Parkinson’s disease not yet curable, and so there are thousands of people throughout the country living with it. Although their lives will change in some regards, many people with Parkinson’s disease continue to remain physically and mentally very healthy.
Parkinson’s UK is a UK-wide charity offering support to the people with Parkinons’s disease, and their family or carers.
They have excellent information for people who have recently been diagnosed with parkinson’s disease
Specialist Therapy and Rehabilitation
Edinburgh Parkinson’s Assessment Clinic
As well as our medical and nursing clinics, the Edinburgh Parkinson’s Assessment Clinic is held monthly at the Assessment and Rehabilitation Centre (ARC). The clinic offers those with a new diagnosis of Parkinson’s a thorough assessment and treatment plan.
People attending this have the opportunity to see physiotherapists and occupational therapists, and we work closely with colleagues at the Neurological Rehabilitation Service and Speech and Language Therapy
Older people with more complex needs may be referred for a thorough assessment at one of the day hospitals across Lothian.
The ways in which different therapies like physiotherapy can help is also explained on the Parkinson’s UK website.
Our Specialist Parkinson’s Disease nurses also provide a support and a contact for patients, either in clinic and advice for more urgent problems.
Medication
Often at the time of diagnosis, a person doesn’t need medication. However, as time goes by their brain will make less dopamine it is likely they will need start new tablets to help replace this. These either have a similar effect to dopamine or work to increase the levels of dopamine in the brain.
Three main types of medication are commonly used:
- levodopa – usually called co-careldopa (Sinemet) or co-beneldopa (Madopar)
- dopamine agonists – for example ropinirole, pramipexole or rotigotine
- monoamine oxidase-B inhibitors – called rasagiline or selegiline
Exactly which medication would be best for you is something you can discuss with your doctor.
More information about treatments can be found on NHS Inform and Parkinson’s UK, all of these are available for your doctor to use if it is thought they would work best for you.
There are also other specialist treatments that can be considered for a small number of patients if other medications have failed and your doctor thinks it could help you. These include injections, pumps or brain surgery.
Occasionally, newspapers report on new research and treatments for Parkinson’s disease. It would usually be many years away before any treatment can be offered in clinic, and unfortunately a lot of medical research reported in newspapers does not live up to expectations.
Other Services
Here are some other services that may be helpful
Finances and Driving
Many people continue to work and live normal lives after their diagnosis with Parkinson’s disease. However, you may need help with this and information on sick pay and different allowances are listed here.
If you are suspected of having Parkinson’s disease and you hold a driving license, you are required to inform the DVLA and your insurance of this. You won’t necessarily have to stop driving, but you will have to provide more information about your condition. There is more information from the DVLA, and, and you can inform of a medical condition online.
Support Groups and Activities
The Edinburgh branch of Parkinson’s UK is very active host and number of regular activities and specialist events. These are for people with Parkinson’s disease, their family, carers or friends.
Parkinson’s UK also has a very strong online community and forum where you can take part in online discussions and seek answers to questions
Another charity that runs events around the UK is the Cure Parkinson’s Trust.
Using Technology
Parkinson’s UK also has exciting information on the use of Apps and devices for Parkinson’s
These can help people with their medications, and symptom control, and everything included has been reviewed and selected by those living with Parkinson’s.
New Developments
If you are interested in hearing about new developments or discussions around aspects of Parkinson’s Disease, the World Parkinson’s Congress (WPC) publishes a regular and very informed blog on a wide range of topics.
