Showing posts with label Parkinson’s. Show all posts
Showing posts with label Parkinson’s. Show all posts

Tuesday, 7 September 2010

Close-reading PATIENCE - by Matt Dalby

Matt Dalby is one of several contemporary poets we asked to repsond to PATIENCE. Here, Matt traces a path between two pieces: Be Patient by Margaret Hargreaves, the poem that states the theme of the collection, and a self-exploration of Parkinson's Disease by Doreen Jones, Thee Thy Summer.

Margaret Hargreaves’ Be Patient includes the line ‘was a dressmaker’. There is a sense here that Margaret may no longer be who she was, or at least may feel she is no longer who she was. But it is not a sentimental, nostalgic, ‘when I was younger’ reverie. It is a lot more interesting than that. Here are skills and experience, here is something that makes the loss or impairment of capabilities with illness become more real. Here is something that is often hidden.

Anecdote. An elderly Muslim man in Trafford walking slowly around two parks supported on either side by two young women who appear to be his daughters. The sight is only striking because it is so unusual.

But this is to make assumptions. The assumption that ‘was a dressmaker’ refers to Margaret Hargreaves herself. The assumption of impairment through illness. The assumption that the women supporting the elderly man are his daughters. The only assumption for which there is any evidence is the first of these:

‘I call myself
a quiet person

was a dressmaker
if a stitch went wrong
I set it right
in two words, two small words’

But without knowing the author, and without knowing how the poem was put together it is a dangerous assumption to make. And even if it were a simple statement of fact about the author it only provides limited information. Many people could say ‘was a shop assistant’ and it would tell you precisely nothing about them.

Even so, this is a relatively straightforward poem in comparison to a poem like Doreen Jones’ Thee Thy Summer, which is much more fragmented. Thoughts are abandoned partway through, broken into fragments, and revisited later. The kind of fractures recur throughout the collection. Numbers play a large role in the text, as if they are fixed points within a generalized confusion:

’21 x pills a day’

‘fell 4 x times’

‘7 in morning’

Some numbers, especially 21, recur in the poem. So too does 7. The poem itself is arranged in six stanzas of seven lines in pairs across three columns, which might be read as three sonnets. But there is an ambiguity introduced by fragmenting the poem that means the poem need not be read down each column in turn running left to right. It is also possible to read each line across the columns, or the first stanza of each column in turn. Both of these reading give a poem in two halves of 21 lines each.

The first stanza gives a good sense of how the poem is constructed, and contains words and phrases that recur in the rest of the poem:

’21 x pills a day
make sweet thy beauty
parkinson’s you see
started vertigo
dizzy all the while
fell 4 x times = smashed face
started parkinson’s’

’21’, ‘make sweet’, ‘thy beauty’, ‘parkinson’s you see’, ‘started’, ‘vertigo’, and ‘parkinson’s’ all appear again. Even while broken into pieces the poem circles itself, its own areas of concern, giving it a unity and coherence it might initially seem to lack.

This does not seem designed to imitate any particular mental confusion so much as it feels like an act of resistance. Illness is defined more by medication than by symptoms, and both are an inconvenience. And here and there some aspect of a person (the subject of the poem? the author?) keeps slipping out. This is not loss but an ongoing negotiation with life and illness.

From the four sections I have read this idea of an ongoing negotiation with life and illness is a consistent theme throughout the book. For me this allows for a far greater human interaction and identification with the experiences of the authors than some sentimental veneration of their wisdom and remembrance of things past. To acknowledge the frustrations, pain, anger and limitations of age-related illness is surely more healthy than a vague sympathy. It does not make for a comfortable read, and the poetry is not instantly recognizable as the personal reminiscence and anecdote in conventional forms you might expect from a project of this nature. To my mind this is a good thing. It is more interesting and compelling for the reader.

It would be interesting to know whether the experience of creating the book was more satisfying for the participants than just writing a set of conventional personal reminiscences. Certainly one of my initial thoughts in response to being approached to comment on the book was that experimental approaches, being less codified, less familiar, might be more accessible than more conventional poetry. We all have an idea of what conventional poetry should look like, and that it has a number of rules that we do not understand. These preexisting ideas can limit what we feel is possible, and therefore what we ultimately produce. Whatever the truth, the more experimental approach has led to a book you are actually likely to read and return to, rather than pick up out of sympathy and never open again.


Matt Dalby is an experimental poet whose works take shape within multiple approaches and mediums, including sound and visual making. His blog Santiago's Dead Wasp is a key journal of experimental writing and related events in the North West of England, as well as a document of Matt's ongoing project. His extraordinary communal Mutapoem is world-embracing.

Tuesday, 4 May 2010

Parkinson’s Disease

Medical Director, Doctor Catania interviewed at Stepping Hill Hospital, Stockport, 2009

by Philip Davenport

For Parkinson’s Disease, the myth is the extreme. If you flash the word ‘Parkinson’s’ people conjure up pejorative words associated with extreme cases. This doesn’t describe the long journey of a patient. It is a progressive disease, but there are different rates of progression – almost individual. We have effective symptomatic treatment for patients.

30 years ago Parkinson’s was untreatable. Its progression remains untreatable, but the difference is that now the symptoms can be treated effectively. Combinations of treatment can be tailored. Older people frequently have other morbid conditions, so Parkinson’s is not necessarily the only contributor to illhealth.

Nowadays there’s a vast interest in Parkinson’s Disease among medics and the pharmaceutical industry, because the population is ageing and Parkinson’s is related to age. They know there’ll be a sustained demand for treatment. Very likely in the future, there will be novel therapies improving symptoms, but also influencing the rate of the disease’s progression – at the moment we can’t influence progression. There’ll be a lot of effort to diagnose it before symptoms develop – at the moment there’s a 10-year period of Parkinson’s that’s pre-clinical, invisible to us. Spotting and influencing the disease earlier will affect the rate of progression.

A large proportion of sufferers experience abnormalities with their sense of smell, which is possibly an indicator. Also constipation, depression and abnormal sleep. At the moment you can’t accurately diagnose pre- Parkinson’s.

Patients inevitably experience an element of mourning. There’s a wide spectrum of patients. Some self-diagnose. Some are relieved to be told about the nature of the illness and that there’s effective treatment available. Others are taken aback and shocked. Others never come to terms with it. There’s a high incidence of depression with Parkinson’s Disease. Sufferers will need help with this depression and it affects their perception of the illness. In some cases it’s more effective to treat the depression than the Parkinson’s.

Who copes? A personality type associated with Parkinson’s Disease would be highly intelligent and driven. These people tend to be positive. They can be amazing – they’re clearly encountering a high degree of disability but can cope and will say life is tolerable. Other patients, from an objective point of view, seem never to be happy, always want to change their treatment. People with good family support, social networks, positive, who are loved and cared for – this helps with the illness.

The quality of their emotional life – particularly how they deal with the depression – is dependent on how they adapt. Some adapt well, rather than pursuing hobbies that are impeded, they pick up other activities. Coping is affected by how people perceive their own body to be – visual things like the tremor will affect wanting to go out. Eating, for example, or limitations with walking, can produce a social narrowing. But this is highly variable.

Normally after 10 years, people are likely to develop Parkinson’s Disease dementia, which is similar to Lewy Body Disease dementia. Usually there will be visual hallucinations, or tactile or auditory hallucinations. There might be daytime somnolence and acting out dreams. It is an executive dementia, which means that people preserve their short-term memory, but have difficulty in formulating a sequence of ideas. For example, if asked to follow a sequence of alternating numbers or letter, a person with Parkinson’s Disease would not be able to do it.

If you talk to someone with Parkinson’s Disease, they might give the impression that you are not understood. They might also stare at the TV, baffled by the complexity. It is all to do with this inability to deal with sequences. For instance, if you ask them to tap out a simple rhythm with one finger they might be able to do it, but tapping out the same rhythm with two alternating fingers would defeat them. To use a metaphor, it’s a bit like trying to play a piano using rhythm but no scales, no melody.

Giving the news to somebody that they’ve got Parkinson’s is something I’ve done hundreds of times and yet each is unique. When I meet a patient who I’ve diagnosed with the disease I first of all describe what I found in the examination; I tell them that in my opinion this suggests that they have got Parkinson’s Disease. Then I ask: “Have you heard of it?” Next I tell them that this is not curable, but we have very effective symptomatic treatment. It is progressive, but difficult to predict and varies individually. We have a lot of knowledge of it so we can give the best treatment available. I’ll tell them about DVLA, then give them a pack of information to read about the disease.

Sometimes the response is “OK, what do we do now?” and so we discuss treatment. Others need to digest the information. I bring them back in when they’ve had time to reflect and possibly to get more informed.

Their journey, their voyage, as sufferers can be described as passing through mild, moderate, severe stage. It affects the deepest trends in personality. The ‘weather’ changes, depending on the stage and so does treatment. At the mild stage you are interested in having some long-term effects with treatment, maintaining complex brain activity. By the severe palliative stage, you are trying to reduce complexity because the treatment is effective only if the brain has cells to use as transmitters. At this last stage, the dopamine won’t have enough cells to work with and at the very end will only cause hallucinations, increasing distress. The journey takes 15-20 years.

Patients are humans with a particular need. They’ve presented to me a physical problem that impacts on their quality of life. They see me as a person who has experience and knowledge to help. As a doctor, my duty is to help people – I cannot shy from my responsibility. This work is intellectually and medically challenging and also very emotionally fulfilling. The rewards are in helping the carers and relatives understand the nature of the problem, making them feel that they’re not on their own. Even though the patient has an incurable, degenerative condition we can still offer high quality care.

Medical Director - James Catania

James Catania has been a Medical Director for the last six years and is a specialist in the care of older people, for which he has retained his clinical commitments. He has worked as a consultant physician for the last 15 years and has been involved in management for over 13 years

Thursday, 28 January 2010

thee thy summer


21 pills day
21 pills x day
make sweet make sweet
thy beauty
parkinson’s you see
started vertigo
dizzy all the while
fell x four
smashed face
started parkinsons’s

day before the op
I could walk
now I'm not
make sweet make sweet thy beauty
be not self-willed
cant balance
cant walk tween
thee thy

sweet 21
tablets yknow calm you down
sorry mrs jones you’ve got parkinson’s
shock shock
tablets make sweet
7 x morning 3 x dinnertime
7 at night
1+water
1+water

mdp for parkinson’s
choke little
little tube
thee thy summer
be not self-willed
summer pink and blue

choke bit
shake bit
some-a-times
sometimes in the morning
everything whizzing round
vertigo started in
started out with vertigo
parkinson’s you see
thy beauty make sweet make sweet



Doreen Jones
17th October 2008
(alternate edit)

Monday, 22 June 2009

importance





Hallucinations, mainly of a visual nature, are considered to affect about one-quarter of patients with Parkinson's disease. They are commonly viewed as a side-effect of antiparkinsonian treatment, but other factors may be involved.' 'BRAIN a Journal of Neurology' http://brain.oxfordjournals.org/

importance

a box of chocolates
a little boy running back
down the ward
to say goodbye to grandfather
remembrance

(in here it’s)

waiting, all this waiting
captured, a refugee, loss of furniture, loss of house
you can’t make a bed a home
I don’t want to be unconscious
in their presence


(in here it’s nice)

hallucinations come with the pills
enjoy them, visitors are medicine
taking the mind to some other place
if you don’t have a dream
you’ll never have a dream come true

(in here, it’s nice a little)

uncertainty is my home
a lost person, a dispossessed person
you don’t feel the bed is yours
I’m interested in life
I’m having to change my life

(in here it’s nice, a little bit, but)

waiting to die it seems
spend the day getting the button right
getting the zip right
learning to
walk


Raymond West and Mary Mitchell
11 June 2009

Thursday, 18 June 2009

overcome



Parkinson's disease is a chronic (persistent) neurological condition that affects around 120,000 people in the UK. The condition is named after Dr James Parkinson, who first identified the it in 1817.

Parkinson's disease affects the way the brain coordinates body movements, including walking, talking, and writing.
NHS choices website
overcome

Parkinson’s (face it)
face it, get involved, take part
in sports: the adrenalin temporarily
overcomes the Parkinson’s
(face it)
don’t take the pills as gospel
at 1am in the morning
you can be flexible
get a consultant who knows
about Parkinson’s (the bad doctors
do damage)
when I got diagnosed
I dropped out into sulks
refused meals
then decided
this was a waste (face it)
have a bout with life
live to the full
with
an incurable disease.

Ray West
11 June 2009