How do I remain positive?
Being diagnosed with Parkinson’s disease is a life-changing event but it is very possible to maintain a good quality of life.
Getting used to having Parkinson's may be frustrating at first, you may have to take a shorter walk than normal, or play a shorter round of golf. But keeping an open mind and embracing a few lifestyle changes will help you to adapt better, for example, you may need to change the way you travel or spend leisure time, but ultimately all of these small changes will enable you to continue to lead a fulfilling and happy life.
There is no doubt that a positive outlook, along with determination to overcome obstacles, will help you in adapting to life with Parkinson’s and, given time and an optimistic attitude, you will be able to continue with the activities and relationships that make your life enjoyable and meaningful.
Remember, having Parkinson’s does not mean everything is over.
See also Living well.
What will my treatment involve?
There is no single, optimal treatment because Parkinson’s is such an individual condition. We’re all built differently and your own symptoms will evolve over time. You will need to work together with your doctor to find the right balance of treatments for your specific symptoms.
In the beginning, a single medication or a combination of different medications can be used. Medical treatment is started in low doses and increased gradually. Furthermore, medication is always individual and can vary greatly between people and can also cause side effects. Therefore, medical treatment for people with Parkinson's requires regular follow-up appointments by a physician with a good knowledge of the condition so that adjustments can be made as required.
Symptoms can be effectively controlled, often using a combination of the following:
It’s always important to understand the choices of treatment offered to you, so if you are ever unsure about your options or find some information difficult to understand, please discuss with your doctor who will be able to talk you through everything.
See also Treatments and Therapies.
Who can advise on the best treatment for me?
Your family doctor will usually be your first point of contact. In some countries, there are Parkinson’s Disease Nurse Specialists who act as a ‘bridge’ between you and your doctor, answering queries or referring you to other professionals who can help.
There are many other professionals you can request to see, often referred to as the multidisciplinary team [LINK to Therapists and MDT care] (MDT). The MDT is a group of specially-trained professionals which your doctor will bring together to treat each of your symptoms, including the emotional and psychological, as well as the physical. Using their various skills, they can help you to manage your condition as effectively as possible. The team’s wide ranging expertise will enable them to advise on a number of aspects of Parkinson’s which specifically affect you, from medication and mobility to drooling and diet.
Remember that you are a key part of the team and it’s important to try and build good relationships with all involved, so that you feel comfortable in discussing any problems that you may have. The MDT will want to include you in making decisions about your care, and by monitoring your symptoms and how effective treatment is will be invaluable information to them.
If you are interested in seeing the multidisciplinary team you will need to speak to your doctor who should be able to arrange this on your behalf.
The professionals who are part of your team may vary depending on the country in which you live, there is no standard template for who is included in the MDT and professional titles may vary between countries too. Moreover, the MDT members will vary depending on your individual needs and will change as the illness progresses.
See also Treatments and Therapies.
Will I have all my treatment in one place or will I have to travel?
If your hospital has all the facilities and specialist help available to you, then the chances are you will be able to receive your treatment there. There may be occasions, though where you need to travel a bit further to a different hospital for other more specialised forms of treatment, or to see a different consultant. Your doctor should always discuss with you beforehand where the various aspects of your treatment are likely to be so that you can work out in advance necessary travel arrangements.
If transportation is a problem for you then mention this to your doctor as in some locations community transport may be available to help with your journey.
I’d like to see a specialist. Can you recommend a doctor who specialises in Parkinson’s?
If you would like to see a specialist or a nurse who specialises in Parkinson’s you should first talk with your doctor. Referral procedures depend on the country in which you live and your doctor will be able to suggest who else you might be able to see.
Remember that a doctor with a special interest in Parkinson’s may have a different name, again, depending on which country you live in, for example a Neurologist, a Movement Disorder Specialist, or a Consultant in the Care of the Elderly with a special interest in Parkinson’s.
See also: Creating your healthcare team.
Who should I turn to for advice and how do I access them?
The multidisciplinary team (MDT) is a group of specially-trained professionals which your doctor will bring together to treat each of your symptoms, including the emotional and psychological, as well as the physical. Your doctor should be your first point of contact to access these professionals, drawing upon their various skills to manage your condition as effectively as possible. The team’s wide ranging expertise will enable them to advise on a number of aspects of Parkinson’s which specifically affect you, from medication and mobility to drooling and diet.
There are also many organisations you can turn to. Your local Parkinson’s organisation may also have information in your own language to help you; see Our members and Other Parkinson’s organisations contact details.
See also Treatments and Therapies.
How often will I be seen and will I need more tests?
It’s hard to say how often you should be seen as this will depend on the nature of your symptoms, the rate of their progression and the services available where you live. If however you are concerned about your symptoms, or if they are progressing quickly and you do not have a follow up appointment with another member of the multidisciplinary team for some time, speak with your doctor as they may be able to arrange an earlier appointment for you.
Your doctor will usually monitor the progression of your condition by talking to you, observing symptoms and by physical examination. You won’t usually need to have tests, although in certain circumstances your doctor may decide to run blood or urine tests if the course of your Parkinson’s appears to accelerate. Renewed brain scans, such as a magnetic resonance imaging (MRI) scan, are usually not necessary, unless specific complications arise that are not responding to medication, for example severe freezing, balance problems or memory difficulties.
Who will keep track of my progress? Should I keep a diary to monitor my Parkinson’s?
Your doctor will usually be your first point of contact. They will also be able to help with making appointments with other members of the multidisciplinary team and will monitor your progress. They are also there to answer questions and follow up on any concerns you have regarding any aspect of your treatment.
Keeping a diary can be very helpful in monitoring how the symptoms of Parkinson’s affect you and how you respond to your medications, including adjustments that are made over time. A written record can be an accurate reflection of your life with Parkinson’s over a period of weeks, months or years and can help in highlighting:
- the pattern of symptoms you experience
- the effectiveness of the medications you take and how long they last
- any side effects of medications
- any changes in your emotions or behaviour that may be related to medications.
Writing down your own individual experiences on a day-to-day basis can also help you effectively communicate any changes to your symptoms or your feelings with your doctor. This can be very useful, particularly as appointments are often too short for doctors to ask lots of questions, and your visit may be on a day when your symptoms do not follow their general pattern. Being able to review how you have been over a period of time can help your doctor:
- understand how effective medications are for you personally
- pinpoint any particular difficulties or patterns of symptoms
- decide on any necessary adjustments in medication dosage.
See also Keeping a diary.
Can I always see a doctor who specialises in Parkinson’s?
A specialist in Parkinson’s will normally confirm your diagnosis and be involved in your ongoing care, but in many countries routine appointments may be with your local practice doctor or other healthcare professionals.
Where you live and the available services will determine who you see.
Can I use complementary or alternative treatments instead of conventional medicines?
Complementary therapies are non-conventional health treatments, often based on ancient systems that people use alongside standard western medicine. The range of such therapies is wide, with the majority taking a holistic approach (treating the patient as a whole, rather than just addressing the symptoms). It’s this approach which makes complementary therapies so appealing to people with Parkinson’s.
It’s important to note that attitudes towards complementary therapies, levels of use, and which types are most popular, vary from country to country.
In general, doctors are more open to the idea of complementary medicine than they used to be, especially if it is ‘integrated’ (used alongside conventional treatments).
Few of the therapies used have undergone rigorous scientific research and even less are regulated through government legislation.
Many doctors still have reservations and do not recommend that you use such therapies instead of conventional medicine. If you are thinking about embarking on a course of complementary or alternative therapies, it’s important that you discuss with your doctor first before beginning the therapy.
See also Complementary therapies.
How can I be involved in my treatment?
The multidisciplinary team who look after you will closely involve you and your carer or family. They are there to support you in whatever way you may need, and will endeavour to build a good relationship between you so that you to always feel at ease in discussing any problems that you may have.
You are very much part of the team, and can be involved in many ways. One important way is by keeping a diary to monitor how the symptoms of Parkinson’s affect you and how you respond to your medications, including adjustments that are made over time.
Informing the team about difficulties you find with everyday tasks can also help them to find solutions, so be honest and if your medication is not effectively controlling your symptoms, or if you are struggling with certain activities, let them know. A strong partnership with those who look after you relies on good communication and being honest, not covering up difficulties.
See also Appointments with your healthcare team and Creating your healthcare team.
Can I see a Parkinson’s Disease Nurse Specialist?
Some nurses have been specially trained in Parkinson’s and can act as a ‘bridge’ between you and your doctor, answering questions or referring you to other professionals within the multidisciplinary team. These are called Parkinson’s Disease Nurse Specialists (PDNS) and their role can encompass:
- case management
- care pathway, including dealing with symptom control and complications
- counselling and acting as an advocate to ensure access to evidence-based information and services
- medication management (including prescribing)
- educating people with Parkinson’s and their families, and the wider multidisciplinary health and social care team.
Not every country has PDNS and the referral procedures do depend on where you live.
If you would like to see a PDNS you should first talk with your doctor who will advise if a PDNS service is available in the country in which you live. Alternatively, you can contact your national Parkinson’s organisation1,2 who will also be able to help you.
- Our members
- Other Parkinson's organisations
If I am unhappy with my treatment can I seek a second opinion?
Each country has its own agreed process to follow if you are unhappy with your treatment. Who you complain to will depend on which part of your treatment you are unhappy with. If it is not your own doctor you are unhappy with then it is usually a good idea to talk to them first.
If you are unhappy with your own doctor you may find it helpful to contact a patient advice service or patient liaison organisation. The Parkinson’s association in your country should be able to provide contacts and advice - this website contains the contact details for Our members and Other Parkinson's organisations.