Wi ɔl kin fil diziz ɔ layt ed sɔm tɛm we wi grap na chia ɔ bed. Bɔku tɛm, i kin go insay sɔm sɛkɔn dɛn. Bɔt if dis kin apin to yu bɔku tɛm, ɔ if yu fil lɛk se yu de kam fɔdɔm ɛn fɔdɔm, i nɔ kin bi nɔmal tin. Tide wi go tɔk bɔt wan sik wae nɔr kin bɔrku wae kin kam wit dɛn kayn sik ya. Dat na Pure Autonomic Failure, ɔ PAF fɔ shɔt.
Fɔ tɔk am simpul wan, wetin na Pure Autonomic Failure (PAF)?
Tink bɔt am, bɔku tin dɛn de na wi bɔdi we kin apin ɔtomɛtik wan we wi nɔ ebul fɔ kɔntrol am. Fɔ ɛgzampul, fɔ blo, at bit, fɔ digest, fɔ kɔntrol di bɔdi in tɛmpracha, ɛn fɔ kɔntrol di blɔd prɛshɔn. Na wi Autonomic Nervous System de kɔntrol ɔl dis. I tan lɛk di ‘ɔto-paylɔt’ sistɛm na wi bɔdi.
Pure Autonomic Failure (PAF) na wan rare nyurolכjik kכndyushכn we de wik sכmtεm di wok we di autonomic nervous system de du as tεm de go. Di men tin we kin apin pan dis kes na dat we yu tinap wantɛm wantɛm frɔm we yu sidɔm ɔ ledɔm, yu blɔd prɛshɔn kin go dɔŋ bad bad wan . We wi de tɔk bɔt mɛrɛsin, wi kin kɔl dis ɔrtɔstatik haypɔtɛnshɔn . Bɔt nɔto dis nɔmɔ prɔblɛm, PAF kin mek bɔku ɔda prɔblɛm dɛn.
Dɛn kin si dis sik mɔr pan big pipul dɛm wae ol bitwin 40 ɛn 60. Trade, dɛn bin de kɔl dis sik bak Bradbury-Eggleston syndrome.
Wetin na di sayn dɛm fɔ PAF sik?
As wi bin dɔn tɔk, di mɔs kɔmɔn ɛn men sayn na diziz ɛn fɔdɔm we yu tinap (orthostatic hypotension). Bɔt bikɔs dis ɔtonomik nervɔs sistɛm de kɔntrol bɔku ɔgan dɛn na wi bɔdi, di sayn dɛn nɔ kin jɔs de pan wan.
De impɔtant tin na dat, dɛn sayn ya nɔr kin apin di sem we ɔr di sem ɔda fɔ ɔlman. Sɔm pipul dɛn kin gɛt ɔda sayn dɛn bifo dɛn fil diziz we dɛn tinap.
Lɛ wi si us ɔda sayn dɛm wae PAF kin kam wit.
| Sistem/prɔses we dɛn afɛkt | Sɔm sayn dɛn we kin apin |
|---|---|
| Di bɔdi we de swet | Bɔku tɛm, di swet kin go dɔŋ (anhidrosis) ɔ sɔm tɛm dɛn kin swet pasmak (hyperhidrosis). |
| Ays we yu de si | Blurred vision bikoz di pupil dεm nכ big inof. |
| Yurinari sistɛm | i nɔ izi fɔ ɛmti di blad ɔl (urinary retention) ɔ nɔ ebul fɔ kɔntrol di urinary (urinary incontinence). |
| Dijestiv sistɛm | Kɔnstipɛshɔn ɔ fecal incontinence. |
| Fɔ du mami ɛn dadi biznɛs | Prɔblɛm dɛn lɛk we pɔsin nɔ kin ebul fɔ tinap fayn ɔ we i nɔ kin ebul fɔ tinap tranga wan. |
Apat frɔm dat, lɛk af pan di pipul dɛn we gɛt PAF kin gɛt smɔl anemia bak.
Wetin na di rizin we mek dɛn mek PAF?
di men kכz fכ dis dεn bin no se na di abnכmal akyumyuleshכn fכ wan protin we dεn kכl alfa-synuclein insay wi כtonom nεv sεl dεm. lεk dכti we de kכl paip, we dis protin de kכmכt na di nεv sεl dεm, dεn nכ de wok fayn.
dis protin de dכn insay di nεv bכndεl dεm (autonomic ganglia) na di tu say dεm na di spεnal kכd כ nia di כgan dεm. as tεm de go, di nכmba fכ dεn nεv sεl dεm de dכn, εn di wok we di כtonom sistεm de du de ambɔg. Bɔt di tin we impɔtant pas ɔl na dat insay PAF, di bren ɔ di spɛshal kɔd nɔ kin pwɛl . So, i nɔ de afɛkt tin dɛn lɛk fɔ mɛmba ɛn fɔ tink.
Risach pipul dεm stil nכ gεt klia aidia wetin mek dis protin de dכn lεk dis.
Rilayshɔnship wit ɔda sik dɛn
Na sɔntin we impɔtant fɔ no. dis sem protin, alfa-synuclein, na in de bil op na di bren pan sik dεm lεk Parkinson’s disease, Multiple System Atrophy, εn Lewy Body Dementia. So, sɔm pipul dɛm wae gɛt PAF (nɔto ɔl) gɛt chans fɔ gɛt wan pan dɛn sik ya as tɛm de go. Yu dɔktɔ go mek yu no bɔt dis.
Aw fɔ no bɔt dis sik?
Fɔ no se yu gɛt PAF na tin we nɔ izi fɔ du, bikɔs dɔktɔ dɛn go fɔs pul ɔda tin dɛn we kin mek yu gɛt di sik, mɔ we yu blɔd prɛshɔn go dɔŋ we yu tinap.
Di diagnostik prɔses kin inklud:
- Fɔ tek tɛm aks kwɛstyɔn bɔt yu sik ɛn mɛrɛsin histri.
- Wan kɔmplit fizik ɛgzamin ɛn nyurolɔjik ɛgzamin.
Afta dat, dɛn kin se dɛn fɔ du sɔm spɛshal tɛst fɔ no if pɔsin gɛt di sik.
| Tɛst | Simply du dis... |
|---|---|
| Tilt Tebul Tɛst | Dɛn go put yu na wan spɛshal bed ɛn afta dat dɛn go muf yu wantɛm wantɛm na say we yu tinap. Dɛn go de wach yu blɔd prɛshɔn ɛn yu at rit. |
| QSART (swet tɛst) . | Dis de luk aw di nεv dεm we de kכntro di swet de wok. dis kin εp fכ no di prכblεm dεm wit di כtonom nεv sεstem. |
| Test dɛn we dɛn kin du fɔ tek pikchɔ (lɛk MRI) . | Dɛn kin du tin dɛm lɛk bren MRI skan fɔ mek shɔ se nɔr ɔda mɛrɛsin nɔr de wae kin de kɔz de sik. |
| Labɔrɔtɔri Tɛst (Blɔd ɛn Yurin) . | Dɛn kin mɛzhɔ di lɛvɛl we wan kemikal we dɛn kɔl norepinephrine de na di blɔd ɛn urine we yu de ledɔm ɛn afta yu dɔn tinap. Insay PAF, wan chenj de we gɛt fɔ du wit dɛn lɛvul ya. |
I kin tranga fɔ gɛt bɔku tɛst, bɔt na bay we wi no di sik kɔrɛkt wan nɔmɔ wi go mek di bɛst tritmɛnt plan fɔ yu.
Wetin na di tritmɛnt dɛm fɔ PAF?
No mɛrɛsin nɔ de fɔ dis yet. Bɔt nɔ wɔri. Bɔrku tin de wae yu kin du fɔ ɛp fɔ kɔntrol yu sik ɛn liv nɔrmal layf. Yu dɔktɔ ɛn di mɛdikal tim go wok wit yu fɔ mek wan tritmɛnt plan we go spɛshal fɔ yu.
Ɔtostatik Haypɔtɛnshɔn (lɔ blɔd prɛshɔn we yu tinap) kin kɔntrol
Dis na di men prɔblɛm. Tritmɛnt dɛn de we nɔto drɔg ɛn mɛrɛsin fɔ dis.
- Tek tɛm we yu de chenj di pozishɔn: We yu de grap frɔm we yu de ledɔm ɔ sidɔm, du am sloslo . Nɔ grap wantɛm wantɛm.
- Wata ɛn sɔl: Yu dɔktɔ kin se yu fɔ drink lɛk 3 lita wata ɛvride. I kin tɛl yu bak fɔ ad smɔl mɔ sɔl to yu it.
- aw fɔ pripia di bed: Slip wit di ed fɔ di bed we dɛn es ɔp lɛk 4-6 inch. Da we de, yu nɔ go fil bɔku difrɛns pan yu blɔd prɛshɔn we yu grap.
- Kɔmpreshɔn Gam: We yu wɛr spɛshal tayt stɔkin (kɔmpreshɔn klos) we kin kam ɔp to yu wɛst ɔ yu shɔl, dat kin ɛp fɔ mek blɔd nɔ gɛda na di leg ɛn mek blɔd prɛshɔn nɔ chenj.
- Apat frɔm dis, di dɔktɔ kin tɛl yu bak fɔ tek sɔm patikyula mɛrɛsin dɛn we go mek yu blɔd prɛshɔn go ɔp.
Prɔblɛm dɛn we pɔsin kin gɛt we i de pul dɔti ɛn we i de pis
- Fɔ kɔnstipɛshɔn: Yu kin du tin dɛn lɛk fɔ it tin dɛn we gɛt bɔku fayv (vɛjitebul, frut, bran rays) ɛn yuz tin dɛn we de mek yu stɔl sof .
- Fɔ prɔblɛm wit yu urinary: If yu gɛt prɔblɛm fɔ pis, yu kin nid fɔ yuz kateshɔn. If yu nɔ ebul fɔ kɔntrol yu urine, spɛshal mɛrɛsin dɛn de (lɛk Oxybutynin, Mirabegron).
Mami ɛn dadi biznɛs di we aw Gɔd nɔ want
Pan ɔl we mɛrɛsin dɛn de lɛk sildenafil ɔ tadalafil fɔ dis, dɛn mɛrɛsin ya kin mek di risk fɔ gɛt ɔrtɔstatik haypɔtɛnshɔn bɔku. So, yu fɔ tɔk bɔt dis opin wan wit yu dɔktɔ ɛn yuz dɛn tin ya nɔmɔ ɔnda in advays.
Wetin go apin tumara bambay fɔ pɔrsin wae gɛt dis sik?
E tranga fɔ gi wan ansa bɔt de fiuja fɔ pɔrsin wae gɛt dis sik, bikɔs e kin difrɛn frɔm pɔrsin to ɔda pɔrsin.
PAF na sik we de go bifo. Bɔt fɔ bɔku pipul dɛn, i kin apin sloslo, fɔ lɔng lɔng tɛm, ivin fɔ lɔng lɔng tɛm. Sɔm stɔdi dɔn sho se di avɛrej layf we pɔsin kin liv afta dɛn dɔn no se i gɛt PAF na lɛk 12.5 ia. Bɔt dis na jɔs wan avɛrej, ɛn i kin difrɛn bad bad wan dipen pan yu sayn ɛn wɛl bɔdi. So nɔ tu hang pan dɛn nɔmba dɛn de.
If yu gɛt PAF, i impɔtant fɔ go to yu dɔktɔ ɔltɛm fɔ mek shɔ se yu tritmɛnt de wok ɛn aw yu sik de go bifo. If yu gɛt sɔm sayn dɛm fɔ Pakinsin sik (lɛk fɔ shek, i nɔ kin izi fɔ waka), yu fɔ tɛl yu dɔktɔ wantɛm wantɛm.
Mɛsej we dɛn kin kɛr go na os
- Pure Autonomic Failure (PAF) na wan sik we nɔ kin apin so ɔltɛm we kin afɛkt di nervɔs sistɛm we de kɔntrol ɔtomɛtik prɔses na wi bɔdi.
- Di men sayn na fɔ diziz ɛn fɔdɔm we yu grap frɔm we yu sidɔm ɔ ledɔm bikɔs yu blɔd prɛshɔn dɔn go dɔŋ.
- Pan ɔl we dɛn nɔ kin ebul fɔ mɛn dis sik ɔltogɛda, dɛn kin kɔntrol di sayn dɛm fayn fayn wan ɛn dɛn kin kɔntinyu fɔ gɛt ay kwaliti layf.
- No we nɔ de fɔ mek dis nɔ apin, ɛn nɔto yu fɔlt fɔ mek i apin.
- I rili impɔtant fɔ de kɔntakt yu dɔktɔ ɔltɛm ɛn fala yu tritmɛnt plan ɛksaktɔli. Nɔ fred fɔ tɔk opin wan bɔt yu kwɛstyɔn dɛn ɛn tin dɛn we de mɔna yu.
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