upbeat june 2011

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.

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

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!

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:

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