5 Tips from a Professor of Nursing on Achieving Success in Parkinson's Management
Who is Professor Annette Hand?
Annette has a clinical academic position as Professor of Nursing at Newcastle Hospitals NHS Foundation Trust/Northumbria University/Parkinson’s Excellence Network and she divides her time between three roles. She has worked within a specialist Parkinson’s Team in the UK for over 23 years, starting as the Research Associate before obtaining a nurse specialist post. For 16 years she worked as a Nurse Consultant in Parkinson’s— coordinating the Parkinson’s service, supporting patients and their families and managing a team of Parkinson’s specialist nurses. As an autonomous practitioner she is responsible for diagnosis and management of all stages of Parkinson’s. She has worked on and has been involved with multiple research studies at a local, national and international levels, including non-motor symptoms, sexual dysfunction, information, prescriptions and care needs in Parkinson’s. Her doctorate focused on understanding carer strain and its relationship to care home placement for people with Parkinson’s. Annette was recently appointed to Professor of Nursing in recognition of her research work within the field of Parkinson’s. Annette also has the UK national role of Clinical Lead for Nursing within the Parkinson’s UK Excellence Network— as part of the clinical leadership team. This role was developed to support service improvements through education, knowledge exchange and evidence based practice— and to support the role of the Parkinson’s Nurse across the UK.
1. Right information, at the right time, in the right way
Getting the right information, at the right time, in the right format for you is vital to help you, and your family/carer, to understand what is happening to you, how you can help yourself, treatment options and what we, as health and care professionals, can do to support you. Getting the right information is not always easy, and for those of you who have searched Parkinson’s on google will know that you get millions of hits with lots of inaccurate or out of date information (that can also be very scary). It can be difficult to know where to find information that is accurate, credible and reliable. Parkinson’s UK is always a good place to start and with their growing range of information in different formats (for example leaflets/videos/podcasts/one-to-one support and groups) these are becoming even more accessible. The Parkinson’s Foundation is another reputable group. If you have any questions or need more support on where to go for information (on anything at all!) please get in touch with your specialist nurse/service. We may not always know the answer, but we can direct you to a whole range of information to ensure you get the right information, at the right time and in the right way.
2. Keep Active
There is so much fantastic evidence out there that keeping physically and mentally active can be neuroprotective, slow the Parkinson’s down and in some cases even result in taking less Parkinson’s medication. We know that physical activity can have a positive impact on your mental health as well. Knowing what, when or how much exercise to do— can be trickier. It can also be difficult to exercise if this is something you have not done before. It is important to keep exercising (and stretching) all muscles that can be impacted by Parkinson’s, including things like your voice and bladder, to maintain muscle tone, reduce stiffness and improve subjective weakness. There is lots of information, resources and guidance to support you and to suit all levels of ability and preferences— so find things that you enjoy that you can build into your routine and have fun with. It all counts!
3. A Partnership Approach
From diagnosis, your health and care professionals should not only be caring for people with Parkinson’s but also supporting them to make decisions about their own care plan. Your care should be based on what you need, when you need it, taking into account your personal choices, preferences and lifestyle. This means that you need all the appropriate information (back to point 1) to start with, and a chance to discuss these with your providers to be able to compare all your choices and options and make an informed decision that is best for you. For example starting treatment for Parkinson’s should not be the soul decision of your consultant, you need to know:
• what all the treatment options are
• how they work and what symptoms they may improve
• the pros and cons of each treatment
• potential side effects and things to look out for
• how to take them and when they should start to work
• the benefits to starting treatment or the implications of not starting treatment
• what the research says about the treatments
Without knowing these things you can’t make an informed decision or understand what is best for you. This goes for any treatment (drug or non-drug) option. This takes time, so if you are not sure about something take a pause, get the information you need, and then you can make those decisions in partnership with your specialist team/service.
4. Self-management
Many of the symptoms that occur due to Parkinson’s can not be treated with the drugs used to treat Parkinson’s itself— and sometimes these medications can even make them worse. We also know that prescribing medication for many of these non-motor symptoms should not be the first option. Whether you are having problems with sleeping, constipation, or anxiety for example— there are lots of ways you can help yourself, with support and guidance, to improve these symptoms without the need for more medications. Asking ‘what can I do to improve this symptom?’ should be the first thing to ask your specialist team rather than ‘I have this symptom, what can you do about it?’ Parkinson’s is life changing, and may require you to adapt your lifestyle, routine or even diet, but these changes will ultimately mean you have much greater control of your Parkinson’s, and the level-best symptom management possible. To help you to accomplish this get the right information (1), stay active (2) and engage in a partnership approach in your care (3)
5. Involve your family, partner, carer, friends
Parkinson’s will not only have an impact on you, but also on those around you. Your family or partner may also have questions and want information about the condition, so they have a better understanding themselves. For most people changes to Parkinson’s symptoms happen slowly over a long period of time and you may not be aware of these. It is often family, partners or close friends who can notice these differences over time. Starting a new drug treatment or changing your routine will also potentially change your symptoms,— which you may not fully appreciate. Including your family, partner, carer and close friends in discussions and treatment decisions will not only better help them to understand your Parkinson’s but also support them to play a vital role in your care team. Remember that specialist services and many Parkinson’s support groups and advocacy organizations are also there for family, friends and carers to support their needs.
To read more books and articles by Michael S. Okun MD check on Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonsFromTheBedside
He also serves as the Medical Advisor for the Parkinson’s Foundation.
To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.
The blog artist is Jonny Acheson.