tag:blogger.com,1999:blog-985636024645022382.comments2023-07-05T08:37:56.274-05:00Living with a Thief named Lewy Body DementiaKathy Lowreyhttp://www.blogger.com/profile/08866920774643291297noreply@blogger.comBlogger560125tag:blogger.com,1999:blog-985636024645022382.post-56944913140819563632020-11-23T02:54:09.506-06:002020-11-23T02:54:09.506-06:00My mother passed away 5 months ago having had Lewy...My mother passed away 5 months ago having had Lewy Body dementia for a number of years. The symptoms you have outlined are precisely those my mother exhibited and I agree that mild doses of antidepressants help ease the hallucinations but there isn’t much else that can be done other than distracting them with things they like.<br />My father passed away after a short illness, 2 and a half years before her and Mum could never really take on board what had happened to him even though she attended his funeral. She often thought he was just out for a short while. Perhaps it was a blessing in disguise because she adored him still after 67 years of marriage. It was hard telling her over and over again what had happened and being rebuked for not telling her when it happened. <br />They are now at peace together.<br />JaneJanehttps://www.blogger.com/profile/00231600087119748404noreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-8100193074477387632020-07-03T02:11:56.050-05:002020-07-03T02:11:56.050-05:00as someone who works in the health field this was ...as someone who works in the health field this was very nice Rom Herringhttps://yourdirecthealthcare.comnoreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-72772666161590205892017-12-22T01:38:58.310-06:002017-12-22T01:38:58.310-06:00Man every time we think we have it bad someone is ...Man every time we think we have it bad someone is always going through things we often do not think about Jessica Leehttps://west-coast-waterheater.comnoreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-35497231820014784382017-12-19T11:56:24.630-06:002017-12-19T11:56:24.630-06:00So sorry. My husband has not been diagnosed with L...So sorry. My husband has not been diagnosed with Lewy Bodies. As of now, in the two years of tests and MRI's we have been told he hasa Neurodegenerative Disease PPMS or a viral infection in his spine. His movements are limited to a walker, his blank stares, and his anger hurts me. If I tell him I'm tired "wtf u tired for you do nothing" If I'm playing with our cat "you're hurting MY CAT". The falls, the depression, I can go on. How long and how was your husband actually diagnosed. I am at my wits end with the 11 doctors and specialists he has seen since Oct 2015 and frustrated because he is getting worse. What are we doing wrong? They are making us think he's faking all this. I know he's not! Help! Off to his Neurologist now. Praying!Anonymoushttps://www.blogger.com/profile/05879003798034405007noreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-74969112147596869532017-12-11T00:31:00.410-06:002017-12-11T00:31:00.410-06:00Early and accurate diagnosis is important because ...Early and accurate diagnosis is important because LBD patients may react to certain medications differently than AD or PD patients. A variety of drugs, including anticholinergics and some antiparkinsonian medications, can worsen LBD symptoms. Why not see Top Georgetown Tow Truckhttp://georgetowntowing.eagletowing-tx.com/start.phpnoreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-24343275698365958652017-12-10T15:32:58.589-06:002017-12-10T15:32:58.589-06:00Hi, Donna. Thank you for taking the time to look t...Hi, Donna. Thank you for taking the time to look through the blog. Admittedly it starts off choppy because I never had a blog and I wasn't sure what I was supposed to do. As time goes on through it I hope you find something that can be useful. <br />That was my intention for starting it and as long as I am able I will continue to keep this blog for anyone wanting to learn about Lewy Body Dementia. Kathy Lowreyhttps://www.blogger.com/profile/08866920774643291297noreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-85998163165416642022017-12-10T14:57:08.843-06:002017-12-10T14:57:08.843-06:00wish I could go back and edit these like we do FB ...wish I could go back and edit these like we do FB comments, but somehow didn't realize had to have the spinal first to rule out the hydrocephalus, thought they ruled out mil's with imaging to determine about doing the spinal then see about the shuntmikchickhttps://www.blogger.com/profile/01294674892656612613noreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-90691704766155396912017-12-10T14:52:32.626-06:002017-12-10T14:52:32.626-06:00I'm not sure how interactive any of this is an...I'm not sure how interactive any of this is anymore, but my mil was also taken for testing to rule out normal hydrocephalus, which I'd just heard of, which was ruled out, which at the time thought was a good thing because thought if it was abnormal that was something could do something about, but they said it was a misnomer, normal didn't really mean normal, it was something they could something about so guess was disappointedmikchickhttps://www.blogger.com/profile/01294674892656612613noreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-87832024803174432942017-09-14T21:00:09.742-05:002017-09-14T21:00:09.742-05:00♥️♥️♥️♥️♥️♥️Anonymoushttps://www.blogger.com/profile/04389321782509982851noreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-57629057798197023682017-08-11T21:25:34.226-05:002017-08-11T21:25:34.226-05:00Hi Alicia,
Thank you for taking the time to read ...Hi Alicia, <br />Thank you for taking the time to read and share the journey. I am sad to know that others must go through this but I do hope that you and your mother find some useful information that helps make caregiving easier for you and for your father. You and your mom are in my thoughts.<br />KathyKathy Lowreyhttps://www.blogger.com/profile/08866920774643291297noreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-86752846295289914512017-08-11T20:24:40.650-05:002017-08-11T20:24:40.650-05:00My dad is suffering with LBD as we speak. So bruta...My dad is suffering with LBD as we speak. So brutal and so cruel. I've shared your journey with my mom. I hope this helps us both understand a bit better. Anonymoushttps://www.blogger.com/profile/17715380304616719311noreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-59017532072656600572017-04-30T20:09:58.184-05:002017-04-30T20:09:58.184-05:00Hi Kim,
Thank you for taking the time to update o...Hi Kim,<br /><br />Thank you for taking the time to update on Jerry.<br />Hospice is a wonderful organization to have on your team! I'm glad you have them. They certainly can add life to days. <br /><br />How sad about your little fur family member toot. I'm sure you're pretty devastated about it too. <br /><br />The rollercoaster ride of lewy is tiring for both you and Jerry, I know. I'm sure it feels like the weight of the world on your shoulders knowing you have decisions to make alone. Every decision feels right and wrong at the same time. Prayers for some peace and clarity of mind for you.<br />Kathy<br />Kathy Lowreyhttps://www.blogger.com/profile/08866920774643291297noreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-29972679425535049182017-04-30T10:43:16.191-05:002017-04-30T10:43:16.191-05:00Update on my Jerry: His condition continues to dec...Update on my Jerry: His condition continues to decline. We are grateful our PCP ordered hospice last September. They have been wonderful. Hospice covers the Exelon patch ($285/month) and provides all medications respective to his diagnosis. I don't know what I would do without them. Jerry's condition continues to decline, however, we have good days and bad days, still. He has a lot of difficulty talking (its exhausting), swallowing and walking. He has deferred all decision making to me, but he can be stubborn about sharing his pain level. Yes, he has random pain. Some days a 10, others 5. He refuses any pain meds. We lost our little dog (13 yr old dauschund, Toot) and he is devastated. LBD is a constant challenge, but I'm happy he is still able to be at home.Kim, Arkansasnoreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-30231244517417878012017-04-25T00:38:08.114-05:002017-04-25T00:38:08.114-05:00Dementia care provides you with professional and c...<a href="http://www.essentialhomecare.com.au/" rel="nofollow">Dementia care</a> provides you with professional and compassionate aged care services at your home.We believe in providing better home care services.Anonymoushttps://www.blogger.com/profile/03611898492018670297noreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-8012386569273084922017-04-20T23:33:52.501-05:002017-04-20T23:33:52.501-05:00Kathy,
Thank you so much for your insightful webs...Kathy,<br /><br />Thank you so much for your insightful website. I am sorry you've had to go through this viscous illness as well. This disease truly is a thief, well said. Our family flew to Maui (from LAX) with my father (I'm 40, he's 71) for one last trip to the family timeshare; what a big mistake. My dad became very confused and agitated on the flight and was ultimately subdued by an air marshal and taken off the plane on a stretcher with stiff legs that wouldn't bend, a dazed expression, and his mouth was ajar. Unfortunately, I wasn't on the flight to offer assistance. After two days in the hospital, he was discharged and here we sit in the timeshare trying to figure out how we're going to get him home. Well, I just wanted to personally thank you for this site you've created. Best wishes to you and your family. <br /><br />PS. To anyone thinking about traveling on a plane with a LBD loved one, please carefully consider the dramatic impact the flight may have on your loved one. There's always Facetime or Skype!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-43466252727553100592017-03-08T22:30:44.904-06:002017-03-08T22:30:44.904-06:00Hi and Thank you for taking the time to read and c...Hi and Thank you for taking the time to read and comment. <br />I am sad to know that you and your husband must travel the lewy journey. I hope that you can get a proper diagnosis as I'm sure you know through your research that some meds that work on other dementia symptoms can actually make things worse for lewy. <br />I hope you can find some useful things in this blog that can benefit you as well as your husband. <br />Please keep in touch.<br />KathyKathy Lowreyhttps://www.blogger.com/profile/08866920774643291297noreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-22261808047449569012017-03-08T22:03:25.567-06:002017-03-08T22:03:25.567-06:00As I've read your blog, it feels like I've...As I've read your blog, it feels like I've written it myself. My husband was diagnosed only a couple of weeks ago with LBD. I've "diagnosed" him over a year ago. I'm Not a doctor, but, research the poop out of this nasty disease. I read all I can about LBD, caregiving, etc.<br />I, too, pray. Its the only thing that's helped me cope.<br />My hubby is hallucinating more. Had fallen, I couldn't TELL ya how many times. Sometimes he'll sleep for several days, to where I've had to stay home from work to tend to him. <br />I go through the same emotions that you've written about. God bless you. I am praying for you.Anonymoushttps://www.blogger.com/profile/07454154956445841450noreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-88006357835806874642017-01-24T15:59:13.393-06:002017-01-24T15:59:13.393-06:00Hi and Thank You for asking.
Dementia is a blanket...Hi and Thank You for asking.<br />Dementia is a blanket term that describes cognition issues. Alzheimer's is a type of dementia, as is Lewy Body , frontal temporal, vascular etc. Kathy Lowreyhttps://www.blogger.com/profile/08866920774643291297noreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-27285007343091477072017-01-24T09:35:00.020-06:002017-01-24T09:35:00.020-06:00What's the Difference Between Dementia and Alz...What's the Difference Between Dementia and Alzheimer's Disease?<br /><a href="http://www.traditionsseniorliving.com/" rel="nofollow">senior apartments</a>Anonymoushttps://www.blogger.com/profile/05933253257525088918noreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-64231542572190364412016-11-12T06:45:47.811-06:002016-11-12T06:45:47.811-06:00This is a very comprehensive site. Thank you for y...This is a very comprehensive site. Thank you for your input.Kathy Lowreyhttps://www.blogger.com/profile/08866920774643291297noreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-78147026707326686372016-11-11T11:20:56.266-06:002016-11-11T11:20:56.266-06:00People with Lewy Body Dementia are more likely to ...People with Lewy Body Dementia are more likely to develop initial and early symptoms of sleep disturbances, hallucinations, gait impairment and also visuospatial impairment. Alzheimer’s shares some common symptoms with Lewy Body Dementia, coexists and contributes to the dementia which sometimes becomes difficult for the doctors to differentiate between them. Additionally, most commonly seen symptoms of Lewy Body Dementia include recurrent visual hallucinations or delusions, problems with dealing tasks, sleep disturbances, mental decline and spontaneous motor impairments. Autopsy is one of the ways of diagnosing Lewy Body Dementia in people and the core diagnostic criteria for Lewy Body Autopsy include; progressive dementia, visual hallucinations, rapid-eye-movement, sleep behavior disorder and signs of Parkinson’s disease. A diagnostic test known as Lewy body composite risk score (LBCRS) designed to diagnose Lewy Body Dementia and Parkinson’s disease Dementia. The test was simply designed of some questions asked to check the mental conditions of the patients with a simple answer of yes and no and also previously conducted test results authenticated and assured the clinical detection of Lewy Body Dementia and their contribution to Dementia with this test. Medicines over therapies, not a good idea. Normally medications used to treat mental disorders are mostly accompanied by other symptoms such as sedation, hallucination etc. Most of the times doctor recommends antidepressants to the Lewy Body Dementia patients which in my opinion should not be taken in excess. Better try behavioral and counselling therapies instead.<br />Reference: http://bit.ly/2e5hYgUAnonymoushttps://www.blogger.com/profile/05967473750368802790noreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-81563262501808016642016-10-03T21:23:04.689-05:002016-10-03T21:23:04.689-05:00Hi Kathy,
Thank you for your quick reply. I felt t...Hi Kathy,<br />Thank you for your quick reply. I felt this was probably the reason but I appreciate you letting me know. Dave has good days and bad days. His temper is quite explosive and can be triggered unexpectedly. He has always been somewhat that way but LBD seems to make this particular trait multiplied and on steroids. He is obsessive about watching TV and if anything interferes with his ability to hear he can be pretty nasty. He is also quite protective of what he feels are "his things". The remote control, the check book, the debit card.<br /><br />I have noticed his ability to spell has greatly decreased and his ability to make good financial decisions is scary. We went through a period about 8 years ago where we almost lost our home due to some very risky financial decisions. At the time I didn't realize what was going on but looking back I think Lewy was already making himself known. He had a line of credit against our home which was paid for, borrowed money from our son and had purchased a beach house. He forged my name on a bank document. We managed to save our home by getting a reverse mortgage and paid off the debts plus sold the beach house. Now it seems he is heading back in that direction and thinks I am over reactive when I talk to him about using the credit cards or setting up the ability to borrow against what little money we have left in our retirement fund.<br /><br />Kathy, you and others who have been through all of this is what keeps me going. Thank you again for your reply.<br /><br />Many Blessings!<br />donna donnahttps://www.blogger.com/profile/07741170510163039164noreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-78063128227010287012016-10-03T09:16:58.409-05:002016-10-03T09:16:58.409-05:00Hi Donna,
Thanks for asking. We stopped the galant...Hi Donna,<br />Thanks for asking. We stopped the galantamine because it had become non effective. Hubby never had any adverse side effects from it and right after he started taking it the cognition change was such that I wanted to hug the makers. Eventually it was increased to the full max dose and as his disease progressed it truly was no longer helping. To be honest it had probably stopped being effective long before we stopped it but I was afraid of what the decline might have been. When we stopped it, there were no changes, good or bad.<br />Keep in touch.Kathy Lowreyhttps://www.blogger.com/profile/08866920774643291297noreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-66514048007619789202016-10-03T07:40:03.543-05:002016-10-03T07:40:03.543-05:00Hi Kathy,
I just read your post about stopping yo...Hi Kathy, <br />I just read your post about stopping your Hubby's galantamine. I hope you won't mind if I ask why. Dave was originally on Aricept which seemed to make him more agitated, the doc was going to put him on the Exelon patch but he sweats profusely when he is out and about on he farm. The other alternative was galantamine. Dave seems to have done pretty well with this. Just wondering if it begins to stop working or if side effects develop after extended use.<br />thanks!!<br />donnadonnahttps://www.blogger.com/profile/07741170510163039164noreply@blogger.comtag:blogger.com,1999:blog-985636024645022382.post-37833118643892270842016-08-28T16:45:03.813-05:002016-08-28T16:45:03.813-05:00Hi Kim,
Thank you for the update. I know it's ...Hi Kim,<br />Thank you for the update. I know it's frustrating and scary to change meds for cognition issues. I was always afraid to stop Hubby's galantamine for fear of where that would leave us. Eventually we did stop it and there were no immediate changes for the worse, just the steady lewy decline. <br />Keep in touch,<br />KathyKathy Lowreyhttps://www.blogger.com/profile/08866920774643291297noreply@blogger.com