MS BulletinóarÍa nru. 16 - Settembru 2004

Il-LogÓob Paralimpiku – Ateni 2004

Wara s-suÐÐess kbir tal-logÓob Olimpiku f’Awissu li gÓadda Íewwa Ateni, f’dawnil-jiem, sa tmiem Settembru, qiegÓed isir il-logÓob imsejjaÓ paralimpiku, jiÍifierilogÓob li jieÓdu sehem fih atleti b’diÚabbiltà. It-22 sport differenti f’dan il-logÓobhuma: qaws, atletika, basketball, basketball fil-wheelchair boÐÐi, ÐikliÚmu fuq it-triq u fit-trekk, Úiemel, futbol (5-a-side u 7-a-side), goalball, Íudo, powerlifting,ibburdjar, sparar, gÓawm, table tennis, volleyball, dwell fil-wheelchair, rugby fil-wheelchair.

Kien fl-1948 li Sir Ludwig Guttmann organizza kompetizzjoni sportiva fi StokeMandeville, fl-Ingilterra gÓal veterani tat-Tieni Gwerra Dinjija li kienu ndarbu fix-xewka ta’ daharhom. Erba’ snin wara, kompetituri mill-Olanda ingÓaqdu fil-logÓobu b’hekk taw bidu gÓall-moviment internazzjonali msejjaÓ illum il-MovimentParalimpiku. Kien fl-1960, Íewwa Ruma, li l-logÓob saru fuq il-mudell ta’ dawkolimpiÐi. Fl-1976, fl-IÚvezja, Íew organizzati l-ewwel logÓob paralimpiÐi tax-xitwa.

Illum hemm sitt gruppi ta’ diÚabbiltà li jieÓu sehem f’dan il-logÓob. L-gÓan ta’dan il-logÓob huwa li wieÓed jisÓaq fuq il-kisbiet atletiÐi tal-parteÐipanti u mhuxfuq id-diÚabbiltà tagÓhom. Il-parteÐipazzjoni f’dawn il-logÓob tiÚdied minn edizzjonigÓall-oÓra. Hekk naraw li minn 400 parteÐipant fl-edizzjoni ta’ l-1960 f’Ruma,f’dik ta’ Sydney tas-sena 2000 Óadu sehem 3843 atleta minn 122 pajjiÚ.

Il-Kwalità tal-óajja gÓall-Persuni bl-MSIl-Federazzjoni Internazzjonali tal-MS (MSIF) gÓadha kif nediet proÍett Ídid ligÓandu jÍib ’il quddiem il-kwalità tal-Óajja gÓal persuni bl-MS. Il-proÍett gÓadufil-faÚi ta’ tÓejjija u huwa maÓsub li jkun varat f’April 2005. Il-Ósieb huwa li l-proÍett jiÚviluppa gÓadd ta’ prinÐipji internazzjonali dwar il-kwalità tal-Óajja sabiexdawn, imbagÓad ikun adottati sew mis-soÐjetajiet nazzjonali kif ukoll mill-MSIF.Il-Federazzjoni Internazzjonali tal-MS hija konxja Óafna tad-diffikultajiet quddiemproÍett bÓal dan. Dan minÓabba d-differenzi kbar li jeÚistu bejn il-livelli tal-Óajjafil-pajjiÚi differenti, u gÓalhekk is-servizzi offruti lil persuni bl-MS mhumiexkullimkien l-istess. Kien minÓabba f’hekk li l-proÍett kellu jillimita ruÓu gÓall-aspetti Íenerali tal-kwalità tal-Óajja.

Skond tagÓrif miksub s’issa, il-prinÐipji ewlenin se jkunu dawn:1. L-Indipendenza tal-pazzjent u l-jedd li jiddeÐiedu gÓalihon infushom.2. Il-Kura Medika.3. Il-Kura SoÐjali.4. Promozzjoni tas-SaÓÓa u l-Prevenzjoni5. Sapport gÓall-Membri tal-Familja6. It-Trasport.7. Ix-XogÓol u l-Attivitajiet Voluntarji.8. BenefiÐÐji tad-DiÚabilità u GÓajnuna bi Flus.9. L-Edukazzjoni.10. Id-Djar u l-AÐÐessibbiltà ta’ Bini fil-Komunità.

L-MSIF ikkommissjonat lir-Research Triangle Institute Intrenational sabiexjiÚviluppa dan il-proÍett. Is-siwi ta’ dan il-proÍett huwa li bis-saÓÓa tiegÓu is-soÐjetajiet nazzjonli, u l-gÓaqda tagÓna hija waÓda minnhom, ikunu jistgÓujippjanaw l-istrateÍiji u l-inizjattivi tagÓhom u jiÚviluppaw is-servizzi u l-programmita’ sapport skond il-prinÐipji mfassla f’dan ilproÍett. Fuq livell internazzjonali, danil-proÍett jagÓti l-mezz lill-MSIF biex jitkellem f’isem il-persuni milqutin bl-MS uf’isem is-soÐjetajiet nazzjonali fil-kampanji tiegÓu gÓal servizzi aÓjar lill-persunibl-MS. Il-Federazzjoni Internazzjonali tal-MS irÐeviet gÓotja ta’ flus mill-kumpanijamedika Biogen biex tkun tista’ tidÓol gÓal dan il-proÍett.

MSIF

Il-Federazzjoni Internazzjonali tal-MS gÓadha ixxandar il-Íurnal MS in Focus lijiktbu fih bosta esperti dinjin fil-qasam ta’ l-MS. L-gÓadd numru 3 jittratta b’modpartikulari dwar aspetti familjari. MinÓabba s-suÍÍett magÓÚul, dan l-gÓadd gÓandujkun ta’ interess kbir mhux biss gÓal persuni bl-MS, iÚda gÓall-membri kollha tal-familja tagÓhom. Fih taqraw artkli dwar:

- X’hemm fl-MS li jagÓmilha marda “tal-familja”?- Kif tÓajjar lil uliedek jitkellmu dwar l-MS.- Kif tieÓu Ósieb dawk li jieÓdu Ósieb persuni bl-MS?- Nisa tqal li jbatu bl-MS.- It-tfal ukoll jistgÓu jintlaqtu bl-MS.

(Ikompli fil-paÍna li jmiss)

MS in Focus – Nri 3 u 4

Is-sit tal-MSIF fil-Web:Jekk fid-dar hemm kompjuter imqabbad mal-internet, persuni bl-MS u l-familjaritagÓhom gÓandhom l-opportunità li jinfurmaw irwieÓhom aktar dwar l-MSbilli jidÓlu fis-sit tal-MSIF (http://www.msif.org). Fih isibu seba’ taqsimiet kbar,litteralment mimlija daqs bajda b’tagÓrif mill-aktar interessanti u meÓtieÍ. Dawn

- AÓbarijiet mix-xena internazzjonali- Sintomi u trattament- RiÐerka- TagÓrif dwar l-MSIF- Il-Marda MS- Persuni bl-MS- Pubblikazzjonijiet

TistgÓu tirreÍistraw bla Ólas bÓala “users” ta’ dan is-sit u tibdew tikkomunikawma’ persuni bl-MS bÓalkom. Tkunu tistgÓu ukoll taqraw profili dwar persunibl-MS li jirrakkuntaw l-esperjenza tagÓhom bl-MS u, jekk tridu, tistgÓu tibagÓtul-esperjenza personali tagÓom. B’hekk tinÓoloq tassew komunità dinjija ta’nies bl-MS.Minflok noqogÓdu biss fuq dak li nisimgÓu, ikun Óafna aÓjar jekk immorruf’ras il-gÓajn u ninfurmaw irwieÓna direttament mingÓand l-esperti fil-qasamtal-MS.

Ir-raba’ edizzjoni tal-MS in Focus tittratta dwar il-qasam psikoloÍiku. Fih taqrawdwar:

- Introduzzjoni gÓal kwistjonijiet emozjonali li Íejjin mill-MS.- Id-dipressjoni u l-MS.- Problemi ta’ konjizzjoni fil-Óajja ta’ kuljum.- Mezzi Ófief kif tpatti gÓall-problemi ta’ memorja.- Intervista

IdÓol issa fis-sit tal-MSIF (http://www.msif.org) u kklikkja fuq “Publications”.Jekk trid tista’ taqra l-artikli minn fuq il-monitor, jew inkella tniÚÚel l-artikli billitistampahom u taqrahom meta u fejn trid.

Is-Sinjura Sarah Phillips, chairperson tas-SoÐjetà IngliÚatal-MS gÓadha kif inÓatret chairperson tal-Federazzjonidinjija. Is-sinjura Phillips, li gÓandha 61 sena, kienet kowÐtat-tennis u fl-1981 saret taf li kellha l-MS. Hija u ÚewÍhaPeter gÓandhom ÚewÍt itfal.

Chairperson Ídid gÓall-FederazzjoniDinjija tal-MS

From the Dictionary of Multiple Sclerosis*

Primary Progressive MS (PP MS): Disease course characterized by progres-sive deterioration from the onset of disease, without clear-cut relapses or remis-sions, but with occasional plateaux and temporary minor improvements. Approxi-mately 10% to 25% of patients experience progression from onset.

Primary progressive MS, definite: MS with solely progressive course for atleast one year, positive cerebrospinal fluid and either positive MRI evidence, orequivocal MRI evidence and a delayed visual evoked potential.

Primary progressive MS, possible: Patients suspected to have PP MS withclinical progression for at least one year and equivocal MRI evidence or delayedvisual evoked potential.

Primary progressive MS, probable: Patients suspected to have PP NIS witheither (a) clinical progression for at least one year, positive cerebrospinal fluid andequivocal MRI evidence, or delayed visual evoked potential, or (b) clinical pro-gression for at least one year, positive MRI or equivocal MRI evidence and adelayed visual evoked potential (cerebrospinal fluid evidence either unavailable ornegative) .

* Lance D. Blumhardt (Editor-in-Chief), Taylor & Francis Group. 2004.

Tama fis-serum tal-mogÓÚa gÓal persuni bl-MSSkond il-London Times tal-25 ta’ Jannar, persuni bl-MS kellhom titjib kbir fil-kundizzjoni tagÓhom wara li Óadu bi tlaqqmu darba fil-ÍimgÓa b’injezzjonimagÓmula mis-serum tal-mogÓÚa (caprivax). UÓud minn dawn il-pazzjentirrappurtaw li qegÓdin jimxu mingÓajr bastun, filwaqt li oÓrajn qalu li l-vista ÍietgÓalli kienet. Minn 130 persuna li Óadu sehem f’dan l-esperiment, 85% minnhomstqarru li Óassewhom Óafna aÓjar minn qabel, mingÓajr ma batew minn side ef-fects. Persuna fosthom qalet li tÓossha 500% aÓjar, li beda jimxi mili sÓaÓ mingÓajrbastun, u li jÓossu Óafna aktar b’saÓÓtu. Fost dawk li tlaqqmu bil-capriax hemmukoll il-kantant Alan Osmond. It-team ta’ xjentisti nvoluti fl-iÚvilupp ta’ din id-droga huwa mmexxi mill-Professur Angus Dalgleish, onkologu f’St. George’shospital, Tooting, south London. Dawn ix-xjentisti jaÓsbu li dan it-trattament jista’jwassal gÓal titjib fit-tul.

RiÐerka

L-injezzjoni hija magÓmula minn se-rum safi ta’ mogÓoÚ immunizzat lijipproduÐu antibodies. Dan il-ÓingÓaddejjin tliet provi kliniÐiseparatament. Aspett poÚittiv ieÓordwar din id-droga huwa l-fatt li n-nefqa meÓtieÍa gÓall-iÚvilupp tagÓhahija waÓda Óafna anqas minn drogioÓra.Skond it-tabib tal-familja DavidMaizels, minn Chiselhurst f’Kent, ir-riÚultati poÚittivi minn din id-droga m’humiexÍejjin minn l-effett ta’ placebo u t-titjib fil-pazzjenti huwa sostenut u ikwaÚi mingÓajrside effects. Huwa rrapporta li, xi drabi, ir-riÚultati huma impressjonanti. Il-kantantAlan Osmond jisÓaqq li “... l-aktar importanti huwa li tÓares lejnl-affarijiet b’modpoÚittiv. GÓaliex mhux il-marda li tkissrek, iÚda n-nuqqas ta’ tama!’

Summary: According to the London Times of January 25th, “Patients sufferingfrom multiple sclerosis (MS) ... have experienced dramatic improvements in theircondition after taking part in trials of a drug derived from goat serum. Some havereported being able to cast aside their walking sticks and walk for miles, or ofregaining their vision or finding they can again use their limbs after years whenany movement was agony. Of the 130 patients on the trial, 85% reported bigimprovements with no side effects.” The new treatment is being pioneered by ateam of scientists and doctors led by Professor Angus Dalgleish, an oncologistbased at St Georges’s hospital, Tooting, south London, who believes it will atworst provide a highly effective subjective treatment for MS sufferers, but maylead to a long-term improvement. (Source: ThisIsMs – an unbiased multiple scle-rosis community http://www.thisisms.com)

EditorjalNittama li qegÓdin issibu enerÍija biÚÚejjed biex, b’xi mod jew ieÓor, jirnexxielkomtegÓlbu s-sÓana u l-umdità tal-jiem tas-sajf. Din hi parti mit-taqbida msejÓa “Óajjata’ kuljum”. F’dan l-gÓadd tal-bulettin tas-SoÐjetà tagÓna ssibu tagÓrif dwar il-LogÓob Paralimpiku li fih jieÓdu sehem atleti b’bosta forom ta’ diÚabilità. Is-sabiÓta’ dan il-logÓob huwa li l-atleti juru lilhom infushom, u lid-dinja, li minkejja d-diffikultajiet kbar li jinsabu fihom, huma xorta waÓda lesti jilqgÓu l-isfida tal-Óajja.Huma bÓallikieku jisfidaw id-diÚabilità tagÓhom u juruha li kapaÐi jaqbÚu d-diffikultajiet li ÍÍib magÓha u jilÓqu gÓanijiet li Óadd ma kien jobsor li jilÓquhom.Mela jixraq li niftakru li dan il-logÓob, barra li jisÓaq fuq il-kisbiet atletiÐi tal-parteÐipanti u mhux fuq id-diÚabbiltà tagÓhom, gÓandu jiswa ta’ tagÓlima kbira,GÓandu jfakkar lil persuni b’diÚabilità, hi x’inhi l-gÓamla tad-diÚabilità tagÓhom,li jistgÓu jagÓmlu xi ÓaÍa aktar b’Óajjithom, u li Íewwa fihom gÓad hemm Óafnaaktar enerÍija milli qatt basru. Il-LogÓob Paralimpiku, mela, iÍib miegÓu messaÍÍkbir ta’ ottimiÚmu. Sfortunatament, mhux dejjem huwa possibbli li wieÓed isegwidan il-LogÓob gÓaliex l-istazzjonijiet tat-televiÚjoni ftit li xejn iÓallu spazju gÓalih.Dan juri li s-soÐjetajiet suppost Úviluppati gÓadhom ma Úviluppawx biÚÚejjedkuxjenza lejn il-persuni b’diÚabilità. GÓalkemm forsi ma nammettuhiex, nibÚa’ lif’dawn is-soÐjetajiet gÓad hemm min iÓossu skomdu meta jara d-diÚabilità u jippreferijara biss il-logÓob Olimpiku bl-ispettaklu mill-aqwa li jÍib miegÓu. IÚda jekk wieÓedjieqaf jaÓseb ftit, ma jdumx ma jintebaÓ li, gÓalkemm l-atleti olimpiÐi jistÓoqqilhomkull tifÓir, madankollu l-atleti diÚabbli tixirqilhom kull ammirazzjoni gÓaliex humaf’kategorija gÓalihom ... fil-kategorija ta’ l-eroj.

www.msif.orgwww.msmalta.org.mt (il-website tas-SoÐjetà taÆna)www.nationalmssociety.org

www.mssociety.org.ukwww.ms-gateway.de

www.mscare.com

Websites Importanti

Memory problems?Don’t worry! You can do a lot about it.

Use a wristwatch with an alarm, and setit to remind you of events. People whomust take medication at certain intervalsfind this especially useful;

Electronic gadgets like personal digitalorganisers are effective for lists, agendas,important phone numbers, and addresses.Or try other organisational tools such asindex cards, a portable computer, or us-ing the reminder function of your mo-bile phone;

Place reminder notes in useful locationsaround the house or work place;

Keep important things in a designatedplace. Keep your daily diary on your nighttable or next to the phone, your keys in aparticular drawer or on a hook near thedoor. Being consistent in your routinewill make it easier to remember wherethings are;

Design a master shopping list, with allthe items you normally need, and makemultiple copies. Before going out to shop,review the list and check off the itemsyou ve run out of; Try to stay calm when memory fails.

(Adapted from MS in Focus (n. 4). Thearticle is based on MS and the Mind -

Memory and Problem Solving, by MarthaJablow, National MS Society, USA)

Keep a daily diary or notebook. Write down all appointments, reminders, and listsof things to do in one place. Tick things off once they are done. Get into the habit ofreferring to this diary routinely, perhaps at the same time each morning and again inthe evening for tomorrow s schedule;

Post a large family calendar in a prominent place, maybe the refrigerator door;

Editur: Dr Martin R. ZammitTypesetting u Design: Stefan ZammitMitbugÓ: P.E.G. Ltd., San íwann

The Winner of the Nicholson Award forInternational Caregiver of the Year 2004

The Persons with MS Advisory Group within the MSIF have identified the winner ofthe Nicholson Award for the International Caregiver of the Year 2004. Alan Lindsleyfrom the UK has been honoured with this award. Alan is 68 years old and cares forhis wife Joan who has had MS for 35 years. Joan has been a wheelchair user for thepast 20 years. They have two children and four grandchildren. Alan worked in themotor trade for 47 years and retired in 1997. He worked full-time up to the age of 60,continued to care for his wife Joan, and also found time to work as a volunteer in thedemanding roles outlined below. Alan was a Trustee on the UK MS Society Boardfrom 1987 - 1996, Chairman of the Northern Association and then of North of EnglandRegion, as well as Chairman of the Sunderland branch for 21 years. In his role as aregional volunteer, Alan makes a point of visiting each branch regularly, and hassupported branches facing difficulties on many occasions. He also represents peoplewith MS and carers on a number of committees within the local health and social caresector and is seen by senior health and social care professionals as the voice ofpeople with MS and carers within the local area. His success at representing theirneeds is reflected in the high quality and level of services within Sunderland.

Alan is the sort of person who does not like to be in the limelight but has workedtirelessly in the background, making sure that people without the support of carers,were supported and helped in any way needed.

The Nicholson Award for International Caregiver of the Year is made possible by aspecial grant from David L. Torrey of the MS Society of Canada.

Previous winners of the Nicholson Award

For further information on the Nicholson Award please contact Paul Rompani,International Development Manager, at MSIF, 3rd Floor, Skyline House, 200 UnionStreet, London, SE1 OLX, UK. Tel: +44 (0) 20 7620 1911, Fax: +44 (0) 20 76201922 or email paul@msif.org.

1998 Bente Nielsen Denmark1997 Josy Baumann Switzerland1996 Joan Dartnell Australia1995 Ewa Marszal Poland1994 Harry Bell South Africa

2003 Skaidrite Beitlere Latvia2002 Jon Ferguson Australia2001 Ion Gîda Romania2000 Cor de Wilde Netherlands1999 Helen Jean Mortson Canada