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Newsletter of UPBEAT, is the Parkinson's NZ special interest group for people with early-onset Parkinson's
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UPBEAT The Newsletter for People with Early Onset Parkinson’s
Understanding Parkinson’s by Belief in Education, Attitude and Treatment
June 2011 Issue 28
Taking Part in Clinical Trials Your may one day be asked by your doctor, neurologist or field officer to consider taking part in a clinical trial. Clinical trials are research studies to find better ways to treat a condition. These trials look at new drugs or combinations of drugs, or new ways of administering a drug.
Some trials will also include a control group who are given a placebo to ensure the drug being tested is measured against giving no treatment at all. Usually these will be double blind studies where neither the researchers nor the participants know who is getting the drug or the placebo. So it may be that if you are involved in a study you do not receive the new treatment.
Why have a clinical trial? The aim of a clinical trial is to find out if the new treatment or procedure is safe, has any side effects, or if it works better than the currently used treatment. There are three phases of clinical trials. Each treatment being tested has to go through all three phases before it can be used. • Phase 1 trials look at whether a trial treatment is safe or has any harmful effects • Phase 2 trials look at how well a treatment works • Phase 3 trials test a new treatment against the current standard treatment. Some phase 3 trials are carried out after a drug has been licensed
How are my rights protected if I take part in a trial? An ethics committee, made up of scientists, health professionals and members of the public have to approve all trials before they can be started. The ethics committee reviews clinical trials to make sure they are being run safely and can stop a trial if they are concerned for the welfare of the participants. Your privacy is protected by using a code instead of your name when recording information collected from you as part of the trial.
What information can I have when deciding to take part in a clinical trial? A doctor, nurse or researcher will explain to you before the trial begins what will happen as part of the trail. You will need to sign a consent form which will also explain why the trial is being done, the plan for each step in the trial, any side effects you may have and how the trial may affect your daily life. You can ask any questions you may have about the trial.
You can also still change your mind and stop the trial at anytime. Even if you decide to withdraw from the trial it will not affect your ongoing medical care.
What happens at the end of the trial? If you are thinking of taking part in a clinical trial, check to see what will happen at the end of the trial if you find the drug or treatment has improved your condition. In some studies where the drug proves to be effective, people in the placebo group are given the opportunity to also try the new drug. This will be part of the conditions of the trial and you should ask if this will be possible.
Page 2 UPBEAT June 2011
UPBEAT is a special interest group of Parkinson’s New Zealand
Upbeat Mission Statement: To improve the quality of life of people with the early onset of Parkinson’s Disease and their families by sharing information, experiences and strategies through interpersonal communication and support, until there is a cure.
Parkinson‟s New Zealand, P O Box 11 067, Manners Street, Wellington FREEPHONE 0800 4PD INFO email: [email protected] website: www.parkinsons.org.nz Parkinson‟s New Zealand Charity Registration Number: CC27373
In mid December I received the letter inviting
me to enrol on the UPBEAT Outward Bound
Course to be held in April. I was in two minds
about going. Did I really want to give up a
week going on a course? I was busy and had
other things to do, however I hadn‟t
considered my wife‟s response. “You should
go. Take the opportunity. You might not get
another chance. You will enjoy it. It will be
something different.” So I completed the form
and sent off the enrolment fee and put the
dates on the calendar.
Early March saw the preparation start in
earnest. Digging out the walking boots and
doing extra walking, even finding myself
running up the paddocks to prepare for the
physical challenge. The kit list seemed
endless. Would I really need all that? We were
only going for six days. A quick look at the
map to find Picton and the travel
arrangements were made. There was no
turning back now.
To say I did not feel some apprehension would
be telling a lie. Would I be able to meet the
physical and mental challenges of the course?
So on Sunday
10th April I
boarded the
Interislander
ferry from
Wellington. It
was easy playing
„spot the
Parkinsonian‟
and it wasn‟t
long before a
small group of
UPBEAT
members had
formed and we
completed our voyage to Picton and into the
unknown.
When Outward Bound said that the course
starts at Picton they are not joking and soon
we were on a boat with about one hundred
young adults who were going to OB as well.
They were all young and fit. How were we
going to measure up? But soon everyone was
singing in preparation of our arrival at
Anakiwa.
The staff at Outward Bound put on a powhiri,
we sung our songs in response and
introductions were made.
We were split off into our UPBEAT team and
the McKenzie watch was formed. Fourteen
people, ten Parkinsonians, two carers/
partners and two Parkinson‟s field officers.
Sunday afternoon, a lot of travel, surely this
called for a cup of tea and perhaps an
afternoon nap? No such plans. PT kit on and
we were away. Before long we were walking,
jogging, rolling in the mud and splashing in
the sea.
2011 UPBEAT Outward Bound
Nigel Roberts shares his experiences as part of this years UPBEAT Outward Bound course sponsored by Douglas Pharmaceuticals.
UPBEAT is a special interest group of Parkinson’s New Zealand
Upbeat Mission Statement: To improve the quality of life of people with the early onset of Parkinson’s Disease and their families by sharing information, experiences and strategies through interpersonal communication and support, until there is a cure.
Parkinson‟s New Zealand, P O Box 11 067, Manners Street, Wellington FREEPHONE 0800 4PD INFO email: [email protected] website: www.parkinsons.org.nz Parkinson‟s New Zealand Charity Registration Number: CC27373
Page 3 UPBEAT June 2011
Outward Bound was full on. Over the next 6
days we were to do team building, climb
trees, sail, canoe, walk and get wet a lot. All
challenging our perceived boundaries and
limitations, although the morning PT, run and
plunge into the sea never became a highlight
of the day, but was seen as „character
building‟ in some strange way.
Our instructors, Pip and Heydon encouraged
and cajoled us to explore our limits all within
the well-structured and safe environment of
Outward Bound. We became a team, giving
moral and physical support without brooding
on our common enemy.
Friday 15th of April loomed up very fast and
bags were packed for the return journey
home. We‟d had a great experience, met the
challenges, set new goals and hopefully
encouraged others to follow.
What of the young people who were there? I
had to admire them. They were on a twenty-
one day course. All motivated and enjoying
their experience and facing new challenges.
I had wondered if it was worth giving up a
week of my life to go. It was worth it. I gave
a week to get my life back and face the
future with a new awareness and goals,
including an ongoing fitness regime.
Many thanks to our instructors and all the
staff at Outward Bound. And a special thank
you to Kay and Eileen, our Parkinson‟s Field
Officers, who help so much to create that
safe environment. Hopefully they have gained
from the experience of living with Parkinson‟s
twenty-four hours a day. And not forgetting
the other members (now friends) who made
up „McKenzie watch‟, their help and support
was second to none.
To all other UPBEAT members who get the
chance to attend this course, I say take it, go
and have a great time.
Ach aye McKenzie watch!
Page 4 UPBEAT June 2011
The US based Parkinson‟s Disease Foundation holds regular webinars (web based seminars) by leaders in Parkinson‟s research and care. These can be attended at the time of transmission or watched later. There are a number of past seminars available to view online on a variety of topics from managing PD to caring for caregivers. You can also sign up to receive notifications about
upcoming briefings. www.pdf.org
Parkinson‟s UK‟s website has interesting information about UK based research into Parkinson‟s and good publications about living with Parkinson‟s. There are forums on a range of topics
you can join. www.parkinsons.org.uk
This blog has became a therapeutic hobby for writer and cartoonist Peter Dunlap-Shohl. An entertaining take on living with Parkinson‟s, his own experience of using the Nintendo Wii and a whole lot more.
www.offandonakpdrag.blogspot.com
UPBEAT Website & Blogs
Good news! The Viagra spam that has plagued our website is now blocked and we are ready to relaunch our blogs.
We are looking for UPBEAT members to write about their own experiences for our blog. You might be a person with Parkinson‟s or a carer and about to embark on a challenge, want to share things that have helped you or have advice to share. Your blog entry could be a one-off, or an ongoing series of posts.
If you would like to be involved, please contact Lisa on 0800 473 4636 or email [email protected]
The internet is a great resource for information or to interact with people with similar interests. Here are a few suggestions of sites that might interest you:
You can follow us on Facebook and Twitter
Facebook.com/parkinsonsnz Twitter: parkinsonsnz
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