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Lewy body dementia
Tango
Posted: Monday, February 22, 2016 12:04 PM
Joined: 2/3/2016
Posts: 5


Hello, this is my first post.
I am 55 and have Lewy body dementia.

 

How do I cope?
Tango
Posted: Monday, February 22, 2016 12:58 PM
Joined: 2/3/2016
Posts: 5


I try to stay positive but keep slipping into a deep dark depression. I have lost my sense of self. I am on several medications. The hallucinations have been the worst part so far they are very violent.
Unforgiven
Posted: Monday, February 22, 2016 1:10 PM
Joined: 1/28/2013
Posts: 2551


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.


Michael Ellenbogen
Posted: Monday, February 22, 2016 1:49 PM
Joined: 11/30/2011
Posts: 2494


 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.

 

https://www.lbda.org/

 

 


jfkoc
Posted: Monday, February 22, 2016 4:07 PM
Joined: 12/4/2011
Posts: 17302


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!

Helpfull book:

Dementia with Lewy Bodies and Parkinson's Disease Dementia: Patient, Family, and Clinician Working Together for Better Outcomes 1st Edition

by J. Eric Ahlskog  (Author)

Let me know how I can help!


llee08032
Posted: Monday, February 22, 2016 9:15 PM
Joined: 5/20/2014
Posts: 4406


Hi Tango,

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.


llee08032
Posted: Monday, February 22, 2016 9:24 PM
Joined: 5/20/2014
Posts: 4406


Coping with an Unwelcome Disorder: Lewy Body Dementia ...

ucneuroscience.com/.../coping-with-an-unwelcome-disorder-lewy-body-...
Mar 15, 2013 - But Dean's true problem, which was diagnosed after Dean began experiencing hallucinations, was Lewy body dementia, which is related to  ...

Coping with Lewy Body - Part 1 | Sharing Mayo Clinic

sharing.mayoclinic.org/discussion/coping-with-lewy-body-part-1/
Aug 17, 2011 - In July of 2010, I was diagnosed as ill with Dementia Lewy Body (DLB).... Therefore my principal rule for coping with hallucinations and all  ...

llee08032
Posted: Monday, February 22, 2016 9:33 PM
Joined: 5/20/2014
Posts: 4406


The Lewy Body Digest

LBDA's newsetters feature informative articles on LBD, personal stories of people facing LBD with dignity and courage, highlights in LBD research, LBDA news and events, and more.

LBDA's Online Community

The LBDA Forums are a place for LBD caregivers and those with LBD to meet and share their LBD experiences.

Local Support Groups 

- See more at: https://www.lbda.org/content/patient-and-caregiver-services#sthash.udXj9KS5.dpuf
Tango
Posted: Tuesday, February 23, 2016 8:20 AM
Joined: 2/3/2016
Posts: 5


Thank you for your comments, looks like I have some reading to do.
Mimi S.
Posted: Tuesday, February 23, 2016 9:35 AM
Joined: 11/29/2011
Posts: 7036


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.)


llee08032
Posted: Tuesday, February 23, 2016 8:56 PM
Joined: 5/20/2014
Posts: 4406


Mimi,

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?


llee08032
Posted: Tuesday, February 23, 2016 8:57 PM
Joined: 5/20/2014
Posts: 4406


Knowledge is power Tango. ((((hugs)))
Mimi S.
Posted: Tuesday, February 23, 2016 9:04 PM
Joined: 11/29/2011
Posts: 7036


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


Mimi S.
Posted: Tuesday, February 23, 2016 9:16 PM
Joined: 11/29/2011
Posts: 7036


That's a great idea but if not used quickly drops out oh sight. Best seems to hope newcomer identifies as such


Tango
Posted: Tuesday, March 8, 2016 11:27 AM
Joined: 2/3/2016
Posts: 5


Martha,

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


Iris L.
Posted: Tuesday, March 8, 2016 12:15 PM
Joined: 12/15/2011
Posts: 16106


What a lovely letter, Tom.  Happy Anniversary!


Iris L.


Mimi S.
Posted: Tuesday, March 8, 2016 7:02 PM
Joined: 11/29/2011
Posts: 7036


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.


BillBRNC
Posted: Thursday, June 16, 2016 9:19 AM
Joined: 12/2/2015
Posts: 1018


Well, good luck to you. I too have Lewy Body Dementia, but I also have it mixed with early onset Alzheimer's. Right now, it looks like the LBD is taking the lead. I ordered the book mentioned, and my wife is almost through reading it. I haven't decided whether I'm even going to try to read it. I know a lot already, and none of it is good. I think the Exelon might be helping some, and I've gone up to what I think is the final dosage without any major problems. In a week or so, I'm going to increase the Celexa again to the final dosage. I hope it starts to help more, as I can't really tell whether it is helping or not. I don't care for seeing things that aren't there, but I've gotten used to it, so I don't really care anymore. I'm having a little more trouble with balance and tilting left and right when walking, plus I also come close to passing out when I stand up, but I think that might be the medications for my heart and for the Alz and LBD. Not a major problem, but I might just start using a cane to help when I get a little off kilter. I just hope this part doesn't get any worse for a few more years. Hey, I just realized in Thursday. I had thought it was Friday. Who cares, though. Take care.
Iris L.
Posted: Thursday, June 16, 2016 1:00 PM
Joined: 12/15/2011
Posts: 16106


Tom/Tango, how have you been doing?  I hope you have been able to make good use of the resources listed above.  


Another book, although written from the perspective of the caregiver, is "A Caregiver's Guide to Lewy Body Dementia"  by Helen Buell Whitworth and James Whitworth.  You might find it in your library.


Iris L.

 


Tango
Posted: Sunday, June 19, 2016 7:27 PM
Joined: 2/3/2016
Posts: 5


Iris

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.