Mapa dobrega počutja pri Parkinsonovi bolezni. podpira komunikacijo pri Parkinsonovi bolezni
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1 Mapa dobrega počutja pri Parkinsonovi bolezni podpira komunikacijo pri Parkinsonovi bolezni
2 Uvod Parkinsonova bolezen je progresivna, kronična, nevrodegenerativna bolezen, ki v razvitih državah prizadene od bolnikov, starejših od 6 let. Bolezen je manj pogosta pri bolnikih, mlajših od 5 let. Za Parkinsonovo bolezen so značilni motorični simptomi, kot so težave z gibanjem. Najbolj značilen je tremor. Parkinsonova bolezen je povezana tudi s simptomi, ki niso neposredno povezani z gibanjem. To so nemotorični simptomi, ki so kar pri 59 % posvetov bolnikov z nevrologi spregledani. Pogosto jih bolniki ne opišejo, zato niso prepoznani in zdravljeni. je razvita za izboljšanje komunikacije bolnika s Parkinsonovo boleznijo z njegovimi skrbniki. Z uporabo Mape dobrega počutja lahko: spremljate stanje bolezni vodite pregled nad motoričnimi in nemotoričnimi simptomi izkoristite pogovor z zdravnikom za pomembna in osredotočena vprašanja Zdravljenje Parkinsonove bolezni je pogosto omejeno na zdravljenje klasičnih motoričnih simptomov. Nemotorični simptomi ravno tako prizadenejo počutje bolnika kot motorični simptomi. Zato je pomembno, da je zdravljenje Parkinsonove bolezni celostno. Nemotorični simptomi so lahko učinkovito zdravljeni, če jih prepoznamo dovolj zgodaj.. de Lau LM, Breteler MM. Epidemiology of Parkinson s disease. Lancet Neurol. 6 Jun;5(6): Shulman LM et al. Parkinsonism Relat Disord ;8():9 97. Clarke CE et al. Br J Clin Pract 995;9(6):88 9
3 Kako uporabljamo Mapo dobrega počutja pri Parkinsonovi bolezni TM Motnje spanja Obkrožite številko, ki najbolje opisuje vaše počutje. Za vsak simptom na lestvici od do ocenite, kako vas obremenjuje. Na lestvici pomeni nikoli občasno včasih pogosto vedno Movement I have early morning stiffness I have stiffness (Rigidity) I have shaking (Tremor) I have slowness of movement I have decreased/no ability to move I have dyskinesias I have impaired balance/falling I have a change in posture I have difficulty speaking Other:... Pain.. Mapa dobrega po cutja pri Parkinsonovi bolezni Motnje spanja Prebavo Bolečino Mehur in spolno funkcijo Druge nemotorične simptome Razpolo enje de ponoči I have early morning painful cramps (dystonia) affecting toes, fingers ankles, wrists causing you to wake up have painful, stiff limbs during the day t night Tri najbolj pomembna vprašanja, ki jih m zastaviti skrbnikom podpira komunikacijo v povezavi z boleznijo jemljem slede ca zdravila Najbolj se elim osredotočiti na Za Parkinsonovo bolezen Levodopa + benserazid/madopar Levodopa + karbidopa/duodopa Levodopa + karbidopa/nakom Levodopa + karbidopa + entakapon/stalevo Bromokriptin/Bromergon Kabergolin/Dostinex Pramipeksol/Mirapexin Pramipeksol/Mirapexin PR Ropinirol/Requip Ropinirol/Requip-Modulab Rotigotin/Neupro Apomorfin/APO Razagilin/Azilect Selegilin/Jumex Entakapon/Comtan Tolkapon/Tasmar Amantadin/Symmetrel ir http //.parkinsons.org.uk/advice/publications/ treatments_and_therapies/drug_treatments_of_parkinsons.asp vsebuje več izvodov, ki jih lahko uporabljate za:. spremljanje simptomov v določenem času. povzetek in pregled nad zdravjem in počutjem v preteklem mesecu ter za pripravo na posvet z izbranim zdravnikom Uporabljajte grafikone za opis svojih simptomov Mapa dobrega Parkinson s počutja Well-Being pri Parkinsonovi Map TM bolezni DATE: (DD/MM/YY) Obkrožite Circle the number številko, that ki najbolje best reflects opisuje your vaše well-being počutje. Za Never vsak simptom Occasionally lestvici Sometimes od do ocenite, Often kako Always vas obremenjuje. Na lestvici pomeni nikoli občasno včasih pogosto vedno anja sturbances ty falling asleep at night Attention/Memory I am unable to concentrate during activities Digestion and the Gut I have difficulty swallowing ty staying asleep I have slowness of speech I am dribbling/drooling (a lot of saliva) ty getting back to sleep once awake I am forgetful I have bouts of vomiting or feeling sick (nausea) ebudim, težko ponovno zaspim ng tiredness I have difficulty remembering names, I have constipation en/a e during the day numbers, events I have diarrhoea trujenost doze off at inappropriate moments Other:.. I have an upset stomach span/a ob neprimernem času... Other: Movement Imam I have jutranjo early morning okorelost stiffness Občutim I have stiffness togost(rigidity) nje Se I have tresem shaking (Tremor) m za stvari Gibljem I have slowness se upočasnjeno of movement interest voljstva pri zadevah, pri Gibljem I have decreased/no manj/ne morem ability to se move gibati e užival from things I used to enjoy Imam involuntary nehotene movements gibe (zgibke (Dyskinesias) ali diskinezije) ečno y Imam I have težave impaired z ravnotežjem/padci balance/falling o frightened in prestrašenost/paniko or panicky Imam I have spremenjeno a change in posture držo dna I have difficulty speaking I have small handwriting (Micrographia) Other:... S partnerjem ali skrbnikom preglejte vse kategorije simptomov (npr. motnje spanja) in označite, kako vas določen simptom obremenjuje. Datum vpišite na vrhu strani. Obkrožite številko, ki najbolje opisuje vaše Povežite svoje številke Drugi vidiki vaše Parkinsonove bolezni počutje Mapa dobrega Parkinson s počutja Well-Being pri Parkinsonovi Map TM bolezni Obkrožite Circle the number številko, that ki najbolje best reflects opisuje your vaše well-being počutje. Za Never vsak simptom Occasionally lestvici Sometimes od do ocenite, Often kako Always vas obremenjuje. Na lestvici pomeni nikoli občasno včasih pogosto vedno DATE: (DD/MM/YY) Motnje spanja urbances Attention/Memory Digestion and the Gut alling asleep at night Med I am aktivnostmi unable to concentrate se ne morem during osredotočiti activities Imam I have težave difficulty s požiranjem swallowing taying asleep Govorim I have upočasnjeno slowness of speech Imam I dribbling/drooling težave s slinjenjem (a lot of saliva) Ko se enkrat prebudim, etting težko back to ponovno sleep once zaspim awake Sem I am pozabljiv/a forgetful Imam I have napade bouts of bruhanja vomiting or ali feeling občutek sick slabosti (nausea) redness I have difficulty remembering names, I have constipation numbers, events ring the day I have diarrhoea Other:.. off at inappropriate moments I have an upset stomach... Other:.... Movement Imam I have jutranjo early morning okorelost stiffness I have stiffness (Rigidity) I have shaking (Tremor) I have slowness of movement rest I have decreased/no ability to move m things I used to enjoy involuntary movements (Dyskinesias). I have impaired balance/falling Občutim tesnobo in htened prestrašenost/paniko or panicky I have a change in posture I have difficulty speaking I have small handwriting (Micrographia) Imam Other: drobno... pisavo (mikrografijo). Pain Other Non Motor Symptoms I feel light-headed/dizzy when standing v prstih, gležnjih, zapestju in zbujajo Imam from občutek a lying omotičnosti position ob vstajanju iz I fall due to fainting/blackouts Za vsak simptom ocenite, kako vas obremenjuje I notice a change in my ability to smell/taste I notice a change in weight (not due to change in diet) Imam spremenjeno telesno na težo lestvici (ne zaradi diete) od Ponoči se do zbujam zaradi, uriniranja kjer je pomen Imam bolečine pri nehotenih na gibih (zgibkih lestvici ali diskinezijah) I have excessive sweating Prekomerno I see/hear se things potim that are not there Imam Other: občutek,.. da vidim ali slišim stvari, ki niso resnične naslednji: = nikoli = občasno = včasih = pogosto = vedno Mapa dobrega Parkinson s počutja Well-Being pri Parkinsonovi Map TM bolezni DATE: (DD/MM/YY) Circle Obkrožite the number številko, that ki best najbolje reflects opisuje your vaše well-being počutje. Za Never vsak simptom Occasionally lestvici Sometimes od do ocenite, Often kako Always vas obremenjuje. Na lestvici pomeni nikoli občasno včasih pogosto vedno nja turbances falling asleep at night Attention/Memory Med I am aktivnostmi unable to concentrate se ne morem during osredotočiti activities Digestion and the Gut Imam I have težave difficulty s požiranjem swallowing staying asleep Govorim I have upočasnjeno slowness of speech Imam I dribbling/drooling težave s slinjenjem (a lot of saliva) udim, getting težko back to ponovno sleep once zaspim awake tiredness Sem I am pozabljiv/a forgetful I have difficulty remembering names, Imam I have napade bouts of bruhanja vomiting or ali feeling občutek sick slabosti (nausea) I have constipation n/a uring the day numbers, events I have diarrhoea ujenost Other:.. ze off at inappropriate moments I have an upset stomach pan/a ob neprimernem času... Other: Movement Imam I have jutranjo early morning okorelost stiffness Občutim I have stiffness togost (Rigidity) e Se I have tresem shaking (Tremor) za stvari Gibljem I have slowness se upočasnjeno of movement terest oljstva pri zadevah, pri Gibljem I have decreased/no manj/ne ability morem to se move gibati žival rom things I used to enjoy Imam involuntary nehotene movements gibe (zgibke (Dyskinesias). ali diskinezije) no Imam I have težave impaired z ravnotežjem/padci balance/falling n ghtened prestrašenost/paniko or panicky Imam I have spremenjeno a change in posture držo a Imam I have težave difficulty pri speaking govoru... I have small handwriting (Micrographia) Other:.... Pain n Motor Symptoms Številke, ki ste jih obkrožili, povežite v linije. To bo ustvarilo vzorec, ki bo prikazal vizualni zapis vašega trenutnega počutja. Najbolj The aspect se I elim want osredotočiti focus na on the most is Sleep Motnje disturbances spanja Attention/Memory Digestion Prebavo and the Gut Movement Pain Bolečino Bladder Mehur in and spolno Sexual funkcijo Function Other Druge Non-Motor nemotorične Symptoms simptome Moods Razpolo enje The three most important questions Tri najbolj pomembna vprašanja, ki jih to ask my care team are: elim zastaviti skrbnikom Mapa dobrega Parkinson s po cutja Well-Being pri Parkinsonovi Map TM bolezni Ali imam na voljo dovolj časa, da vprašam vse, kar me zanima? da ne supporting podpira communication komunikacijo v of povezavi my Parkinson s z boleznijo I am Za taking Parkinsonovo the following bolezen medications Parkinson's jemljem slede medication ca zdravila Levodopa + benserazide/madopar + benserazid/madopar Levodopa + benserazide/madopar + karbidopa/duodopa CR Levodopa Levodopa + carbidopa/caramet + karbidopa/nakom CR Levodopa Levodopa + carbidopa/duodopa + karbidopa + entakapon/stalevo Levodopa + carbidopa/sinemet Levodopa Bromokriptin/Bromergon + carbidopa/sinemet CR Levodopa + carbidopa/half Sinemet Kabergolin/Dostinex Levodopa + carbidopa + entacapone/stalevo Pramipeksol/Mirapexin Pramipeksol/Mirapexin PR Bromocriptine/Parlodel Cabergoline/Cabaser Ropinirol/Requip Pergolide/Celance Ropinirol/Requip-Modulab Pramipexole/Mirapexin Rotigotin/Neupro Pramipexole/Mirapexin Apomorfin/APO PR Ropinirole/Requip Ropinirole/Requip XL Rotigotine/Neupro Apomorphine/APO-go PEN Zdravila brez recepta (npr. aspirin) Apomorphine/APO-go PFS Rasagiline/Azilect Razagilin/Azilect Selegiline/Eldepryl Selegilin/Jumex Selegiline/Zelapar Entakapon/Comtan Entacapone/Comtess Tolkapon/Tasmar Tolcapone/Tasmar Amantadin/Symmetrel Amantadine/Symmetrel Orphenadrine/Biorphen Orphenadrine/Disipal Procyclidine/Arpicolin Procyclidine/Kemadrin Trihexyphenidyl (benzhexol)/broflex Source: treatments_and_therapies/drug_treatments_of_parkinsons.aspx ir http //.parkinsons.org.uk/advice/publications/ treatments_and_therapies/drug_treatments_of_parkinsons.aspx.... Označite simptom, ki vas najbolj obremenjuje.... Pripravite seznam treh najbolj pomembnih vprašanj, ki jih... želite zastaviti skrbnikom. Označite zdravila, s katerimi ste zdravljeni v tem obdobju. Morda boste želeli izpostaviti nova zdravila, ki ste jih prejeli ob zadnjem posvetu (vključno z zdravili brez recepta, npr. aspirin). Izpolnjeno Mapo dobrega počutja pri Parkinsonovi bolezni prinesite s seboj na pregled in se posvetujte s skrbniki.
4 Obkrožite številko, ki najbolje opisuje vaše počutje. Za vsak simptom na lestvici od do ocenite, kako vas obremenjuje. Na lestvici pomeni nikoli občasno včasih pogosto vedno..
5 Obkrožite številko, ki najbolje opisuje vaše počutje. Za vsak simptom na lestvici od do ocenite, kako vas obremenjuje. Na lestvici pomeni nikoli občasno včasih pogosto vedno..
6 Obkrožite številko, ki najbolje opisuje vaše počutje. Za vsak simptom na lestvici od do ocenite, kako vas obremenjuje. Na lestvici pomeni nikoli občasno včasih pogosto vedno..
7 Obkrožite številko, ki najbolje opisuje vaše počutje. Za vsak simptom na lestvici od do ocenite, kako vas obremenjuje. Na lestvici pomeni nikoli občasno včasih pogosto vedno..
8 Obkrožite številko, ki najbolje opisuje vaše počutje. Za vsak simptom na lestvici od do ocenite, kako vas obremenjuje. Na lestvici pomeni nikoli občasno včasih pogosto vedno..
9 Obkrožite številko, ki najbolje opisuje vaše počutje. Za vsak simptom na lestvici od do ocenite, kako vas obremenjuje. Na lestvici pomeni nikoli občasno včasih pogosto vedno..
10 Obkrožite številko, ki najbolje opisuje vaše počutje. Za vsak simptom na lestvici od do ocenite, kako vas obremenjuje. Na lestvici pomeni nikoli občasno včasih pogosto vedno..
11 Obkrožite številko, ki najbolje opisuje vaše počutje. Za vsak simptom na lestvici od do ocenite, kako vas obremenjuje. Na lestvici pomeni nikoli občasno včasih pogosto vedno..
12 Obkrožite številko, ki najbolje opisuje vaše počutje. Za vsak simptom na lestvici od do ocenite, kako vas obremenjuje. Na lestvici pomeni nikoli občasno včasih pogosto vedno..
13 Obkrožite številko, ki najbolje opisuje vaše počutje. Za vsak simptom na lestvici od do ocenite, kako vas obremenjuje. Na lestvici pomeni nikoli občasno včasih pogosto vedno..
14 Obkrožite številko, ki najbolje opisuje vaše počutje. Za vsak simptom na lestvici od do ocenite, kako vas obremenjuje. Na lestvici pomeni nikoli občasno včasih pogosto vedno..
15 Obkrožite številko, ki najbolje opisuje vaše počutje. Za vsak simptom na lestvici od do ocenite, kako vas obremenjuje. Na lestvici pomeni nikoli občasno včasih pogosto vedno..
16 Obkrožite številko, ki najbolje opisuje vaše počutje. Za vsak simptom na lestvici od do ocenite, kako vas obremenjuje. Na lestvici pomeni nikoli občasno včasih pogosto vedno..
17 Obkrožite številko, ki najbolje opisuje vaše počutje. Za vsak simptom na lestvici od do ocenite, kako vas obremenjuje. Na lestvici pomeni nikoli občasno včasih pogosto vedno..
18 Obkrožite številko, ki najbolje opisuje vaše počutje. Za vsak simptom na lestvici od do ocenite, kako vas obremenjuje. Na lestvici pomeni nikoli občasno včasih pogosto vedno..
19 Obkrožite številko, ki najbolje opisuje vaše počutje. Za vsak simptom na lestvici od do ocenite, kako vas obremenjuje. Na lestvici pomeni nikoli občasno včasih pogosto vedno..
20 podpira komunikacijo v povezavi z boleznijo Najbolj se želim osredotočiti na: Za Parkinsonovo bolezen Motnje spanja Prebavo Bolečino Mehur in spolno funkcijo Druge nemotorične simptome Tri najbolj pomembna vprašanja, ki jih želim zastaviti skrbnikom: jemljem sledeča zdravila Levodopa + benserazid/madopar Levodopa + karbidopa/duodopa Levodopa + karbidopa/nakom Levodopa + karbidopa + entakapon/stalevo Bromokriptin/Bromergon Kabergolin/Dostinex Pramipeksol/Mirapexin Ropinirol/Requip Ropinirol/Requip-Modutab Rotigotin/Neupro Apomorfin/APO Razagilin/Azilect Selegilin/Jumex Entakapon/Comtan Tolkapon/Tasmar Amantadin/Symmetrel Zdravila brez recepta (npr. aspirin) Vir: treatments_and_therapies/drug_treatments_of_parkinsons.aspx Ali imam na voljo dovolj časa, da vprašam vse, kar me zanima? da ne
21 Sklad za zdravljenje Parkinsonove bolezni (CPT) Sklad za zdravljenje Parkinsonove bolezni (Cure Parkinson s Trust CPT) so leta 5 ustanovili štirje ljudje s Parkinsonovo boleznijo, da bi pomagali pri odkrivanju zdravljenja te hude bolezni. CPT prepoznava, ovrednoti in sponzorira projekte ter deluje kot povezovalec v raziskavah med znanstveniki in investitorji raziskav. CPT pomaga pri razvoju inovativnega zdravljenja, ki se osredotoča na različne terapevtske možnosti in vizijo, da je Parkinsonovo bolezen možno ustaviti in preprečiti. CPT odbor gosti znanstvene forume, ki združujejo znanstvenike in raziskovalce s področja Parkinsonove bolezni in poudarja znanstvene dosežke na tem področju. Zelo je zainteresiran za samoocenjevanje, ki je ključnega pomena za obveščanje in oblikovanje ustreznih ukrepov pri izidih v klinični praksi. Ključno vlogo v tej organizaciji imajo ljudje s Parkinsonovo boleznijo. Odbor ima kar tri člane s to boleznijo: predsednika, soustanovitelja in pravobranilca organizacije. Vsi člani pomagajo opredeljevati strategijo in zagotavljajo, da so upravičenci v središču vseh aktivnosti. The Cure Parkinson s Trust St Clement s Court London ECN 7HB Evropsko združenje za Parkinsonovo bolezen (EPDA) Je edina evropska krovna organizacija za Parkinsonovo bolezen. EPDA je nepolitična, neverska in neprofitna organizacija. Združuje 5 članic, ki so zagovornice pravic in potreb več kot, milijona ljudi s Parkinsonovo boleznijo in njihovih svojcev. Vizija EPDA je, da se bolnikom omogoči polno življenje. Z ozaveščanjem si organizacija prizadeva za ozdravitev te bolezni in želi doseči zmanjševanje neenakosti zdravljenja in vodenja Parkinsonove bolezni v Evropi. Northumberland Avenue Trafalgar Square London WCN 5BW United Kingdom Tel.: + () Faks: + () E-naslov: info@epda.eu.com Federación Española de Párkinson Paseo Reina Cristina, 8 ºB 8 Madrid Tel.: Društvo Trepetlika Društvo Trepetlika je društvo bolnikov s parkinsonizmom in drugimi ekstrapiramidnimi motnjami. Pod tem imenom deluje že let kot samostojna, prostovoljna oblika združevanja občanov s strokovno pomočjo pristojne zdravstvene in skrbstvene službe. Društvo ima sedež v Ljubljani, svoje dejavnosti pa je razširilo tudi na Maribor, Celje, Kranj, Novo Gorico in Novo mesto. Društvo Trepetlika ima 6 članov, tako bolnikov kot tudi njihovih svojcev. Poleg bolnikov s Parkinsonovo boleznijo so v društvo vključeni tudi bolniki z distonijami in Huntingtonovo boleznijo. Poleg združevanja ljudi s podobnimi zdravstvenimi težavami je glavni namen društva predvsem izobraževanje bolnikov in njihovih svojcev o novostih s področja zdravljenja ter seznanjanje z načini lajšanja življenja bolnikov. Društvo najtesneje sodeluje s strokovnjaki s področja zdravljenja in obravnave Parkinsonove bolezni, predvsem z vidika organiziranja pogostih poljudno strokovnih srečanj in delavnic. Člani društva se srečujejo tudi na rekreativnih dejavnostih, na telovadbi oziroma fizioterapiji, vodni masaži in plavanju, ob plesu in glasbi, na enodnevnih izletih, ob tradicionalnih prednovoletnih srečanjih ali pa na neformalnih pogovorih ter druženju. Regionalne enote organizirajo rekreacijo tudi v Termah Zreče, Termah Krka Strunjan ali v Novi Gorici, Termah Krka Šmarješke toplice in Termah Snovik. Društvo je včlanjeno v Evropsko zvezo bolnikov s Parkinsonovo boleznijo (EPDA). Društvo Trepetlika Šišenska, Ljubljana Tel: () 55 9 Faks: () 55 9 E-naslov: drustvo_trepetlika@t-.si
22 Beležke
23 Beležke
24 Mapo dobrega počutja so podprli: Razvito v sodelovanju s podjetjem UCB Pharma S.A. Vse pravice so pridržane UCB Blagovne znamke ali so v zasebni lasti. Mapa dobrega počutja pri Parkinsonovi bolezni podpira komunikacijo pri Parkinsonovi bolezni Razvito v sodelovanju s podjetjem UCB Pharma S.A. Vse pravice pridržane UCB
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