Getting a diagnosis of Parkinson’s affects everyone differently.
Some people want to find out lots at the beginning. Others may take their time to explore what the condition might mean for them, and what support is available.
Whenever you are ready, we hope the information and links we will be adding to this page, will outline some of the main sources of support and guidance from Parkinson’s UK and other sources.
Here are some things it is helpful to know from the start
You can live well with Parkinson’s and keep doing the things you enjoy. See the Parkinson’s UK website for people’s stories.
Physical activity and exercising can help you manage your symptoms and slow down the disease, especially if you start early in your diagnosis.
The Parkinson’s Exercise Framework helps you to think about how to include different types of exercise into your routine. Break a sweat, Lift your mood.
You can optimise your health by: staying active, sleeping well, eating well, drinking lots of fluids, staying positive.
It helps to meet and talk to others who have been affected by Parkinson’s. Come to Branch activities and become part of the Parkinson’s’ community. See our Regular Activities page, or our Local support information.
Its your life. You and your family and friends can work alongside medical staff to manage your condition.
Think through what’s important to you and what you need help with. Prepare for meetings with health staff; identify your worries, questions and aspirations.
Treatment and Therapies
There are three main treatments to manage your Parkinson’s:
Parkinson’s drugs can help you manage your symptoms
Being active for 2.5 hours a week can help manage Parkinson’s symptoms and has a positive impact both physically and mentally.
Therapies for Parkinson’s
The three main types of therapy are:
- Speech and language therapy
- Occupational therapy
These can help you manage your Parkinson’s day to day.
Complementary Therapies such as aromatherapy and massage. Although not as well evidenced, many people with Parkinson’s tell us they find them helpful. Edinburgh Parkinson’s have a webpage dedicated to Complementary Therapies.
Everyone’s Parkinson’s is unique. So, different combinations of all of the above will suit different people. Talk to your GP, Specialist, or Parkinson’s Nurse to see what might work for you.
Or visit the Parkinson’s UK Treatment and Therapies website page.
Parkinson’s UK: Support available for people who are newly diagnosed, or looking for information and support
Dedicated Web Pages
There is a section of the Parkinson’s UK website devoted to newly diagnosed. This information is also for those who had a diagnosis some time ago, but who did not feel ready to explore information and options at the time.
Common Questions Answered
Will I get better? Is there a cure? Can I carry on driving? Can I carry on working? What about physical activity and exercise? Can I get financial help? How do other people cope with Parkinson’s?
To-Do List for the Newly Diagnosed
Contact DVLA. Contact insurance providers. Find out about financial support. Get active (stay well). Find out what to ask your Healthcare Professional.
Support for family and friends
One of the courses that has proven very beneficial is the Side by Side with Parkinson’s Course. The course is intended to help those who know/live/work with someone with Parkinson’s and who want to learn more about the professional help, drugs, benefits and support available.
Find local services, activities and support
Edinburgh Branch has a good section on this website with key information: Local support – Edinburgh Parkinson’s
First Steps Programme
First Steps is an online programme to help you make sense of your diagnosis and to take steps to start living well with Parkinson’s
Helpline and Local Advisers
Helpline (0808 800 0303)
Can provide free and confidential information and advice on all aspects of living with Parkinson’s, including medical issues, employment issues, welfare benefits, and health and social care.
The Helpline can link you to Parkinson’s Advisers for more local or in-depth support, including how to access welfare rights and other entitlements, access emotional support, and information and support on how to deal with the day to day impact of Parkinson’s.
Online discussion forum
Ask questions and share experiences
Social media Platforms used by Edinburgh Branch are:
Facebook (Edinburgh Parkinson’s Branch)
Edinburgh Young Parkinsons Support Group on Facebook is a closed group, but they are always happy to welcome new people. Either request to join on Facebook or contact Scott Wilson scottwils180@gmail
Meet People Affected by Parkinson’s
Local Parkinson’s Branch: see www.edinburghparkinsons.org for information about social events, exercise classes and other wellbeing activities.
Learn, get active and meet others.
The Branch offers many exercise classes at subsidised rates.
NHS Lothian Parkinson’s’ Nurse Specialist Service
This provides nurse led clinics (you can expect a review around every 6 months). You must have a confirmed diagnosis and be under the care of a NHS Lothian consultant, either Neurology or Medicine of the Elderly.
Telephone clinics on three mornings a week for people who have concerns about their condition which they feel cannot wait until their planned clinic appointment.
To book an appointment, call: 0131 465 9156
Get Involved in the Battle to Beat Parkinson’s
Get involved in research.
Find research opportunities on the Take Part Hub, or become a member of the Research Support Network.
Join Team Parkinson’s to be part of the movement to transform lives and find a cure (raise funds, raise awareness).