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- Re: LBD STAGES PROJECT

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I am using an Access database to track the data. Why it's certainly

possible to do the type of analysis you're talking about, I wasn't

quite thinking that far ahead, nor planning on such a long term

project.

BUT it is something that could be done with, say, 20 or 30 limited

respondents so it doesn't get too cumbersome.

Let me mull this over a bit, and if you have any ideas, feel free to

share them!

Thanks

>

>

> Finally got round to doing it.

> Can I ask.... How are you intending to process the information?

It's just

> that it's a pretty detailed survey and I wonder if it could be

used to chart

> an individual's decline if we kept doing it every 3 months or so...

>

> Sally, do you think The Prof might be interested in this sort of

> information?

>

>

> To NEW MEMBERS and PROCRASTINATORS -

LBD STAGES

> PROJECT

>

>

> For anyone who hasn't sent in their responses for the LBD Stages

> Project, here's another chance. You can e-mail your answers to

me,

> or just answer them here on the board.

>

> I'm up to 28 sets of responses, and am hoping for a total of 50.

>

> Thanks!

>

>

> Family History

> Is there a history of depression in your family Believe dad

found it

> difficult looking after mum and I've found it difficult watching

both

> getting ill. Other than that, no.

> Is there a history of dementia in your family? No

> Is there a history of Parkinson's Disease in your family? Dads

mum was DX

> just before she died. She was in her late 80s.

>

> LO Medical History

> What was your LO's age at onset of symptoms? Probably 62 or 63

but we all

> assumed it was as a result of being warn down caring for mum.

Only realised

> there was a nasty problem when he started seeing things.

> Has your LO been diagnosed already with LBD? Oh yes. About feb

2003.

> Did your LO have neuro-psych testing done as part of the

diagnosis

> process? Yes

> What was your LO's age at diagnosis? 64 I think

>

> If not diagnosed with LBD, has there been any other diagnosis?

Has been

> DX but originally DX with Parkinson's Syndrome. Differential DX

happened

> after Requip (a PD drug) caused serious hallucinations. In

fairness the Dr

> had anticipated this would happen.

> Did your LO present with cognitive symptoms first? No

> Did your LO present with motor difficulties first? Yes

> How old is your LO now? 65

> If your LO has passed away, what was their age when they died?

>

> COGNITION:

> Does your LO have fluctuating cognition? (unexplained variations

in

> cognitive abilities Yes

> Does your LO have mental inflexibility or an inability to be

absorb

> factual information? Sometimes, a bit variable

> Does your LO have difficulty making decisions? Sometimes, a bit

variable

> Does your LO become easily confused? Generally he's not too bad

> Is your LO's judgement impaired? Sometimes, a bit variable

> Does your LO have problems finding words? He is better than me!

> Does your LO sometimes have trouble orienting to the day or time

of

> day? Not generally but it has happened once then he was

generally off

> song anyway.

> Does your LO ever have trouble knowing where they are? Yes

> Does your LO misrepresent time spans between events? Not that

I've noticed

> Does your LO have problems with inattention?[ Hodgson]

Only when he

> falls asleep! Occasionally he thinks he's seen something and gets

> distracted. That can be frustrating and usually I leave him to it

until he

> is alert once more.

> Does your LO have difficulty solving problems? Not as good as he

used to

> be but not bad.

> Does your LO have difficulty with activities that require

planning?

> Surprisingly good.

>

> EMOTIONS:

> Does your LO suffer from depression? Has done while caring for

mum who has

> severe Multiple Sclerosis

> Does your LO have paranoia? No

> Does your LO seem unreasonably angry or aggressive at times?

No. He has

> always been very calm and I hope that doesn't change.

>

> MEMORY:

> Does your LO have short term memory loss? Not that's evident to

me.

> Does your LO have personal history memory loss? No

> Does your LO sometimes not recognize you or other LO's? He is

better with

> names than I am.

>

> BEHAVIOR:

> Does your LO stare off into space or become unresponsive? Not

as such but

> sometimes he watches " floating lights " ...

> Does your LO sleep a lot during the day, despite adequate

nighttime

> sleep? Oh yes

> Does your LO hallucinate during the day? If he does hallucinate

it's

> generally after dark.

> Does your LO have REM Sleep Behavior Disorder? According to the

doctor he

> does.

> Does your LO have difficulty visually identifying an object?

(i.e.

> thinking that it is something other than what it is?) As far as

I can tell

> it's only due to terrible eyesight.

> Does your LO have delusions (misperceptions of reality or

events)? I

> don't believe so.

>

> ABILITIES/BEHAVIOR

> Does your LO still drive? God no. He never was much good though!

> Does your LO have difficulty following an unfamiliar route?

Never tried

> Does your LO still read? No but mostly due to failing eyesight

> Does your LO still manage their money independently? Yes but I'm

taking a

> closer interest

> Can your LO still write? Just. His writing is awful like most PD

sufferers

> Does your LO now have small, cramped handwriting? Yes. See

above.

> Can your LO use the telephone? Yes but sometimes can't get it

back on the

> hook when he's finished.

> Can your LO prepare their own meals? Uses frozen meals in the

microwave

> or makes sandwiches. The problem is his speed of movement not

mental ability

> so much.

> Can your LO take care of their own household chores? Slowly.

Actually has

> a house keeper though.

> Can your LO do the laundry? Yes but the house keeper generally

does it.

> Can your LO administer their own medication? Surprisingly no. He

was

> always very good at it but not now. I don't know if this is a lack

of

> ability or lack of confidence.

> Can your LO pick out appropriate clothing? Better than me!

> Can your LO dress themselves? Sort of. Stiffness makes it

difficult. Can't

> do his tie anymore and shoe laces are a problem. Helped by carers.

> Can your LO bathe themselves? Helped by carers

> Can your LO use the toilet? Yep.

> Can your LO feed themselves? Yep

> Can your LO walk alone? Yep. And occasionally falls without

assistance

> too!

> Can your LO move from a bed to a chair unaided? Yep

> Can your LO speak? Yep

> Does your LO have difficulty swallowing? No

> Does your LO ever wander off? No

> Does your LO hoard anything compulsively? No

> Does your LO shred anything, like tissues? No. Haven't heard of

this

> before. My cat does though.

> Is your LO wheelchair bound? No

> Does your LO require assistance a few times a week, part time?

Yes

> Does your LO require assistance every day, part time? Yes

> Does your LO require full time assistance? No but we have

problems late

> evening when he seems to " go off " .

>

> PHYSICAL:

> Does your LO faint? No

> Does your LO drool? Yep. Gallons of the stuff. Amusing to watch

him drying

> the crockery after he's washed it. That's cruel isn't it. Sorry

> Does your LO have constantly runny nose? A little

> Is your LO incontinent? No

> Is your LO bedridden? No

> Does your LO have chronic hoarseness or is their voice raspy? No

> Does your LO suffer from cold sweats? Not that I know of

> Does your LO want the heat turned up? No

> Does your LO want the heat turned down? His house is generally

kept colder

> than it was 2 years ago

> Does your LO have problems with constipation? Yes

> Does your LO have dizzy spells? No

> Does your LO have a slower gait now (apart from any other

obvious PD

> symptoms)? Has typical Parkinson's gait.

> Does your LO sometimes have balance problems when walking Yes a

bit.

> Does your LO have muscular 'jerks' (myoclonus)? No

> Does your LO have a tendancy to fall? Sometimes

> Does your LO have a shuffling gait? Yes

> Does your LO have muscle stiffness? Yes

> Does your LO have a Parkinson's-like tremor? No

> Has your LO had adverse reactions to antipsychotic drugs? No

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

>

>

> -------------------------------------------------------------------

---------

> --

>

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