Find out more about Parkinson's

Receiving a diagnosis of Parkinson's disease is a life-changing event, and not knowing what the disease is and how it can affect your life and the one of the people around you can make things considerably worse. One first step towards feeling more in control of your own life can be to learn more about Parkinson's disease itself. Knowledge is power, after all.

While your GP and/or Neurologist should always be your first reference point for essential medical information and advice, there is a number of sources you can look into if you want to know more. For example, Parkinson's UK's own website provides plenty of free detailed information on many aspects of the conditions, such as physical symptoms, non-motor manifestations, and meds' side effects. Outside the UK, an important point of reference is the website of the European Parkinson's Disease Association (EPDA).

Both associations also offer a wide range of videos that can help you learn more about your life with Parkinson's. As a start, you could have a look at the video below from Parkinson's UK, which explains the essential characteristics of the disease:

Take action against motor symptoms

One of the most common and typical problems caused by Parkinson's disease is a constellation of motor impairments that affect several aspects of your life. From slower movements to rigidity and tremor, these issues can prevent many daily activities that once used to be simpler and might make you feel much less in control. For this reason, it is important to learn how to take action against these issues early on after the diagnosis.

To learn more about the motor impairments caused by the disease, Parkinson's UK's website offers a detailed pages on tremor, rigidity, and slowness of movement. In addition, as research progresses, a number of option for the management of Parkinson's symptoms are becoming increasingly available. These may include a combination of medications, physical exercises, surgery, and brain stimulation. To learn more about the currently available options, we advise to watch the following video by the Parkinson's Foundation on taking control of your symptoms:

Express your thoughts and concerns

Living with Parkinson's is not easy, and the daily challenges it entails can be a cause of stress, depression, and anxiety. Moreover, the disease itself can have a significant effect on your emotional stability, making you feel as if you have lost control on your thoughts and emotions. For this reason, it is important that you always express your negative thoughts and concerns with the people around you, as keeping them all for yourself is likely to make you feel even less in control. Instead, speaking up and trying to work on possible solutions together is an empowering process that can help you increase your feelings of control.

If you seek to learn more, Parkinson's UK provides useful information on both anxiety and depression. In case you feel overwhelmed and/or cannot express your concerns with anyone around you, they also offer a helpline that you can contact anytime by calling 0808 800 0303. Their trained advisers will be happy to help you.

Another way to tackle negative thoughts and emotions is through meditation. In particular, one approach that has proved to be effective in people living with chronic medical conditions is the practice of mindfulness, which can be defined as the "basic human ability to be fully present, aware of where we are and what we’re doing, and not overly reactive or overwhelmed by what’s going on around us" (more info here). Practising mindfulness can enhance your perceived control by putting you in charge of your own emotions again and giving you the instruments to manage your stress levels. The Internet offers a wide range of videos aimed at beginners who want to enter the world of mindfulness and meditation, some of them even specifically aimed at people with Parkinson's. If you prefer having a personal teacher, you can search for one in the UK here.

As a general start, you could have a look at the video below about the scientifically proven benefits of mediation:

Engage more with social activities

Parkinson's disease can make having a social life much more difficult, due to issues such as motor symptoms preventing mobility and chronic fatigue or depression undermining the motivation to go out. However, it has not to be necessarily this way. Your social life can be adapted to your needs and engaging more often with your family and your friends, as well as meeting new people, can have a great impact on your perception of control. You can find more information of this in 'Life With Parkinson's', a series of videos promoted by Parkinson's UK which explains how your social life can thrive even after the diagnosis. Examples include:

• Telling my boss about Parkinson's
• Starting an art business with Parkinson's
• Starting a new relationship with Parkinson's
• Running a cafe helps with my Parkinson's
• Walking a marathon with Parkinson's

In addition, a central role in the improvement of your social life can be played by local Parkinson's support groups. The Parkinson's community is very keen and supportive, and meeting people who share and/or understand your condition can help you achieve a much greater sense of control over time. If you are interested in meeting them, you can search for your nearest local Parkinson's UK support group here.

Find new ways to remember things

As time goes by, feeling more forgetful and distracted is a very common experience for everyone, and in most cases it does not require any particular form of intervention. However, having Parkinson's can enhance these issues to the point that they may start to interfere with your daily life and make you feel less in control. Thus, it is important that you recognise when your memory gets worse and talk to your doctors, friends and family about it, in order to take care of the issue in the most rapid and effective way.

In general, a potential way to improve your memory is to set a daily routine to which you can stick easily. This will allow you to focus your attention on single tasks during the day, without feeling stressed, overwhelmed, or excessively tired. Avoiding any changes to a well-defined routine also has the benefit of improving your organisational skills, which can be an essential part of your perceived control. You can find some basic advice on how to set a simple routine here.

In addition, there is a number of specific tools and techniques which can help you feel more in control of your memory and your routine. Examples include basic aids such as calendars, sticky notes, and diaries, which have all proved to be helpful in reducing forgetfulness. You could also use a 'memory basket', i.e. a specific basket (or place) where you can keep all your important items such as your wallet, glasses or keys. New technologies can also be of help with regard to memory (see section below).

For more detailed information on how Parkinson's affects memory and thinking and what kind of actions you can take to reduce its impact and improve your feeling of perceived control, you can visit Parkinson's UK's page dedicated to mild memory and thinking problems.

Discover how technology can help

A number of new technologies are currently under development in many contexts related to healthcare and well-being, and have the potential to help you improve your feelings of perceived control. These devices can act at different levels and may allow you to feel again in control of aspects of your daily life that are currently difficult to manage or that you have to delegate to other people.

An example of such technologies are Proteus Pills, a new generation of pills which contain a sensor that is powered by contact with your stomach fluid and sends a signal that shows what meds you took and when you took them. Another good example is GlowCap, a new type of wireless-enhanced bottle cap that can send reminders about your medications, such as times of administration or the need to refill.

If you are interested in trying any of these new technologies, you should talk about it with your GP or specialist. In the meantime, you can see a demonstration of how GlowCap works in the video below:

Share your expertise

It takes someone who has Parkinson's to know how it feels like to have Parkinson's. In other words, when it comes to Parkinson's you are the expert. For this reason, it is very important that you share your own expertise with Parkinson's associations and get involved with the information and refinement of services dedicated to affected individuals. This will not only benefit other people with the disease, but will also provide you with a feeling of empowerment that can greatly benefit your perception of control over your daily life.

An example of this is provided by Mark's story from Parkinson's UK, who was diagnosed at age 54 and found great meaning and empowerment in giving a voice to fellow affected people. You can find Mark's and many other stories of successful sharing of expertise on Parkinson's UK's Let's Work Together page.