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I Have Alzheimer’s or Another Dementia
Lewy body dementia
I'm so sorry you're having these distressing symptoms. Somebody with experience in Lewy Body will be along soon with more information.
Meanwhile, how do you cope? First by coming here, where no matter what our situation, we get by with a little help from our friends. Welcome to club that no one wants to be a member of.
I would start by looking out at this
site. I can also put you in touch with others like you if you reach out to me privately.
Hi Tango...my husband had LBD. He did not have hallucinations for a long time and then they were what I would call "night terrors"
The people at LBDA (the site Michael gave you) were very helpful. Their message board seems to be hard to manage based on my and others comments.
They have a great booklet...I got two batches and handed them out to any medical person involved. His neuro was especially pleased...yikes...she should have had them on hand to give out herself!
by J. Eric Ahlskog (Author)
Let me know how I can help!
Welcome to the board. I am so sorry that your hallucinations are violent and cannot imagine how frightening that can be for you. I have been suspected of having LBD due to visual hallucinations, visual impairment and visually misinterpreting things in the environment. I see bugs, smoke wafting and still objects moving at times. Dark spots and shadows can look like animals and statues can move or look like live persons or animals. Things appear closer than they are and I feel like moving objects including cars are hurling at me at times. The bugs especially flies, trick me the most but they disappear. I am now aware that objects and cars are not really flying at me and cope by looking off to the side and trying to stay calm. Both bright and dim lighting bother me.
I work with persons who have severe mental illnesses some of whom are psychotic. A few are able to recognize that what they are seeing or hearing is not real and implement coping strategies to self soothe and redirect their attention away from the hallucinations. I'm sure this may be different with dementia.
Are you having visual or auditory hallucinations or both? At this point are you able to recognize that your hallucinations are false perceptions? Are you able to self soothe by deep breathing, listening to music or engaging in an activity to redirect your focus from the hallucinations?
I will try to find some information about coping strategies for hallucinations. In the meantime try to stay calm and focus on eliminating stress and environmental stimuli.
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Welcome to our world. My sympathies on your diagnosis. My advice is to fight with all you have. Reading everything is an excellent beginning.
There are other things you can do to help slow down the course of this disease, including:
(1) Sticking as closely as you can to a Mediterranean diet (with wine and nuts), which has been shown to help prevent/delay the onset of AD, and also slow its progression. See:
Basically, it involves:
- High intake of vegetables, legumes, fruits, and cereals
- High intake of unsaturated fatty acids (mostly in the form of olive oil)
- Low intake of saturated fatty acids
- Moderately high intake of fish
- Low-to-moderate intake of dairy products (mostly cheese or yogurt)
- Low intake of meat and poultry
- A regular but moderate amount of ethanol, primarily in the form of wine and generally during meal.
To that, I would add eating a quarter cup of nuts every day -- quite a few studies have found they're very good for you.
Also, olive oil is very good for salad dressings etc, but not so much so for cooking especially at higher temps. Use canola oil for that, or a mix of the two. (I've seen plenty of products that contain olive and canola oils.)
Avoid hydrogenated fats and trans fats like the plague.
(I also take Omega 3 and antioxidants.)
(2) Lots of physical exercise ... there is quite a bit of evidence it can help prevent/delay onset. (As strenuous as possible. Recent research shows such build new brain cells!)
(3) Lots of exercise for the brain -- activities that involve learning something new. I've seen some reports that learning new things coupled with using a computer can be particularly helpful. (A variety is best. Figure out what stretches your mind but is not so hard you are frustrated.)
(4) Socialization, doing things with friends and family. (Most of us do not do well in large and/or noisy groups.)
(5) Plenty of rest.
(6) NO SMOKING!!! and avoid air pollution as much as possible.
(7) Do whatever you can do to minimize stress.
(And take meds as directed.)
I can never remember all you just posted. Thanks. I was wondering if we could start a newcomer welcome thread with some of this information readily available to new PWD?
That's a great idea but if not used quickly drops out oh sight. Best seems to hope newcomer identifies as such
I don't remember names of newbies
I would like to thank you for the past 32 years of our
lives. We took those wedding vows so long ago, but they still ring true today.
I have loved you the best I could, and will continue to love you. We turned our
little family of five into a wonderful family of sixteen. I guess you could say
we were fruitful. We have lived with the riches of our family and have also
struggled with the bad times, but we have held our heads high and made it
through to the end. We have been blessed with good health for the past 32
years. Now we face a medical crisis of which we may not win. Lewy Body Dementia
may have me right now, but I vow to fight until the end. You have been the best
thing that’s ever happened to me, and I am honored to call you my wife.
Sometimes, when people say I will love you forever, they really do mean it. May
you have a Happy 32nd Anniversary, and thank you for allowing me to
say, I do. Love, Tom
What a lovely letter, Tom. Happy Anniversary!
Ah tom, thank you for posting that.
Something tells me that as a couple you have the ability to fight this thing.
And thanks to all the members who provided information.
Sir Lewy had raised his head since my last post but have been much better after a change in medicine and increase in dosage. I think I'm starting to come to terms with this rotten disease. My mood has been much better and have been able to enjoy the grandkids. Thanks for your thoughts.