Cov Me Nyuam Nyob Nrog MS, Ib Yam nkaus: Ib Tsev Neeg Zaj Dab Neeg

Zoo Siab

• Kev mus rau kev kuaj mob
• Pib kev kho mob
• Cov lus qhia rau lwm tsev neeg
• Nrhiav kev txhawb nqa hauv zej zog MS
• Nrhiav txoj hauv kev ntxiv kev lom zem
• Ua lub neej zoo kev xaiv tsev neeg raws li tsev neeg
• Ua tau pab thiab sib koom ua ke
• Cov nqa mus

Hauv Valdez chav tsev neeg nyob muaj ib lub rooj piled siab nrog cov ntim ntawm cov yeeb yuj gooey tshuaj muaj yees. Ua qhov "slime" no yog 7-xyoo-laus Aaliyah nyiam nyiam. Nws ua ib tus tshiab tawm txhua hnub, ntxiv ci thiab sim rau xim sib txawv.

Aaliyah piav qhia tias "nws zoo li putty tab sis nws nthuav," Aaliyah piav qhia.

Lub goo tau txais txhua qhov chaw thiab tsav Aaliyah txiv, Taylor, vwm me ntsis. Cov tsev neeg tau khiav tawm ntawm Tupperware cov khoom: lawv muaj cov dej ntim puv. Tab sis nws tsis qhia nws kom tsum. Nws xav tias qhov kev ua ub ua no tuaj yeem kho nws tus kheej vim tias nws tau txais Aaliyah kom mloog zoo thiab ua si nrog nws ob txhais tes.

Thaum muaj hnub nyoog 6 xyoo, Aaliyah tau kuaj mob nrog rau ntau yam sclerosis (MS). Tam sim no, nws niam nws txiv, Carmen thiab Taylor, ua txhua yam lawv ua tau kom Aaliyah nyob zoo thiab muaj kev zoo siab, muaj menyuam yaus. Qhov ntawd suav nrog kev noj Aaliyah tawm rau kev lom zem ua si tom qab nws MS kev kho mob thiab cia nws cov khoom siv tes ua ntawm cov khoom plig.

MS yog ib qho mob uas feem ntau tsis cuam tshuam nrog menyuam yaus. Cov neeg feem coob uas nyob nrog MS tau kuaj pom muaj hnub nyoog thaj tsam 20 txog 50, raws li National MS Society. Tab sis MS cuam tshuam me nyuam ntau dua li qhov koj xav. Qhov tseeb tiag, Cleveland Clinic sau cia tias MS thaum yau yuav sawv cev txog 10 feem pua ​​ntawm tag nrho cov mob no.

“Thaum kuv tau hais tias nws muaj MS Kuv xav tsis thoob. Kuv zoo li, 'Tsis yog, cov menyuam tsis tau txais MS.' Nws nyuaj heev, "Carmen hais rau Healthline.

Tias yog vim li cas Carmen tsim lub Instagram rau Aaliyah los txhawb kev paub txog me nyuam yaus MS. Ntawm tus as khauj, nws qhia cov dab neeg txog Aaliyah cov tsos mob, kev kho mob, thiab lub neej rau ib hnub.

Nws tau hais tias "Kuv tau nyob ib leeg xyoo no xav tias kuv yog tib tug neeg hauv ntiaj teb uas muaj tus ntxhais no nrog MS," nws hais. "Yog tias kuv tuaj yeem pab lwm tus niam txiv, lwm tus niam, kuv zoo siab tshaj."

Lub xyoo txij li Aaliyah txoj kev kuaj mob tau muaj kev nyuaj rau Aaliyah thiab nws tsev neeg. Lawv tab tom qhia lawv zaj dab neeg kom nthuav dav kev paub txog qhov tseeb ntawm tus me nyuam MS.

Kev mus rau kev kuaj mob

Aaliyah thawj cov tsos mob yog kiv taub hau, tab sis ntau cov tsos mob tshwm sim dhau sijhawm. Nws niam nws txiv pom tias nws zoo li tshee thaum lawv yaim nws thaum sawv ntxov. Tom qab ntawd, muaj ib hnub nyob hauv lub tiaj ua si, Aaliyah poob. Carmen pom tias nws tau rub nws txoj cai sab xis. Lawv tau mus rau kev teem sijhawm mus kho mob thiab tus kws kho mob tau hais tias Aaliyah tej zaum yuav muaj pob me me.

Aaliyah nres tsis rub nws ko taw, tab sis dhau ob lub hlis, lwm cov tsos mob tshwm. Tus poj niam ntawd nws pib dawm taw ntawm tus ntaiv. Carmen pom tias Aaliyah ob txhais tes tshee tshee thiab nws tau sau ntawv nyuaj. Tus kws qhia ntawv piav txog lub sijhawm thaum Aaliyah tshwm sim tsis zoo, zoo li nws tsis paub tias nws nyob qhov twg. Tib hnub ntawd, nws niam nws txiv tau coj nws mus ntsib tus kws kho mob yaus.

Aaliyah tus kws kho mob pom zoo kuaj mob neurological - tab sis nws yuav siv sijhawm ib lub lim tiam los teem sijhawm. Carmen thiab Taylor tau pom zoo, tab sis hais tias yog tias cov tsos mob hnyav zuj zus ntxiv, lawv yuav mus ncaj qha rau tsev kho mob.

Lub sijhawm ntawd, Aaliyah pib poob nws qhov sib npaug thiab lub caij nplooj zeeg, thiab nws tau yws yws ntawm kev mob taub hau. TAYLOR hais tias: "Puas hlwb, tsis yog nws tus kheej." Lawv coj nws mus rau tus ER.

Nyob hauv tsev kho mob, cov kws kho mob tau xaj kuaj raws li Aaliyah cov tsos mob hnyav zuj zus. Txhua yam ntawm nws txoj kev ntsuam xyuas tau tshwm sim zoo li qub, kom txog thaum lawv tau ua tiav MRI scan ntawm nws lub paj hlwb uas tau qhia tawm qhov chaw mob. Tus kws kho mob hlwb tau hais rau lawv tias Aaliyah feem ntau muaj MS.

TAYLOR hais tias, “Peb tau poob ntsej muag. Nws yog qhov zoo li lom zem. Tag nrho tsev neeg tuaj. Nws tsuas yog hnub phem ntawm peb lub neej. "

Tom qab lawv coj Aaliyah los tsev los ntawm tsev kho mob, Taylor tau hais tias lawv poob zoo. Carmen siv sijhawm tshawb nrhiav cov ntaub ntawv hauv is taws nem. Taylor tau hais rau Healthline hais tias, "Peb tau poob siab hauv txoj kev ntxhov siab tam sim ntawd," “Peb tau tshiab rau qhov no. Peb tsis muaj kev paub txog. "

Ob lub hlis tom qab, tom qab kuaj MRI dua, Aaliyah's MS tus mob tau lees paub thiab nws raug xa mus rau Dr. Gregory Aaen, tus kws tshaj lij ntawm Loma Linda University Medical Center. Nws tham nrog tsev neeg txog lawv cov kev xaiv, thiab tau muab cov ntawv me me hais txog cov tshuaj muaj siv.

Dr. Aaen pom zoo tias Aaliyah pib kho tam sim ntawd txhawm rau maj mam hloov kho tus mob. Tab sis nws kuj tau hais rau lawv tias lawv tuaj yeem tos. Nws tau Aaliyah tuaj yeem mus ntev ntev yam tsis muaj kev tawm tsam.

Tsev neeg txiav txim siab tos. Qhov tshwm sim rau cov kev mob tshwm sim tsis zoo rau qhov tseem ceeb rau ib tug neeg hluas li Aaliyah.

Carmen tshawb nrhiav kev kho kom rov zoo uas yuav pab tau. Tau ntau lub hlis, Aaliyah zoo li nws ua tsis tau zoo. Taylor tau hais tias, "Peb muaj kev cia siab."

Pib kev kho mob

Txog yim lub hlis tom qab, Aaliyah yws txog “pom ob yam ntawm txhua yam,” thiab tsev neeg tau rov qab mus rau tsev kho mob. Nws tau kuaj pom tias optic neuritis, tus yam ntxwv ntawm MS nyob rau hauv uas cov leeg ntshav optic yuav mob. Lub paj hlwb tsom pom pom mob tshiab.

Dr. Aaen hais kom tsev neeg pib Aaliyah rau kev kho mob. Taylor rov qab hais txog tus kws kho mob tau hais tias Aaliyah yuav muaj txoj sia nyob ntev thiab yog txhua yam zoo, tsuav yog lawv pib tua tus kabmob. "Peb tau siv nws lub zog thiab hais tias, 'OK, peb yuav tsum ua qhov no.'"

Tus kws kho mob pom zoo noj tshuaj uas yuav tsum tau Aaliyah kom tau txais qhov mob 7-teev ib zaug ib lub lim tiam rau plaub lub lis piam. Ua ntej thawj zaug kev kho mob, cov kws tu neeg mob muab Carmen thiab Taylor nrog kev tshaj tawm txog kev pheej hmoo thiab phiv.

"Nws tau tsuas yog txaus ntshai vim hais tias ntawm cov kev mob tshwm sim los yog tej yam uas tuaj yeem tshwm sim," Taylor hais. "Peb los kua muag, ntawm peb ob leeg."

Taylor tau hais tias Aaliyah quaj thaum lub sijhawm kho mob, tab sis Aaliyah tsis nco qab tias tau chim siab. Nws nco qab tias ntau lub sijhawm nws xav kom nws txiv, lossis nws niam, lossis nws tus muam puag nws tes - thiab lawv tau ua. Nws tseem nco qab tias nws tau mus ua si hauv tsev thiab caij tsheb ciav hlau hauv chav tos.

Ntau tshaj li ib hlis tom qab, Aaliyah ua tau zoo. Taylor tau hais rau Healthline. Thaum sawv ntxov, nws tseem ceeb toom me ntsis ntawm kev tshee, tab sis hais ntxiv tias "thoob plaws ib hnub, nws ua tau zoo heev."

Cov lus qhia rau lwm tsev neeg

Los ntawm cov sijhawm nyuaj txij li Aaliyah txoj kev kuaj mob, Valdez tsev neeg tau pom txoj hauv kev nyob ruaj khov. Carmen hais rau Healthline hais tias "Peb nyias txawv nyias, peb hajyam tau zoo tshaj qub," Rau cov tsev neeg ntsib MS kuaj mob, Carmen thiab Taylor vam tias lawv tus kheej qhov kev paub dhau los thiab cov lus qhia yog qhov pab tau.

Nrhiav kev txhawb nqa hauv zej zog MS

Txij li thaum me nyuam yaus MS yog qhov tsis tshua muaj tshwm sim, Carmen tau hais rau Healthline tias thaum pib nws nyuaj nrhiav kev pab. Tab sis kev koom rau hauv qhov dav MS zej zog tau pab. Tsis ntev los no, tsev neeg tau koom nrog kev taug kev MS: Greater Los Angeles.

“Coob leej neeg nyob ntawd nrog cov vibes zoo. Lub zog, tag nrho cov huab cua nyob zoo, ”Carmen hais. "Peb txhua tus nyiam nws li ib tsev neeg."

Kev tawm xov xwm kuj yog qhov chaw txhawb nqa. Los ntawm Instagram, Carmen tau txuas nrog lwm cov niam txiv uas muaj menyuam yaus nrog MS. Lawv sib qhia cov ntaub ntawv hais txog kev kho mob thiab seb lawv cov menyuam ua li cas.

Nrhiav txoj hauv kev ntxiv kev lom zem

Thaum Aaliyah muaj sijhawm teem rau kev kuaj mob lossis kev kho mob, nws niam thiab txiv nrhiav txoj hauv kev ntxiv kev lom zem ntxiv rau hnub ntawd. Lawv yuav tawm mus noj mov lossis cia nws xaiv cov khoom ua si tshiab. "Peb ib txwm sim ua kev lom zem rau nws," Carmen hais.

Txhawm rau ntxiv kev lom zem thiab siv tau, Taylor tau yuav ib lub tsheb laij teb uas Aaliyah thiab nws tus tij laug plaub xyoos tuaj yeem caij tsheb ua ke. Nws yuav nws nrog Taug Kev: MS hauv lub siab, nyob rau hauv rooj plaub Aaliyah ua rau nws sab sab lossis kiv taub hau, tab sis nws xav tias lawv yuav siv nws rau lwm qhov kev tawm mus. Nws tau hnav nws nrog qhov ntxoov ntxoo los tiv thaiv cov me nyuam los ntawm lub hnub.

Aaliyah tseem muaj cov khoom ua si tshiab uas nws tau txais los ntawm Mr. Oscar Monkey, lub koom haum non-profit tau mob siab rau pab cov menyuam nrog MS sib txuas nrog lwm tus. Lub koom haum muab "MS liab," tseem hu ua Oscar's cov phooj ywg, rau txhua tus menyuam nrog MS uas xav tau ib tus. Aaliyah muab nws tis npe hu ua Hannah Hannah. Nws nyiam ua las voos nrog nws thiab pub nws noj txiv av, Hannah cov zaub mov nyiam.

Ua lub neej zoo kev xaiv tsev neeg raws li tsev neeg

Txawm hais tias tsis muaj kev noj haus tshwj xeeb rau MS, kev noj zaub mov zoo thiab kev ua neej muaj kev noj qab haus huv tuaj yeem pab tau rau txhua tus neeg uas muaj mob ntev - nrog rau cov menyuam.

Rau tsev neeg Valdez, qhov no txhais tau tias yuav tsum tsis txhob noj zaub mov nrawm thiab ntxiv cov khoom noj muaj txiaj ntsig rau kev ua zaub mov noj. Carmen hais tias, "Kuv muaj rau tus menyuam yaus thiab lawv puav leej keej, yog li kuv zais zaub nyob rau ntawd." Nws sim cov zaub ntsuab zoo li zaub ntsuab hauv cov zaub mov, thiab ntxiv cov txuj lom zoo li qhiav thiab turmeric. Lawv kuj tau pib noj quinoa es tsis txhob ua mov.

Ua tau pab thiab sib koom ua ke

Taylor thiab Carmen tau sau tseg tias lawv muaj lub zog sib txawv thaum nws los tswj kev mob ntawm Aaliyah tus mob. Nkawd ob leeg tau siv sijhawm nrog Aaliyah nyob hauv tsev kho mob thiab thaum teem mus ntsib kws kho mob, tab sis Taylor feem ntau yog niam txiv nyob ntawm nws ib sab thaum lub sijhawm kuaj mob nyuaj. Piv txwv li, nws nplij nws yog tias nws ntshai ua ntej nws MRIs. Carmen, ntawm qhov kev koom tes, yog kev koom tes nrog kev tshawb fawb ntau dua MS, sib txuas lus nrog lwm tsev neeg, thiab nthuav txog kev paub txog tus mob. TAYLOR hais tias "Peb ua tiav zoo rau txhua qhov kev sib ntaus sib tua," Taylor hais.

Kev mob Aaliyah tseem coj qee yam pauv hloov rau nws tus nus. Txoj cai tom qab nws kuaj pom, Taylor hais kom lawv kho nws kom zoo thiab kom ua siab ntev rau nws. Tom qab ntawd, cov kws tshaj lij tau qhia cov tsev neeg kom saib xyuas Aaliyah zoo li lawv ib txwm ua, kom nws thiaj li tsis loj tuaj ntawm kev tiv thaiv. Tsev neeg tseem tab tom nrhiav kev hloov pauv, tab sis Carmen tau hais tias tag nrho, lawv cov menyuam sib ntaus sib tua tsawg dua li yav dhau los. TAYLOR tau ntxiv tias, "Txhua tus tau hais daws nws txawv, tab sis peb sawv daws nrog nws."

Cov nqa mus

"Kuv tsuas xav kom lub ntiaj teb paub tias cov menyuam yaus no tau txais MS," Carmen hais rau Healthline. Ib qho ntawm cov kev sib tw uas tsev neeg tau ntsib xyoo no yog qhov kev xav txog kev rho tawm uas tuaj nrog Aaliyah tus mob. Tab sis kev sib txuas nrog MS zej zog loj dua tau ua qhov sib txawv. Carmen hais tias mus koom Kev Taug Kev: MS tau pab tsev neeg xav tias lawv nyob ib leeg. "Koj pom coob leej ntau tus uas sib ntaus sib tua ib yam li koj, yog li koj muaj zog dua," nws hais ntxiv. "Koj pom txhua yam nyiaj lawv khwv tau, Yog li vam tias ib hnub yuav muaj kev kho tau."

Tamsim no, Taylor hais rau Healthline, "Peb noj ib hnub ib zaug." Lawv tau mob siab rau Aaliyah txoj kev noj qab haus huv, thiab kev noj qab haus huv ntawm nws cov nus muag. TAYLOR hais ntxiv tias "Kuv ua tsaug rau txhua txhua hnub uas peb tau ua ke ua ke,"