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Building a Parkinson’s Care Team
Your care and support needs will increase as the disease progresses. You will need a care team to assist and support you physically and mentally.
Parkinson’s disease is a very complex disease that requires a multidisciplinary approach. In addition to your neurologist, your care team must include various health care professionals who will be able to suggest different therapies to treat all facets of the disease.
Some of these professionals include:
- Speech therapists
- Occupational therapists
When is a Parkinson’s care team necessary?
You should start assembling your care team relatively early. Finding Parkinson’s disease specialists can take some time and some early interventions may have long-term benefits.
Early consultation gives you the chance to quickly adopt good habits and plan for your changing needs as the disease progresses.
Your neurologist, pivot nurse or social worker can refer you to these professionals who are accessible in your movement disorder clinic, a CLSC or a private practice.
Who is most important in a Parkinson’s care team?
You are the most important person in your care team. You are a Parkinson’s disease specialist. You are the one living with the disease. You are the only one who can feel the symptoms and describe how they are affecting you daily.
Your loved ones are also a crucial part of your team because they witness the obstacles you are facing. They play a daily role in your health and well-being. You and your loved ones will help build the heart of this team, but the success of this partnership requires a mutual understanding of the help and emotional support you want and need.
Learn more about Parkinson’s disease and its symptoms to communicate more efficiently with your neurologist and health care professionals. This will help you manage your disease, be more effective in your appointments and get the most out of your treatments.
Who are the experts in Parkinson's disease management?
Neurologists, who usually work in university hospitals, are specialists in the diagnosis and treatment of Parkinson’s disease. Some have received further training to become movement disorder specialists. They have the experience and resources necessary to diagnose Parkinson’s disease and 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 disorder specialist. You will then be put on a waitlist which should not exceed six months.
What should I consider when choosing professionals?
Whether it be your neurologist or any other professional that will help you live better with Parkinson’s disease, there are multiple factors to take into consideration when making your decisions:
- Ease of access to care:
- How often can I meet with this professional?
- Will I be assigned a contact person I can count on?
- How long does it take me to get there?
- Is the space easily accessible by car or public transportation?
- Your health care needs:
- What is this professional’s specialization (general practitioner, young people with Parkinson’s, advanced stages of the disease)?
- Does this professional work alone or with a multidisciplinary team?
- Does this professional work in an academic setting, in which case I could be exposed to research projects and apprenticeship students?
- Most importantly, the quality of your relationship with the professional:
- Is this professional’s attention and communication style appropriate for me?
- Can this professional be reached by phone if necessary?
- Do I share the values of this professional?
Good relationships with professionals are established over time. If you are not satisfied, you can change professional or neurologist at any time without having to explain yourself.
Who can help me maintain my mobility and increase my range of motion?
Physiotherapists can help you maintain your mobility for longer, manage your daily activities and prevent falls. Several techniques, such as manual movements, ultrasound, hydrotherapy, or thermotherapy, are used by a physiotherapist to help you compensate for the loss of mobility caused by Parkinson’s disease.
Physiotherapists can recommend at-home exercises that will allow you to:
- Maintain good posture
- Work on your balance to prevent falls;
- Relieve muscle rigidity (stiffness)
- Increase muscle flexibility
- Relieve muscle pain
You can find physiotherapists specialized in Parkinson’s in the multidisciplinary teams of movement disorder clinics, CLSCs or private practices.
Who can help me reduce my pain?
Chiropractors specialize in neuromusculoskeletal treatment and prevention and their role complements physiotherapists. They can perform joint manipulations that allow the joints to regain their mobility, which is often impaired by Parkinson’s disease. Chiropractors can therefore relieve some of your symptoms such as muscle stiffness and balance problems.
You can find chiropractors specialized in Parkinson’s in private practices.
However, not all pain related to Parkinson’s is musculoskeletal. Some pain is neurological and requires specific drug treatments.
Who can help me develop my exercise routine?
Kinesiologists specialize in physical activity and use movement for prevention, treatment and performance.
Kinesiologists can evaluate your physical condition and the quality of your movements to create a physical treatment plan. They will help you implement your plan and adopt a more active lifestyle on a regular basis.
If you are already athletic and you would like to maintain your performance level, kinesiologists can also help you along the way.
You can find kinesiologists specialized in Parkinson’s disease in private practices.
Who can help me be more independent and adapt my home?
Occupational therapists specialize in maintaining autonomy. They can help you continue to perform your daily tasks and activities in a safe, adapted environment.
For example, occupational therapists can suggest adaptations to your environment (ex. reorganizing furniture to make it easier to get around), show you different ways to facilitate difficult tasks (e.g. getting out of the shower, using utensils), advise you on the use of equipment to simplify everyday tasks and give you advice on issues such as driving and access to transportation.
You can find occupational therapists specialized in Parkinson’s in the multidisciplinary teams of movement disorder clinics, CLSCs or private practices.
Who can help me during difficult times?
Seeing a psychologist can be beneficial for you and your loved ones throughout your journey with Parkinson’s disease.
Psychologists will work with you to bring about changes in attitudes, behaviours, thoughts or reactions so that you feel better and find answers to your questions.
You may benefit from several sessions with a psychologist in order to:
- Cope with your Parkinson’s disease diagnosis
- Take charge of your future if it seems uncertain
- Ease your fears related to the disease
- Improve communication and relieve tension with your loved ones
- Learn to manage, and even heal, anxiety and/or depression if these are part of your symptoms
- Assess and follow up on cognitive impairment if this is part of your symptoms
You can find psychologists specialized in Parkinson’s in multidisciplinary teams of movement disorder clinics, CLSCs or private practices.
Who can help me communicate and swallow better?
Speech therapists specialize in all aspects related to communication (articulation, voice volume, breathing, facial expressions, body language, etc.). They can also advise you if you have difficulty drinking, eating, or swallowing.
Speech therapists will be able to give you tips and techniques, and even prescribe exercises, to eat and communicate better on a daily basis.
You can find speech therapists specialized in Parkinson’s in the multidisciplinary teams of movement disorder clinics, CLSCs or private practices.
Who can help me eat better?
Nutritionists specialize in food and human nutrition. They develop nutritional treatment plans adapted to each person’s health condition.
For example, a nutritionist can help you adopt healthy eating habits and adjust your diet to make swallowing easier and reduce constipation.
You can find nutritionists specialized in Parkinson’s in the multidisciplinary teams of movement disorder clinics, CLSCs or private practices.
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