>Maybe this is the time of year for "lurker confessions". I have been a
>member of this list for some time, but have not introduced myself. My Dad
>has PD which is complicated by diabetes and heart disease. He lives in
>Alberta, and I'm in Nova Scotia, so I joined the list hoping I could
>understand his needs even though I wasn't physically close.
Nothing wrong with being a lurker :-), especially on a list like this.
The best weapon your father and his family have against this disease
is information, and the understanding that comes from it. The list
seems a good conduit for all his information.
>Has anyone experienced "mental confusion" while taking some of the drugs
>for PD? Any advice on what kind of questions I could be asking his
>doctor?
(warning - I just pick this stuff up as I go along - free information
is worth what you paid for it). I'm sure if I say something wrong lots
of people will jump in to correct it!
A doctor once told us "You can't separate disease of the Brain and the
Mind". The mental effects of PD are often not discussed, although
unless you know what you are looking for I guess it would be difficult
to pin them down. Whether PD affects the personality is probably very
contentious, so I'll just stick to the normal stuff.
Occasional mental confusion is known with PD, although often it is
only slight, and occurs infrequently. There are possibly 3 causes:
- Drug induced
- Plain old age
- Part of the PD itself
I guess its difficult to sort out what is what, but I don't really
think the underlying causes affect the way you deal with it.
Some experiences with my Mum:
- I asked her once: "When your body goes 'off', does your mind go
'off' to?". The answer was "Yes of course".
- Occasionally she would repeatedly ask for the same things again and
again, forget where she was etc. This happened only very occasionally,
and the effect would pass after an hour or so.
- When the drug dose was wrong (too much or too little) we did
experience some mental confusion.
- Some of the other drugs that get shovelled into PD'ers (apart from
the L-Dopa) are actaully quite mind bending in themselves.
- Apparently it is very common for PD'ers to lose track of time.
- Chocolate or Ice Cream seemed to fix all known problems :-)
So given some slight "mental confusion" is not entirely unknown, what
to do about it? Well, I guess any Nurse will be able to tell you, but
here's my 2 pennies worth:
- When you speak to him about something, give slightly more background
or context than you would normally. ie. ask "What to you want to eat
for your dinner", not "What do you want". Or "When Claudia went down
town she met Jake's son Jack", not "Claudia met Jack".
- When you discuss things, look at their face - you should be able to
see a subtle "confused" look when things aren't quite clicking. Just
add a little more into the conversation until you see the expression
change to one of enlightenment.
- Try not to overload them with concepts, or make their world overly
complex. Keep the house tidy. Don't swamp them with information very
quickly. Present information in a structured, consistent manner.
Don't buy fiendishly complicated electronic gadgets.
- Realise that some times of day are better than others. Better to
have that "heart to heart" chat when then are mentally alert.
- If they get stuck on a thought (asking the same question, constantly
wanting to do something), try changing the subject, or distracting
them. We thought of this very much like how we got her to walk -
occasionally she would get stuck in one spot (froze), and we would
come along, start her off again, and off she would go. I see no
reason why you can't think of these mental effects in the same way.
Generally you can do all this so subtly no one will ever notice.
The important thing is to:
realise what is happening,
understand it,
work out suitable coping stratagies.
You have obviously passed the first, and largest, hurdle. I feel a lot
of people are in denial about the fact they/their spouse is becoming
mentally "slower". But it ain't all that much of a bogy man if you
accept it and work around it. Just as the rest of the body goes
through "off" and "on" cycles, so does your brain (why should it be
any different?).
Hope this helps,
Simon Coles
[log in to unmask]
PS - does anyone know of research/references into the exact cognitive
effects of PD? Or how you should design products with this in mind?
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