T - Huntington's Disease Society of America

More documents

Recommendations

Info

1 R i A T i l 1 T i . l I The patient may go through a period ofanger or depression or both as changes occur in physical starus. \\tth counseling and support, hor,vever, these changes can be "turned around" into something more positive. The patiEnt may learn that he sti1l can go out to the donut shop as long as he wears a helmet or knee pads for protection or that using a wheelchair does not prevcnt him flrom going out to the Monday night bingo gamc. Helping the patient nraintain a normal routine while adjusting to physical changes is essential. The Fomily os Future Potienl Because of the genetic component of HD, many family members of patients are at risk for FID and therefore may be patients themselves in the furure. tramily members must deal with many emotions when placing a patient in long-term care. When the patient is a child ofan unaffected parent, the parent's concerns primari- Iy revoive around obtaining highquality care for the chi1d, and the parent feels some reliefr,vhen this care is found. When the patient is a parent, the children are themselves at risk for HD and therefore have additional concerns. The childrcn oIpatients with HD require support and the opportuniry to talk in-depth abour the rype of care the patient wiil receive, pardv because they know they may need that care themselves one day. Family members who are themselves at risk for HD rypicalJy have been caregivers in the past and therefore may have some very helpful ideas about how to deal with the patient. This information can be vital, particularly upon admission. This transfer of information also is a good way for that family member to become accustomed to the notion that the patient rnill be cared for by someone else. Very often the "at-risk" family mem- Vol. 12 No.5 September/October 1992 ber is esneciallv interested the therapeutic interventions available to th" LrrL ^.tio.r r.rl tl'"t C-ilr, dIIU tll4t lall/ll) -"-ht. rrrLlrluLr PAUlllL\ sometinies looks to the therapist for hope that treatment will delay or preverrt the inevitable degeneration. Working with families who are at risk takes a great deal ofsensitivity on the part ofthe therapist. In addition to meeting the needs of tlie patient, the therapist must provide connseling, teaching, and support to the family, making appropriate counseJing referrais as needed. It has been r,vell-documented that thc qualiry of care given to patients rvith HD-as perceived by the patients' children-decply affects rhe childlen's ability to face their orvn illness. The perception of the quality of care also influences their abilig to make use of professional services ( Martindale 1987 ). A slogan commonly used in the HD communiry underscores this need For quality care: "Until there's a cure) there's only care." crt Suzanne Imhriglio, PT, is Director of Restoratice Seroica, C/tristittn Hill Relnbilitation and S li/led l{ursittg Ccnte6 19 y'arnurn St., Lor'le//, l,lA. The author tlunls Jim Po/lard, Paul Ferreira, and Tbn Imbrigliofor their assistance in uriting rhts article, and tie HD treatment te(tm at C/tristian Hill for tlteir continu&/ roopff(ttizu. For more informotion obout Huntingfon's diseose, cqll the Huntingfon's Diseose Sociefy: of Americo, 212 / 242-1968. REF'ERENCES Caine ED, Ebert NIH, \\'eingartner H. An outline for the analysis of dementia: the memory disorder of Huntington's Disease. Neurologt 1977;27:1087 -1092. FisherJNl, KennedyJL, Caine ED, Shoulson I. Dementia in Hunt- "'b'"" inqton's " disease' a cross-seclional analysis of intellectual decline. Adv Neurol. 1983;38: 229-238. Fluntingtorls Disease Sociery of America. Facts at a G/ance. New lbrk, NY: Huntingtoris Disease uvLlLL/ q^^:^-. ^t Ur r ^ !rlr!r1L4) ^^:^^. Iggl. Martin JB, Gusella JE Huntingtorls Disease: pathogenesis and management. N EngJ Med. I99l; 315:1267 -1276. Martindale B. Huntington's chorea: some psychodynamicseen in those at risk and in the responses of the helping professions . Britislt Joumal of Pslchiatrl. 1987 ; | 50319-323. Mayeux R, Stern d Herman A, et al. Correlates of early disability in F{untingtods D rsease. Ann Neurol. 19 B 6;20 :727-731. Mccreery P Frequency and the standard celeration chart: Necessary components of precision teaching. Joumal of Precision Tiaclting. 198 4 ; 5 (2):28-36. NlcHugh PR, Folstein Mtr Rychiatric syndromes of Huntington's chorea: A clinical and phenomenological study. In: DF Benson, D Blumer, eds. Pslcltiatric Aspec* of Neurolctgic Disease. New York, NY Crune and Stratton; 1975. Pennlpacker HS, Koenig CII, Lindsley OP.. Handbook of tlze Standard Beltavior Chart. Kansas City, KS: Precision Medta 1972. SUGGESf'ED READINGS Harper PS, ed. Huntington's Disease. London, Engiand: W.B. Saunden and Co.; 1991. Shoulson I. Huntington's disease: cognitive and psychiatric features. Neurolog 1990 ;3:I 5 -21. Young AB. A Neurologist Speaks Alout Fluntingtoni Disease. Excetpt: from Dr Young\ speech to tlte annual workhop. NewYork, NY Huntington's Disease Society of America;1986. w 6effi
Intoke: Regording your fomily membe/s core while home wiilr fomih- 1. Who assisted u'ith self-care? \Vith u,hich tasks? Bothing: Dressing: Grooming: Toileting: Upper body- Upper bod-v- Brushing hair fusist with pants up/down - Lower bodv- Lorver body- Brushing teeth - Help complete task Hands/face - Socks/shoes - Shaving - Commode was used Underclothes only - Makeup - Bathroom was used Nail care - Which tasks were the most difficulti \\hvi 2. \Ahen did assistance wirh homemaking skills become necessary? Which chores could your family member still perforn-r independentlyi Which chores could he or she Derform oart of? 3. Sho assisted your family member with eating? \Vere there anv "tricks" that made this task easier? (such as using special cups or utensils, avoiding certain t-vpes of food, using special chairs or clothes) 4. Please describe the position used by your family member while he or she was eating or being fed: Heod: Trunk (chest) Hips: Legs ([eet): Up - Forward - Back in chair - Flat on floor - Down _ Backward _ To one side ieft/right - Resring on stool - Foru,ard - Sidervays right/left - Fonvard in chair - In constant motion - Straight ahead - Upright - Under buttocks - Othei (please describe): Orher (please describe): Other (please describe): 5. Did your family member have an,v difficulty sitting in a chair? Yes - No - Which type of chairs did he or she use? Sling back chair - Straight backed chair - Wheelchair - Lounge chair - Rocking chair - Recliner (e.g.,Lazy Boi€) - Didn t use a chair - Did you use anything to help your family member stay in the chair? A sheer tied around the chair - A tray placed over chair - Never used anything - \\hen did you use something to help your family member stay in the chairi During meals - In the morning - In the afternoon - In the evening - In the middle of the night - 6. Did you need to help -vour family member u'alk? Yes - No - Did you provide a wheelchairl Yes - No - How did you help,vour family member walk? One person held onto belt - One person held onto hips - One person held onto arm - 'livo Didn r let him/her rvalk - Tivo people on each arm - people held hands - Two people held onto belt - 7. Is there anyrhing yor.d used during your family member's stay at home that made his or her stay easier for you?- ffiro Designed by Linda Anderson, OTNL, 1990 Figure 1. Sample intahe form used hy rhe Huntington's disease treatment€am to he lp assess tlte patient's functional lroels--and os part of a strateg to help ensurefamifinoolaement in the patient's care. Clinical Management
Page 1 and 2: T ' ' i t A T t 4 E r , l T IVothin
Page 3 and 4: Physical Therapy and HD: - ' From A
Page 5 and 6: T R T A T [ i t N T f or nrany pati
Page 7: i F E t . T L l E t { T ffi,' i:{{
Page 11: Purpose Assess Read-ng StartDate_ P

T - Huntington's Disease Society of America

You also want an ePaper? Increase the reach of your titles

Delete template?

Save as template?