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 Stages of Lewy Bodies 
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
I never found those stages documents to be helpful because there's a long list of possible symptoms, they come in no particular order, and not everyone gets everything. So people usually have symptoms in multiple stages.

I don't think it's worthwhile to know all the possible things that lay ahead. Just take it as they come.


Wed Dec 30, 2009 1:37 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post 
There you have it. Some people don't like to plan, others need to.

I am a project manager, both professionally and by nature. I truly believe that assessing the risks and doing cause and effect analysis can help to avoid problems with whatever one is trying to accomplish. This helps me to know what I'm doing and to prepare for actions I may need to take.

For me, this applies well to seeing my LO through this experience.

For the record, my primary backup in caregiving is not a planner and likes to take it as it comes. I don't understand her anymore than she understands me.

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Wed Dec 30, 2009 1:59 am
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Joined: Sun Dec 20, 2009 7:43 pm
Posts: 54
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I also would like to know what lies ahead... how much time we have, and if we'll have much more lucid quality time. I want to know if she'll stop refusing meds and resisting caregivers, which is causing problems for everyone.

I don't want my LO to suffer, so I hope that she doesn't linger past the stage where she has no real quality of life. She never wanted to exist in a vegetative state.

My mother also experienced a huge drop in functioning in the past year. It was dramatic. I think older age is a factor here - that is, patients with LBD who are older are more likely to decline more quickly.

If someone offered me a magic chart with future dates and her status on those dates I would definitely peek.

How long will hospice care for a patient? My brother's father-in-law went into hospice before he died, and it was the only care he ever really liked.


Wed Dec 30, 2009 9:15 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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I just lost my lengthy post, frustrating!!! I was commenting on knowing what stage we are in. I think knowing stages doesn't tell you what you are going to experience next. I find that out weekly, daily, even hourly. Frank was in rehab last month for 10 days and 5 weeks later I've decided he's not going to get back to where he was before he went in. He understands very little, I have to repeat 4-6 times, slower, louder and fewer words and maybe he'll get it. He does tell me about the "other" Gerry that always yells orders at him. :x I have signed him up for an adult day program for 2 days a week. I talked to him about it but I'm not sure he understood. His Dr. strongly suggested this at the last 4 meetings. After his decline I realized we could both benefit, it would let me get something done and he needs the stimulation. I do plan on going back to work 1 day, to help pay for the care. We haven't been able to do our 1 - 1 1/2mille walk with the holiday and weather, so he spends his day looking out the window, seeing things that aren't there. There are many times when I say "I just can't do this anymore" but then tomorrow comes and I'm back at the starting gate. Thank heavens for this forum.

Take Care,
Gerry


Wed Dec 30, 2009 9:49 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Oh, Gerry...
I have an idea of what you mean by rehab and realizing that your LO won't have a full recovery of their physical abilities. A year ago, my mother spent 3 months in rehab after breaking both shoulders. I am positive that dementia hampered her recovery. She still has difficulty with her reach and what she can do when she tries to reach. Interestingly, she tends to have trouble more when she is reaching for something she's not enthusiastic about. Put a piece of chocolate a bit out of her reach and she has it in seconds.

Gerry, really make use of that day care. The one I have Mom in is associated with the rehab center she was in. So they could continue her physical therapy. When the therapy was no longer ordered, and knowing how tired Mom is when we pick her up, the day care has continued to help her with her exercises. They also have a nurse who keeps an eye on Mom, pays special attention when we tell her we suspect a problem and advises us about whether a doctor's visit is needed. Aside from taking care of her when we can't, the day care supports us with experienced care and advice. Ask them what they can do for Frank. All they can do is say no.

Gerry, do you have shopping malls in your area and can you get to one? Granted they are nowhere near as nice as a 1-1/2 mile walk, especially in MA. But they are exercise. Pick one that isn't very busy, so Frank doesn't get overwhelmed by the crowd.

It actually sounds advantageous to me to have that "other" Gerry that does so much yelling. That way, you get to be the "good" Gerry.

The stages discussion is really getting interesting. I don't think those of us who want the information are looking for a specific roadmap, but more of a "this might happen soon" of "that might happen soon." If it doesn't happen, great. But we just like to know as much as we can - just in case we need it. I know I'm a control freak. Maybe some of the others are, too.

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Wed Dec 30, 2009 10:50 am
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
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The stages discussion is very interesting. I now know that every day, hour, minute can change dramatically, but I sent the stages to my sisters-in-law out of state. They had no idea what this disease was all about and what their brother and I are up against on a daily basis. Yesterday was a good day for my MIL, but today is not starting out so well. Fortunately I am an optimist! :D


Thu Dec 31, 2009 11:09 am
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Joined: Sun Dec 20, 2009 7:43 pm
Posts: 54
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A walker with a seat is great... your LO can walk a while then be pushed when they fatigue.

I think the mall is a terrific place to go. I hire a caregiver to take mom on regular outings to lunch and to the mall. I think it helps.

A treat like some gelato or some Godiva chocolate is a nice break.


Thu Dec 31, 2009 11:15 am
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Joined: Sun Apr 04, 2010 6:54 pm
Posts: 64
Location: Portland, OR
Post Pre-diagnosis
My husband has not yet been officially diagnosed, but from what I've read, he's got many of the symptoms. Trouble is, his hallucinations are scary for him at night, so first he was prescribed Risperidone, which works some, and then Haldol, which seemed to work better--but now I've read terrible things about what the Haldol can do if he really does have LBD. Anyone out there have similar experience? Should I not give him the Haldol until we see the psychologist for a firm diagnosis?


Mon Apr 05, 2010 5:57 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Just my opinion, but he probably would have displayed adverse reactions by now. My husband had bad reactions to both Risperdal and Seroquel that were evident soon after taking them. With the Risperdal, it wasn't until I read some research article about it that I was able to put two and two together regarding his symptoms. If your husband is actually better off mentally and no worse off physically, I would suggest he stay on them until you can confer with the physician about the possibility of his having LBD and whether he should be taking these medications.


Mon Apr 05, 2010 6:06 pm
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Joined: Sun Apr 04, 2010 6:54 pm
Posts: 64
Location: Portland, OR
Post Meds bad effects
Thanks, Mock Turtle--but the one that scares me is the DEATH possible and IRREVERSIBLE symptoms with Haldol. So is that only with prolonged use, or would I see symptoms right away? He already has had it affect our sex life and his pooping, so I worry about what else might come. I might try him on more of the Risperidone for now, so at least I will feel better. Will see if it helps. Anyone out there have solutions for what to do if they think they're in the wrong house, want to get dressed and move in the middle of the night? Unless I prepare another bed with pee-proofing, that's not very feasible. Or what to do when the boogeymen get scarier? He thinks that two of them are going to do something terrible to him--rape? assault? if he confronts them in any way.


Mon Apr 05, 2010 6:14 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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He needs to see a neurologist, not a psychologist. If the neurologist rules out neurodegenerative disease, then he might recommend a psychiatrist [a medical doctor] not a psychologist.


Mon Apr 05, 2010 6:31 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Kathy,
Find an LBD-knowledgeable neurologist or geriatric psychiatrist in your area. Read the Boeve "Continuum" paper on lbda.org for a good treatment regimen for hallucinations. You may be able to get away with not giving any antipsychotics. (But you'll need an MD to do the diagnosing and prescribing.)
Robin

PS. You might want to create your own topic for this as not everyone will be interested in reading something about "LBD Stages" in the Practical Caregiving Tips area.


Mon Apr 05, 2010 6:42 pm
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Joined: Sun Apr 04, 2010 6:54 pm
Posts: 64
Location: Portland, OR
Post Neurologist vs. psychologist
We saw a neurologist, who realized something was wrong but didn't believe it's LBD (no Parkinsinism--but that isn't always a factor, is it?). We are supposed to see a psych. with gerontological specialty soon.


Mon Apr 05, 2010 7:09 pm
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Joined: Sun Apr 04, 2010 6:54 pm
Posts: 64
Location: Portland, OR
Post hallucinations
Oh, I'm new, so didn't realize I may be posting in the wrong area, sorry. I did have the question about what people have done when the LO has scary hallucinations at night, tho. Any practical advice?


Mon Apr 05, 2010 7:11 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Kathy, my husband has a lot of hallucinations but they're not really scary. It's best to accept they they are really seeing these things, but reassure them that they are safe and that these hallucinatory objects cannot harm them. Make sure that YOU are safe and don't be reluctant to call 911 if you feel at all threatened. The sooner he sees an appropriate specialist, the better. --Pat


Mon Apr 05, 2010 7:45 pm
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