'n Hele klompie maande later kan ek kom getuig: So trots op my moederlief. Sy besef dat daar 'n probleem is met 'onthou' maar daar is geen tekens van die vorige aggressie wat beskryf was nie. Waar sy nou versorg word deur my ander sus en swaer, is die terugvoering gerusstellend en moederlief word beskryf as 'n liefdevol-verstrooide pasientjie. Ons is innig dankbaar.
Hierdie afdeling was werklik afgeskeep die laaste paar maande en ek wil graag meer konsentreer op
Lewy Body Dementia. 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 suurstof tekort, het ek die plasing eers verwyder. Indien jy dit wel gelees het en enige vrae het, kontak my asseblief.
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. Dokters/spesialiste is verstom oor hoe duidelik pasiente hulle hallusinasies in alle vorme kan herroep. Verbasend kan hallusinasies al jou sintuie insluit en nie net jou sig nie. Dus kla pasiente 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 pasient sowel as die persoon 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_4jdwpeIWz3HzkSUghttps://www.youtube.com/watch?v=ODpjtJHD7HYIt Took Seven Doctors to Diagnose Don Kent (former Lawyer) with Lewy Body Dementia
