Your needs in terms of care and support will evolve as the disease progresses. You will need a care team to accompany you and to support you physically and emotionally.
Parkinson’s disease is a complex disease. It requires a multidisciplinary approach. In addition to your neurologist, your healthcare team should include a variety of healthcare professionals who will be able to suggest different therapies to treat all of the facets of the disease.
Some of these professionals are:
- Neurologists
- Speech therapists
- Nutritionists
- Physiotherapists
- Occupational therapists
- Chiropractors
- Kinesiologists
- Psychologists
When is it necessary to assemble this care team?
You should start looking for members of this care team relatively early. Not only can it take time to find professionals who specialize in Parkinson’s disease, but some of their early interventions can have long-term benefits.
By consulting early, you have the chance to quickly adopt good habits and to plan the evolution of your needs according to that of the disease.
Your neurologist, pivot nurse or social worker are the people who will direct you to these professionals accessible in your movement disorders clinic, in a CLSC or in the private sector.
Who is the most important part of this care team?
You are the most important element of the healthcare team. You are a specialist in Parkinson’s disease. You alone live with the disease. You are the one who is able to feel the symptoms and to describe how they are affecting your daily life.
Your loved ones are also important parts of this team. They are also able to bear witness to the obstacles you are living through. They play a daily role in your health and well-being. You and your caregiver are going to build the heart of this team. The success of this partnership is based on a mutual understanding of the kind of help and emotional support you want and need.
In order to communicate clearly with your neurologist and your healthcare professionals, try to gain some knowledge on Parkinson’s disease and its symptoms. This will help you better manage your disease, be more effective in your encounters, and to get the most out of your treatments.
Who are the specialists in the management of Parkinson’s disease?
Neurologists are physicians who specialize in the diagnosis and treatment of Parkinson’s disease. Some of them have received additional training and become experts in movement disorders. They generally work in a teaching hospital. These experts have the experience and the resources needed to diagnose Parkinson’s disease and to manage the most complex cases.
If you are being treated by a general practitioner, you can ask to be referred to a neurologist or a movement disorders specialist. You should then be put on a waiting list which should not exceed 6 months.
What are the elements to consider when choosing professionals?
Whether it’s your neurologist, or any other professional who will help you better live with Parkinson’s disease, there are several factors you need to consider when making your choice.
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- How often can I meet with this professional?
- Will I be delegated a resource person on whom I can count?
- How long does it take to get to the place of consultation?
- Are the premises easily accessible by car or by public transport?
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- What is the type of practice of this professional (generalist, young people with Parkinson’s, advanced stages of the disease)?
- Does this professional work in an isolated manner or in an integrated manner in a multidisciplinary team?
- Does this professional work in an academic environment, in which case I could be exposed to research projects but also to students who are learning?
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- Do the communication style and the attention this professional offers me suit me?
- Is it possible to reach this professional by phone, if necessary?
- Are these professional’s values compatible with my own?
.Good relationships with professionals are built over time. If you are not satisfied, you can change any of your professionals at any time, even your neurologist. You don’t have to explain yourself.