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 Vision and LBD 
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Vision and LBD
Hi All,

I have a vision problem in addition to LBD called optic nerve drusen (genetic)....it is calcification deposits on the optic nerve that put pressure on the nerve and cause vision loss - usually on the insides of the eyes near the nose. I had a checkup yesterday with the "field vision test" where you click the thing when you see white lights in the globe (anyone have this before?) and this time it showed some peripheral vision loss too...

I am not sure now, if it's my eyes or my brain.....also I noticed I was having slow processing response with the clicker...wonder if they can adjust the machine for this (forgot to ask but told the doc I felt slow mental processing yesterday - that fluctuates too)....He is referring me now to a neuro-opthamologist who hopefully can work with my LBD neurologist so I don't lose my vision....does anyone know if blindness is a risk with LBD? I can't find anything about that but if the brain can't understand what the eyes see maybe it seems like blindness even if the eyes work?

Thanks for listening even if there are no answers to this question - I am just a little more scared today after the less than good news with the eye doc yesterday....

Best wishes,

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Thu Jul 14, 2011 11:14 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Vision and LBD
Tonya,

I have never heard of blindness due to LBD. In some other atypical parkinsonism disorders, there can be "functional blindness" due to double vision and eye gaze palsy, but I have not heard of even "functional blindness" being possible in LBD.

The neuro-ophthalmologist can explain which of your problems are in your eyes and which are in your brain. It's a good idea to see one.

Robin


Thu Jul 14, 2011 11:21 am
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Joined: Tue Aug 24, 2010 1:45 pm
Posts: 35
Post Re: Vision and LBD
Hi All,
These posts on vision and LBD really caught my eye (no pun intended.) I posted some time ago about Tom's inability to "find" his private parts... . Since you mentioned occular palsy, I looked up palsy connected to Parkinsons, et.al. and suddenly it all made sense. He doesn't see them. The same is true with the food on his plate. He tells me he's eaten it all but when I rotate the plate, then he can see it. I think this is also the reason he has trouble sitting. After watching him closely, now I see he bends over but his eyes don't move all the way down and his focus is forward. Not that it will make any difference, but Tom just had an MRI this week and I'm wondering what it will show. I now feel terrible for continually telling him to look down :cry: This is definitely a strange disease and thanks to this forum I'm always finding new insights into Lewy.

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Kathy, 63, wife & caregiver of Tom, 64 dx 2007 (later stage) lives in dementia care facility in Durham,NC


Sun Jul 17, 2011 10:26 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Vision and LBD
Kathy,
Has your husband been assessed for PSP (progressive supranuclear palsy)? One person in our local support group was clinically diagnosed with LBD but had PSP upon brain autopsy. And another family in the south had the same outcome. The local person never had any hallucinations. The southern person had hallucinations but they could've been caused by medication/infection.
Robin


Sun Jul 17, 2011 11:15 am
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Joined: Tue Aug 24, 2010 1:45 pm
Posts: 35
Post Re: Vision and LBD
Robin, I guess the answer is " I don't know." He was diagnosed at Duke Memory Disorders Clinic by Dr. James Burke director of the clinic and Dr. Burton Scott head of neurology who handles the Parkinsons aspects. They both agreed on LBD at the first visit. They always ask about Tom's vision and any new developments. It wasn't 'til this morning when I read on another website describing the various palsies that I realized some of Tom's symptoms (burning eyes, blinking, sticking eyelids--which I did share with his opthamologist, who merely recommended over-the-counter eye drops that seemed to exacerbate the problems) could actually reflect on his diagnosis. These eye problems have been present and increasing for months but his hallucinations and delusions have been present for years. Would the MRI he had this week reveal the changes in the brain that distinguish PSP or is that, too, a diagnosis that can only be made after death? There is no specific treatment for PSP is there? Just management of additional symptoms ... ? Thanks Kathy

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Kathy, 63, wife & caregiver of Tom, 64 dx 2007 (later stage) lives in dementia care facility in Durham,NC


Sun Jul 17, 2011 1:41 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Vision and LBD
Kathy,
You are right on all counts: PSP can only be diagnosed through brain autopsy, and PSP has no treatment. In fact, those with DLB or PDD at least have treatment for dementia symptoms with medication that often works well. No medications help the dementia of PSP. The Mayo Clinic, which I recommend for both clinical work and their brain bank, has experts on DLB as well as PSP.
Robin


Sun Jul 17, 2011 4:01 pm
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Joined: Wed Mar 02, 2011 1:11 pm
Posts: 27
Location: Michigan
Post Re: Vision and LBD
My husband's vision is horrible. I also have to help him find the remaining food on his plate. At times he won't be able to see me four feet away unless I wave, or when he sees a blanket on the sofa and thinks it's a dog. A neurologist told me it's not an eye "mechanics" issue, but in LBD the brain misinterprets what the eyes see. I'm wondering if an ophthalmologist would certify him as being legally blind for tax purposes.

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Wife of a 60-year-old LBD patient who was diagnosed in 2003.


Tue Aug 16, 2011 10:10 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Vision and LBD
We also asked an ophthalmologist about this. Ours was not willing to state that Dad was legally blind. But it's worth a try.

About seeing food on the plate, we converted to all finger foods, which helped somewhat. There are also "plate elevators" you can buy or simply put the plate on top of some phone books to raise the level. Having the plate at eye level can sometimes help.


Tue Aug 16, 2011 10:14 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Vision and LBD
Quote:
Having the plate at eye level can sometimes help.
That's easy for Derek. He's always bent forward with his face nearly in his plate. His problem is keeping the food from falling out of his mouth before he can chew and swallow it.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Aug 16, 2011 10:26 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Vision and LBD
Towards the end my dad couldn't tell a soap opera from a football game on tv. Some of the CGs would come in and sit with him, turn on a soap opera and he thought it was sports that he was watching with them! I just had to laugh to keep from crying.
He also had to have a lot of clocks that he could see from his bed. I'm wondering now if he thought the more clocks he had the better he could tell the time. I also had to buy him a watch a few months before he died. I think that was a comfort thing that he was used to. He sure didn't have a clue how to tell the time with any of his digital OR regular clocks or watch. But he felt better having them, so we indulged him in as many clocks as he wanted. Same with calendars! His brain was interpretting things all scrambled up..... Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Aug 16, 2011 11:25 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Vision and LBD
Periodically, my mother complains about her vision but her eye doctor says it has not changed. I think it is a Lewy thing, not what her eyes are doing but how her brain is interpreting. For instance, a few months ago, she thought headstones in a hillside cemetery we passed were animals. Also, we had a bird feeder hung outside her window at the SNF and she can't see the birds because they move too fast.

I know what you mean about comfort things, Lynn. My mother has a book case full of books and and drawer full of DVDs that she has not touched for six months or more, but we leave them there because they are familiar and make her feel more normal.

Julianne


Tue Aug 16, 2011 11:39 am
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Joined: Wed Mar 02, 2011 1:11 pm
Posts: 27
Location: Michigan
Post Re: Vision and LBD
Thanks for the idea of elevating the plate. He uses a spoon and a plate with sides, but I hadn't thought of elevating it.

_________________
Wife of a 60-year-old LBD patient who was diagnosed in 2003.


Tue Aug 16, 2011 3:20 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Vision and LBD
the discussion about double vision caught my 'eyes'…..

I sometimes have double vision….in either eye….both at the same time….individually….most people say impossible….I say double vision….

I have black spots sometimes…..actually thought it was optic neuritus…..went to ER for it….nothing…..

wonder if those as object hallucinations?


my vision is falling…of course….but….

my visual interpretation and visual reality seem to be still pretty normal….all of the time

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Tue Aug 16, 2011 3:25 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Vision and LBD
Ditto with what Craig said....

Although I do have vision loss due to a different cause so thus the appt with the neuro-opthamologist tomorrow....I too wonder if it's my brain or my eyes, with the spots and such......

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Tue Aug 16, 2011 4:24 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Vision and LBD
We have a plastic guard that clips on most plates, Frank pushes the food against it, but then 1/2 the time it falls off the fork before it reaches his mouth. I sit beside him and keep pushing the food the the middle of the plate or he thinks he's done. I find that I'm assisting more and more with his feeding, when he eats. He's down to 129lbs, was 155 in May. His eye sight seems to fluctuates as much as his cognition.
Take Care,
Gerry

_________________
Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Tue Aug 16, 2011 8:28 pm
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