Ke paʻakikī nei ʻoe i kekahi manawa me ka hele wāwae, ʻike i ka mae ʻole a i ʻole ke kani ʻana i kou mau lālā, a i ʻole ke manaʻo mau nei i ka luhi? Ua ʻike anei ʻoe i kēia mau hōʻailona e hoʻomaka mālie ana a ʻoi aku ka ʻino i ka hala ʻana o ka manawa, ma mua o ka ʻike koke ʻia ʻana? Inā pēlā, he mea nui e aʻo ʻoe iā ʻoe iho e pili ana i kahi maʻi a mākou e kapa nei ʻo PPMS . ʻOiai he kumuhana paʻakikī kēia, ma Nirogi Lanka, makemake mākou e wehewehe iā ia ma ke ʻano maʻalahi a maʻalahi hoʻi e hoʻomaopopo no ʻoe.
He aha maoli ka PPMS?
E hoʻomaka kākou me nā kumu. ʻO PPMS ke kū nei no 'Primary Progressive Multiple Sclerosis .' He ʻano kikoʻī ia o Multiple Sclerosis ( MS ).
I ka ʻōlelo maʻalahi, loaʻa ka Multiple Sclerosis (MS) i ka wā e hoʻouka hewa ai kāu ʻōnaehana pale - ka mea i manaʻo ʻia e pale iā ʻoe mai ka maʻi - i kāu ʻōnaehana nerve ponoʻī. Hoʻopilikia kēia i ke kahe o ke kamaʻilio ma waena o kou lolo, ke kaulahao iwi kuamoʻo, a me ke koena o kou kino.
ʻElua mau ʻano nui o MS:
1. MS Hoʻihoʻi-Hoʻihoʻi (RRMS): Ma kēia ʻano, ʻike ʻoe i ka piʻi koke ʻana o nā hōʻailona (i ʻike ʻia he 'relapse'), ukali ʻia e nā wā e hoʻomaikaʻi ai nā hōʻailona a nalowale loa paha ('remission'). E noʻonoʻo e like me ka ʻino; ua nui ka ua, a laila māʻemaʻe, a laila ua hou.
2. MS Holomua Mua (PPMS): ʻOkoʻa loa ke ʻano a mākou e kūkākūkā nei i kēia lā. Me ka PPMS, ʻaʻole e ʻā aʻe nā hōʻailona a laila nalo. Akā, hoʻomaka kāu mau hōʻailona mai ka hoʻomaka a mālie, e ʻoi aku ka ʻino i ka hala ʻana o ka manawa. Ua like ia me ka ua mau; he mau ia, a i ka hala ʻana o ka manawa, ʻike nui ʻia nā hopena. ʻOiai hiki iā ʻoe ke ʻike i kekahi manawa i ka piʻi nui ʻana o nā hōʻailona, ʻaʻole ia he mea maʻamau.
Ma kahi o 10% o ka poʻe e noho ana me MS me kēia ʻano, i ʻike ʻia ʻo PPMS.
He aha nā hōʻailona mua o ka PPMS?
I ka hoʻomaka ʻana, hiki ke maʻalahi nā hōʻailona o ka PPMS. Eia nō naʻe, ke piʻi nei ko lākou koʻikoʻi i ka hala ʻana o ka manawa. ʻOkoʻa kēia mau hōʻailona mai kēlā kanaka a kēia kanaka. E nānā kākou i nā hōʻailona maʻamau āu e ʻike ai.
| Hōʻailona | He wehewehe maʻalahi |
|---|---|
| Nā pilikia hele wāwae | ʻO kēia ka hōʻailona maʻamau o PPMS. ʻO ka nāwaliwali o nā wāwae, ka ʻoʻoleʻa, a i ʻole ka nalowale o ke kaulike e hiki ai ke paʻakikī i ka hele wāwae. |
| Luhi Mau Loa | He manaʻo luhi loa, ʻoiai ma hope o ka hiamoe piha ʻana i ka pō a i ʻole me ka hana kino liʻiliʻi. ʻOi aku kēia ma mua o ka luhi maʻamau. |
| Ka mae a i ʻole ka ʻūlū | Hiki paha iā ʻoe ke manaʻo i nā manaʻo e like me ke 'pine a me nā nila,' ka numbness, a i ʻole ka nalowale o ka ʻike ma nā wahi like ʻole o kou kino, ʻoiai ma kou mau lima a me kou mau wāwae. |
| Nā Hoʻololi ʻIke | Hiki i nā hōʻailona ke komo pū me ka ʻike maka pohihihi, ka ʻike maka pālua, a i ʻole ka ʻeha ma nā maka. |
| ʻOʻoleʻa a nāwaliwali paha nā ʻiʻo | Hiki i nā ʻiʻo ke lilo i paʻakikī (spasticity), e paʻakikī ai ke kūlou a kīkoʻo paha. Eia kekahi, e ʻike paha ʻoe i ka nalowale ʻana o ka ikaika o nā ʻiʻo. |
| Nā pilikia o ka ʻōpū mimi a me ka ʻōpū | Hiki paha iā ʻoe ke loaʻa i kahi pono koke a wikiwiki hoʻi e mimi, nalowale ka mana o ka ʻōpū mimi, a i ʻole ka paʻakikī i ka hoʻokuʻu ʻana i ka ʻōpū mimi. |
| Nā Pilikia Noʻonoʻo (Noe o ka lolo) | Hiki i kēia ke komo i ka pilikia o ka noʻonoʻo ʻana, nā hemahema o ka hoʻomanaʻo, a i ʻole ka paʻakikī i ka loaʻa ʻana o nā huaʻōlelo kūpono i ka wā o ke kamaʻilio ʻana. |
ʻO ka mea nui loa, mai manaʻo ʻoe he PPMS kou no ka mea ua ʻike ʻoe i hoʻokahi a ʻelua paha o kēia mau hōʻailona. Nui nā maʻi ʻē aʻe e like me kēia mau hōʻailona. No ka loaʻa ʻana o kahi hōʻailona pololei, pono ʻoe e kūkākūkā me kahi loea lapaʻau.
No ke aha e hana ai ʻo PPMS? He aha ke kumu?
ʻO ka ʻoiaʻiʻo, ʻaʻole maopopo ke kumu kikoʻī o MS a i ʻole PPMS. Eia nō naʻe, manaʻoʻiʻo nā kānaka noiʻi he hopena ia mai ka hui pū ʻana o kekahi mau kumu:
- Predisposition genetic: Inā loaʻa kekahi o kou ʻohana iā MS, ʻoi aku paha kou pilikia, ʻoiai he haʻahaʻa kēia pilikia. ʻAʻole ia he manaʻo e hoʻoili ʻia ia iā ʻoe.
- Nā kumu o ke kaiapuni: Manaʻo ʻia ka pili ʻana o kekahi mau maʻi a bacteria paha i ka ulu ʻana o MS.
- Ka hana pono ʻole o ka ʻōnaehana pale: E like me ka mea i ʻōlelo ʻia, ua hōʻino hewa kāu ʻōnaehana pale i ka papa pale a puni kāu mau hunaola nerve (ka 'myelin sheath'). ʻO kēia hōʻino ke kumu o ka lohi a me ka hoʻopilikia ʻana i ka hoʻoili ʻana o nā hōʻailona nerve.
Pehea e ʻike ʻia ai ka PPMS?
ʻAʻohe hoʻāʻo hoʻokahi e hōʻoia i ka PPMS. Hoʻoholo ka loea i kahi hōʻailona ma ka nānā pono ʻana i kāu mau hōʻailona, ka mōʻaukala olakino, a me nā hopena o nā hoʻokolohua like ʻole. He kaʻina hana hōʻailona piha, ʻanuʻu.
Eia kekahi o nā hoʻokolohua mua e hiki ke hana ʻia:
| Hoʻāʻo | ʻO ka mea e nānā ai |
|---|---|
| MRI Scan | Kōkua kēia i ka ʻike ʻana i nā pōʻino aʻalolo (nā ʻeha) i loko o kou lolo a me ke kaula kuamoʻo. He hoʻāʻo koʻikoʻi ia no ka ʻike ʻana i ka PPMS. |
| ʻO ke kuʻi ʻana o ka lumbar | Me ka hoʻohana ʻana i kahi nila liʻiliʻi loa, hōʻiliʻili kāu kauka i kahi hāpana o ka wai cerebrospinal. Hoʻāʻo mākou i kēia no nā protein kikoʻī, i ʻike ʻia ʻo 'oligoclonal bands,' i ʻike pinepine ʻia ma MS. |
| Nā hoʻāʻo koko | Kōkua kēia i ka hoʻoponopono ʻana i nā kūlana ʻē aʻe - e like me nā hemahema o ka huaora a i ʻole nā maʻi autoimmune ʻē aʻe - e hoʻohālike paha i kāu mau hōʻailona. |
| ʻO ka Tomography Hoʻohui Optical (OCT) | He scan ʻeha ʻole kēia i hoʻohana ʻia e ana i ka hōʻino ʻia o ke aʻalolo optic ma ke kua o kou maka, hiki ke hoʻopilikia ʻia e MS. |
ʻOiai ʻo ka PPMS ka mea i ʻike pinepine ʻia ma waena o nā makahiki 40 a me 50, hiki ke hana ia i kēlā me kēia makahiki.
He aha nā lāʻau lapaʻau no PPMS?
I kēia manawa, ʻaʻohe lāʻau lapaʻau no PPMS. Eia nō naʻe, aia nā ala kūpono e hoʻolohi ai i ka holomua o ka maʻi a hoʻokele i kāu mau hōʻailona e hoʻomaikaʻi ai i kou ʻano ola.
Ua māhele ʻia nā lāʻau lapaʻau i ʻelua mau ʻano nui:
1. Nā Lapaʻau Hoʻololi Maʻi (DMT)
Kōkua kēia mau lāʻau lapaʻau i ka hōʻemi ʻana i ka hōʻino ʻana o ke aʻalolo a hoʻolohi i ka ʻino ʻana o ka maʻi. ʻO kahi DMT mua i ʻāpono ʻia no PPMS ʻo ocrelizumab (Ocrevus®) , hiki ke kōkua i ka hoʻokele ʻana i ka holomua o kāu mau hōʻailona.
2. Hoʻokele Hōʻailona
He mea nui kēia no kou ʻoluʻolu a me ke kūʻokoʻa o kēlā me kēia lā:
- Physiotherapy : Kōkua i ka hoʻokele ʻana i ka ʻoʻoleʻa o nā ʻiʻo, nāwaliwali, a me nā pilikia kaulike ma o nā hoʻomaʻamaʻa i kuhikuhi ʻia.
- ʻO ka Lapaʻau Hana: Ke aʻo aku iā ʻoe i nā hoʻolālā kūpono a hoʻolauna i nā mea hana e maʻalahi ai nā hana o kēlā me kēia lā (e like me ke kapa ʻana a me ka kuke ʻana).
- Nā lāʻau lapaʻau: Hiki i kāu kauka ke kuhikuhi i ka lāʻau lapaʻau e mālama i nā pilikia kikoʻī e like me ka kaohi ʻana i ka ʻōpū mimi, ka ʻeha, ka luhi, a me ke kaumaha .
Na kāu kauka e hoʻoponopono i kahi hoʻolālā lapaʻau nou wale nō. Ma mua o ka hoʻomaka ʻana i kekahi lāʻau lapaʻau, e kūkākūkā mau i nā hopena ʻaoʻao e hiki mai ana me ka wehe ʻole ʻia.
He aha kāu e manaʻo ai i ka wā e noho ana me PPMS
He kūlana koʻikoʻi ka PPMS i kou ola o kēlā me kēia lā. I ka ulu ʻana o kāu mau hōʻailona, pono paha ʻoe e hana i nā hoʻololi e mālama i kou palekana a pale i nā ulia.
Eia kekahi laʻana, ma hope paha e pono ai ʻoe i kahi mea hele wāwae a i ʻole kahi noho huila. E hoʻomanaʻo: ʻo ka hoʻohana ʻana i kēia mau mea kōkua ʻaʻole ia he mea e hoʻopōʻino ai; he mau mea hana lākou e mālama ai i kou kūʻokoʻa a hoʻomau iā ʻoe e hana.
ʻO ka noho ʻana me kahi maʻi mau loa e hiki ke hoʻopilikia i kou olakino naʻau. He mea maʻamau ke kaumaha a hopohopo paha. ʻO ke kamaʻilio ʻana me kahi kākāʻōlelo olakino noʻonoʻo a i ʻole ka haʻi ʻana i kou mau manaʻo me kahi kanaka hilinaʻi hiki ke lilo i mea hoʻōla maikaʻi loa.
ʻAʻole pili pono ka PPMS i kou ola ola, akā ʻo ka hoʻokele ʻana i nā pilikia ke kī i ka mālama ʻana i kahi ola maikaʻi.
Āhea ʻoe e ʻike ai i kāu kauka?
Inā loaʻa iā ʻoe ka PPMS, he mea nui ka mālama ʻana i ka pilina ikaika me kāu hui lapaʻau. E ʻoluʻolu e hoʻokaʻaʻike aku i kāu kauka inā:
- Ke ʻoi aku ka nui o kou mau hōʻailona, e hoʻopilikia ana i kāu hana maʻamau i kēlā me kēia lā.
- Loaʻa iā ʻoe ka maʻi lolo koke, ka ʻeha mau, a i ʻole ka maneʻo.
- Inā hāʻule ʻoe a ʻeha paha ma muli o nā pilikia kaulike; e ʻoluʻolu e hele koke i ka ʻOihana Pōpilikia (ED) .
- Loaʻa iā ʻoe nā hopena ʻaoʻao koʻikoʻi mai kāu mau lāʻau lapaʻau.
Nā nīnau e nīnau aku ai i kāu kauka:
- Ua hōʻoia ʻia kaʻu hōʻailona he PPMS, a i ʻole kekahi ʻano MS ʻē aʻe?
- He aha ke ala maikaʻi loa e mālama ai i kaʻu mau hōʻailona kikoʻī?
- E pōmaikaʻi anei au mai ka hoʻōla kino a i ʻole ka hana?
- He aha nā pilikia a me nā hopena ʻaoʻao o kaʻu mau lāʻau lapaʻau i kuhikuhi ʻia?
- Pono anei iaʻu e noʻonoʻo i nā mea kōkua neʻe e like me ka noho huila i kēia manawa?
Leka Lawe-Home
- ʻO PPMS kahi ʻano o MS i hōʻike ʻia e ka holomua mālie a mau o nā hōʻailona ma mua o nā hoʻouka koke ʻana.
- ʻOiai ʻaʻohe kumu i ʻike ʻia a lāʻau lapaʻau paha, aia nā lāʻau lapaʻau kūpono loa e hoʻolohi i ka holomua a mālama i kāu mau hōʻailona.
- Hoʻokomo ka ʻike ʻana i nā hoʻokolohua kikoʻī e like me nā scan MRI a me nā puncture lumbar.
- Me ka mālama kūpono a me nā hoʻololi ʻana i ke ʻano o ka nohona, hiki iā ʻoe ke hoʻomau i ke ola i kahi ola piha a me ka manaʻo nui.
- Inā ʻike ʻoe i kekahi mau loli koʻikoʻi a i ʻole he mau hopohopo kāu, e ʻoluʻolu e kelepona koke aku i kāu kauka.
👩🏽⚕️ Nā Nīnau i Nīnau Pinepine ʻia (FAQs)
💬 He aha ka Primary Progressive Multiple Sclerosis (PPMS)?
He ʻano paʻakikī ka PPMS o ka Multiple Sclerosis kahi e hoʻouka hewa ai kāu ʻōnaehana pale ponoʻī i ka uhi pale (myelin) o nā aʻalolo i loko o kou lolo a me ke kaula spinal. ʻAʻole e like me nā ʻano MS ʻē aʻe, holomua mau ka PPMS i ka hala ʻana o ka manawa, e hoʻopilikia mālie ana i kou neʻe ʻana a me ka hiki ke hana i nā hana o kēlā me kēia lā.
💬 He aha nā hōʻailona mua o ka PPMS?
I nā pae mua, e ʻike paha ʻoe i ke kaumaha mau i kou mau wāwae, ka mae ʻana o ka ʻiʻo, a i ʻole ka luhi maʻamau. I ka manawa pinepine, e ʻike paha ʻoe ua pilikia kou kaulike, e alakaʻi ana i ka kuʻia ʻana a i ʻole ka paʻakikī i ka hele ʻana. ʻO ka mea nui, ʻoi aku ka ʻino o kēia mau hōʻailona i ka hala ʻana o ka manawa ma mua o ka loli a nalo paha.
💬 Hiki ke ho'ōla loa ʻia ka PPMS?
ʻOiai ʻaʻohe lāʻau lapaʻau no PPMS i kēia manawa, ma Nirogi Lanka makemake mākou e ʻike ʻoe e hāʻawi ana nā holomua lapaʻau i ka manaʻolana. Me nā lāʻau lapaʻau hou e like me Ocrelizumab a me ka physiotherapy i hoʻolaʻa ʻia, hiki iā mākou ke hoʻokele pono i ka holomua o ka maʻi a hoʻomaikaʻi nui i kou ʻano ola.
