Yala i farikolo sirilen bɛ, nka i hakili hɔrɔnyalen don wa? An ka kuma bana min bɛ wele ko Locked-in Syndrome (LiS) kan .

Miiri k’a filɛ, i bɛ se ka i sago bɛɛ faamu ani k’a mɛn, nka i tɛ se ka kuma walima k’i farikolo lamaga... i n’a fɔ i sirilen bɛ i yɛrɛ farikolo kɔnɔ. Yala a tɛ kɛ i n’a fɔ i tɛ se ka foyi kɛ ka miiri nin ko la wa? O ye hakiliɲagami sugu ye tigitigi, nka a man ca kosɛbɛ, an bɛna kuma min kan bi. O bɛ wele ko Locked-in Syndrome, walima `(LiS)` ni a surunyalen don.

Sida min bɛ wele ko Locked-in Syndrome, o ye mun ye?

N’an y’a fɔ cogo nɔgɔman na, sɔgɔsɔgɔninjɛ ye hakiliɲagami bana ye min man teli ka kɛ, i farikolo minnu bɛ i yɛrɛ sago la, olu bɛɛ bɛ kɛ baarakɛbaliw ye, fo ni farikolo minnu bɛ i ɲɛ lamagacogo ɲɛnabɔ. O kɔrɔ ye ko i tɛ se ka fɛn o fɛn kɛ i b’a fɛ ka min kɛ, i n’a fɔ ka i bolow walima i senw lamaga, ka kuma, walima ka dusukunnataw jira ni i ɲɛda ye.

Nka kabako min bɛ yen, o ye ko mɔgɔ min bɛ nin cogo in na , o tigi ka dusukunnataw, a hakili ani a hakili bɛɛ bɛ i n’a fɔ a bɛ kɛ cogo min na. U bɛ se ka fɛn minnu bɛ kɛ u lamini na, u bɛ se k’olu mɛn ani k’u faamu. Nka cogo si t’u bolo k’o jaabi. A bɛ iko mɔgɔ min sirilen bɛ a yɛrɛ farikolo kɔnɔ, min tɛ se ka kuma walima ka lamaga.

A ka c’a la, o mɔgɔw bɛ kumaɲɔgɔnya kɛ ni u ɲɛw lamagacogo ye sanfɛ ni duguma, walima u ɲɛjibɔ ye, u bɛ se ka min kunbɛn. Tuma dɔw la, u bɛ baara kɛ ni dɛmɛn fɛɛrɛ kɛrɛnkɛrɛnnenw ye o baara kama.

O bana in sababuba ye tiɲɛni ye an kunkolo yɔrɔ kɛrɛnkɛrɛnnen dɔ la min bɛ wele ko pons. An bɛna kuma o kan ka ɲɛ kɔfɛ.

Sida min bɛ wele ko locked-in syndrome (LiS) suguya jɔnjɔnw ye jumɛnw ye?

Sida min bɛ wele ko locked-in syndrome (LiS) suguya belebele saba dɔnna. An k’a lajɛ u ye min ye.

1. Mode klasiki

Nin ye a suguya ye min ka teli ka kɛ. O cogo la, farikolo bɛɛ tɛ lamaga pewu. O kɔrɔ ye k'u tɛ Se ka 'yɛrɛlabɔli si Kɛ. Nka, u bɛ se k’u ɲɛw lamaga sanfɛ ni duguma ani ka u ɲɛw wuli. Ani fana, u hakili ni u hakili bɛ to cogo la. U bɛ se ka fɛnw mɛn minnu bɛ kɛ u lamini na kosɛbɛ.

2. Sɛbɛn dafalen tɛ

O ni klasiki suguya ye kelen ye. O kɔrɔ ye ko hali ni farikolo bɛɛ ɲɛnama tɛ, ɲɛw bɛ se ka wuli ka jigin, ka ɲɛjibɔ. Nka, o cogo la, tuma dɔw la, lamaga ni dusukunnata dɔw bɛ se ka to farikolo yɔrɔ dɔw la. O de ye danfara fitinin ye yan.

3. Total Immobility Mode (Yɛlɛmabaliya bɛɛ lajɛlen cogoya).

Nin ye a suguya ye min ka jugu kosɛbɛ wa a man teli ka kɛ. O la, farikolo bɛɛ bɛ kɛ farigan ye pewu, wa ɲɛw lamagacogo bɛ ban. Nka, kabako don, o mɔgɔw fana ka miiri ni hakili bɛ cogo la. Dɔgɔtɔrɔw b’o Sɛmɛntiya ni kunsɛmɛnasumaya (kɔnɔna baara) baara sɛgɛsɛgɛli ye ni sɛgɛsɛgɛliw ye i n’a fɔ ``electroencephalogramme - EEG)``, o min bɛ kunsɛmɛnasumaya suman.

Jɔn bɛ se ka bana sɔrɔ min bɛ wele ko locked-in syndrome (LiS)?

Tiɲɛ na, nin bana in min bɛ wele ko locked-in syndrome (LiS) o bɛ se ka kɛ mɔgɔ si hakɛ bɛɛ la. Nka, ɲininiw y’a jira ko a ka ca mɔgɔw la minnu si bɛ san 30 ni san 50 cɛ .

Nin bana in ka ca cogo di?

Locked-in syndrome (LiS) ye bana ye min man teli ka kɛ. Ikomi tuma dɔw la a bɛ sɛgɛsɛgɛ cogo jugu la walima ka fili ka miiri ko a ye furakɛli bana ye, a ka gɛlɛn ɲininikɛlaw ma k’a fɔ tigitigi mɔgɔ hakɛ min bɛ a sɔrɔ san o san. Nka, a bɛ sɔn a ma kosɛbɛ ko a man ca kosɛbɛ.

Sida min bɛ wele ko locked-in syndrome (LiS) taamasiɲɛ jumɛnw ye?

A nɔ bɛ se ka kɛ farikolo la dɔɔni ka kɛɲɛ ni locked-in syndrome (LiS) suguya ye min bɛ aw la.

Tuma caman na, n’i ye mɔgɔ ye siɲɛ fɔlɔ min na, sindrom locked-in syndrome bɛ a la, i b’a miiri ko a hakili tɛ a la, o kɔrɔ ye ko a bɛ kɔma la. O bɛ kɛ bawo u tɛ se ka jaabi di cogo si la. Kɔfɛ dɔrɔn, i b’a ye k’u bɛ u hakili la.

Fɛn minnu tɛ se ka kɛ mɔgɔ caman fɛ:

• Dumuni ɲimi
• Munumunu
• Kuma
• Ɲɛda cogoya (i n’a fɔ nisɔndiya, dusukasi) .
• Farikolo lamaga tɛ ɲɛw jukɔrɔ

Mɔgɔ caman bɛ se ka fɛn minnu kɛ (kɔrɔlen ni dafabali cogo la):

• Aw bɛ se ka aw ɲɛw lamaga sanfɛ ni duguma (nka aw kana kɛ kɛrɛ ni kɛrɛ fɛ, o kɔrɔ ye ko aw bɛ wuli ka taa a fɛ).
• Aw bɛ se ka ɲɛjibɔ kɛ.

Bɛɛ (cogo bɛɛ la) bɛ se ka fɛn minnu kɛ:

• Ne bɛ se ka fɛnw mɛn minnu bɛ kɛ ne lamini na, mɔgɔw bɛ kuma.
• I bɛ se k’a faamu ni mɔgɔ dɔ bɛ kuma walima ni a bɛ fɛn dɔ kalan.
• I bɛ se ka miiri ani ka miiri i n’a fɔ i tun b’a kɛ cogo min na sanni nin ko in ka wuli.
• Sunɔgɔ ni kununni sɛgɛsɛgɛliw ye fɛn ye min bɛ kɛ cogo la.

Yala dimi bɛ aw la ni locked-in syndrome (LiS) ye wa?

O fana bɛ bɔ i ka bana suguya la min bɛ wele ko Locked-In Syndrome (LiS).

• Mɔgɔ min tɛ se ka lamaga pewu, o tigi tɛ farikolodimi sɔrɔ barisa a farikolo bɛɛ tɛ se ka lamaga pewu.
• Mɔgɔ min cogoya tɛ dafa, o tigi bɛ se ka dimi ni dusukunnata wɛrɛw sɔrɔ farikolo yɔrɔ dɔw la.

Mun de bɛ kɛ sababu ye ka bana dɔ sɔrɔ min bɛ wele ko locked-in syndrome (LiS)?

I n’a fɔ an y’a fɔ cogo min na ka tɛmɛ, locked-in syndrome (LiS) sababuba ye tiɲɛni ye an kunkolo yɔrɔ kɛrɛnkɛrɛnnen dɔ la min bɛ wele ko pons.

Tiɲɛni bɛ kɛ pons yɔrɔ la hakili la

Pons ye nɛrɛmuguma ye min bɛ i n’a fɔ sow. A bɛ sɔrɔ medulla oblongata cɛ, n’o ye kunsɛmɛnasumaya yɔrɔ ye min ka dɔgɔn kosɛbɛ, ani cerebellum cɛ, o min bɛ an farikolo lamagacogo kɔlɔsi, kɛrɛnkɛrɛnnenya la balansi.

Pons ye hakili yɔrɔ dɔ ye min bɛ wele ko cerebrum, o kɔnɔ, nɛrɛmugu sira nafama caman bɛ yen minnu bɛ an ka kunsɛmɛ, kɔkolo ani kunsɛmɛ siri ɲɔgɔn na. Sindrom locked-in syndrome la, ni pons tiɲɛna, nɛrɛmuguma taamasiɲɛw bɛɛ bɛ bali ka bɔ kunsɛmɛ na ka taa farikolo fasaw la. O de y’a to farikolo bɛɛ bɛ kɛ paralize ye. O tiɲɛni in bɛ nɔ bila fana hakili-la-yɔrɔ-yɔrɔw la minnu bɛ ɲɛda cogoyaw ni kumacogo ɲɛnabɔ. O de y’a to an tɛ se ka dusukunnataw jira ni an ɲɛda ye, ka dumuni ɲimi, ka munumunu, walima ka kuma.

Pons tiɲɛni sababuba min ka teli ka kɛ, o ye joli-sira-funu walima joli-sira-funu ye, o bɛ nɔ bila kɔritikosikili, kɔritikopontini ani kɔritikobulbar siraw la kunsɛmɛ na.

• Ischemic stroke ye ni joli kurulen dɔ ye joli sira dɔ datugu min bɛ joli lase kunsɛmɛ ma, ka joli sira tigɛ ka taa kunsɛmɛ na.
• Jolilabana ye ni joli bɛ daminɛ ka barika sɔrɔ ka don kunsɛmɛ na ka bɔ joli sira dɔ la min bɛ kunsɛmɛ na.

Tiɲɛni sababu wɛrɛw bɛ pons la

Ka fara sɔgɔsɔgɔninjɛ kan, sababu damadɔ wɛrɛw minnu man ca, olu bɛ se ka tiɲɛni kɛ pons la, o bɛ na ni locked-in syndrome (LiS) ye.

• Banakisɛ sɔrɔli kunsɛmɛ yɔrɔ dɔw la.
• Tumu walima kurukuruw bɛ sɔrɔ pons walima kunsɛmɛ na.
• Demyelination ye lakanani datugulan (myelin) bɔnɛ ye farikolo yɔrɔw lamini na.
• Furakɛcogo dɔw, misali la , sklerose latérale amyotrophique (ALS) ani syndrome Guillain-Barre .
• Trauma ka pons.
• Fɛnɲɛnɛmafagalanw tali .

Sindrom locked-in syndrome (LiS) bɛ sɔrɔ cogo di?

Ikomi mɔgɔ minnu bɛ ni locked-in syndrome (LiS) ye, olu tɛ jaabi di dimi ma (i n’a fɔ, u tɛ ni farikoloɲɛnajɛ jaabi ye) dɔgɔtɔrɔw bɛ minnu kɛ ka jaabi lajɛ, dɔgɔtɔrɔw bɛ se ka fili a daminɛ na k’u hakili tɛ a la. O la, a sɛgɛsɛgɛli (LiS) bɛ se ka gɛlɛya tuma dɔw la, wa a bɛ waati caman ta.

Fɛn min nafa ka bon kosɛbɛ bana min bɛ wele ko locked-in syndrome (LiS) sɛgɛsɛgɛli la, o ye ka bana wɛrɛw bɔ kɛnɛ kan minnu bɛ se ka kɛ sababu ye ka nin taamasiɲɛ ninnu kɛ. Ani fana, i n’a fɔ bana sɛgɛsɛgɛli ni furakɛli bolodacogo dɔ, a nafa ka bon ka a dɔn fɛn min bɛ kɛ sababu ye ka bana in bila mɔgɔ la.

Sɛgɛsɛgɛli minnu bɛ kɛ ka bana sɛgɛsɛgɛ

Dɔgɔtɔrɔw bɛ sɛgɛsɛgɛli caman kɛ walasa ka bana dɔ dɔn min bɛ wele ko locked-in syndrome (LiS), ka a sababu dɔn, ani ka bana wɛrɛw bɔ kɛnɛ kan.

• MRI (Magnetic Resonance Imaging - MRI) scan walima CT (Computed Tomography - CT) scan: Nin sɛgɛsɛgɛliw bɛ se k’a dɔn ni tiɲɛni bɛ aw ka pons walima aw ka hakili yɔrɔ wɛrɛw la.
• Cerebral angiography : Nin sɛgɛsɛgɛli in bɛ se k’a dɔn ni joli kurulen bɛ kunsɛmɛnasumaya siraw la walima kunsɛmɛ yɔrɔ wɛrɛw la.
• Electroencephalogramme (EEG): O bɛ kunsɛmɛ ka kuran baara suman. O bɛ kɛ sababu ye dɔgɔtɔrɔw k’a lajɛ ni i hakili ka baara ni i ka sunɔgɔ ni i kununni bɛ cogo la. A bɛ se ka dɛmɛ don ka LiS ni bana wɛrɛw faranfasi.
• Seko ni dɔnko minnu bɛ lawuli: Olu bɛ kuran baara suman kunsɛmɛ ni kɔkolo yɔrɔ dɔw la ka kɛɲɛ ni fɛnw ye i n’a fɔ dimi, mɛnni walima yecogo. Dɔgɔtɔrɔw bɛ baara kɛ n’u ye walasa ka kunsɛmɛnasumaya jaabi tiɲɛnenw ni hakili jaabi kɛnɛmanw jateminɛ.
• Electromyography (Electromyography): O bɛ a jateminɛ i farikolo ni i farikolo yɔrɔw bɛ baara kɛ cogo min na. Nin sɛgɛsɛgɛli in bɛ se ka kɛ walasa ka farikolo ni farikolo yɔrɔw tiɲɛni bali.
• Joli sɛgɛsɛgɛliw : Farikoloɲɛnajɛ yɔrɔ dɔ, kɛrɛnkɛrɛnnenya la ni soja hakɛ lajɛ joli la, o bɛ se ka dɛmɛ don ka a dɔn ni bana dɔ bɛ wele ko pontine myénolyse, o de ye a sababu ye.
• Kunsɛmɛnasumaya (CSF) sɛgɛsɛgɛli : O bɛ se ka dɛmɛ don ka a dɔn ni banakisɛ walima farikolo tangacogo dɔ de bɛ a taamasiɲɛw bila mɔgɔ la.

Sindrom locked-in syndrome (LiS) bɛ furakɛ cogo di?

Ni an b’a fɛ ka tiɲɛ fɔ, fura walima furakɛli kɛrɛnkɛrɛnnen tɛ yen min bɛ wele ko locked-in syndrome (LiS). Fɛn kelen min ka kan ka kɛ, ni a bɛ se ka kɛ, o ye ka bana sababu furakɛ ani ka gɛlɛya wɛrɛw bali.

, bana min bɛ wele ko locked-in syndrome furakɛli , o ye furakɛli dɛmɛni ni kumaɲɔgɔnya kalanni ye .

Furakɛli min bɛ dɛmɛ don

Ladonni dɛmɛni ninakili ni balo la, o nafa ka bon, kɛrɛnkɛrɛnnenya la a daminɛ na. LiS bɛ mɔgɔ minnu na, tuma caman na, olu mago bɛ ninakili dɛmɛni na min dilannen don. U bɛ tracheotomy fana kɛ (tube min bɛ don dingɛ fitinin dɔ fɛ kɔ la ka don fiɲɛbɔlan kɔnɔ).

Ikomi a man ɲi ka dumuni kɛ walima ka min da la ni LiS ye, a ka ca a la o mɔgɔw bɛ tubabufura fitini dɔ don u kɔnɔbara la min bɛ wele ko gastrostomy tube (G-tube) . Dumuni ni ji bɛ di yɔrɔ in de la.

Furakɛli faralen wɛrɛw ye:

• Gɛlɛya minnu bɛ se ka sɔrɔ ni i tɛ se ka lamaga, olu balili. I n'a fo:Fɛn minnu bɛ i n’a fɔ sɔgɔsɔgɔninjɛ, sugunɛbilenni (UTI), ani joli kurulenw (trombose).
• Degun joginw/dilan joginw kunbɛnni .
• Aw bɛ farikoloɲɛnajɛ furakɛli kɛ walasa ka bolokɔniw bali, o ye lamaga hakɛ dɔgɔyali ye min bɛ sɔrɔ bolokɔniw, farikolo yɔrɔw walima farikolo yɔrɔ nɔgɔlenw gɛlɛyali fɛ.
• Aw bɛ farikoloɲɛnajɛ kɛ walasa ka farikoloɲɛnajɛ misɛnnin minnu tora walima minnu bɛ ka segin u yɛrɛ sago la (ni olu bɛ yen) olu bɛɛ labɛn kokura.

Kumaɲɔgɔnya kalan

Kuma furakɛlikɛlaw bɛ se ka mɔgɔw dɛmɛ minnu bɛ ni locked-in syndrome (LiS) ye, u ka se ka kumaɲɔgɔnya kɛ ka jɛya ɲɛ lamagacogo ni ɲɛjibɔ fɛ. O kumaɲɔgɔnya kɛcogo ɲɔgɔn tɛ mɔgɔ kelen-kelen bɛɛ la. Misali la, sanfɛla lajɛ bɛ se ka kɛ "ɔwɔ" ye ani duguma filɛli bɛ se ka kɛ "ayi" ye (walima a kɔfɛ). Ani fana, ni mɔgɔ wɛrɛ ye lɛtɛrɛ kalan, u b’a fɛ ka baara kɛ ni lɛtɛrɛ min ye walasa ka daɲɛw ni kumasenw dilan, a bɛ se k’o jira.

Ka fara ɲɛ lamaga taamasiɲɛw kan, ɛntɛrinɛti kan kumaɲɔgɔnya minɛnw , i n’a fɔ ɲɛ lamagacogo infrarouge ani ɔridinatɛri kan prothétiques, olu y’a to LiS bɛ mɔgɔ minnu na, olu bɛ se ka kumaɲɔgɔnya kɛ hɔrɔnya la ani ka se ɛntɛrinɛti ma.

Yala a bɛ se ka kɛ ka kɛnɛya pewu ka bɔ locked-in syndrome (LiS) la wa?

Ka kɛɲɛ ni locked-in syndrome (LiS) sababu ye, farikoloɲɛnajɛ seko dɔw bɛ se ka segin. Nka, a kɛnɛyali dafalen man teli ka kɛ. LiS bɛ mɔgɔ minnu na, olu dɔw bɛ se ka lamaga dɔɔni ani u farikolo yɔrɔ dɔw la.

Mɔgɔ caman tɛ se ka farikoloɲɛnajɛ bɔnɛnenw sɔrɔ kokura abada, nka u bɛ se ka kumaɲɔgɔnya dege ɲɛ lamagacogo fɛ.

Yala locked-in syndrome (LiS) bɛ se ka bali wa?

A fɔ man di nka, bana min bɛ wele ko locked-in syndrome (LiS), o fanba tɛ se ka bali. Nka, ni faratiba bɛ aw la ka kirinni sɔrɔ, aw ka LiS sɔrɔli farati fana bɛ se ka bonya.

Aw bɛ kuma aw ka dɔgɔtɔrɔ fɛ aw ka kirinni farati kan ani aw bɛ se ka dɔ bɔ o farati la cogo minnu na.

Mɔgɔ min bɛ ni bana ye min bɛ wele ko locked-in syndrome (LiS) o tigi ka ɲɛnamaya kɛcogo ye mun ye?

Mɔgɔ minnu bɛ ni locked-in syndrome (LiS) ye, olu ka ɲɛfɔli bɛ bɔ bana sababu la, bana suguya la, ani u bɛ dɛmɛ ni ladonni hakɛ min sɔrɔ.

Sɛgɛsɛgɛli dɔ kɛra kɔsa in na, o y’a jira ko LiS bɛ mɔgɔ minnu na, olu ye ɲɛnamaya nisɔndiyalen ni kɔrɔ fɔ, kɛrɛnkɛrɛnnenya la n’u ye sigida baara ɲumanw sɔrɔ ani fɛɛrɛ minnu bɛ se ka ladamu, minnu y’u dɛmɛ ka jɔyɔrɔ ɲuman ta so kɔnɔ ani sigida la.

LiS bɛ mɔgɔ caman na, olu bɛ se ka baara kɛ ni wotoronin ye min bɛ baara kɛ ni motɛri ye ani ɔridinatɛri min bɛ ni fɛɛrɛ ye min bɛ se ka mɔgɔw ladamu.

Aw bɛ se ka ɲɛnamaya kɛ ni bana ye min bɛ wele ko locked-in syndrome (LiS) fo waati joli?

Mɔgɔ dɔw minnu bɛ ni locked-in syndrome (LiS) ye, olu tɛ balo ka tɛmɛ bana daminɛ na, ka a sababu kɛ furakɛli gɛlɛyaw ye. Nka, dɔw bɛ ɲɛnamaya kɛ san 10 fo san 20 kɔnɔ, wa u b’a fɔ ko u ka ɲɛnamaya kɛcogo ka ɲi.

Ne bɛ se ka ne yɛrɛ ladon cogo di, walima mɔgɔ min bɛ ni LiS ye?

Ni locked-in syndrome (LiS) bɛ aw la, a nafa ka bon aw ka aw jija ka furakɛli ɲuman kɛ walasa ka gɛlɛyaw bali i n’a fɔ sɔgɔsɔgɔninjɛ ani dilanw minnu bɛ sɔrɔ lamagabaliya fɛ.

A nafa ka bon fana ka kumaɲɔgɔnya fɛɛrɛw ɲini – a kɛra ɲɛ lamagacogo ye wo, a kɛra dɛmɛ fɛɛrɛ ye i n’a fɔ ɲɛnamini fɛɛrɛ. A lajɛ ka don dɛmɛjɛkulu dɔ la walasa ka mɔgɔ wɛrɛw kunbɛn minnu ye o ko suguw sɔrɔ.

Ni aw bɛ mɔgɔ dɔ ladon min bɛ ni `(LiS)` ye , a nafa ka bon aw ka a lafasa walasa a ka furakɛli ɲuman sɔrɔ ani ka se ka fɛɛrɛw sɔrɔ minnu b’u dɛmɛ ka kumaɲɔgɔnya kɛ ani ka kɛ yɛrɛmahɔrɔnya ye.

A laban na, fɛn min nafa ka bon kosɛbɛ (Take-Home Message) .

Locked-in Syndrome (LiS) ye bana ye min man teli ka sɔrɔ, wa a ka jugu. Nin bana in ɲɔgɔnna sɛgɛsɛgɛli sɔrɔli bɛ se ka kɛ fɛn ye min bɛ mɔgɔ degun. Nka aw hakili to a la ko aw ka dɔgɔtɔrɔso jɛkulu bɛ yen walasa ka aw n’aw diyanyemɔgɔw dɛmɛ. A nafa ka bon ka taa a fɛ ka furakɛli ɲuman sɔrɔ ani ka kumaɲɔgɔnya fɛɛrɛ kuraw dege ni i bɛ balo ni LiS ye.

Bi dɛmɛni ladonni ɲɛtaa fɛ ani fɛɛrɛ kuraw fɛ, mɔgɔ caman minnu bɛ ni bana ye min bɛ wele ko Locked-In Syndrome (LiS) bɛ ɲɛnamaya dafalen ni nafama na. O la sa, i kana jigiya dabila abada. Gɛlɛya bɛɛ ɲɛnabɔcogo bɛ yen, gɛlɛya bɛɛ kunbɛncogo bɛ yen.

` Kɔnɔnafili, Pons, Sugunɛbana, hakiliɲagami, Paralizi, Kumaɲɔgɔnya