Yu dɔn ɛva fil lɛk se yu leg dɛn de go swɛ we yu de klaym stej, yu wɔd dɛn de slɔp we yu de tɔk, ɔ sɔntin de fɔdɔm na yu an wantɛm wantɛm? Yu kin tink se dɛn tin ya na nɔmal tin, bɔt if dɛn sik ya kɔntinyu, i go fayn fɔ mek yu wɔri smɔl. Bikɔs dɛn tin ya kin bi di fɔs sayn dɛm fɔ wan sik we dɛn kɔl Motor Neuron Disease (MND) . So, lɛ wi tɔk bɔt dis smɔl mɔ tide.
Wetin na di sik we dɛn kɔl motor neuron disease (MND)?
Fɔ tɔk am simpul wan, moto nyuron sik (MND) na wan grup fɔ sik dɛn we de afɛkt wi nervɔs sistɛm. I kin mek wi motoka nyuron dɛn day smɔl smɔl. Naw yu kin de wɔnda wetin na dɛn motoka nyuron ya. Dis na di nerve cells we de kɔntrol wi mɔsul dɛn. dis mכtal nyuron dεm implεnt fכ כl di wok we wi de du, frכm fכ brith, tכk, sכlow, εn waka.
Imajin, frɔm wi bren (we wi kɔl ɔpa mɔta nyuron ) mɛsej dɛn kin kam to wi spɛnal kɔd. From de, dεn mεsej dεm de go tru di lכ w mכtal nyuron dεm to di mכsul dεm na wi bכdi. dis כp mכtal nyuron dεm na dεn de tεl di lכw mכtal nyuron dεm, "Okay, naw muv dis mכsul lεk dis."
naw, wetin kin apin we dεn lכw mכtalman nεv dεm ya nכ kin ebul fכ sεnd mεsej to di mכsul dεm? Di mɔsul dɛn kin bigin fɔ wik ɛn smɔl smɔl (muscle atrophy) . כlso, we di כp mכtal nεv dεm nכ ebul fכ sεnd signal to di lכw mכtal nεv dεm, di mכsul dεm kin stif εn כva riaktiv ( hyperreflexia ). Dis kin mek i nɔ izi fɔ wi fɔ mek wi want fɔ muv, ɛn dɛn kin apin sloslo. As tɛm de go, wi kin ivin nɔ ebul fɔ waka ɛn kɔntrol ɔda tin dɛn we wi de muv.
Di impɔtant tin na dat naw, no mɛrɛsin nɔ de fɔ di sik we dɛn kɔl motor nyuron. Dɛn sik ya na sik dɛn we de go bifo we kin wɔs as tɛm de go. Bɔt sɔm tritmɛnt dɛn de wae kin ɛp fɔ ridyus di impak wae de sik kin gɛt.
Us kayn MND de?
Dɔktɔ dɛn kin klas MND akɔdin to if i de afɛkt di ɔpa mɔta nɛv dɛn, di lɔwa mɔta nɛv dɛn, ɔ ɔl tu. Bɔku men kayn MND dɛn de:
`Amyotrofik latεral sklεrosis (ALS)`
Dis na di kayn MND we kɔmɔn pas ɔl. Sɔm pipul dɛn kin kɔl am bak di sik we dɛn kɔl Lou Gehrig . ALS kin afɛkt ɔl tu di ɔpa ɛn lɔwa mɔta nɛv dɛn. Dis kin mek i nɔ ebul fɔ kɔntrol di mɔsul dɛn kwik kwik wan, ɛn leta i kin mek i paralayz . Sɔntɛnde, bɔku dɔktɔ dɛn kin yuz di wɔd dɛn ALS ɛn motoka nyuron sik fɔ chenj.
`Progresiv bulbar palsi (PBP)`
Dis na wetin de atak wi.di lכw mכtal nεv dεm we de kכnekt to di bren stεm (bulbar rijyכn). Wi bren stem de kɔntrol di mɔsul dɛn we wi nid fɔ du tin dɛn lɛk fɔ tɔk, fɔ it, ɛn fɔ swɛla. כda nem fכ PBP na ``progrεsiv bulbar atrofi``.
`Primari lateral sklerכsis (PLS)`
dis de afekt כnli di כp mכtal nεv dεm. Bɔrku tɛm, dis sik kin fɔs afɛkt di leg dɛm. Dɔn i kin afɛkt di an, di an, ɛn di trɔnk. Fɔ dɔn, i kin afɛkt di mɔsul dɛn we dɛn kin yuz fɔ tɔk, fɔ swɛla, ɛn fɔ it it.
`Progresiv mכskul atrofi (PMA)`
I de afekt di lכw mכtal nεv dεm nכmכ. Dis kכndyushכn kin kכmכn pan man dεm, εn i kin tεnd fכ divεlכp we dεn yכng pas כda MND dεm we kin bigin fכ big pipul dεm. di fכs sayn dεm na we di an dεm wik, we de spre to di lכw bכdi. I kin afɛkt di trɔnk ɛn di we aw pɔsin de blo bak.
Spinal mכskul atrofi (SMA) .
dis na wan kכndyushכn we dεn kin gεt we de afekt di lכw mכtalman nεv dεm. Dɛn kin tek am bak se na di men tin we kin mek pikin dɛn day . mכtayshכn dεm na di `SMN1` jin de rεsult in di lכs fכ di `SMN` protin . dis kin pwɛl di lכw mכtal nεv dεm sכmtεm, i kin mek di mכsul dεm west εn wik, εn leta i kin day.
Di sik we Kɛnɛdi gɛt
I gɛt fɔ du wit wan jin we de na di X kromozom na man dɛn. i de kכz fכ di mכtεshכn dεm na di andrכjen rεsεpכta jin. As tɛm de go, wikɛd kin de na di an ɛn leg, bɔku tɛm i kin bigin na di say dɛn we di bɔdi de na di bɛlɛ ɔ di shɔlda. Pen ɛn swɛt na di an ɛn fut kin apin bak.
Pɔst-polio sindrom (PPS) .
I kin apin pan pipul dɛm wae dɔn wɛl frɔm polio. I kin apin te to fɔti ia afta dɛn bin dɔn sik fɔs. Polio kin mek di motoka nεv dεm bכku bכku damej. Di sayn dɛm fɔ PPS na we di mɔsul ɛn jɔyn wik, taya, pen we de bɔku as tɛm de go, di mɔsul dɛn de twitch ɛn west, ɛn we i nɔ ebul fɔ bia wit kol.
Wetin na di sayn dɛm fɔ MND?
Di sayn dɛm fɔ MND nɔ kin kam wantɛm wantɛm, bɔt smɔl smɔl. Na di fɔs tɛm, dɛn nɔ kin rili klia.
Di sayn dɛm we kin kam fɔs
- I nɔ izi fɔ klaym stej ɔ fɔ stɔp bɔku tɛm bikɔs yu leg ɔ yu anklɛ wik .
- Fɔ tɔk fayn (dysarthria) .
- I nɔ izi fɔ swɛla it .
- Wik di grip pan sɔntin we yu de ol. Fɔ ɛgzampul, i kin at fɔ mek yu bɔtul yu shit, opin bɔtul, ɔ tin dɛn we yu de na yu an kin fɔdɔm na grɔn ɔltɛm.
- Mɔsul dɛn kin twitch ɛn kramp .
- Weit lɔs bikɔs ɔf tin an ɛn leg.
- Nɔ ebul fɔ stɔp fɔ laf ɔ kray na di tɛm we nɔ fayn (pseudobulbar affect) . Dis tan lɛk fɔ laf we yu fil bad, ɔ fil bad we yu fil gladi.
Ɔda sayn dɛn we de sho se yu gɛt dis sik
Apat frɔm dɛn fɔs sayn ya, ɔda sayn dɛn kin apin:
- I nɔ izi fɔ blo (we nɔ de blo fayn) .
- I nɔ kin izi fɔ yu fɔ blo we yu de ledɔm na bed.
- Infεkshכn dεm na in chεst כ ltεm .
- Slip dizayd (disturbed slip) .
- Atɛnshɔn ɛn mɛmori we nɔ de wok fayn .
- Kɔnfyus .
- Mɔnin ed we de at .
- Taya .
Wetin kin mek pɔsin gɛt MND?
as wi bin dכn tכk bכt, MND de kכz fכ prכblεm wit wi mכtal nyuron dεm. Dɛn sɛl dɛn ya kin stɔp fɔ wok fayn smɔl smɔl as tɛm de go. Bɔt di wan dɛn we de stɔdi bɔt dis stil nɔ no di rayt tin we mek dis kin apin .
MND na tin we pɔsin kin gɛt frɔm in mama ɛn papa
sכm MND kכndyushכn dεm na dεm we dεn kin gεt bכku, we min se dεn kin pas dכn tru di famili mεmba dεm tru di jin dεm. Insay dɛn kayn tin ya, di sik kin kam bikɔs wan jin chenj. Dɛn kin gɛt dɛn tin ya bɔku men we dɛn:
- ``Autosomal dominant``: insay dis kes, ivin if yu gεt wan kכpi fכ di jin we dεn chenj frכm wan pan di mama εn papa dεm we dεn afekt, risk stil de fכ divεlכp di sik.
- ``Autosomal recessive``: insay dis kes, fכ mek yu divεlכp di sik, yu fכ gεt tu kכpi fכ di jin we dεn chenj frכm di mama εn papa dεm tu.
- `X-linked inheritance`: insay dis, mama de kכri dis jin pan wan X kromozom εn pas di sik to in man pikin dεm.
Ɔda rizin dɛn
Nɔn-hɛridit MND kɔndishɔn kin bi bikɔs ɔf difrɛn tin dɛn. Dɛn tin ya kin bi vayrɔs, pɔyzin, jɛnɛtiks, ɛn tin dɛn we de apin na di envayrɔmɛnt .
Udat de pan ay risk fɔ gɛt MND?
Bɔku tɛm, MND kin afɛkt pipul dɛn we ol bitwin 60 ɛn 70. Bɔt i kin afɛkt pikin ɛn big pipul dɛn we ol ɛni ej. If yu fambul we de nia yu gɛt MND, ɔr wan kayn sik wae dɛn kɔl frontotemporal dementia , yu kin gɛt mɔ risk fɔ gɛt MND.
Aw dɔktɔ dɛn kin no se pɔsin gɛt MND?
I kin tranga fɔ no MND kwik kwik wan, bikɔs nɔr patikyula tɛst nɔr de fɔ am. If yu gɛt di mɔsul dɛn we de wik smɔl smɔl we yu nɔ de fil pen ɔ yu nɔ de fil fayn, yu dɔktɔ kin sɔprayz se yu gɛt MND.
Kwɛstyɔn dɛn we di dɔktɔ kin aks
Yu kin aks yusɛf kwɛstyɔn dɛn lɛk:
- Us pat dɛn na di bɔdi kin afɛkt ?
- Ustɛm di sayn dɛn bigin?
- Fɔs simptom dɛnWetin?
- Yu tink se de sik dɔn chenj as tɛm de go?
Test dɛn we dɛn bin de du
Dɛn kin du sɔm tɛst fɔ ɛp fɔ no di sik:
- Electromyography (EMG): Dis de rikodɔ di ilɛktrik aktiviti we yu mɔsul dɛn de du. Dis kin ɛp fɔ no if di prɔblɛm de na di mɔsul dɛn, di nerv dɛn, ɔ di nyuromɔskul jɔnkshɔn.
- stכdi dεm fכ di nεv kכndukshכn: Dis de mכsu aw di nεv dεm de transmit impuls dεm kwik kwik wan.
- Magnɛtik rɛsɔnans imej (MRI) skan: Dɛn kin du MRI na di bren, ɛn sɔm tɛm dɛn kin du MRI na di spɛnal kɔd fɔ luk fɔ ɔda tin dɛn we nɔ fayn we kin de mek pɔsin gɛt di sem sik.
Fɔ mek dɛn nɔ no ɔda tin dɛn we kin apin to am, di dɔktɔ kin aks fɔ mek dɛn du ɔda tɛst dɛn:
- Blɔd tɛst dɛn
- Test fɔ yu urine
- Tap we dɛn kin yuz fɔ mek di bɔdi (pankchɔ na di bɔdi) .
- Tɛst dɛn we dɛn kin du fɔ tɛst dɛn jɛnɛtiks
As tɛm de go, di sayn dɛm fɔ MND kin so klia dat tɛm kin de we dɛn kin no di sik we dɛn nɔ du ɛni tɛst.
Wetin na di tritmɛnt dɛm fɔ MND?
Nɔr patikyula mɛrɛsin ɔ tritmɛnt nɔr de fɔ di sik we dɛn kɔl motor nyuron. Bɔt di wan dɛn we de stɔdi bɔt dis kin kɔntinyu fɔ stɔdi bɔt aw fɔ mɛn di sik we nɔ gɛt wan prɔblɛm ɛn we go wok fayn.
Yu go nid fɔ woke wit wan tim fɔ dɔktɔ fɔ ɛp yu fɔ kɔntrol yu sik dɛn. MND tritmɛnt dɛn kin inklud:
- Fizik tritmɛnt: Dis kin ɛp fɔ mek yu mɔsul dɛn kɔntinyu fɔ gɛt trɛnk ɛn mek yu jɔyn dɛn ebul fɔ chenj.
- If i nɔ izi fɔ swɛla , dɛn kin gi yu nyutrishɔn tru wan tiub (gastrostomy tube) we dɛn put tru di bɛlɛ wɔl insay di bɛlɛ.
Mɛrɛsin dɛn we dɛn kin yuz
Sɔm mɛrɛsin kin ɛp bɔrku pipul dɛm wae gɛt MND fɔ gɛt rilif frɔm dɛn sik dɛm:
- Baclofen: Ridyus di mכsul dεm we de stif εn ridyus di mכsul dεm we de spam.
- Fɛnitoin ɔ kinin: Ridyus di mɔsul dɛn we de spam.
- Glycopyrrolate: I de ridyus di saliva.
- Antidipreshɔn: Dɛn kin ɛp fɔ gɛt pwɛl hat.
- Benzodiazepines: Fɔ pen we kin apin as di sik de go bifo.
Fɔ pipul dɛn we gɛt ALS, tu mɛrɛsin dɛn de we kin ɛp fɔ mek dɛn liv lɔng ɛn kɔntrol di we aw dɛn de wok: riluzole ɛn edaravone .
Bɔku pipul dɛn kin tek pat bak pan klinik trial dɛn .
Ustɛm a fɔ go to dɔktɔ?
If yu gɛt sɔntin lɛk we yu mɔsul wik, we kin bi wan fɔs sayn fɔ MND, yu fɔ rili go to dɔktɔ. Yu nɔ go gɛt MND, bɔt fɔ gɛt kɔrɛkt diagnosis kwik kwik wan rili impɔtant fɔ gɛt di kia ɛn sɔpɔt we yu nid.
Dɔn bak, if yu gɛt yu fambul wae gɛt MND ɔr frontotemporal dementia ɛn yu de wɔri se yu kin gɛt dis sik bak, i fayn fɔ go to dɔktɔ. Yu dɔktɔ kin sɛn yu bak to pɔsin we de advays yu bɔt yu jɛnɛtiks fɔ tɔk bɔt di prɔblɛm we yu gɛt.
Wetin yu kin ɛkspɛkt we yu de liv wit dis sik?
Mɔtal nyuron sik na sik we de go bifo, so i impɔtant fɔ fɛn dɔktɔ we ɔndastand yu sik ɛn we go ɛp yu fɔ fɛn di rayt tritmɛnt fɔ mɛn yu sik.
I impɔtant bak fɔ gɛt sɔpɔt sistɛm . As yu sik de go bifo, yu kin nid mɔ ɛp frɔm ɔda pipul dɛn fɔ du tin dɛn we nɔ kin izi fɔ yu. Tɔk to yu padi ɛn fambul dɛm, ɔr aks yu dɔktɔ bɔt aw fɔ gɛt sɔpɔt frɔm yu kɔmyuniti. Mɛmba se nɔto yu wangren de.
Wetin na di layf we pɔsin we gɛt MND kin liv?
Bɔt i sɔri fɔ no se, di sik we dɛn kɔl motor neuron disease kin mek yu layf shɔt bad bad wan . Dis na sik dɛn we kin go bifo as tɛm de go ɛn leta kin mek pɔsin day. Bɔt aw lɔng i kin tek fɔ rich da say de kin difrɛn frɔm wan pɔsin to ɔda pɔsin. Sɔm pipul dɛn kin liv fɔ lɔng lɔng tɛm, sɔm tɛm dɛn kin ivin fɔ bɔku bɔku ia, bifo dɛn day bikɔs dɛn sik ya kin ambɔg dɛn. Yu dɔktɔ kin gi yu bɛtɛ ɔndastandin bɔt di prɔgnosis/outluk fɔ yu kɔndishɔn.
Di tin we impɔtant pas ɔl - wetin yu gɛt fɔ tɔk
Fɔ no se yu gɛt motoka nyuron sik (MND) kin bi tin we kin mek yu fred ɛn we kin mek yu at pwɛl . Mɛmba se nɔto yu fɔlt . Yu nɔ du ɛnitin we nɔ rayt. Ɛn i nɔ de chenj udat yu bi – bɔt i kin mek layf difrɛn smɔl. Pan ɔl we yu kin gɛt prɔblɛm dɛn as di sik de go bifo, tritmɛnt dɛn de we go ɛp yu fɔ kɔntrol di tin dɛn we de apin to yu. Le pan yu padi ɛn fambul dɛn fɔ sɔpɔt yu. If yu de strɛs fɔ bia ɔr nid mɔr sɔpɔt, tɔk to yu dɔktɔ. Dɛn kin ɛp yu fɔ fɛn di tin dɛn we yu nid, ɛn mek shɔ se yu gɛt di ɛp we yu nid as tɛm de go.
` Mכtal nyuron sik, MND, nyurolכjik sik, mכsul wik, ALS, nεv sεl dεm, mכsul dεm we de west
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