Kwiminyaka engama-32, ndafumanisa ukuba ndine-MS. Nantsi into endiyenzileyo kwiintsuku ezalandelayo.

Umxholo

• Uqale njani ukufunda ukuba une-MS?
• Athini amanyathelo alandelayo?
• Ngaba ubuqhelene ne-MS xa ufumana isifo sakho?
• Yeyiphi eyona miceli mngeni mikhulu ekuqaleni, kwaye wahlangabezana njani nayo?
• Ngaba uzive ngathi unezinto ezaneleyo onokuthi ujongane nazo nge-MS, kokubini emzimbeni nasengqondweni?
• Yeyiphi eyona mithombo yakho iphambili yesikhokelo kunye nenkxaso ngezo ntsuku zokuqala?
• Xa wawuceliwe ukuba udibane ne-MS Buddy app, zeziphi iimpawu ocinga ukuba zezona zibalulekileyo kubaphuhlisi ukuze zilunge?
• Sekudlule iminyaka elishumi ukusukela ukuba uxilongiwe. Yintoni ekhuthaza ukuba ulwe umlo we-MS?
• Yintoni into enye malunga ne-MS onqwenela ukuba abanye abantu bayiqonde?

Ngaphezulu kwezigidi ezi-2.3 zabantu kwihlabathi liphela abaphila ne-multiple sclerosis. Kwaye uninzi lwabo lufumene uxilongo oluphakathi kweminyaka engama-20 nama-40. Ke, kunjani ukufumana ukuxilongwa besebancinci xa abantu abaninzi besungula imisebenzi, betshata, kwaye beqala iintsapho?

Kwabaninzi, iintsuku zokuqala kunye neeveki emva kokuxilongwa kwe-MS ayothusi nje kuphela inkqubo, kodwa ikhosi yengozi malunga nemeko kunye nehlabathi ababengazi ukuba likho.

URay Walker uyakwazi oku. URay ufumene uxilongo lokuphinda abuyele kwi-MS ngo-2004 eneminyaka engama-32. Ukwangumphathi wemveliso apha eHealthline kwaye udlale indima enkulu ekubonisaneni ne-MS Buddy, i-iPhone kunye ne-Android app edibanisa abantu I-MS kunye nabanye iingcebiso, inkxaso kunye nokunye.

Siye sahlala phantsi sancokola noRay malunga namava akhe kwezi nyanga zimbalwa zokuqala kulandela ukuxilongwa kwakhe kwaye kutheni inkxaso yoontanga ibaluleke kuye nakubani na ophila nesifo esinganyangekiyo.

Uqale njani ukufunda ukuba une-MS?

Ndaye kwigalufa xa ndafowunelwa yiofisi kagqirha wam. Umongikazi wathi, “Molo Raymond, ndikubizela ukucwangcisa itephu yakho yomqolo.” Ngaphambi koko, ndandivele ndaya kwagqirha kuba ndandinezirhintyelo ezandleni nasezinyaweni iintsuku ezimbalwa. Ugqirha undinike kanye kwaye khange ndive nto de kwempompo yomnqonqo. Izinto ezoyikisayo.

Athini amanyathelo alandelayo?

Akukho vavanyo lwe-MS. Udlula kuthotho lweemvavanyo kwaye, ukuba uninzi lwazo luchanekile, ugqirha wakho unokuqinisekisa isifo. Ngenxa yokuba akukho vavanyo lunye luthi, "Ewe unayo i-MS," oogqirha bayithatha kancinci.

Mhlawumbi bekuziiveki ezimbalwa ngaphambi kokuba ugqirha athi ndine-MS. Ndenze iimpompo ezimbini zomqolo, kuvavanyo lwamehlo olunokubakho (olulinganisa ukuba oko ukubonayo kuyenza ikhawuleze kangakanani kwingqondo yakho), emva koko kwi-MRIs minyaka le.

Ngaba ubuqhelene ne-MS xa ufumana isifo sakho?

Andizange nakanye. Inye kuphela into endiyaziyo, kukuba uAnnette Funicello (umdlali weqonga osuka kwiminyaka yama-50s) wayene-MS. Bendingazi nokuba iMS ithetha ntoni. Emva kokuba ndivile ukuba kunokwenzeka, ndaqala kwangoko ukufunda. Ngelishwa, ufumana kuphela iimpawu ezimbi kunye namathuba.

Yeyiphi eyona miceli mngeni mikhulu ekuqaleni, kwaye wahlangabezana njani nayo?

Omnye wemiceli mngeni mikhulu xa kwafunyaniswa ukuba bendihlela lonke ulwazi olukhoyo. Ininzi into eyoyikekayo ukuba uyifundele imeko efana ne-MS. Awunakho ukuqikelela ikhosi yayo, kwaye ayinakuphiliswa.

Ngaba uzive ngathi unezinto ezaneleyo onokuthi ujongane nazo nge-MS, kokubini emzimbeni nasengqondweni?

Khange ndikhethe nyani, bendifanele ukujongana. Ndandisandul 'ukutshata, ndididekile, kwaye ngokungafihlisiyo, ndisoyika kancinci. Ekuqaleni, zonke iintlungu, iintlungu, okanye iimvakalelo zi-MS. Ke, iminyaka embalwa, akukho nto iyi-MS. Kukurhabaxa ngokweemvakalelo.

Yeyiphi eyona mithombo yakho iphambili yesikhokelo kunye nenkxaso ngezo ntsuku zokuqala?

Umfazi wam omtsha wayekhona ngam. Iincwadi kunye ne-intanethi zazingumthombo ophambili wolwazi. Ndoyame kakhulu kwi-National Multiple Sclerosis Society ekuqaleni.

Ezincwadini, ndaqala ndifunda iibhayografi malunga nohambo lwabantu. Ndoyama ngeenkwenkwezi ekuqaleni: URichard Cohen (umyeni kaMeredith Vieira), uMontel Williams, kunye noDavid Lander bonke kwafunyaniswa ukuba babekhona ngelo xesha. Ndandinomdla wokuba i-MS ibachaphazela njani kunye nohambo lwabo.

Xa wawuceliwe ukuba udibane ne-MS Buddy app, zeziphi iimpawu ocinga ukuba zezona zibalulekileyo kubaphuhlisi ukuze zilunge?

Kwakubalulekile kum ukuba bakhuthaze ubudlelwane bohlobo lomcebisi. Xa ufunyaniswa okokuqala, ulahlekile kwaye udidekile. Njengoko benditshilo ngaphambili, kuninzi kakhulu ulwazi phaya, ugqibela ngokuntywila.

Mna ngokobuqu ndingathanda ukuba ligqala le-MS lindixelele ukuba yonke into izakulunga. Kwaye amagqala e-MS anolwazi oluninzi lokuwabelana.

Sekudlule iminyaka elishumi ukusukela ukuba uxilongiwe. Yintoni ekhuthaza ukuba ulwe umlo we-MS?

Kuvakala ngathi yinto nje, kodwa bantwana bam.

Yintoni into enye malunga ne-MS onqwenela ukuba abanye abantu bayiqonde?

Kungenxa yokuba ndibuthathaka ngamanye amaxesha, lonto ayithethi ukuba nam andinakomelela.

Phantse abantu abangama-200 bafunyaniswa ukuba bane-MS veki nganye eUnited States kuphela. Ii -apps, iiforamu, iminyhadala, kunye namaqela eendaba ezentlalo adibanisa abantu abane-MS omnye komnye anokubaluleka nakubani na ofuna iimpendulo, iingcebiso, okanye umntu nje onokuthetha naye.

Ngaba unayo i-MS? Jonga indawo yethu yokuhlala noMMS kuFacebook kwaye uqhagamshele kwezi blogger zeMS ziphambili!