UPBEAT Workshops
On Saturday UPBEAT members and their partners/carers separated and attended
different workshops. Laurie Hilsgen chief executive of Carers New Zealand led a
workshop for carers, while Lea-Anne Morgan, Parkinson’s New Zealand clinical
lead, led a workshop on cognitive decline in Parkinson’s for people with
Parkinson’s. The separation was intended to allow for free and frank discussion. In
the session following, the venues were reversed-- the carer’s attended Lea-Anne’s
workshop while the people with Parkinson’s attended the Laurie’s.
Laurie Hilsgen started her session by running through some of the self-care
challenges carers typically face, including depression (2/3 of all carers report some
form of depression.), strains and pains, and physical violence; but it soon became
clear that the carers’ present were not going to waste the opportunity to get a few
things off their chests while they could, and Laurie’s role became one of a
facilitator rather than a presenter.
From the carer’s session:
“I wish that once, just once, somebody would ask how I’m doing, how I’m feeling.”
“I just want to have a good argument.”
“I don’t like the word carer. It means we aren’t equal anymore.”
“I was just overloaded but I didn’t realise it.”
“At the beginning I thought Parkinson’s was a movement disorder but it’s not. It’s
everything about a person. The cognitive things, the depression, the anxiety, the
decision-making abilities...it’s hugely misunderstood.”
Parts of the medical profession received a tongue-lashing for their perceived
arrogance, aloofness, and lack of empathy. Some employers were lambasted for
their lack of flexibility.
“We are carers to adult children and we are made to feel guilty if we need to take
time off work.”
Cognitive decline workshop
The cognitive decline workshops provided what one attendee described as a
sobering glimpse into the future. Lee-Anne began the workshop by providing an
overview of cognitive decline in Parkinson’s.
She said the prevalence of cognitive decline in Parkinson’s is difficult to establish as
different studies indicate different levels; this variation is due to the different study
methods used. However, taken overall, outcomes of the studies suggest that at any given
time, of all people with Parkinson’s approximately one quarter to one third have mild
cognitive impairment.
What are the main cognitive changes that people with Parkinsons may have?

Bradypenia (slowed thought processes)-this is difficult to assess as most People
with Parkinson’s have slowed motor responses which is required for cognitive
testing.

Confusion (impairs judgment, orientation, memory, affect and cognition). This can
exist alone or with dementia and may be reversible depending on the cause
(medication, co-morbidity)

Memory deficits- thought to be caused by disruption in neural circuits which are
selectively depleted of dopamine. A simple one-to-one correlation between
dopamine levels and memory loss has yet to shown. (Procedural thinking affected
to basal ganglia changes).The good news is the people with Parkinson’s are
generally able to store new information, especially if it is practiced or rehearsed.

Executive function- the mental functions requiring focussed, sustained attention
and flexibility of thought, such as planning and goal directed activity. In
Parkinson’s an impairment in these functions may present difficulty in planning and
adapting to change.
In the people with Parkinson’s session Lea-Anne had the audience list the things they
wanted the people who support them to know. Their feedback:

Understand there are things I can’t do, even though I want to

Understand there are still many things I can do, so let me do them

Don’t talk for me or over me, I know I am slower saying things and my voice is
quieter but I can still talk for myself

I don’t have an intellectual impairment, please don’t talk to me like I do have one.

Write lists to help me remember and leave notes (but only if we have agreed to
doing this)

I am not doing things on purpose, please try and remember this, even when you are
stressed

Don't make me feel guilty, I already feel guilty

Ask me how you can help me, don’t assume

Help me let certain people know that I do sometimes need help

Help me set strategies that will help me to remember so that I don’t have to keep
asking you (containers in the same place to put keys and glasses in)
In the carer’s session Lea-Anne asked carers about the types of cognitive decline have they
had become aware of. Lea-Anne also had carers discuss the impact that Parkinson’s had
had on their lives, the support they had sought, and the coping mechanisms they had in
place.
What sort of decline they had carers become aware of?

Decreased decision making ability

Reduced ability to cope with changes in routine

Forgetting routine tasks

Increased anxiety

Changes in mood including depression

More easily upset and angry

Impulsiveness

Increased loss of motivation

Decreased sense of humour and delay in responding to humour

Tendency to wander off and away for sometime (seem to be unaware that this may
cause concern)
The carer’s said Parkinson’s had had a significant impact on their lives. They listed the
following impacts:

More responsibility

Role change

Have to take more charge of things

My mind often feels cluttered as I have so many things to think about

Increased stress

Increased financial stress-lots of extra costs

Now have to always care for 2 people, not just myself

Need to always allow extra time even for simple tasks

Increased frustration

Increased guilt
Carers listed the following support and coping mechanisms:

Upbeat seminars and support groups

Information

Field officer contact and support groups

Keeping active-walking groups

Knowledge of other support, Work and Income and other like agencies

Friends

Keep up hobbies or try and find new ones (golf, sport etc)

Counselling

Outward bound

Communication with family and friends (essential)
Both workshops were clearly valuable opportunities for people to share their
doubts and fears and anger...and have a few laughs. The sessions could have been
four times as long and still would have been too short.