15 hours ago
"After months, my dad's hallucinations worsened to the extent he did not want to go out or be left alone. His sleep became erratic. It put a strain on my mum and the whole family. However, after a couple of non-starters, we got the right mix of medication and joined a support group. We got in touch with local groups who welcomed him to attend their activities – there was walking football, a putting group, and a general chatting group. This group allowed him to mix with others who had LBD and participate in activities that mentally stimulated him. Also, it gave my mother a break.
Sadly, as time went on, his health deteriorated, and he did not sleep at all at night. He preferred to nap a lot during the day. Nothing we did could turn this around. He also could no longer dress and needed help to go to the bathroom. There was always the possibility of accidents during the night.
Despite this, I am proud of my mum for keeping my dad at home for as long as possible." - Pam's Story
To read more of Pam's story, follow the link here>
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I hope your Mom has been able to get over caregiver fatigue and guilt. I know it took me a very long time for me with my dad.
I do not understand why specialist cannot see when someone has LBD...I also told them that's what I thought my husband had!! He had ALL the symptoms!! He suffered because he knew he was seeing and behaving abnormally!! All b I did was read about symptoms!! He was my best friend and husband for 51 yrs!!
Your story sounds much like ours, Pam. It was heartbreaking to watch my Dad go through LBD. Unlike your Dad, mine didn't want to get involved in activities so it was so hard on my Mom. She was his primary caregiver (and we all know the stresses of that). I'm glad we have this group so we all know we're not alone. <3
I have the same with my mom but I have used vielight therapy , I bought a bidet to avoid UTI'S , use natural colon cleanse vitamins , and blueberry gel caps from costco twice a day for brain health . She is doing well .
Chris Schwilk and Don Kent, two of LBDA’s passionate volunteers and LBD advocates, shared their initial LBD symptoms with Being Patient. The article, ‘How I First Knew Something was Wrong:’ An Oral History of Early Dementia, reveals how variable initial dementia symptoms can be.
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There are resources available for helping you navigate your journey with Lewy body dementia.
To find a support group near you, visit the link here>
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Dementia-related psychosis refers to behaviors that can include hallucinations, delusional thinking, agitation, or aggressive behavior. A July 2020 survey sponsored by UsAgainstAlzheimer's, the Lewy Body Dementia Association, and Acadia Pharmaceuticals, involving 212 patients, found that 61 percent experienced visual hallucinations weekly.
"While psychosis can be more common as dementia advances, visual hallucinations can be an earlier symptom of Lewy body dementia and Parkinson's-related dementia," says Jennifer G. Goldman, MD, FAAN, a member of LBDA's Scientific Advisory Council.
Click on the link below for more information. ow.ly/zz8Y50EDizg
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Let’s call ‘behaviors’ something else, like expressions or symptoms. To the world at large, behaviors are deliberate and tameable, which anyone who intimately works with dementia patients knows is not the case.
My husband was diagnosed of Parkinsons disease 2 years ago, when he was 59. He had a stooped posture, tremors, right arm does not move and also a pulsating feeling in his body. He was placed on Senemet for 8 months and then Siferol was introduced and replaced the Senemet, during this time span he was also diagnosed with dementia. He started having hallucinations, lost touch with. Suspecting it was the medication I took him off the Siferol (with the doctor’s knowledge) him on PD natural herbal formula we ordered from TREE OF LIFE HEALTH CLINIC, his symptoms totally declined over a 3 weeks use of the TREE OF LIFE HEALTH Parkinson's disease natural herbal formula. He is now almost 61 and doing very well, the disease is totally reversed! (w w w. treeoflifeherbalclinic .com)
Journalist, blogger and LBD advocate, Mike Oliver, adds his personal insights to LBDA’s 10 Things You Should Know about LBD.
Check out the link here> bit.ly/2JFokVz
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Excellent thank you for posting