Dear all,
I hope there is someone within this worldwide group that can help.
My partner's mother was diagnosed with PD nearly 5 years ago (when she
was 58), then as Parkinsons Plus over 2 years ago.  She does not have
any tremors, or freezes, or what I have been told is the 'typical
parksonian walking moevement', but does have a joint stifness. This
started in her right arm, growing to a general movement stiffness.
Her voice started to deteriorate at least 2 years ago, so that no-one
could understand what she was saying so then she tried to speak even
faster.  One speech therapist was no help, and she ended up using a
small typing screen for people to read so she didn't have to try to
talk.

Another therapist gave her an amazing leap forwards. She was given a
card with all the letters of the alphabet, and told to point to the
beginning letter of each word and then say the word - and hey presto -
she was able to communicate by voice (using a different neural
pathway), not 'normally' but at least it was possible to understand
about 9 out of 10 words.  The biggest problem now (6 months later) is
she hates using this card, so will try 3, 4, 5 or more times without
the card, which is very frustrating for all around her (as well as
herself).

She has started to have more falls and seems to wish to make herself
housebound, no matter what encouragement we try and give her.

It seems that her medications are giving her more side effects than
help. I don't know the details, but she has 3 types of pills:
one that lets her walk more easily, one that lets her eat, and one
that helps her to talk.  None of these can be taken in conjunction
with the others.  One of these tablets has the side effect of making
her screw up her face and she can barely open her eyes, which she
finds distressing.  Recently, she has been getting this effect almost
all the time.

I believe she had a brainscan about 3 years ago, and it did NOT show
much evidence of damage to areas normally associated with pd'.  She
has had lots of blood tests for other diseases, but the doctors do not
seem to have had any success with any medications for any of her
symptoms.

Does anyone else know of any symptoms like this?
I would love to contact others who know more about this, to know what
may be the best things to do to help.

Thank you
Chloe

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