ents needs.
When possi bl e, noncustom, off- the- shel f
devi ces wi l l be pr ovi ded on a wal k- i n basi s.
The Veter ans Heal th Admi ni str ati on offer s
speci al i zed ser vi ces i n some of i ts compr ehensi ve
medi cal center s. These speci al i zed ser vi ces
i ncl ude:
Regi onal pr ostheti c cl i ni c
Thi s cl i ni c i s avai l abl e for the eval uati on and
tr eatment of amputee veter ans.
Speci al i zed wheel chai r and
custom seati ng
Thi s cl i ni c pr escr i bes and devel ops custom
wheel chai r s and el ectr i cal l y power ed mobi l i ty
ai ds.
Regi onal or thoti c and custom
footwear cl i ni c
Thi s cl i ni c eval uates pati ents and pr escr i bes
custom shoes and or thoses for l ower- extr emi ty
condi ti ons.
Hom e i m pr ovem ent and
str uctur al al ter ati ons
These gr ants to el i gi bl e veter ans ar e i ntended to
ensur e the conti nuati on of tr eatment or to
pr ovi de access to the home or essenti al l avator y
and sani tar y faci l i ti es.
Hom e oxygen ther apy
The PTC i s r esponsi bl e for i ssui ng i n- home
r espi r ator y and oxygen equi pment and suppl i es
thr ough an accr edi ted contr actor. Pr escr i pti on
and pr escr i pti on changes must be coor di nated
wi th the l ocal VA Medi cal Center s pul monar y
and cr i ti cal car e staffs.
Hom e heal th car e equi pm ent
An accr edi ted contr actor pr ovi des equi pment for
home car e. The contr actor pr ovi des del i ver y, set
up, and pati ent/ car egi ver educati on.
To contact the VA for a si te l ocati on i n your ar ea
go to the Web si te: www.va.gov/ about_ VA
About the Author :
David Whatley isa retired director of the
Houston VAMedical Center, oneof themost
complex VAmedical centersin thecountry
withover 2,800employees. Caringfor more
than 50,000southeast Texasveterans, the
Houston VAMedical Center alsoservesasa
regional and national referral center for
servicesincludingcardiacsurgery, radiation
therapyand spinal cord injurycare.
80 FirstStep
I
A MAN OF
HONOR
Onemans refusal to giveup
and let his dreams bestolen
by Rick Bowers
I ts not a si n to get knocked down. I ts a si n to
stay down.
These wor ds defi ne the l i fe of Navy di ver Car l
Br ashear, whose l i fe i s the subj ect of the Fox 2000
Pi ctur es movi e, Men of Honor.
Despi te star ti ng out i n pover ty, a l ack of
educati on, bei ng bl ack i n a whi te wor l d, and an
acci dent that l eft hi m an amputee, Br ashear r ose
to become the Navys fi r st bl ack master di ver the
hi ghest posi ti on possi bl e for a Navy di ver.
When he began his Navy career at age 17 in 1948,
Brashear, like most blacks, was sent to the steward
branch where he cooked and ser ved white officers
a long way from what he had dreamed of before
leaving his happy Kentucky home for the Navy.
Br ashear mi ght have r emai ned ther e for the
dur ati on of hi s mi l i tar y car eer i f he hadnt
stubbor nl y set hi s si ghts on becomi ng a di ver a
seemi ngl y i mpossi bl e goal for a bl ack man at the
ti me.
When he wrote letters requesting admittance to
diving school, he was either told that the letters were
lost or that the Navy didnt have black divers. But he
didnt give up. After persistently writing more than
100 letters, he was finally accepted in 1954. It was
clear that he was not wanted. The only black man
in the program, he found notes on his bunk, saying,
Were going to drown you today, nigger!
Though he l aughs about i t today, i n 1954 i t was
unwi se to i gnor e such thr eats, and Br ashear was
about to qui t unti l a staff member at the school
tal ked hi m out of i t. Show them
your e a better man than they
ar e, the man advi sed.
Endur i ng thr eats and
di scr i mi nati on, Br ashear
str uggl ed on to i ntegr ate the
Navy di vi ng school and open
door s of oppor tuni ti es for bl acks
i n the futur e.
Though he bel i eved he was a
natur al - bor n di ver, di vi ng school
was a di ffer ent matter for the
young man who had dr opped out
of school after the ei ghth gr ade to
hel p hi s father on the far m. After
ear ni ng hi s hi gh school equi va-
l ency di pl oma i n 1960 when he
was 29, he fai l ed di vi ng school
and was devastated. Thi s ti me, however, he di dnt
even consi der gi vi ng up. I t j ust gave me mor e
ambi ti on and deter mi nati on to go out i n the fl eet
and study the r equi r ements to pass, he says.
After a l ot of har d wor k, he gr aduated as a fi r st-
cl ass deep- sea sal vage di ver i n 1964 a decade
after he star ted i n the pr ogr am.
For the next few year s, he r ecover ed numer ous
i tems fr om the ocean, i ncl udi ng cr ashed pl anes,
sunken shi ps, and ol d Wor l d War I I ammuni ti on.
Ever y so often, we woul d fi nd a tor pedo that
wasnt detonated, and then we woul d have to
detonate i t, Br ashear says. I t was danger ous
wor k, but Br ashear was l i vi ng hi s dr eams.
Then, i n 1966, whi l e hel pi ng to r ecover a
nucl ear weapon that had fal l en i nto the Medi ter-
r anean Sea after a pl ane cr ash, Br ashear was
knocked down agai n.
After the cr ew br ought the nucl ear devi ce to the
sur face, Br ashear saw a l i ne br eak. Though he
was abl e to move qui ckl y enough to knock
another sai l or out of the way, he di dnt see the pi pe
that was hur l ed acr oss the boat and str uck hi s l eg
wi th tr emendous for ce. They sai d I was way up i n
the ai r j ust tur ni ng fl i ps, Br ashear says. After he
l anded, he j umped up and tr i ed to r un. Thats
when I knew how bad my l eg was, he r ecal l s. I t
was hangi ng by tendons.
Brashear later went into shock and was almost
pronounced dead, but after checking him one last
time, the doctor found a ver y, ver y faint heartbeat.
A sur geon wanted to tr y to fi x Br ashear s l eg but
sai d i t woul d take thr ee or four year s, Br ashear
expl ai ns. I sai d, Go ahead and amputate. I
U.S. Navy SalvageSchool Class#56
trainingpicture, Bayonne, N.J., 1954. (Carl
Brashear isin theback row, second from
right).
PhotobyLinda D. Kozaryn, American ForcesPressService
Photocourtesyof theFontana Family
FirstStep 81
cant stay her e thr ee year s. I ve got to go back
to di vi ng. They j ust l aughed. The fool s cr azy! He
doesnt have the chance of a snowbal l i n hel l of
stayi ng i n the Navy. And a di ver ? No way!
I mpossi bl e!
Thi s knockdown i n Br ashear s l i fe the
amputati on of hi s l eft l eg - thr eatened to end hi s
car eer and put a stop to hi s dr eams. The Navy
pl anned hi s r eti r ement, but he had other i deas. I
had set my goal to be a master di ver. When I l ost
my l eg, I was a fi r st- cl ass di ver. I had set my goal
to be a master chi ef petty offi cer. When I l ost my
l eg, I was j ust a chi ef petty offi cer. I had to r each
my goal s. I wanted to be the fi r st bl ack master
di ver i n the Uni ted States Navy.
Di sobeyi ng hospi tal and Navy r ul es, he began
di vi ng and taki ng pi ctur es to pr ove that he was
sti l l abl e to do hi s j ob. Wi th thi s evi dence, he was
offi ci al l y accepted i nto di vi ng school . Because he
was r equi r ed to wal k 12 steps i n a 290- pound
di vi ng sui t i n fr ont of a Navy cour t to be r estor ed
to acti ve duty, he needed to exer ci se to str engthen
hi s r emai ni ng l eg and r esi dual l i mb. Someti mes
I woul d come back fr om a r un, and my ar ti fi ci al
l eg woul d have a puddl e of bl ood fr om my
stump, Br ashear says. I woul dnt go to si ck bay.
I n that year, i f I had gone to si ck bay, they woul d
have wr i tten me up. I d go somewher e and
hi de and soak my l eg i n a bucket of hot water with
salt in it an old remedy. Then Id get up in the
morning and run.
After successful l y compl eti ng hi s tr ai ni ng and
pr ovi ng hi msel f befor e a Navy cour t i n 1968,
Br ashear became the fi r st amputee i n the hi stor y
of the Navy to be r estor ed to hi s posi ti on as a di ver
and r etur ned to ful l acti ve duty. Two year s l ater, he
became the Navys fi r st master di ver who was
ei ther bl ack or an amputee.
My father was the onl y r ol e model I ve ever
had, and he had a can- do spi r i t and a good
posi ti ve atti tude, and thats what kept me goi ng,
Br ashear says. And, of cour se, the tr ust i n the
good Lor d.
Men of Honordr amati cal l y por tr ays the
obstacl es Br ashear over came to r each the
pi nnacl e of success. I ts ver y, ver y cl ose to my
l i fe, the 69- year- ol d Br ashear says, al though he
r eadi l y admi ts that some ar ti sti c l i cense was taken.
Thi s i snt a connect- the- dots bi ogr aphy,
scr eenwr i ter Scott Mar shal l Smi th says. My goal
was to be true to his spirit, not his shirt size.
That, he accompl i shes, accor di ng to Br ashear,
though the excel l ent movi e and the gr eat acti ng by
Cuba Goodi ng Jr. as Br ashear thr eaten to skew the
l i nes between the man and the myth.
Br ashear deni es that he was a her o, but hi s
tenaci ty and i ndomi tabl e spi r i t i n the face of
adver si ty bel i e hi s humi l i ty.
Today, Br ashear who r eti r ed fr om the Navy i n
1979 as a master chi ef petty offi cer tr avel s
ar ound the countr y pr omoti ng the movi e and
speaki ng at school s and uni ver si ti es. Hes come a
l ong way for a man who enter ed the Navy i n 1948
wi th onl y an ei ghth- gr ade educati on. But, then,
for Br ashear, i ts never been about wher e he
star ted, but r ather wher e he fi ni shed. And he
fi ni shed at the top. I f you dr eam bi g and wor k
towar ds those dr eams wi th al l your mi ght, youl l
be successful , he says.
Someof thequotesin thisarticlearefromthe
U.S. Naval Institutesoral history, The
Reminiscencesof Master Chief Boatswains
MateCarl M. Brashear. Heisoneof only seven
enlisted peoplewhoseoral historieshavebeen
recorded by theInstitute a great honor for a
Navy man. Acopy of theentirehistory can be
obtained fromtheInstitutesWebsiteat
www.usni.org/hrp/oralhist.html
LANDMINE SURVIVORS
NETWORK
Roughly ever y 22
minutes someone is killed
or maimed by a
landmine. That amounts
to more than 20,000 men,
women and children
each year injured
through no fault of their own. The number of
victims has been portrayed in terms of
shocking ratios, i.e., one in ever y 230
Cambodi ans is an amputee from a landmine
injur y, one in ever y 330 Angolans, etc. In
truth, no one knows the exact numbers. Most
mine victims die without anyone document-
ing the tragedy.
Today, ther e ar e hundreds of thousands of
landmine sur vivors worldwide, including
thousands of children, with no access to
proper and affordable medical care and
rehabilitation. Moreover, the number of
victims is on the rise with assistance programs
unable to keep up with the demand.
Created by landmine sur vivors for landmine
survivors, Landmine Sur vivors Network ( LSN)
works directly with those whose lives have been
devastated by these cheap instruments of
destruction. LSN helps landmine survivors find
the assistance they need so that they can lead
fuller, more productive lives.
The LSN does more than just help
sur vivors. It is also a fierce advocate for the
immediate removal of these barbaric tools of
mutilation and horror. Today, LSN provides a
strong world voice for those who never before
had a voice, tenaciously petitioning govern-
ments and the public alike to stop the use of
landmines.
The LSN works to help mine victims and
their families recover through an integrated
program of peer counseling, sports, and social
and economic integration into their commu-
nities.
For moreinformation on theLSN, write
1420K Street, NW, #650, Washington, D.C.
20005. Call 202/464-0007or visit theLSN
Website: www.landminesurvivors.org
TheNavysdivingcommunity presented
actor Cuba GoodingJr. (left) witha framed
Navy divingcertificateand named himan
honorary diver. Master Chief Petty Officer
John Schnoering(right) presented the
certificate.
PhotobyStaff Sgt. Scott Ash, USAF
82 FirstStep
A
WHO
CARES FOR
CAREGIVERS?
by Nancy Carroll
Aseachday goesby dealingwiththe
disease, I reachdown intomy bagof tricks
and find themagictoget himthrough
another day. However, when it comesto
dealingwithme, my emotions, my timeoff,
therearenomagictricks, just fortitudetoget
another day over with.
AFamily Caregiver
I t was 1974 when doctor s di agnosed Suzanne
Mi ntzs husband, Steven, wi th mul ti pl e scl er osi s,
a chr oni c, often di sabl i ng di sease of the centr al
ner vous system. We wer e devastated, Suzanne
r ecal l s. Steven was onl y 31. We had been
mar r i ed seven year s and had a 5- year- ol d
daughter. Today, he i s 57, i n a wheel chai r, and
needs hel p i n vi r tual l y ever y acti vi ty of dai l y
l i vi ng.
Though year s l ater i n 1993 Suzanne woul d
found the Nati onal Fami l y Car egi ver s Associ a-
ti on ( NFCA) - a nonpr ofi t member shi p
or gani zati on dedi cated to i mpr ovi ng the qual i ty
of l i fe of Amer i cas fami l y car egi ver s - i n 1974
Suzanne admi ts that nei ther she nor Steven
knew how to cope wi th the physi cal or emoti onal
i mpact of hi s i l l ness.
Back then we di dnt know wher e to tur n.
Steve may have had the cl i ni cal di agnosi s, but I
was j ust as i mpacted by the di sease. I know now
that i l l ness and di sabi l i ty i s a fami l y affai r.
Today, we dont say Steven has MS. We say we
have MS.
Steven and Suzanne r eacted to thei r pr i vate
pai n and gr i ef i n ver y di ffer ent ways, whi ch
cr eated a bar r i er between them. Fr equent bouts
wi th depr essi on, fr ustr ati on, anger, and poor
communi cati ons took i ts tol l on the
mar r i age. They separ ated twi ce,
r econci l i ng both ti mes, al l the
whi l e tr yi ng to fi gur e out
how to deal wi th the
debi l i tati ng di sease
that had changed
the cour se of
thei r l i ves.
Copi ng wi th anger
Expr essi ng your feel i ngs i s cr i ti cal to
mai ntai n mental and physi cal wel l - bei ng,
Suzanne admi ts; however, i ts i mpor tant to
tr ansl ate your anger i nto posi ti ve acti on. I kept
my anger bottl ed up and eventual l y i t spi l l ed
over i nto maj or depr essi on. I wasnt angr y at
my husband; I was angr y at hi s i l l ness, at our
ci r cumstances.
Thr ough r egul ar exer ci se and wr i ti ng about
her feel i ngs i n a j our nal , Suzanne l ear ned to
channel her anger constr ucti vel y. Ranti ng and
r avi ng wi l l get your feel i ngs out but the i dea i s to
vent al l that ener gy i nto somethi ng posi ti ve,
she str esses.
Ci ti ng an exampl e, Suzanne r efer r ed to a
fr i end i n Washi ngton State whose wi fe has Pi cks
di sease, a r ar e for m of pr eseni l e dementi a that
occur s mostl y i n women ages 40- 60 and
i nvol ves pr ogr essi ve, i r r ever si bl e l oss of memor y.
He was so fr ustr ated because ther e i s no
known cur e, and because i ts such a r ar e
di sease, ther es not much r esear ch goi ng on,
Suzanne expl ai ns. So to vent hi s anger and
fr ustr ati on, hes become an acti vi st for NFCA
and i s channel i ng hi s ener gy to do somethi ng
posi ti ve for car egi ver s.
Posi ti ve expr essi on
How do you tell your loved one how you feel
without being hurtful? Suzanne suggests choosing
your words carefully so you can get the anger out
without verbally attacking the person.
Example: Im not angr y at you, Im angr y at your
illness. I am so frustrated and tired and angr y that I
dont have enough time for myself and I am so
angr y at your disease. I want it to go away and I
know it wont and its affecting you and its affecting
me, too. I feel so upset and lonely.
I denti fy sour ces of your fr ustr ati on other than
the per son, i .e., I m fr ustr ated because the
home car e per son di dnt show up; I m fr ustr ated
because someone par ked i n the handi capped
par ki ng spot at the gr ocer y stor e, and I m
fr ustr ated because thi s i l l ness has caused i t to
take an hour to get you dr essed i n the mor ni ng.
I know i ts not your faul t and I know i ts caused
by the di sease, so I m angr y at the di sease.
Getti ng hel p
How do you get a br eak? Per haps you have
si bl i ngs or other fami l y member s who l i ve
Suzanneand
Steven Mintz
FirstStep 83
near by and sti l l most of the bur den fal l s on you.
How do you get your fami l y to shar e i n the
r esponsi bi l i ti es of car egi vi ng?
Suzanne r ecommends cal l i ng a fami l y
meeti ng wi th a thi r d par ty pr esent, per haps a
ther api st, a soci al wor ker or a mi ni ster to ser ve
as an ar bi tr ator. The car egi ver shoul d then
br i ng fami l y member s up to date on the l oved
ones condi ti on and shar e hi s or her concer ns
and fr ustr ati ons. Ever yone pr esent shoul d have
an equal oppor tuni ty to expr ess thoughts and
feel i ngs about the si tuati on.
Opti mal l y, the meeti ng wi l l yi el d a better
under standi ng among fami l y member s of what
the pr i mar y car egi ver i s goi ng thr ough and the
i mpor tance of l endi ng thei r suppor t i n the
car egi vi ng pr ocess. Whether fami l y member s
offer to contr i bute fi nanci al l y, to conduct
r esear ch for adapti ve pr oducts and ser vi ces, or
to be physi cal l y pr esent to gi ve the pr i mar y
car egi ver a r espi te br eak, al l contr i buti ons and
offer s shoul d be expl or ed.
The i dea of the fami l y meeti ng i s to get
ever ythi ng out on the tabl e, to under stand wher e
each per son i s comi ng fr om, and to under scor e
the fact that the pr i mar y car egi ver cannot
conti nue to do ever ythi ng al one, that they need
hel p fr om the r est of the fami l y, Suzanne says.
Of cour se, i f fami l y member s sti l l dont
r espond, you cant for ce them, Suzanne adds.
Our daughter r ecentl y moved near us so she
hel ps out. Someti mes I cal l on my fr i ends and
nei ghbor s for hel p, she says. I dont need
conti nuous hel p but I know that i f Steven fal l s
out of hi s wheel chai r, they woul d come over i n a
mi nute. I ts i mpor tant to have that ki nd of
suppor t system and assi stance.
Com bati ng i sol ati on
I sol ati on cr eeps up on you, Suzanne says.
Someti mes your e not even consci ous of i t
happeni ng. Other ti mes i ts a r ude awakeni ng
when peopl e j ust stop bei ng your fr i end.
But r eachi ng out to other s can be di ffi cul t,
especi al l y when youve been i sol ated for a whi l e
and ar e out of sync wi th the outsi de wor l d. I t
r equi r es an acti ve push a fi r m r esol ve that
your e goi ng to fi nd fr i ends that you can r el y on,
whether they ar e phone pal s, femal e fr i ends,
nei ghbor s, or peopl e at chur ch. I ts r eal l y
i mpor tant to mai ntai n some ki nd of networ k
because not onl y can fr i ends keep you fr om
bei ng i sol ated, they can al so be ther e for you
when you need suppor t and hel p, Suzanne says.
Sel f-advocacy for car egi ver s
Suzanne confesses that she tal ks the tal k
ver y wel l - but doesnt al ways fol l ow her own
advi ce. When I m star ti ng to feel over whel med,
and l i fe i s topsy- tur vy, I r emember the four r ul es
of sel f- advocacy and tr y to sl ow down and
pr i or i ti ze my own heal th. Peopl e need to r eal i ze
that sel f- pr eser vati on i s not sel fi sh.
The four r ul es of sel f-advocacy
1. Take char ge of your l i fe.
2. Love, honor and val ue your sel f.
3. Seek and at ti mes demand hel p.
4. Stand up and be counted.
Looki ng to the futur e, Suzanne says, Wer e al l
goi ng to be i n thi s boat eventual l y so we need to
hel p each other. I thi nk car egi ver s shoul d be
seen as par t of the heal thcar e team. We need
tr ai ni ng and suppor t, heal thcar e benefi ts,
changes i n Medi car e, mor e communi ty- based
suppor t, vol unteer gr oups and hel p networ ks.
I thi nk Car e Advi sor s shoul d be avai l abl e to
hel p peopl e fi gur e out the opti ons and r esour ces
they need dur i ng di ffi cul t ti mes, she conti nues.
When your e goi ng thr ough cr i si s and
tr ansi ti on i ts so har d to go i t on your own.
Havi ng a Car e Advi sor to consul t wi th car egi vi ng
fami l i es woul d be an enor mous benefi t.
When i t s ti m e for a nur si ng hom e
Thi s i s defi ni tel y one of the toughest
deci si ons youl l ever have to make, Suzanne
says, addi ng that she r ecentl y faced thi s wi th her
86- year- ol d father. My mom, 82, coul dnt take
car e of hi m any l onger, and ther es no poi nt i n
havi ng two ver y i l l peopl e. The car egi ver i s the
stewar d of thi s per son and we have a mor al
r esponsi bi l i ty to moni tor thei r heal th as wel l .
And, i ts i mpor tant to r emember that j ust
because a per son i s i n a nur si ng home doesnt
mean that your e not taki ng car e of them.
Suppor t for car egi ver s
Peopl e may say they ar e i nter ested i n car egi ver
suppor t gr oups, but stati sti cs show that not
many peopl e uti l i ze them, Suzanne notes. Some
peopl e ar e r el uctant to shar e thei r feel i ngs, some
consi der attendi ng suppor t gr oup meeti ngs
i nconveni ent, other s enj oy chat r ooms on the
I nter net; ever yone has to fi nd hi s or her own
medi um.
Member shi p i n the NFCA i s one sol uti on.
Founded i n 1993, the or gani zati on has over 7,000
member s. Member shi p for fami l y car egi ver s i s
fr ee. You wi l l r ecei ve i nfor mati on about practical
aspects of caregiving as well as emotional ones, all
written from a caregiver s perspective.
Ther es no doubt that Steven i nspi r ed me to
for m the NFCA, Suzanne says. He has the
sl ow, pr ogr essi ve type of MS; i n 25 year s he has
had no r emi ssi ons. Sti l l , he wor ks as an
economi st for the U.S. Depar tment of Ener gy.
He dr i ves to the offi ce thr ee days a week i n a
speci al van that he can dr i ve i n hi s wheel chai r.
Two days a week he wor ks at home, so he puts i n
a ful l week. Hes a str ong per son.
For moreinformation on NFCAmember-
ship, call 1-800/896-3650; writeNFCA, 10400
Connecticut Avenue, Kensington, MD 20895,
or visit theNFCAWebsite: www.nfcacares.org
Other r esour ces:
I nt er fai t h Car egi ver s Al l i ance
1- 816/ 931- 5442
They pr ovi de r espi te suppor t thr ough l ocal
congr egati ons and suppl y i nfor mati on about
vol unteer ser vi ces.
East er Seal Soci et y 1- 800/ 221- 6827
They offer r espi te ser vi ces ( var i es fr om l ocati on
to l ocati on) , gi ve r efer r al s to over 400 l ocati ons
nati onwi de, suppor t di r ect r ehabi l i tati on ser vi ces
to di sabl ed peopl e, and pr ovi de fami l y suppor t
gr oups.
Fr i ends Heal t h Connect i on
1- 800/ 483- 7436
They match peopl e wi th heal th pr obl ems wi th
other s i n si mi l ar si tuati ons, br i ng together
fami l y/ fr i ends/ car egi ver s of peopl e wi th heal th
pr obl ems wi th other s i n si mi l ar si tuati ons vi a the
Fami l y Networ k, and publ i sh a newsl etter.
Fami l yCar eAmerica
1004 Nor th Thompson St., Sui te 205
Ri chmond, VA 23230
Web si te: www.fami l ycar eamer i ca.com
Phone: 804/ 342- 2200 Fax: 804/ 342- 2338
E- mai l : i nfo@ fami l ycar eamer i ca.com
84 FirstStep
I
PROSTHETIC
COSTS
by Jon B. Holmes, PT, CP
pr osthesi s once, has speci fi c excl usi ons, or wi l l
onl y pay a cer tai n amount. Wi thout checki ng
the speci fi cs, i t i s easy to make poor choi ces.
How your pol i cy r eads can hel p deter mi ne what
i s the best pr osthesi s for you.
I f you do not have i nsur ance, i t i s j ust as
i mpor tant to thi nk about how you wi l l pay for
your pr osthesi s. Ther e ar e state agenci es that
can be hel pful , but l ots of paper wor k i s i nvol ved,
so get star ted ear l y. Local char i ti es ar e often a
sour ce of fundi ng, but ther e i s usual l y no
or gani zed pr ocess to obtai n thi s money. I t wi l l
r equi r e a l ot of wor k to i denti f y these gr oups,
make the appr opr i ate contacts, and get the
assi stance. I n addi ti on, some pr ostheti c fi r ms
wi l l be wi l l i ng to wor k out payment ar r ange-
ments for l i mbs. The Bar r Foundati on i n Boca
Raton, Fl or i da, hel ps peopl e pay for pr ostheses
when they ar e unabl e to get fundi ng any other
way ( cal l 561/ 394- 6514) .
Star t by consi der i ng your needs fr om your
body and wor k fr om ther e. The most i mpor tant
par t of the pr osthesi s i s the motor ( the
amputee) . Spend your ti me and ener gy getti ng
your body i n the best condi ti on possi bl e befor e
movi ng on. To use a pr osthesi s effecti vel y, your
body must be wel l - heal ed, have a good r ange of
moti on, be str ong, and have good bal ance.
I nvesti ng i n a pr osthesi s befor e you ar e
physi cal l y and mental l y r eady i s not the most
economi cal way. The pr osthesi s i s a tool to hel p
you wi th your r ehabi l i tati on not a cur e- al l .
Engage a good physi cal ther api st to hel p you
wi th thi s.
When deter mi ni ng your pr ostheti c needs you
may have to choose between a tempor ar y
I t al ways amazes me when new pati ents come
i nto my offi ce and say, I want the best l eg ther e
i s and I do not car e how much i t costs. They
seem to have the i dea that the most expensi ve
pr osthesi s wi l l be the best one for them. I guess
that i s some sor t of Amer i can l ogi c. I n thi s age
of so many pr ostheti c choi ces, i t i s har d to fi gur e
out what i s best for each i ndi vi dual - but i t
cer tai nl y i s not necessar i l y the most expensi ve
pr osthesi s.
I have seen i nvoi ces i n our companys
ar chi ves for compl ete bel ow- knee pr ostheses for
$150. Ther e wer e no pr ostheti c choi ces gi ven to
the consumer s; they pai d cash for thei r l eg and
woul d often tel l me al l the
wonder ful thi ngs they wer e
abl e to do wi th i t. Thi s i s
no l onger the case. Pati ents
now come i nto our offi ce
wi th al l thi s l i ter atur e they
have pr i nted fr om the
I nter net and want a
pr osthesi s j ust l i ke the one
they saw on tel evi si on.
Then they pr esent us wi th
thei r i nsur ance car d, tel l i ng
us i t wi l l pay for whatever
they want. Thi s al so i s not
usual l y the case. So how do
we fi gur e out what i s best for each i ndi vi dual ?
The cost of a new pr osthesi s can be a
stagger i ng amount and i s often a factor i n the
ki nd of pr osthesi s the consumer wi l l get. Your
doctor or sur geon, a compr ehensi ve amputee
cl i ni c, your ther api st, your soci al wor ker, and a
cer ti fi ed pr ostheti st ar e best sui ted to hel p you
wi th the choi ce and to show you how to
maxi mi ze your i nvestment and r eal i ze your
ul ti mate potenti al wi th your new pr osthesi s.
At thi s poi nt, you shoul d conduct a pr el i mi nar y
check of how you ar e goi ng to pay for your
pr osthesi s. I f you have i nsur ance, ver i fy that
ther e i s pr ostheti c cover age and what the
cover age i s. I t i s i mpor tant to have a pr ofes-
si onal hel p wi th thi s. A r ehabi l i tati on nur se, a
soci al wor ker, or an i nsur ance exper t at a
pr ostheti c company woul d be good choi ces.
I nsur ance wor di ng can be confusi ng and i t i s
easy to make assumpti ons based on gener al i ti es
i n your pol i cy. Of ten the i nsur ance company has
pr ostheti c cover age, but wi l l onl y pay for a
FirstStep 85
pr osthesi s and a defi ni ti ve one. Knowi ng how
much your i nsur ance wi l l cover can be hel pful
i n thi s si tuati on. I f your i nsur ance i s goi ng to
pay for onl y one pr osthesi s, thi s mi ght be a
factor i n maki ng your deci si on. I f you sti l l
expect many body changes, a tempor ar y
pr osthesi s may be i n or der. I t wi l l al l ow you to
get mor e pr epar ed for the defi ni ti ve pr osthesi s
and even hel p you fi gur e out whi ch components
mi ght be best. A defi ni ti ve pr osthesi s, anti ci pat-
i ng socket changes, can be a good choi ce for
someone who i s r eady to be fi tted. Then, when
you get your tr ai ni ng wi th your new pr osthesi s,
you ar e l ear ni ng to use the components best
sui ted for your needs. Thi s can save goi ng back
l ater for mor e tr ai ni ng when you move on fr om
a tempor ar y to a defi ni ti ve pr osthesi s. Once
agai n, whi ch i s mor e cost- effecti ve i s an
i ndi vi dual deci si on. The amputee cl i ni c team
wi l l be the best peopl e to assi st you wi th thi s
di ffi cul t choi ce.
The i nter face between the body and the
pr osthesi s, known as the socket, shoul d be the
next thi ng to consi der. Thi s i nti mate par t of the
pr osthesi s wi l l need to be customi zed for your
i ndi vi dual needs. A wel l - fi tti ng socket wi l l
pr ovi de comfor t, suspensi on, and contr ol of the
pr osthesi s. Speci al needs because of scar s,
uni que body pr opor ti ons, muscl e functi on, and
other physi cal char acter i sti cs must al l be
consi der ed when deci di ng whi ch type of socket
i s best for you. Choi ces wi l l not be the same for
ever yone. The cer ti fi ed pr ostheti st wi l l be abl e to
gi ve you di r ecti on. Rar el y wi l l i nsur ance
compani es di ctate your socket choi ces, as they
al so r ecogni ze that wi thout a wel l - fi tti ng socket
i nter face the pr osthesi s wi l l not be used to i ts
ful l est potenti al .
Usi ng the HCFA ( Medi car e) cl assi fi cati on
system i s a good way to begi n consi der i ng your
choi ces for knees and feet. Bei ng pl aced i nto a
speci fi c K- l evel cl assi fi cati on wi l l begi n
nar r owi ng your opti ons ( See K- Level Cl assi fi ca-
ti ons on page 86) . Cer tai n components ar e
appr opr i ate for each i ndi vi dual l evel ; however,
these gui del i nes wi l l onl y be gener al i ti es and wi l l
not hel p you sel ect speci fi c br ands. Thi s wi l l be
your most di ffi cul t choi ce. Hundr eds of di ffer ent
feet and knees ar e on the mar ket, and adver ti s-
i ng wi l l l ead you to bel i eve each one i s the best.
You must r el y on pr ofessi onal s and your peer s
for advi ce, r emember i ng that even these peopl e
wi l l have thei r own bi ases. Often af ter you have
made your gener al choi ces, var i ous components
can be tr i ed to see whi ch one i s best for you.
Many manufactur er s wi l l al l ow a fr ee tr i al
per i od al l owi ng amputees to compar e
components befor e deci di ng whi ch ones they
pr efer. The cor r ect knee and foot wi l l al l ow
gr eater pr ostheti c effi ci ency for each i ndi vi dual .
Speci al ty devi ces l i ke shock absor ber s, r otator s,
tor que absor ber s, swi mmi ng ankl es, qui ck-
change devi ces, and numer ous other compo-
nents can make the pr osthesi s functi on better.
Though these devi ces may not be cover ed by
i nsur ance, they coul d be wor th the addi ti onal
expense. These devi ces have thei r dr awbacks,
too, si nce they take up a l ot of r oom, add wei ght,
r equi r e mor e mai ntenance, and i ncr ease costs.
After an exact pr escr i pti on has been made for
a new pr osthesi s, i nsur ance pr eappr oval must be
obtai ned. I t i s not enough that you ver i fi ed your
cover age i n the begi nni ng. The i nsur ance
company must now author i ze the new pr osthesi s
wi th ever y detai l accounted for. Onl y the
pr ostheti c fi r m wher e the pr osthesi s i s made
shoul d do thi s. Be pr epar ed to make appeal s
and j usti fy the exact components sel ected. Often
the i nsur ance company wi l l deny speci fi c
components as not enhanci ng the fi t or
functi on of the pr osthesi s. Be pr epar ed to get
l etter s of medi cal necessi ty fr om your doctor and
make phone cal l s to the appr opr i ate peopl e to
get what you need. Payment i s the pati ents
r esponsi bi l i ty and you wi l l have to wor k to
maxi mi ze your benefi ts.
Obtai ni ng the best possi bl e pr osthesi s
( especi al l y a fi r st one) i s not a si mpl e matter. I t
wi l l r equi r e l ots of ener gy. Thi s wi l l i ncl ude
putti ng together a good suppor t team, getti ng
your mi nd and body pr epar ed, and obtai ni ng
fundi ng. The amputee i s for ced to deal wi th
these chal l enges. But i f thi s pr ocess i s under-
taken wi th car e and under standi ng, you wi l l be
an i nfor med pr ostheti c consumer who i s pl eased
wi th your pr ostheti c choi ces.
For moreinformation on fundingsources,
call theAmputeeCoalition of America (ACA)
toll-freeat 1-888/AMP-KNOW(267-5669).
About the Author :
Jon B. HolmesPT, CP,
hasworked at
Muilenburg
Prostheticsand
Orthoticsfor nearly
17years. Heis
currently theclinical
director at
Muilenburgs, adjunct faculty at Texas
WomansUniversity, and associateprofessor
at Baylor Collegeof Medicinein Houston,
Texas.
86 FirstStep
S
FINANCIAL
ASSISTANCE
FOR
PROSTHESES
AND OTHER
ASSISTIVE
DEVICES
compiled by Mary JoWalker,
NLLICinformation specialist
Some of the questi ons most fr equentl y asked by
amputees r el ate to the pur chase of pr ostheti c
devi ces, wheel chai r s, r amps, and other adapti ve
equi pment. Gi ven the exor bi tant costs of many of
these devi ces, most amputees wi l l r equi r e some
fi nanci al assi stance to obtai n the equi pment
needed to mai ntai n thei r i ndependence.
Starting the process
Befor e attempti ng to fi nd a fundi ng sour ce
amputees shoul d deter mi ne the speci fi c assi sti ve
devi ce they need and wher e to pur chase i t. For
new amputees or those who need a new pr osthe-
si s, consul ti ng wi th medi cal and r ehabi l i tati on
pr ofessi onal s i s an essenti al fi r st step. Good r ecor d
keepi ng i s i mpor tant so that you have accur ate
i nfor mati on on hand when i t i s r equested.
Some funding sources require applicants to
prepare a justification statement before funds are
appropriated. They may require that applicants
demonstrate that the ser vice or technology will
enhance their ability to prepare for, get, or keep a
job, or that it will enhance their independence.
Success in securing funding frequently depends on
the applicants ability to address the specific
agencys unique requirements.
MEDICARE
I n the U.S., Medi car e i s the l ar gest fi nanci al
r esour ce for pr ostheti c car e. I n addi ti on to
pr ostheses, Medi car e commonl y cover s wheel -
chai r s, wal ker s, and cr utches. Ramps, adapti ve
dr i vi ng devi ces, and other nonmedi cal devi ces ar e
not cover ed.
Obtaining Social Secur ity Disability
( SSD) Medicar e cover age
For those under age 65, the fi r st maj or obstacl e to
obtai ni ng Medi car e cover age for assi sti ve devi ces
may be getti ng appr oval for SSD benefi ts.
Appr oxi matel y 70 to 75 per cent of SSD appl i cants
ar e deni ed i ni ti al l y. Per si stence, detai l ed docu-
mentati on of your medi cal hi stor y, and the hel p of
an attor ney ar e often the keys to getti ng appr oval .
L-Codes and Level II Modifiers
The L- Code system i s the cur r ent method of
bi l l i ng Medi car e for or thoti c and pr ostheti c
ser vi ces. Hi stor i cal l y, Medi car e had no qual i fyi ng
standar ds that r el ated whi ch components and
pr ocedur es wer e appr opr i ate for each amputati on
l evel . The r ecent i ntr oducti on of Level I I or
K- Modi fi er s hel ped or gani ze components and
amputees access to them based on the pati ents
r ehabi l i tati on potenti al as deter mi ned by the
pr ostheti st and or der i ng physi ci an. Cr i ter i a
consi der ed for assessi ng the functi onal l evel
i ncl ude the pati ents past hi stor y and cur r ent
condi ti on i ncl udi ng the status of the r esi dual l i mb,
the natur e of other medi cal pr obl ems, and the
pati ents desi r e to ambul ate.
Cl assi fi cat i on l evel s ar e:
K0 ( Level 0) - Does not have the abi l i ty or
potenti al to ambul ate or tr ansfer safel y wi th or
wi thout assi stance and a pr osthesi s does not
enhance thei r qual i ty of l i fe or mobi l i ty.
K1 ( Level 1) - Has the abi l i ty or potenti al to use
a pr osthesi s for tr ansfer s or ambul ati on on l evel
sur faces at fi xed cadence. Typi cal of the l i mi ted
and unl i mi ted househol d ambul ator.
K2 ( Level 2) - Has the abi l i ty or potenti al for
ambul ati on wi th the abi l i ty to tr aver se l ow- l evel
envi r onmental bar r i er s such as cur bs, stai r s or
uneven sur faces. Typi cal of the l i mi ted communi ty
ambul ator.
K3 ( Level 3) - Has the abi l i ty or potenti al for
ambul ati on wi th var i abl e cadence. Typi cal of the
communi ty ambul ator who has the abi l i ty to
tr aver se most envi r onmental bar r i er s and may
have vocati onal , ther apeuti c, or exer ci se acti vi ty
that demands pr ostheti c use beyond si mpl e
l ocomoti on.
K4 ( Level 4) - Has the abi l i ty or potenti al for
pr ostheti c ambul ati on that exceeds basi c
ambul ati on ski l l s, exhi bi ti ng hi gh i mpact, str ess,
or ener gy l evel s. Typi cal of the pr ostheti c
demands of the chi l d, acti ve adul t, or athl ete.
Because of thei r gr eater r ehabi l i tati on potenti al ,
amputees i n hi gher l evel s ar e gener al l y al l owed
better choi ces of pr ostheti c components, whi l e
pr ostheses ar e deni ed as not medi cal l y necessar y i f
the pati ents potenti al functi onal l evel i s O.
Excepti ons ar e consi der ed i n i ndi vi dual cases i f
addi ti onal documentati on i s i ncl uded that j usti fi es
the medi cal necessi ty.
If your claim is denied
I f your Medi car e cl ai m i s deni ed, i t i s i mpor tant to
under stand why, and to fi nd out what opti ons you
have l eft. Reasons for deni al of cl ai ms for Dur abl e
Medi cal Equi pment and pr ostheti c devi ces usual l y
fal l i nto fi ve categor i es:
FirstStep 87
1. Lack of Medi cal Necessi ty
2. Noncover ed Ser vi ces Medi car e has
excl uded these i tems fr om i ts l i st of cover ed
ser vi ces.
3. I ncompl ete I nfor mati on
4. Dupl i cate Submi ssi on - Claims denied for
this reason should be investigated immediately.
5. Not Separ at el y Payabl e - These cl ai ms
wer e deni ed because the ser vi ce was consi der ed to
be i ncl uded i n another code.
I n some cases, appeal s can be made; i n other s,
they cannot. Your pr i mar y sour ce of assi stance
wi th appeal s and r esubmi ssi on of deni ed cl ai ms
wi l l be your pr ovi der s admi ni str ati ve staff.
I f you have questi ons about your el i gi bi l i ty for
Medi car e or want to appl y for i t, you shoul d
contact the Soci al Secur i ty Admi ni str ati on
( 1- 800/ 772- 1213) .
MEDICAID
Medi cai d i s a j oi ntl y funded cooper ati ve ventur e
between the feder al and state gover nments to
assi st states i n the pr ovi si on of adequate medi cal
car e to el i gi bl e, needy peopl e. Wi thi n br oad
nati onal gui del i nes that the feder al gover nment
pr ovi des, each of the states:
1. Establishes its own eligibility standards
2. Determines the type, amount, duration,
and scope of ser vices
3. Sets the rate of payment for services
4. Administers its own program
Medi cai d el i gi bi l i ty and cover ed ser vi ces var y
consi der abl y fr om state to state, as wel l as wi thi n
each state. Unfor tunatel y, cover age for pr ostheti c
car e i s not mandated; ther efor e, i t r anges fr om
r easonabl y good to nonexi stent.
To be el i gi bl e for feder al funds, states must
pr ovi de Medi cai d cover age for most i ndi vi dual s
who r ecei ve feder al l y assi sted i ncome- mai nte-
nance payments, as wel l as for r el ated gr oups not
r ecei vi ng cash payments. Some exampl es of the
mandator y Medi cai d el i gi bi l i ty gr oups ar e l ow-
i ncome fami l i es wi th chi l dr en, Suppl emental
Secur i ty I ncome ( SSI ) r eci pi ents, and i nfants bor n
to Medi cai d- el i gi bl e pr egnant women.
For peopl e wi th too much i ncome to meet the
mandator y el i gi bi l i ty r equi r ements and/ or those
adopted by thei r state, many states have a
medi cal l y needy pr ogr am. Thi s opti on al l ows
them to spend down to Medi cai d el i gi bi l i ty by
i ncur r i ng medi cal and/ or r emedi al car e expenses
to offset thei r excess i ncome or by payi ng monthl y
pr emi ums to the state equal to the di ffer ence
between fami l y i ncome and the el i gi bi l i ty
standar d.
For i nfor mati on about your states ver si on of
the Medi cai d pr ogr am, contact i ts admi ni ster i ng
agency, usual l y the Depar tment of Heal th and
Human Ser vi ces, or Depar tment of Medi cal
Assi stance. Most of your heal thcar e costs ar e
cover ed i f you have Medi car e and you qual i fy for
Medi cai d. States al so have pr ogr ams that pay
some or al l of Medi car es pr emi ums and may al so
pay Medi car e deducti bl es and coi nsur ance for
cer tai n l ow- i ncome peopl e.
Pr escr i pti on dr ug assi stance pr ogr ams ar e al so
avai l abl e. These pr ogr ams offer di scounts or fr ee
medi cati ons to i ndi vi dual s i n need. For mor e
i nfor mati on on these pr ogr ams, cal l your near est
medi cal assi stance offi ce l i sted i n the tel ephone
book under Medi cai d, Soci al Ser vi ces, Medi cal
Assi stance, Human Ser vi ces or Communi ty
Ser vi ce.
VETERANS ADMINISTRATION
The Veter ans Heal th Admi ni str ati on ( VHA)
pr ovi des a br oad spectr um of r ehabi l i tati ve car e to
i ts benefi ci ar i es, i ncl udi ng a wi de ar r ay of
pr ostheses, mobi l i ty devi ces such as wheel chai r s,
and adapti ve dr i vi ng equi pment. I n addi ti on to
cover age for veter ans, the VA pr ovi des needed
heal thcar e benefi ts, i ncl udi ng pr ostheti cs, medi cal
equi pment, and suppl i es, to cer tai n chi l dr en of
Vi etnam veter ans. Veter ans may al so r ecei ve VA
heal thcar e benefi ts, i ncl udi ng pr ostheti cs and
medi cal equi pment thr ough par ti ci pati on i n the
VAs vocati onal r ehabi l i tati on pr ogr am.
VA heal thcar e enr ol l ment i s a new system
pr ovi di ng access to a compr ehensi ve package of
ser vi ces. To be el i gi bl e for heal thcar e enr ol l ment,
you must have:
Been discharged from active militar y ser vice
under honorable conditions
Ser ved a minimum of two years if discharged
after September 7, 1980 ( prior to this date
there is no time limit)
If a National Guardsman or Reser vist, ser ved
the entire period for which you were called to
active duty other than for training purposes
only
Ar ti fi ci al l i mbs must be pr escr i bed by a
desi gnated physi ci an/ podi atr i st of the VAs
Amputee Cl i ni c Team or the Pr ostheti c Repr esen-
tati ve. Devi ces may then be fabr i cated and fi tted
by VA hospi tal s or cl i ni cs, pr i vate pr ostheti c
faci l i ti es on contr act wi th the VA or, under cer tai n
ci r cumstances, by noncontr act pr ostheti sts. Whi l e
the VA pr efer s that pati ents use ei ther VA faci l i ti es
or pr i vate faci l i ti es under contr act wi th the VA,
veter ans who have pr evi ousl y r ecei ved ar ti fi ci al
l i mbs fr om commer ci al sour ces may conti nue to
r ecei ve ser vi ces fr om thei r noncontr act pr ostheti st,
pr ovi di ng the pr ostheti st wi l l accept the VA
pr efer r ed pr ovi der r ate for the geogr aphi c ar ea.
Veter ans may al so r ecei ve ser vi ces fr om
noncontr act vendor s when a pr escr i bed l i mb or
component i s not avai l abl e thr ough VA or contr act
faci l i ti es.
For mor e i nfor mati on you can vi si t the VHA
Web si te at www.va.gov/ About_ VA/ Or gs/ VHA/
i ndex.htm or cal l the VA Heal th Benefi ts Ser vi ce
Center tol l - fr ee at 1- 877/ 222- VETS.
CHAMPUS/ TRICARE
CHAMPUS ( Ci vi l i an Heal th and Medi cal
Pr ogr ams of the Uni for med Ser vi ces) , now cal l ed
TRI CARE Standar d, has evol ved i nto a key
component of the new TRI CARE heal th benefi ts
pr ogr am of the Depar tment of Defense. Any of the
TRI CARE pr ogr ams ar e avai l abl e to dependents
of acti ve- duty ser vi ce member s and r eti r ees and
thei r fami l i es and sur vi vor s. El i gi bl e fami l y
member s i ncl ude spouses, unmar r i ed chi l dr en
under age 21, unmar r i ed chi l dr en who ar e ful l -
ti me students under age 23, and stepchi l dr en
adopted by the sponsor.
For mor e i nfor mati on r egar di ng any of the
TRI CARE pr ogr ams, contact your TRI CARE
Ser vi ce Center or vi si t the mi l i tar ys TRI CARE
Web si te at www.tr i car e.osd.mi l / or Pal metto
Gover nment Benefi ts Admi ni str ator s TRI CARE
Web si te at www.mytr i car e.com/
VOCATIONAL REHABILITATION
Most states have vocati onal r ehabi l i tati on
pr ogr ams to hel p peopl e wi th l i mb l oss obtai n and
keep empl oyment. These pr ogr ams var y wi del y
fr om state to state as to the el i gi bi l i ty r equi r ements
and ser vi ces pr ovi ded. Some may fund pr ostheti c
car e and other assi sti ve devi ces i f they ar e deemed
necessar y for empl oyment or j ob per for mance.
Assi sti ve devi ces, such as wheel chai r s, l i fts, and
88 FirstStep
adapti ve dr i vi ng equi pment ar e often fur ni shed to
enabl e a per son to get to the j ob si te.
Vi si t www.puebl o.gsa.gov/ cr h/ vocati onal .htm
for contact i nfor mati on and l i nks to your state
vocati onal r ehabi l i tati on agencys Web si te.
STATE TECHNOLOGY
ASSISTANCE PROGRAMS
These pr ogr ams suppor t statewi de, compr ehen-
si ve, technol ogy- r el ated assi stance for i ndi vi dual s
of al l ages wi th di sabi l i ti es. State pr oj ects typi cal l y
pr ovi de assi stance i n choosi ng and acqui r i ng off-
the- shel f, modi fi ed, or customi zed i tems and
equi pment used to i ncr ease, mai ntai n, or i mpr ove
functi onal capabi l i ti es of i ndi vi dual s wi th
di sabi l i ti es.
A few state pr ogr ams pr ovi de di r ect fi nanci al
assi stance to i ndi vi dual s i n need of var i ous types of
adapti ve equi pment, i ncl udi ng pr ostheses. Some
have l oan pr ogr ams. Other s pr ovi de no fundi ng
at al l to i ndi vi dual s. Most do have i nfor mati on
and r efer r al ser vi ces and may be abl e to di r ect you
to l ocal sour ces of fi nanci al assi stance.
The tel ephone number for your states pr ogr am
may be found i n the bl ue pages of your l ocal
di r ector y. A l i sti ng of state assi sti ve technol ogy
pr oj ects, compl ete wi th contact i nfor mati on and
links to Web si tes, may be found on the Rehabi l i ta-
ti on Engi neer i ng and Assi sti ve Technol ogy Soci ety
of Nor th Amer i ca ( RESNA) Web si te at
www.r esna.or g/ tapr oj ect/ at/ statecontacts.html
PRIVATE INSURANCE
Cover age for pr ostheti c car e and dur abl e medi cal
equi pment var i es wi del y fr om one i nsur ance
company to another and may al so di ffer wi th
var i ous pol i ci es offer ed by a gi ven company.
Cover age can r ange fr om al l medi cal l y necessar y
devi ces for l i fe to no cover age at al l . Whi l e i t i s
i mpossi bl e to pr ovi de speci fi c i nfor mati on about
ever y heal th i nsur ance company, ther e ar e some
basi c thi ngs to consi der when sel ecti ng an
i nsur ance pol i cy:
Eligibility requirements
Pre- existing condition clauses
Devices covered ( Get something in writing to
assure that artificial limbs are covered.)
Coverage limits
Limits on number of items per year or per
lifetime
Rate of payment ( Should be at least
comparable to Medicare rates.)
Preferred Provider Network ( Is your current
prosthetist included?)
Must you go through a gatekeeper to obtain care?
Many heal th i nsur ance compani es have Web
si tes thr ough whi ch you may be abl e to obtai n
i nfor mati on about thei r pol i ci es. I n addi ti on, ther e
ar e sever al Web si tes that i nfor m consumer s and
hel p them compar e heal th i nsur ance compani es
and pol i ci es. They i ncl ude: www.i nsur e.com/
heal th/ ; www.i nsweb.com/ ; www.netquote.com/ ,
and www.quotesmi th.com/ # medi cal /
Insurance problems
I f you have pr obl ems getti ng the cover age to
whi ch you ar e enti tl ed fr om your i nsur ance
company, the most val uabl e sour ce of assi stance i s
your state depar tment of i nsur ance. Thi s offi ce i s
l ocated i n the capi tal ci ty of each state and the
tel ephone number shoul d be i n the bl ue pages
of your l ocal di r ector y. I nsur ance commi ssi oner s
can take acti on agai nst i nsur ance compani es,
agents, and br oker s. They ar e empower ed to
conduct i nvesti gati ons, acqui r e r ecor ds of
r el evance to your case, i ssue or der s, hol d hear i ngs,
and suspend and r evoke l i censes. Contact
i nfor mati on may al so be found on i nsur e.coms
state gateway page at www.i nsur e.com/ states/
i ndex.html /
MEDICAL DISCOUNT PROGRAMS
Rel ati vel y new on the heal thcar e scene ar e
medi cal di scount pr ogr ams. These compani es
negoti ate wi th PPO pr ovi der s for thei r member s to
r ecei ve di scounts on medi cal goods and ser vi ces
r angi ng fr om pr escr i pti on dr ugs to offi ce vi si ts to
nur si ng home car e. Whi l e dur abl e medi cal
equi pment i s often i ncl uded i n the benefi ts
packages pr ovi ded i n the pr ogr ams, pr ostheti c
car e i s not usual l y speci fi cal l y menti oned.
The pr ogr ams advantages to the pr ovi der s ar e
i mmedi ate payment, l ess paper wor k, and no r ed
tape i n getti ng appr oval for ser vi ces pr ovi ded.
Advantages to the pati ent ar e di scounted medi cal
fees, no deducti bl es, no pr e- exi sti ng condi ti on
cl auses, unl i mi ted use of ser vi ces, no cl ai m for ms
to fi l l out, and r el ati vel y l ow pr emi ums or fees.
Most of the compani es str ess that thi s i s not
i nsur ance and shoul d not r epl ace exi sti ng
i nsur ance. However, for those who ar e uni nsur-
abl e or cannot affor d i nsur ance cover age, thi s
may be an al ter nati ve wor th i nvesti gati ng. Si nce
al l of these compani es ar e r el ati vel y new and have
not establ i shed an extensi ve tr ack r ecor d, i t woul d
be wi se to thor oughl y check out any company
befor e maki ng a commi tment. Read al l the fi ne
pr i nt, make sur e al l your questi ons ar e answer ed
to your sati sfacti on, and consi der consul ti ng the
Better Busi ness Bur eau to see i f compl ai nts have
been r egi ster ed.
Exampl es of medi cal di scount pr ogr ams
cur r entl y avai l abl e ar e:
POWERx Medi cal Benefi t s Net wor k
www.power x.net/
800/ 421- 4943
Heal t hCove
www.heal thcove.com/
800/ 796- 5558
Car e Ent r e
www.car eentr ee.com/
800/ 820- 6474
Al l of these sour ces can hel p you begi n l ocati ng
fundi ng for your needs. I f you need addi ti onal
assi stance or i nfor mati on, pl ease contact the
Amputee Coal i ti on of Amer i ca tol l - fr ee at 1- 888/
AMP- KNOW ( 267- 5669) .
FirstStep 89
T
DIABETES:
PREVENTING
LOWER-
EXTREMITY
AMPUTATIONS
by Frank Vinicor, MD, MPH
often hi gh bl ood pr essur e. I f the abnor mal
metabol i sm cannot be br ought under r eason-
abl e contr ol wi th di et and medi ci ne, peopl e wi th
both types of di abetes can devel op compl i ca-
ti ons, i ncl udi ng eye, ki dney, ner ve, feet, and
hear t pr obl ems.
Sci enti fi c studi es, however, i ndi cate that i f
peopl e wi th di abetes ti ghtl y contr ol thei r bl ood
gl ucose, bl ood pr essur e, and bl ood fat l evel s,
thei r chances of devel opi ng these pr obl ems can
be si gni fi cantl y decr eased. We have al so l ear ned
that detecti ng changes i n foot shape, sensati on,
and bl ood fl ow, wi th thr ee r el ati vel y si mpl e and
i nexpensi ve offi ce tests, al l ows us to pr edi ct those
who ar e at gr eater r i sk to devel op ul cer s and
amputati ons.
Li vi ng wi th di abetes i s a dai l y chal l enge. Many
thi ngs peopl e take for gr anted, such as eati ng
any ti me and exer ci si ng fr eel y, become r eal
pr obl ems for peopl e wi th di abetes, who must
car eful l y bal ance food, physi cal acti vi ty, and
medi cati on to pr event compl i cati ons.
Di abetes al so poses pr obl ems for us as a
FACTS ABOUT LOWER-
EXTREMI TY AMPUTATI ONS
Mor e than hal f occur i n peopl e wi th
di agnosed di abetes, who r epr esent onl y 3
per cent of the Uni ted States popul ati on.
They ar e a si gni fi cant compl i cati on for
peopl e wi th di abetes, and bl acks and the
el der l y ar e di spr opor ti onatel y affected.
Al most 60 per cent occur among peopl e
age 65 or ol der.
Between 1983 and 1996, the r ates
i ncr eased 24 per cent.
The facts ar e devastati ng. Di abetes i s
the number one cause of
nontr aumati c amputati ons among
Amer i cans, wi th over 86,000 l ower-
extr emi ty amputati ons occur r i ng
each year. That i s about 236 l ower-
extr emi ty amputati ons ever y day!
The good news i s that i t i s often
possi bl e to pr event these amputa-
ti ons. Rel i abl e and si mpl e r i sk
factor s can i denti fy those among the
esti mated 16 mi l l i on Amer i cans wi th
di abetes who ar e at speci al r i sk for foot ul cer s
that often l ead to amputati ons, and, wi th pr oper
car e, about 50 per cent of l ower- extr emi ty
amputati ons i n peopl e wi th di abetes can be
pr evented. Even when compl i cati ons ar e al r eady
pr esent, we can do a l ot to stop them fr om
getti ng wor se.
Most peopl e thi nk of di abetes mel l i tus i n two
maj or for ms: type 1 or type 2. Type 1 di abetes,
pr evi ousl y cal l ed j uveni l e- onset or i nsul i n-
dependent di abetes, typi cal l y occur s i n peopl e
under age 30 and i t happens much mor e
fr equentl y i n the whi te popul ati on than i n
mi nor i ty communi ti es. I t seems to be caused by
an autoi mmune or sel f- destr ucti ve pr ocess
i nvol vi ng the beta or i nsul i n- pr oduci ng cel l s i n
the pancr eas. Because these cel l s ar e destr oyed
by the bodys own i mmune system, peopl e wi th
type 1 di abetes have to take i nsul i n to r epl ace
what the beta cel l s no l onger make. Stoppi ng
i nsul i n r epl acement i n these peopl e r esul ts i n a
r api d br eakdown i n fat and muscl e ti ssues, wi th
sever e aci dosi s ( too much aci d i n the body) and
coma.
Type 2 di abetes, pr evi ousl y cal l ed adul t- onset
or non- i nsul i n- dependent di abetes, typi cal l y
appear s after age 40 and i s cl osel y associ ated
wi th wei ght gai n and physi cal i nacti vi ty. Type 2
di abetes accounts for at l east 90 per cent of al l
cases i n the Uni ted States and i s especi al l y
common i n mi nor i ty communi ti es. Pr oper di et
and acti vi ty, al ong wi th or al medi cati ons, can
often contr ol the bl ood sugar i n peopl e wi th type
2 di abetes; however, as the di sease pr ogr esses,
these peopl e mi ght al so need i nsul i n tr eatment.
Whi l e the basi c causes of these two common
types of di abetes ar e di ffer ent, they both r esul t i n
abnor mal body metabol i sm ( especi al l y hi gh
bl ood sugar s) , abnor mal fat metabol i sm and
90 FirstStep
nati on. Fi r st, the pr eval ence of di abetes has
i ncr eased dr amati cal l y over the past decade i n
the Uni ted States and thr oughout the wor l d. By
the year 2025, the fi ve countr i es wi th the hi ghest
i nci dence of di abetes wi l l be I ndi a, Chi na, the
Uni ted States, Paki stan, and I ndonesi a. I n the
Uni ted States, ther e has been a 33 per cent
i ncr ease i n the fr equency of di abetes over the l ast
ei ght year s; at the same ti me, ther e has been an
i ncr ease i n wei ght gai n and physi cal i nacti vi ty.
Thi s i ncr ease i n the number of peopl e wi th
di abetes r epr esents new cases, not j ust better
detecti on of those wi th di abetes.
Secondl y, the onset of di abetes, especi al l y type
2 di abetes, seems to be occur r i ng at younger
ages. I n the past, peopl e wer e typi cal l y i n the 50s
when they wer e di agnosed wi th type 2 di abetes.
Now we ar e seei ng a gr eater i ncr ease i n di abetes
among peopl e ages 30 to 39, whi ch means that
they wi l l have the condi ti on for a l onger ti me.
Fi nal l y, we ar e concer ned that wi th mor e cases
of di abetes of l onger dur ati on, we wi l l see mor e
of the potenti al l y devastati ng compl i cati ons,
i ncl udi ng ner ve and foot di sease and,
ul ti matel y, mor e l ower- extr emi ty amputati ons.
Faci ng these sci enti fi c data and concer ns, we
must ask our sel ves what the publ i c heal th
communi ty i s doi ng about these pr obl ems.
Gover nment agenci es and the pr i vate sector
have di ffer ent r esponsi bi l i ti es to addr ess the
chal l enges of di abetes by fi ndi ng a cur e or
pr eventi ng the di sease.
Recentl y, ther e has been a l ot of medi a
cover age ar ound the possi bi l i ty of a cur e for
type 1 di abetes. I n an i mpor tant study fr om
Canada, sever al pati ents wi th l ongstandi ng type
1 di abetes r ecei ved i nj ecti ons of i sol ated beta
cel l s ( i nsul i n- pr oduci ng cel l s obtai ned fr om
r ecentl y deceased i ndi vi dual s) .
These pati ents al so r ecei ved
speci al exper i mental medi ci nes
to pr event r ej ecti on of these
for ei gn cel l s, and after about a
year, they wer e abl e to contr ol
thei r bl ood sugar s wi thout
i nsul i n i nj ecti ons. A much l ar ger
study i s now i n pr ogr ess wher e
peopl e wi th type 1 di abetes ar e
r ecei vi ng the so- cal l ed
Edmonton pr otocol . The
r esul ts of thi s study shoul d gi ve
us i mpor tant i nfor mati on about
how effecti ve thi s appr oach i s.
Ther e ar e, unfor tunatel y, no pr omi si ng l ong-
ter m sci enti fi c studi es suppor ti ng a cur e for
type 2 di abetes, whi ch has a di ffer ent di sease
pr ocess fr om type 1.
Resear ch on pr i mar y pr eventi on fal l s wi thi n
the pur vi ew of the Nati onal I nsti tutes of Heal th
( NI H) . I mpor tant and exci ti ng cl i ni cal tr i al s ar e
under way to deter mi ne how both types of
di abetes can be pr evented, and r esul ts ar e
expected i n a coupl e of year s.
Once r el i abl e sci enti fi c studi es ar e publ i shed
and di scussed, i t becomes pr i mar i l y the
r esponsi bi l i ty of the CDC to tr ansl ate the
fi ndi ngs i nto communi ti es thr ough pr ogr ams
that wi l l i mpr ove the dai l y management of
di abetes. The CDC suppor ts 59 Di abetes Contr ol
Pr ogr ams ( DCPs) i n al l states and ter r i tor i es.
These DCPs, i n cooper ati on wi th many par tner s
such as the Amer i can Di abetes Associ ati on
( ADA) and the Amer i can Associ ati on of Di abetes
Educator s ( AADE) wor k thr ough communi ty
educati on pr oj ects to hel p peopl e keep abnor mal
metabol i sm i n check. Wi th thi s str ong base of
sci enti fi c i nfor mati on, other
gover nment and pr i vate sector
pr ogr ams can al so i mpr ove
thei r del i ver y of car e for peopl e
wi th di abetes and foster
i mpr oved i nsur ance cover age
for these pr eventi on pr ogr ams.
Someti mes, however, despi te
val i ant effor ts by ever yone,
di abetes compl i cati ons sti l l
devel op. Once they do, CDC
pr ogr ams str i ve to i denti fy
them ear l y and tr eat them aggr essi vel y to
pr event pr ogr essi on.
We ar e al l wor ki ng for and anti ci pati ng the
gr eat day that we wi l l fi nd a cur e for di abetes or
successful ways to pr event i t. But today, we can
do a better j ob i n hel pi ng peopl e wi th di abetes
keep thei r l i mbs and l ead sati sfyi ng, pr oducti ve,
and happy l i ves. To accompl i sh thi s, we must
wor k together towar d thi s goal ever y day. What
can you do to hel p? I f you have di abetes, get
r egul ar tr eatment and fol l ow your heal th
pr ofessi onal s advi ce to pr event sever e compl i ca-
ti ons. Reach out to fami l y and fr i ends and
encour age them to be physi cal l y acti ve and pay
attenti on to thei r nutr i ti onal needs to pr event
obesi ty and maybe di abetes.
For moreinformation about diabetes, call
theCDCsDiabetesInquiry Linetoll-freeat 1-
877-CDC-DIAB or 232-3422(Englishand
Spanish) or visit theWebsiteat
www.cdc.gov/diabetes
About the Author :
Frank Vinicor, MD,
MPH, isdirector,
division of diabetes
translation,
Centersfor Disease
Control and
Prevention, Atlanta,
Georgia.