Ku-32, Ngithole ukuthi ngine-MS. Nakhu Engikwenzile Ezinsukwini Ezalandela.

-Delile

• Ufunde kanjani okokuqala ukuthi une-MS?
• Yiziphi izinyathelo ezilandelayo?
• Ngabe ubujwayelene ne-MS lapho uthola ukutholakala kwakho?
• Yiziphi izinselelo ezinkulu ekuqaleni, futhi wabhekana kanjani nazo?
• Ngabe uzizwe sengathi unezinsizakusebenza ezanele zokubhekana ne-MS, ngokomzimba nangokwengqondo?
• Yayiyini imithombo yakho eyinhloko yokuholwa nokusekelwa ngalezo zinsuku zokuqala?
• Ngenkathi ucelwa ukuthi uthintane nohlelo lokusebenza lwe-MS Buddy, yiziphi izici obucabanga ukuthi zibaluleke kakhulu kubathuthukisi ukuthi balunge?
• Sekudlule iminyaka eyishumi selokhu kwatholakala ukuthi unesifo esinjani. Yini ekushukumisela ukuba ulwe impi ye-MS?
• Yini eyodwa nge-MS ofisa ukuthi abanye abantu bayiqonde?

Bangaphezu kuka-2.3 million abantu emhlabeni abaphila ne-multiple sclerosis. Futhi iningi labo lathola ukuxilongwa phakathi kweminyaka engama-20 nengama-40. Ngakho-ke, kunjani ukuthola ukuxilongwa usemncane lapho abantu abaningi beqala imisebenzi, beshada, futhi beqala imindeni?

Kwabaningi, izinsuku zokuqala namasonto ngemuva kokutholakala kwe-MS akuyona nje into eshaqisayo ohlelweni, kepha inkambo yokuphahlazeka ngesimo nomhlaba ababengazi ukuthi ukhona.

URay Walker uyakwazi lokhu mathupha. URay uthole ukuxilongwa kwe-MS ebuyela emuva kabusha ngo-2004 eneminyaka engama-32. Uphinde abe ngumphathi womkhiqizo lapha eHealthline futhi ubambe iqhaza elikhulu ekubonisaneni ne-MS Buddy, uhlelo lokusebenza lwe-iPhone ne-Android oluxhuma abantu I-MS komunye nomunye ukuthola izeluleko, ukusekelwa, nokuningi.

Sahlala phansi saxoxa noRay ngokuhlangenwe nakho kwakhe ngalezo zinyanga ezimbalwa zokuqala kulandela ukuxilongwa kwakhe nokuthi kungani ukuxhaswa kontanga kubaluleke kakhulu kunoma ngubani ophila nesifo esingelapheki.

Ufunde kanjani okokuqala ukuthi une-MS?

Ngangisesigabeni segalufu lapho ngithola ucingo luvela ehhovisi likadokotela wami. Umhlengikazi wathi, “Sawubona Raymond, ngikushayela ukuthi uzohlela ukuthi uthinte umgogodla wakho.” Ngaphambi kwalokho, ngangisanda kuya kudokotela ngoba nganginokundindizela ezandleni nasezinyaweni izinsuku ezimbalwa. Udokotela unginikeze kanye futhi angizwanga lutho kuze kube yilapho ucingo lomgogodla lubiza. Izinto ezethusayo.

Yiziphi izinyathelo ezilandelayo?

Akukho sivivinyo esisodwa se-MS. Udlula ochungechungeni lwezivivinyo ezigcwele futhi, uma eziningana zazo zikhona, udokotela wakho angaqinisekisa ukuxilongwa. Ngoba akekho uvivinyo olulodwa oluthi, "Yebo, une-MS," odokotela bakuthatha kancane.

Cishe kwakungamasonto ambalwa ngaphambi kokuba udokotela athi ngine-MS. Ngenze ompompi ababili bomgogodla, ukuhlolwa kwamehlo okungahle kwenzeke (okulinganisa ukuthi okubonayo kukwenza ngokushesha kangakanani ebuchosheni bakho), bese kuba ama-MRIs minyaka yonke.

Ngabe ubujwayelene ne-MS lapho uthola ukutholakala kwakho?

Bengingekho nhlobo. Ngangazi into eyodwa kuphela, ukuthi u-Annette Funicello (umlingisi ovela kuma-50s) wayene-MS. Bengingazi nokuthi i-MS isho ukuthini. Ngemuva kokuzwa ukuthi kungenzeka, ngaqala ukufunda ngokushesha. Ngeshwa, uthola kuphela izimpawu ezimbi kakhulu namathuba.

Yiziphi izinselelo ezinkulu ekuqaleni, futhi wabhekana kanjani nazo?

Enye yezinselelo ezinkulu lapho kutholakala ukuthi ngangihlunga lonke ulwazi olutholakalayo. Kuningi kabi ongakufunda ngesimo esinjenge-MS. Awukwazi ukubikezela inkambo yayo, futhi ayelapheki.

Ngabe uzizwe sengathi unezinsizakusebenza ezanele zokubhekana ne-MS, ngokomzimba nangokwengqondo?

Bengingenakho ukukhetha, bekufanele ngibhekane nakho. Ngangisanda kushada, ngididekile, futhi ngikhuluma ngokusobala, ngesaba kancane. Ekuqaleni, konke ubuhlungu, ubuhlungu, noma imizwa yi-MS. Ngemuva kwalokho, iminyaka embalwa, akukho lutho oluyi-MS. Kuyi-roller coaster engokomzwelo.

Yayiyini imithombo yakho eyinhloko yokuholwa nokusekelwa ngalezo zinsuku zokuqala?

Unkosikazi wami omusha wayengisekela. Izincwadi kanye ne-inthanethi nakho bekungumthombo omkhulu wolwazi. Ngincike kakhulu kuNational Multiple Sclerosis Society ekuqaleni.

Okwezincwadi, ngaqala ukufunda ama-biographies mayelana nohambo lwabantu. Ngancika ezinkanyezini ekuqaleni: URichard Cohen (umyeni kaMeredith Vieira), uMontel Williams, noDavid Lander bonke batholwa ngaleso sikhathi. Benginelukuluku lokuthi ngabe i-MS ibathinta kanjani nohambo lwabo.

Ngenkathi ucelwa ukuthi uthintane nohlelo lokusebenza lwe-MS Buddy, yiziphi izici obucabanga ukuthi zibaluleke kakhulu kubathuthukisi ukuthi balunge?

Kwakubalulekile kimi ukuthi bakhuthaze ubudlelwano bohlobo lwabeluleki. Lapho uqala ukutholakala, ulahlekile futhi udidekile. Njengoba ngishilo phambilini, kunemininingwane eminingi laphaya, ugcina ngokuminza.

Ngokwami ​​bengizothanda ukuthi umakadebona we-MS angitshele ukuthi konke kuzolunga. Futhi omakadebona be-MS banolwazi oluningi abangabelana ngalo.

Sekudlule iminyaka eyishumi selokhu kwatholakala ukuthi unesifo esinjani. Yini ekushukumisela ukuba ulwe impi ye-MS?

Kuzwakala kuyindida, kepha zingane zami.

Yini eyodwa nge-MS ofisa ukuthi abanye abantu bayiqonde?

Ukuthi ngibuthakathaka kwesinye isikhathi, lokho akusho ukuthi nami angikwazi ukuba namandla.

Cishe abantu abangama-200 batholakala bene-MS masonto onke e-United States kuphela. Izinhlelo zokusebenza, izinkundla, imicimbi, namaqembu ezokuxhumana axhumanisa abantu abane-MS komunye nomunye angabaluleka kunoma ngubani ofuna izimpendulo, izeluleko, noma umuntu nje ongakhuluma naye.

Unayo i-MS? Bheka umphakathi wethu we-Living with MS ku-Facebook bese uxhuma nalawa ma-blogger aphezulu we-MS!