Taking Control

What is Self Management?

Self-management is an important part of living well with Parkinson’s. We are all too familiar with ever growing demands on the NHS and so it is important that where we can we take control and make informed choices about our care. It is also very useful to set our own priorities to help us in the challenge that is life with
Parkinson’s.

At times we do need the advice of physiotherapists but because they are overstretched, it is important to build our own fitness schedule into our weekly activities. To maintain our mobility and flexibility we can join the gym, go swimming or walking, sign up to a local Parkinson’s’ exercise group or Conductive Education Class or one of the other activities such as Moving With Music. It might be that you only have a few sessions with the speech therapist but you can join Find Your Voice or the Loud Crowd to keep practising the techniques you have learned.

There are two courses aimed at equipping people living with Parkinson’s to manage their condition and lives, one run by the NHS and the other by Parkinson’s UK.

The NHS Self-Management Course

This will be held at the Herts Neurological Service in Langley House, and has two modules.

Module A is designed to cover the needs of anyone suffering from a neurological condition. Personal plans, well-being and health management are discussed and aimed at the service user. Other aspects covered include exercise, nutrition, energy levels, work and occupation, relationships and grasp of the media. This course runs
into two days.

Module B covers the specific needs of a patient diagnosed with Parkinson’s Disease. It is focussed on the long term needs associated with the condition. This runs for a further two days.

This course is currently only open to the person with Parkinson’s, not to the family, as they are all about what you can do to help yourself.

If you have difficulty with your memory it may be more helpful for the nurses/therapists to discuss what you can do to help yourself, with you and your family on a one to one basis instead.

Herts Neurological Service will shortly have a free CD version of Module A available at home or in groups nearer home. Look out for further information from Herts Neurological Service, or ask your nurse / therapist. The plan is to put Module A on the internet too. If the first effort is successful we hope to film the Parkinson’s
module (A) in due course.

Herts Neurological Service is always looking for volunteers who have been on the courses to come back to the course and encourage other people with Parkinson’s to do as much as they can to stay fit, active and healthy. If you would like to volunteer your time, please contact your nurse/specialist and let them know.

Speakers’ Topics in Module A of the NHS course may include:

Topic / Person Content
Physiotherapy About exercise and posture
Occupational Therapy About coping with fatigue and everyday activities, and
strategies for dealing with any movement disorders
such as “freezing”. Overview of health versus social
services process and referral procedure.
Speech & Language
Therapy
Understanding problems with communication and
swallowing
Clinical Psychology About memory, thoughts and feelings
Dietician Diets for people with Parkinson’s
Adult Care Services Overview of Social Services provision and referral
procedure
Continence Service Advice on maintaining a healthy bladder and bowels
Parkinson’s Disease
Nurse Specialist
Explanations of medical treatments
Service user and
therapist
volunteer who has been on the course comes
back to tell people on the course what he or she got out of it.

If you are interested in doing this course, contact Langley House. Please ask to be placed on the waiting list, and a team member will contact you to check that the course is right for you. Note that as of the date of publication of the Year Book, there are not yet contact details on the NHS website for Langley House. However, these should be available once the service has moved to this new location, which is expected to be by the beginning of April 2016 at latest.


The Parkinson’s UK Self-Management Course

A Pathway Through Parkinson’s is a self-management course run by Parkinson’s UK, and is concerned with making the most of your life.

The Parkinson’s UK course is designed to help both people with Parkinson’s and their carers manage their thoughts and emotions giving people time to think about their diagnosis, the impact on where they thought life was going, relationships and priorities. There is an opportunity to step back and look at the pressure on
individuals and their families and to discover what is important and to take positive action to achieve realistic goals.

A Pathway Through Parkinson’s gives you the space and time to do this in a safe, respectful, confidential environment. There is the opportunity to make new friends and to discover that you are not the only one struggling with the plethora of Parkinson’s symptoms. People arrive at the courses having different stories, the newly diagnosed making their first contact to those diagnosed for some time but for whom it is the right time to link up with Parkinson’s UK. Perhaps this is the right time for you?

This course runs one afternoon a week for 6 weeks or morning and afternoon for three consecutive Saturdays. Details of forthcoming courses are available from Tracey Tucker, Parkinson’s Local
Adviser, West Hertfordshire. Tracey’s contact details are:

Telephone Number: 0344 225 3779
Email: ttucker@parkinsons.org.uk


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