Lewy Body Demensie (LBD)

[Meraai vannie Baai]

*As jy enige kommerwekkende simptome ervaar - besoek jou geneesheer. Erkenning is gegee aan inligtingsbronne wat gebruik was.

You may not realize it, but every time you share your story, you're taking the hand of someone who thought they were the only one experiencing the unknown.

Lewy Body Demensie (LBD), ook bekend as demensie met Lewy bodies, is die tweede mees algemene tipe progressiewe demensie na Alzheimer's. Proteïenafsettings, genaamd Lewy-liggame, ontwikkel in senuweeselle in die breinstreke wat betrokke is by denke, geheue en beweging (motoriese beheer). Lewy body demensie veroorsaak 'n progressiewe afname in verstandelike vermoëns.

Simptome: Lewy body demensie tekens en simptome kan die volgende insluit:

Visuele hallusinasies. Klank- (ouditiewe), reuk- (olfaktoriese) of aanraking (tasbare) hallusinasies is moontlik

Bewegingsversteurings. Tekens van Parkinson se siekte (parkinsoniese tekens), soos vertraagde beweging, rigiede spiere, bewing of 'n skuifelwandeling kan voorkom. Dit kan lei tot val.

Swak regulering van liggaamsfunksies (outonome senuweestelsel). Bloeddruk, polsslag, sweet en die spysverteringsproses word gereguleer deur 'n deel van die senuweestelsel wat dikwels deur Lewy-liggaam-demensie aangetas word. Dit kan lei tot skielike dalings in bloeddruk wanneer jy staan ​​(ortostatiese hipotensie), duiseligheid, val, verlies van blaasbeheer (urieninkontinensie) en dermprobleme soos hardlywigheid.

Kognitiewe probleme. Probleme soortgelyk aan dié van Alzheimer's - verwarring, swak aandag, visueel-ruimtelike probleme en geheueverlies.

Slaapprobleme. Vinnige oogbeweging (REM) slaapgedragsversteuring, wat kan veroorsaak dat drome fisies uitgeleef word terwyl jy slaap. Dit kan gedrag behels soos slaan, skop en gil terwyl jy slaap.

Wisselende aandag. Episodes van lomerigheid, lang tydperke van in die ruimte staar, lang slapies gedurende die dag of ongeorganiseerde spraak is moontlik.

Depressie.

Apatie. Motiverings verlies.

“Judy Kauser suffered with such severe leg pain her physician contributed it to back pain, when she became confused and disoriented the doctor blamed it on her medication. It was two years later Mrs, Kauser was diagnosed with Lewy body dementia, not severe muscle cramps.

https://www.youtube.com/watch?v=ThsaAEHB3jY&t=379s
LIVING WITH LEWY BODY DEMENTIA EP.7 | SHOWTIME WITH JASON

Alhoewel dit verskil in kliniese geskiedenis, gegewe die kliniese en patologiese ooreenkomste tussen PD (Parkinson's Dementia) en demensie met Lewy -liggame, word die term Lewy body dementia (LBD) soms as 'n sambreelterm gebruik om na beide demensies te verwys.

Mense met Lewy Body demensie is meer geneig om hallusinasies te ervaar as dié met Alzheimer se of vaskulêre demensie, en oor die algemeen ervaar hulle dit vroeër in die siekteproses as wat mense met ander vorme van demensie doen. Vir sommige mense kan hierdie hallusinasies selfs een van die eerste simptome wees van Lewy-liggaam-demensie wat hulle ervaar.

Tot 80% van mense met Lewy-liggaam demensie ervaar visuele hallusinasies. Hierdie hallusinasies is dikwels herhalend en baie gedetailleerd. Hallusinasies van volwassenes, kinders of diere is algemeen.

Visuele hallusinasies is dus 'n vroeë geïdentifiseerde kenmerk van demensie met Lewy-liggame en word geassosieer met meer ernstige, vinniger progressie wat tot vroeër opnames in versorgingsoorde en die dood kan lei.

Kennis is mag. Dokters moet meer bewus wees van Lewy Body Demensie as pasiënte kla oor hallusinasies en nie voorheen ander geestesprobleme gehad het nie. Antipsigotiese medikasie lei tot oormatige morbiditeit en sterftes en moet slegs gebruik word in gevalle van hoë nood wat andersins nie reageer op behandeling nie.

About half of people with Lewy body dementia are extremely sensitive to typical antipsychotic medications including Haldol and can experience severe and life-threatening reactions to them. Atypical antipsychotics may be less likely to provoke a serious reaction but caution is very important when considering the use of antipsychotic medications in Lewy body dementia.

It's also important to note that in some people with Lewy body dementia, Sinemet (carbidopa/levodopa)—a medication that may be prescribed to treat the movement challenges of the disease—can cause or worsen hallucinations in these people.

Ongelukkig word hierdie middels te gou voorgeskryf wanneer pasiënte kla oor die verskyning van hallusinasies. Daar word beraam dat 'n hoë persentasie van demensie met Lewy Body-pasiënte erger word met parkinsonisme, sedasie, immobiliteit of selfs neuroleptiese maligne sindroom (NMS) na blootstelling aan antipsigotika middels.

NMS is 'n seldsame, lewensgevaarlike mediese noodgeval wat gekenmerk word deur koors, algemene rigiditeit en afbreek van spierweefsel wat nierversaking en selfs die dood kan veroorsaak. Die verhoogde risiko van NMS in Lewy Body Demensie, vereis dat tipiese of tradisionele antipsigotika (soos haloperidol, flufenasien of tioridasien) vermy moet word weens die feit dat dit geassosieer word met verhoogde sterftes as gevolg van beroerte in demensie en parkinsonisme.

NMS kan spiere beskadig en baie hoë of lae bloeddruk veroorsaak. As jy nie behandel word nie, kan jy ernstige probleme ontwikkel:

Nierversaking
Hart- en longversaking
Gebrek aan suurstof in die liggaam
Infeksie in die longe veroorsaak deur inaseming van vloeistof (aspirasie longontsteking)
Verhoogde suur in die liggaam.

Soos wat ek reeds by Asemdief gedeel het, het my eie ervaring met hallusinasies ons ernstiger laat navorsing doen oor hierdie toestand. Tot ons sekerheid het dat dit alles bloot toegeskryf kan word aan verhoogde drukking en suurstoftekort. Die besoekende dokter het die verband betwyfel en was versigtig om sy opinie te lig. Intussen duur my soektog voort.

https://www.webmd.com/.../what-is-neuroleptic-malignant...

[Meraai vannie Baai]

As 'n mens luister na wat persone ervaar met LBD is een van die kommerwekkende simptome wat kan dui op hierdie demensie-tipe, die voorkoms van 'hallusinasies' in die begin stadium van die toestand in vergelyking met die voorkoms van hallusinasies in meer gevorderde vorme van ander demensies (soos hierbo reeds genoem).

Dokters/spesialiste is verstom oor hoe duidelik pasiënte hulle hallusinasies in alle vorme kan herroep. Verbasend kan hallusinasies al jou sintuie insluit en nie net jou sig nie. Dus kla pasiënte oor vreemde reuke, probleme met smaak (sout proe soet ens.) Daar is ook  gehoorprobleme en tas-sintuig kan ook verwar word as 'n gevoel dat iemand aan jou raak of iets onder jou vel kriewel.

Nog 'n groot probleem is dat jou balans aangetas word en ernstige beserings opgedoen kan word indien die persoon val. 'n Ander simptoom wat soms jare kan voorkom voordat enige ander simptome verskyn is die fisiese uitvoering van aksies wat in drome geskied en ook hier is daar die gevaar van besering. Vir die pasiënte sowel as persone in die nabyheid.

Dit neem soms jare om hierdie vorm van demensie te diagnoseer aangesien dit soms verwar word met Alzheimer's of Parkinson's weens die verstywing van ledemate en rukkerige bewegings. Ander word gediagnoseer met 'sielkundige probleme'.

Baie kla ook oor asemhalings- en hartprobleme en na voltooing van 'n reeks toetse kon geen fisiese probleem opgespoor word nie. Ek deel met toestemming die volgende beskrywing van 'n LBD pasient: Curry Whisenhunt

"Before I was diagnosed with (LBD) Lewy body dementia in 2016, some of my first symptoms were, loss of breath, severe fatigue but unable to sleep, and hallucinations. When crossing Arizona I would see saguaro cacti waving at me, running along side of me also.  I would see people riding on my running boards trying to get in while I was going down the road.

I even had a giant lizard try to get in while I was driving. Then I started seeing people cross in front of me on the hiway, but yet I could see through them. I saw broke down vehicles in the middle of the road, I would slow and scoot over for them then see through them too. I had delusions of people being in my truck and found all my cabinets open and my food stuff and microwave all in the floor of my sleeper...... while walking sparky at billy the kids gravesite, in New Mexico.

I drove the truck approximately 60 miles after this but didn’t know it.  Don’t remember driving it at all........ and so many other hallucinations like these......

I drove nights by choice and slept during the daytime, but it got to where I wasn’t sleeping. I’d work 14 hours, then take a 10 hour break to eat and sleep, and shower and be ready to go again, but it got to where I was only sleeping 2-3 hours a day. It got to where I was so tired I would only drive 10 hours and take a 14 hour break. I would be so tired I wouldn’t get up to eat or shower. Instead of showering every night, I’d go 4-5 days without showering and stay in bed trying to sleep.

I never did cause myself to have a late load, because I’d still drive 600 miles a night. But my eating and hygiene took a back seat to trying to sleep. I would come home for 2-3 days and I’d sleep the whole time I was home. It was very irregular for me. My depth perception got way off, I’d come to an intersection with a stop sign and I would find myself stopped halfway out in the intersection, I would go to take exit ramps only to realize I hadn’t slowed down enough to take them without rolling my truck, so I had to pass them by. I’d be driving down the road in very familiar places and not know where I was. I was leaving truckstops and heading east when I should’ve gone west......Linda Dudley Whisenhunt and I contributed all these things to just being tired and overworked. I also lost my breath.

I got so bad I couldn’t walk the length of my truck and trailer without being exhausted and out of breath, this shortness of breath lasted over 70 days before Linda talked me into going to see a doctor. I knew something was wrong, but I really thought with all the above that I was losing my mind. That I was going crazy mentally. I started having to take home time pretty regular to get into see the doctor. She had no idea what was going on. I asked her one day if it could be dementia, she told me no....... she thought with my family history and the fact that I was smoking 4  packs a day, that I had cancer.

Meanwhile while she got me set up to see a lung specialist. the fatigue and hallucinations and confusion continued. I’ve seen the walls of our house heaving in and out like our house is breathing. I’ve looked down at my thigh while sitting, only to see it covered in blood, I’d go to wipe the blood away only to realize, there was no blood, I was hallucinating again.....
no problems were found in my lungs. They were in good shape, so next was a heart specialist, again no problems, my heart is strong. Then the neurologist, she too said no dementia, it must be cancer somewhere in my body, but no one could find it. I had mri’s run, cat scans, all kinds of blood tests, eeg ran, they tested me for everything possible but no cancer....... anywhere

It was 8 months of let down, we needed to know what was going on and why. Linda got all my medical records, copies of all the different tests and all, put them in a nice notebook and we started all over again.  My new pcp I went to see, so he could refer me to an oncologist to find the hidden cancer everyone said I had. He looked at and read all my records, all the test results and said you don’t have cancer, you have Lewy body dementia........  what was this? We had never heard of it before. But we came home with the reason for all these things happening to me. We immediately hit the internet, found the Lewy body Dementia Association and started meeting others who had been through this same stuff...... it was a big relief to have a diagnosis, even if it wasn’t a favorable one........ there’s a lot more to tell since then. It’s been over 4 years since I was diagnosed...... I would love to write a book about this,  people need to know what Lewy body does to a person.

All the above is prior to diagnosis, it’s just a short summary of that time. There were many other episodes and symptoms.

A printable booklet that the Lewy Body Dementia association distributes about living and managing Lewy body dementia. It’s for families and people living with Lewy body https://www.lbda.org/lewy-body-dementia-information-for-patients-families-and-professionals/?fbclid=IwAR2TDLtmFZEe0CrvXI73qAfKo_4uKWpfBSsPo52oXb_4jdwpeIWz3HzkSUg

https://www.youtube.com/watch?v=ODpjtJHD7HY
It Took Seven Doctors to Diagnose Don Kent (former Lawyer) with Lewy Body Dementia

https://www.youtube.com/watch?v=oTOCXCpVkVQ

Don Kent is living with Lewy Body Dementia and illustrates what it is like to live with Lewy Body Dementia.

https://www.youtube.com/watch?v=DR_bWjhAzQs&t=401s
Behavior and mood symptoms in Lewy body dementia

https://www.youtube.com/watch?v=xxJuNw9PV50&t=775s
Man With Lewy Body Dementia Misdiagnosed for Years

SYNTap™ Biomarker Test (Nog nie beskikbaar in alle lande nie. My naam is op die lys om getoets te word sodra dit beskikbaar is in Australia.)

Die SYNTap™ Biomarker-toets diagnoseer LBD, wat die eindelose hel van onsekerheid beëindig. Misdiagnose is 'n grimmige feit vir LBD-pasiënte. Konserwatief geskat tot 50%!

Dit is 'n toets wat die biomerker Synuclein opspoor, wat lei tot Lewy Body Dementia. Deur opsporing op molekulêre vlak kan dokters die siekte nou met selfvertroue diagnoseer.

Wie moet hierdie toets aflê?

Vroeë geheueversteuring simptome, wat kan dui op Alzheimer's of ander neurodegeneratiewe breinsiektes kan wees.

Tekens van kognitiewe agteruitgang en outonome simptome, insluitend slaapversteurings, hardlywigheid, hartklopprobleme of floutes.

Tekens van kognitiewe agteruitgang en bewegingsprobleme, insluitend rigiditeit, bewing, skuifelgang of na een kant leun.
Die toets help dokters om LBD vas te stel, wat behoorlike behandelingsplanne vir hul pasiënte bemagtig.

Die voordele is oorvloedig en merkwaardig.

Maak die vroeë diagnose van LBD moontlik. Selfs dekades voordat simptome verskyn.

Onderskei LBD van Alzheimer's en ander breinsiektes, wat dokters bemagtig om die regte pasiënt beter met die regte geneesmiddel te behandel.

Beëindig die onstuimige rit van die emosionele, finansiële en geestelike dreinering van onsekerheid vir die pasiënte en hul geliefdes.

Voorkom die ellende van verkeerde diagnose, wat daartoe lei dat die toediening van verkeerde medikasie meer ernstige newe effekte as hulp veroorsaak.

* https://amprionme.com/lewy-body-dementia/lbd-test/?fbclid=IwAR0h8KSoRJ5HykvfYg21hAAaLdGVoWXnOuFvjqb0JktzUCKBjWZs4Ts9GuI

[Meraai vannie Baai]

Bewusmaking van Lewy Body Demensie het 'n ironiese hupstoot gekry na die selfmoord van Robin Williams en daar bewyse gevind is van verspreide Lewy Bodies in die brein.

Ek haal aan uit 'n plasing wat ek in "Die komiese hel van hallusinasies" gemaak het:

As daar kennis was van die toestand in Robin Williams se kring van kennis/vriend/familie, kon hy dalk nog gelewe het en die nagmerrie van Lewy Body Dementia, kon verbeeld soos net hy in staat sou wees.

Wat 'n ongelooflike bewusmaking kon dit nie wees nie. Robin het alleen geveg teen 'n oormag. Eers na die nadoodse ondersoek was daar vasgestel dat hy Lewy Body Disease (of te wel demensie met Lewy Bodies) gehad het in erge voorkoms. Daar was blykbaar skaars 'n deel van sy brein en breinstam wat nie aangetas was nie.

Die hel van onsekerheid en vrees vir die toekoms wanneer jy nie meer weet wat is eg en wat is nie, sal net ten volle verstaan word deur diegene wat saam veg teen die terroriste in jou brein, soos wat Susan Schneider Williams dit beskryf het. Ek sidder as ek dink waarmee hy geworstel het sonder om te weet hoekom hierdie vyftig-tentakel-simptome (wat verskyn en verdwyn soos hulle wil) hom dag en nag geteister het. Hom genoop het om 'n einde te maak.

Die geestesoog se beelde
wat nie bestaan nie
maar ook 'n werklike bedreiging is
los bang tralies in onwerklikheid.
© Assie

Susan het in 'n onderhoud erken dat daar soveel simptome verskyn het dat sy begin wonder het of Robin paranoias raak  Ek deel 'n paar van die simptome waarmee pasiente geteister word:

Tentakel-simptome na aanleiding van pasiënte se eie ervarings
Hallusinasies
Onverstaanbare angs/depressie
Geaardheidsverandering
Slaapverandering (soms so min as 1.5 uur 'n nag)
Remslaapversteuring (uitleef van drome)
Wisselende konsentrasie probleme
Onwillekeurige tremor-agtige bewegings
Smaak probleme
Ervaring van vreemde reuke
Gevoel van iets wat loop op jou/onder die vel
Woord-vind-probleme
Verwarde gevoel (net so skielik weer normaal)
Duiseligheid/naar/balansprobleme
Skielike onverklaarbare lae bloeddruk wat net so skielik weer hemelhoog sal styg
Sig probleme: Onsekerheid vir trappe klim (trappe lyk of dit beweeg)
Bang om oor sekere oppervlaktes te loop weens 'n probleem om diepte te skat
Ervaring van dinge wat beweeg en voor jou beland soos bome, padwysers, motors ens.
Onverklaarbare probleme soms met werking van bekende toerusting
Rustelose beensindroom / tone wat 'twitch'
Verandering in eetgewoonte
Begin hoes na drink van koue water/warm vloeistof (asof verstik)
Intense uitgeputheid (goeie en slegte dae)
Raynaud’s sindroom
Charley Horses (leg cramps)

https://www.youtube.com/watch?v=lBsEiZX5w8U
Robin Williams' secret battle with a rare degenerative brain disease

https://www.asc3.org/health-blog/muscle-cramps-charley-horses

[Meraai vannie Baai]

Curry Whisenhunt het toestemming verleen dat hierdie plasing gedeel kan word vir my bewusmakingsveldtog oor Lewy Body, uit die oogpunt van die pasiënt. Ek plaas dit soos hy dit geskryf het. (Ons moet in ag neem dat dit 'n tydsame proses is vir Curry om te tik).  Ek het groot respek vir hierdie brawe man wat sy eie bewusmakingsblad op Facebook behartig.

So this Friday will make 4 out of the last 5 weeks that I’ve been down fighting Lewy and Parkinson’s symptoms…… for the last 5 years I’ve had pretty bad pain, between the arthritis in my back, the bulging discs in my back, the arthritis in my knees and then the pain from Lewy….. yes I said the pain from Lewy….. what I’m talking about is first off the severe joint and muscle pain that comes with Lewy.

At times it can make it so almost impossible to get up, let alone to walk around here. I usually try to help Linda with the chores of feeding and watering the chickens and goats, but there are times (like the last month) that I haven’t been able to even get down off the back deck to help her. So I lean on the deck rails and watch her as she does it all….. her and my grandson…… over the last five years I’ve had many times where my whole body tenses up.
It’s very uncomfortable and no matter what, I cannot relax, or rest and I must get up and walk around.

This may happen anytime during the day or night…..I can always feel when this is coming on, yet most of the times it will last as long as six hours, it’s so uncomfortable. I walk around then I try to sit down and relax, hoping to go to sleep but I just keep tensing up. Eventually it will pass and I will fall asleep.

What started happening about a month ago is I started having “interior tremors” along with everything else. I don’t know how to describe this other than I feel shaky all over but it’s internal….. I feel like I’m going to jump right out of my skin. I feel so shaky in my hands, arms, legs, feet even in my belly and back and it feels like I’m so shaky that it actually hurts. I’ve always had a high pain tolerance, but this is really bad.

There’s nothing that stops it. I had it for two weeks, then it left for a week then it came back for a week. It left again Saturday and Sunday but came back Monday….. the inside tremors seem to exacerbate all the other Lewy symptoms and my shortness of breath as well, so I’m dealing with that being worse as well….

The shortness of breath has been linked by my doctor to the Lewy bodies causing my brainstem to “misfire”…. This happening along with other symptoms is what made me originally seek medical attention in 2016 which led eventually to my Lewy body Dementia diagnosis. So that’s where I’m at right now. Just “riding the ride” again, to wherever Lewy leads me, until we get back on an upward fluctuation again….. sorry this was so long……
LBD by Curry Whisenhunt

[Meraai vannie Baai]

Inligting gedeel slegs as bewusmaking:

Norrms McNamara: A fragment of my mind

Norrms noem dat selfs as sou daar net die kleinste deeltjie van sy gedagtes oorbly na demensie sal hy 'n gelukkige man wees. Hy vertel verder dat hy nog nooit baie in die lewe gevra het nie, maar as dit wat hy gedeel het met sy eie ervaring met demensie 'n nalentskap kan wees om ander te help sou dit wonderlik wees.

You see living with this horrid disease is, and can be, so hard at times; it takes away your confidence to do the things you used to.

You lose your life skills, some lose their speech completely and some become so introvert they disappear into a world of their own, so you see it’s so important to try and help others while you can.

Sometimes, on my bad days, I find it hard to put a sentence together, my food misses my mouth and the two legs attached to my body feel as if they have been taken over by someone with a remote control and they want to go the exact opposite way that I do! My food misses my mouth and the two legs attached to my body feel as if they have been taken over by someone with a remote control and they want to go the exact opposite way that I do


https://www.torbayweekly.co.uk/news/norrms-mcnamara-a-fragment-of-my-mind-8435412?fbclid=IwAR2xX60sM6CWnRV-Nqt8hC4MsGsU74G2y5xTruFiiaJxUKNLjmBfoI567H0

As jy of 'n familield/vriend kennis gemaak het met Lewy Body Dementia kan jy vra om aan te sluit by hierdie groep op Facebook.
https://www.facebook.com/groups/1782340522035405

Die onderstaande gedig was geskep toe ek besig was om die bewusmaking vir Lewy Body Dementia saam te stel. Onwillekeurig het ek begin wonder wat bly oor as 'n mens nie meer kan kommunikeer nie? Die verlies wanneer jou taal onverstaanbaar geraak het en jy binne jouself toegesluit is, woordloos. Kon nie help om te wonder of 'n taal kan 'sterf' nie. Hoe sou dit my raak? My taal is my alles -  geliefd soos 'n beminde en so was die gediggie metafories gebore:

Jou oë van saffier in die fleur van jou lewe
was die lig op my pad en jou vel, 'n fluweelkaros.
Jou stem, die hemelse musiek en balsem vir my siel
en vlindersag soentjies, die heuning op my lippe;
jou arms, 'n veilige hawe teen warrelwind van chaos
maar nou's jou stem stil en my hart van ysterklip
klop, klop, klop vrugteloos aan die hemel se deur.

© Meraai vannie baai

[PM]

My hare rys.  Ek wil eintlik nie hier kommentaar lewer nie, dit voel vir my of ek op heilige grond loop.