This reply ended up a bit longer than I meant it to be.
>My mother has a variant of Parkinsons, sometimes called Atypical
>Parkinsons, or Multiple Systems Atrophy.
We always felt there was "something different" with Mum, although we
never had the diagnosis confirmed until she/we donated her brain to
the brain bank in London, and they found out. I have been told that
there is no definate diagnosis they can make without actually
sectioning the brain. Of course, the researchers might have found
some way by now.
To some extent, I don't think it really matters - the condition
presents itself as PD, can be treated like PD, which was good enough for us!
(Short aside: there is a growing feeling that the term "Parkinson's
Disease" is innapropriate. Some people prefer "Parkinson's Syndrome",
as there is a group of diseases which, through a lack of dopamine,
produce what we would currently call "PD". But there are a whole host
of underlying conditions (I think I was told "at least 5") which would
cause this lack of dopamine. Old age and MSA are two.) Treatment is
generally the same for all these conditions at the moment (i.e.
replace the dopamine), but eventually prevention/early detection/
slowing the disease down will become important.
>also atypical in that she has no shaking. It seems as though it might
>be an unrelated disease, but for now it's lumped together with
>Parkinsons. It's not totally clear what her diagnosis is -- doctors
>disagree.
>
MSA certainly is more severe than general PD. In classical PD patients
can stay more or less the same for long periods of time, and it is
well accepted that their life expectantcy is unchanged. MSA is
more progressive (as I gather you are finding).
>
>It seems to cause faster degeneration, and to be less treatable. It's
>Her symptoms include lack of balance, difficulty walking, and constant
>fatigue, vivid dreams, difficulty talking, difficulty eating solid
>foods, difficulty swallowing, and poor hand coordination.
Mum had no shaking either. But she did have cramps and spasms - all of
a sudden her arms would cramp up very badly (extreme pain) and you had
to run over and massage them free.
Lack of balance is familiar. I always found it strange when other
people tried to walk with Mum, they wanted to "hold her up" (which
bugged the hell out of her). What they really want is balance or rythmn.
Really you are just shifting their weight from one foot to another.
Constant fatigue - does she fall asleep during meals? We never quite
worked this one out, but Mum would fall asleep about 3 mouthfulls into
a meal, and *nothing* you could do about it. (excellent way to get a
quiet few minutes :-)
Vivid dreams are sometimes due to the medication/lack of. (some of the
pills these people are on are quite powerful). Talk to your doctor, or
other sufferers. The way Mum dealt with these was amzingly practical.
Our wallpaper has an intricate flower pattern - if these flowers
turned into monkeys or nasty creatures learing at her, then she
assumed it was a hallucnination and didn't trust what she was seeing.
Be careful about the swallowing - we managed to half fill Mum's lungs
up with fluid before they X-Rayed her swallowing and found it wan't
working correctly and 60% was going the wrong way. *never* feed them
whilst "off". Does your Mum choke when eating? (this is not to say
don't eat! just be careful..... if you think there is a problem speak
to a dietician or a speech therapist (speech therapists also deal with
swallowing etc.)
In terms of normal food which is perhaps easier to get down a
Parkinsonian, Mum manage quite well with:
Ready Brek (Porridge) mixed thicker than usual
Weatabix (soaked in milk)
Think Hot Chocolate
Fruit Fools (Marks & Spencer and Sainsburys the best)
Ice Cream
Chocolate (good for bribes!)
(sorry about the English brand names)
Basically what you are looking for is thick(er) foods. Also remember
different tastes - Mum didn't eat all that much, so when she did we
gave her stronger, more memorable tastes. The rich dark choclate ice
cream is a good example.
I'm working on the talking problem :-) although there are quite a few
gadgets around which could help. The cheapest is a stroke chart - just
a A4/A3 sheet of paper with letters and common words on it. Sufferers can
point to the letters in turn. Other wise there is the Lightwriter, a
sort of portable typewriter thing, with a small LCD display. All these
things become much more effective when the carer tries to guess the
rest of the message.
We had these communications gadgets around the house; if Mum was "on"
she just spoke to us. When she was "off", we used a LightWriter.
We found Appomorphine to very very beneficial. But apparently this
works for certain people and not for others. We did find it smoothed
out the on/off periods, although the stuff has some problems -- it is
very acidic, if you get it injected then it makes a real mess of your
skin.
If peolpe are interested in Appomorphine I can write more later (I
have RSI and typing long letters hurts!)
>
>She has my two sisters, as well as several nice women she's hired, as
>her caregivers. She's 63 years old.
>She's very interested in finding someone to do genetic study of her
>family. We think it's a most interesting case: she and 3 other 1st
>cousins with a common grandfather have all been diagnosed with
>Parkinsons. So far, it has not been very easy to interest any
>researchers in conducting any serious study of this event. In
>addition, some of the family members have expressed "lukewarm"
>enthusiasm about participating. This is a bit of a disappointment to
>us.
Causes:
We didn't really find much evidence to support anything heriditary.
Although Mum was dropped when she was a very small baby. Some people
reckon it might be a severe electric shock (I know three people who
think this), some reckon it might be somethig in the water.
Most researchers I spoke to think it is a combination of a few
external events combined with a genetic deposition. But as the
underlying cause for the death of the part of the part of the brain
which produces dopamine (substanita nigra?????) is not known, I guess
finding trigger factors is going to be hard.
Perhaps the best thing you, I and our families can do is will your
brain to a brain bank. I can write more about this if you are
interested......
The biggest problem with "relatives" (i.e. those not living close to
or with the sufferer) is that they don't know what to *do*. Someone
they knew & cared about has this "terrible condition" which was only
supposed to happen to "other people". They don't know what it is, or
how to help. We had big problems with my Mum's Mum, until we sat her
down, explained the disease, the symptoms, and finally how to care for
her. After that. everythign was hunky dory.
I often feel that, whilst the medical people are working on the search
for a cure, the best thing we mere mortals can do for ourselves is
talk to each other. Information is the key. As I meet more sufferers I
am constantly impressed with just how much these people have
discovered about their condition and how to *manage* it to get the
best performance they can from their bodies. Sharing all these little
hints and tips is invaluable.
>
>One last thing: Simon Coles' introduction was most interesting. I for
>one am most interested in getting a test version of CANDI. My mother
>would really like to use a computer, and also is trying to find some
>solution to her failing speech and the associated communication
>problems. (She has considered learning Morse code....) Any other
>advice on appropriate alternatives to the keyboard would be
>appreciated. I'll check the FAQ some day soon.
>
>We are looking forward to hearing from you on this list.
>
>Mark H. David (and Elvira David)
I'll write it up over the weekend, I promise! I wouldn't like people
who test the initial version to go out and buy a Newton specifically
to run CANDI, at least not yet anyway. Come 1995 I should have
soemthing which is worth spending money to be able to use.
Having said that, I realise the importance of good communication for a
suffere, so of course I'll get versions out when I can.
--
Simon Coles
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