T - Huntington's Disease Society of America

Physical Therapy and HD:
- ' From A Social Worker's Perspective
-' I ;,:- eople with Hunting;ton's disease,4ro;e' u'hat's happeling to dretrl,"
- emphasizes
I -- 'social lvorker Paui F-erreira, NIS\V. "They mav still be anrbulator,r'i br-rtheir
,- coordination skills are decrcasing. l-hey have less endurance tl-ran theY trsed
to have, thel'hn1,e difficulq' transferrir.rg fiorn chair to bcd, and the,v rnay need safety
devices to pieventhem fronr falling or sustairrilg head injuries...Thel' 11gecl a lot r:f
ernotional supporto help thenr deal u'ith thcse losses in ph1'sical function. A cr-itical
fbctor in the tr-eatur.rent of these patients is the attitude of the phvsicai therapist, lvho
rnust have a positive-but realistic--outlook." Both ps)'chodreraPist and case matiageq
Ferreira coordinates the tleatment team tlrat lr,orks rvith patients rvidr HD at tbe
C|u-istian Hill Rcfiabilitatior.r and Skilled Nursing Center ir.r Lorvcll, N4assachr.rsetts.
"Ph,vsical
tlrerapy is a major compone nt of the trcatmcnt progfarn for pcople rvith
"TIre
rnid-stage FID," says Fcrreira. trich.part is that HD isrlt just a ph1'sical problem.
It's the ph1,sica1 therapist'sjob to clistinguish anrons changcs relatcd to ph1'sical deterioration,
mental detcrioration, and tllc patient's elt-totional state'"
As Suzanne Imbriglio, P! discusscs o1 drese pagcs, sornc patients t'ith HD 1.ray
"For
strongly resist physical therapl.: these patients, to participate in phl'sical therapv is
to aclilit that the1, are sick," cxirlains Fcrreira. "Some paticuts are t(xr deep in dcnial to
to do that. In otlter cases, the disease affccts the mind, rcsultin$ in a psych6{c thought
process. Son-re patients rnay be depresscd-r'vhicli tvpicall1'affects dreir urotivatiou aud
iself-startilg' 'pzrssinQ
abiliq'-or may leel guilq' for thc diseasc on' to drcir cfiildre1'
Sone studie suggest that the incidence c-,f suicidc tr.rav be l.righer among peoplc rvith
HD than among the general population. Ald then thcrc arc patients rvho u'ant to do
anlthingthcy can do to help themselves." Ferrcim adds th:rt a paticnt's preexisting
"If
persolaliq' 16its tnay be agrplifred by thc disease. tfie patient telded to be anrit'rus
tr negative befc,rc theonset of F{l), he or she will probably have a big problenr t'ith
an-xiety as the disease progfesses; if the patient tended to be optimistic, that will be a
big help as tiure goes ott."
Florv does the social rvot-lier help the patient accept physical therapvl
"Patients
leecl to ex;'rlc.rre their- feelings about IfD,. .Iltdrei/re ir.r deniai, for eriamprle,
1'ou cirtr't'force'them out of it. L-rstcad i'ou tDr to find some t'indolv of oppol'tunirv'
it's important to talk about the real-ities of da1'-16-6|n" 6le' 'FIou'' are l'ou doiugi Are you
talling dorvn a lot? A.r-e ),ou able to r.valk around as rnuch as you used tol'As the patient
'RetnemLler
becomes rnore comfortable talking about these problerns, )rotl can sa1"
phvsical therapi'f lVlaybs rve could tr.v drat. N'[at'be it could help'' "
When Ferreir-a sepses during a counseling sessiotr that a patient nral'be readl' f61'
pitysical therapii he lr-ra1'rvalk u,ith tl.re patient to the ph,vsical drerapy deparlrnento
h1d out rvhetfier a ph,vsical therapist can mect rvitlt the patient right au'a1i L]ntil the
patient becorr.res familiar rvitlt the ph1'sical tlierapist. F-erreiralso may "sit in" otr the
phi'sical thcrapy scssions.
"This "After open door policl'can be hard on the PG," he sa1's' all, tl"rey're very
busti In addition to 2J patiertts'w4lo ltave I-ID, diey also treat geriatric patients and
patients with subacute tratunatic brain iljury But because of the day-to-da-V variability
among patients rn'ith HD, dris is the method that lr,orks best." Ferreira pauses.
"I guess
you could say that PG havc to str-il;e ivlile the iron is hot."
Psycholropic Medicotions
In addition to lcrorving rvhether a syrxptom is related to thc tlisease Process or to
the patient's aruiiegi the physical therapist also ntust r.urclerstand the eflects ofpst'chotropic
r.nedications.
"There are basical\, fbur categories of drr-rgs r,rsed u'ith patients n'ith FID," explains
Ferreila,
"a1l of rvhich tnal' l1n1's an irnpact on ;'l.rrsical therapl'treatnrent' f'he first
includes the ner-rroleptics, suclr as Flalclol", ri'liich, in lou'dclsages-'l to 10 mgstages,
inciuding death and dying.
Some fanrilies believe tl-rat when the
paticnt has reached the last stage of
the disease, he or she should be transferred
to a nursing horne for medical
mallagement, whereas other families
believe that the patient should
remain in familrar surroundings.
T-\^, r^ l^, -.^'..-.nrent
udy-lw-ud) 1rrarraSLt and care
of the person rvith HD are delivered
bJ, u tet- of nembers from the follouing
disciplinet: nursing, restorative
sen'ices, health and special education
sen ices, and :ocial services.
h'ursittg carc.'Ihe nursing staffdeal
witl-r such issues as l) the monitoring
ofdietary intake because ofeating and
f'eecling problems that ma1 rcsult in
chokingl 2) skin management problems
resulting from excessive invoLuntarv
moverrents; 3) deficits in
activities-of-dailpfvltt* (ADL) skiJls,
rvhich may result from incoordination
and deteriorating psychomotor
functions; and 4) pharmacologicai
management.
Rrstotuti:ce serttins. These services
include speech therapy, occupational
therap1,, and physical therapir Physical
drerapy is beneficial in improving
or stabilizing motor abiliti! preveuting
contracrures, and adapting the
enr.ironmento foster independence
rvl'rile ensuring safety. Occupational
thcrapy sen'ices help tJre patient maximize
coordination abilittes as rvell as
ADL skills. \\-itlr speech therapy,
people witli HD may be able to improve
intelJigibility; sonre may benefit
frorn the use of augmentative speech
der,'ices. The speech therapist also is
responsible for evaluating dysphagia.
Healtlt and special education seraice-s.
Provided by health educators
and special education tcaclrers, these
servicef include cognitir.e retraining,
rnemor)/ and awareness training, and
"self-ir-nprovement" classes especiaily
designed to help people rvith HD
improve their self-esteem.
Soria/ srrt'ires. Peoplc u itli HD
require specialized intenrention strat-
64 Clinical N4anagement