Parkinson’s disease has a multitude of symptoms, both motor and non-motor in nature. It affects the emotional, physical, mental and social aspects of the lives of those that face the challenge of this illness. And dealing with any of the symptoms requires a multifaceted approach. The following is a general framework that may be helpful for patients to follow, one that if implemented, will allow you to optimize your life with Parkinson’s.
(1) Communicate with your physician. Currently there is no objective measure for Parkinson’s disease unlike other conditions such as high blood pressure or diabetes. Therefore your physician relies on the information that you give them regarding your symptoms and side effects. Based on your narrative, examination and symptom diary (always a good idea to write things down), decisions regarding your management are made.
(2) Build your support team. Patients with PD benefit the most when surrounded by a network of professionals that are working to optimize your condition. The actual players on the team will depend on your most bothersome issues and they will also vary during the course of your disease. For example a physiotherapist, occupational or massage therapist may be invaluable when dealing with pain. And in the case of mood problems, a counselor or psychologist may be an important member of your management team.
(3) Educate yourself about the disease.A medical degree is not a prerequisite to becoming an informed patient. Becoming knowledgeable allows you to take a more active role in disease management and that translates into better outcome. Patient education can have a positive impact on patient satisfaction, health-related quality of life and mood, adherence to treatment plans, disease self-management skills and overall improved medical outcomes. If there is not enough time within the context of the clinical encounter, then reliable and informative community or online resources serve an important role.
(4) Reduce stress. Dealing with a chronic illness that challenges you daily is stressful. And stress worsens the symptoms and is associated with poor quality of life. Therefore it is important to try and reduce external stressors and learn reflective and meditative practices that are aimed at relaxing your mind, body and breathing.
(5) Connect with others. Due to the pervasiveness of this disease, Parkinson’s can be very isolating which can lead to a loss of a potential support system – both physical and emotional. Be it family, friends or the anonymity of an online support group, reach out to others for both support and the distraction that social interaction brings.
(6) Physical modalitiesthat are helpful are diverse and dependent on which symptoms are being addressed. In the case of pain secondary to muscle spasm, heat packs and a foam roller may be helpful. While in the case of foot dystonia, a stiff pair of shoes may be what’s needed.
(7) Pacing is important. Take a break before you need it throughout the day. Taking regular breaks in activities, changing positions, resting briefly between activities or doing stretches throughout the day can all help.
(8) Prioritize and plan your day. This is important for anyone to do but if your energy level or physical stamina is somewhat limited as can occur in Parkinson’s, then prioritization becomes particularly important.
(9) Shift your focus. Start to fill your conscious awareness with other more enjoyable things to focus on. This helps to move your focus away from your symptoms and concerns.
(10) Improve your sleep. Sleep is restorative and lack of adequate rest tends to aggravate the symptoms of Parkinson’s. Unfortunately estimates are that 2/3 of Parkinson’s patients suffer from sleep disorders. Following a strict and consistent bedtime routine is vital.
(11) Daily exercise and diet. Managing your daily diet and exercise is imperative in helping you to navigate the inevitable challenges this disease brings. Maintain a healthy lifestyle and remain active incorporating cardiovascular exercise, strength training and stretching into your weekly routine.
Any of these interventions require fundamental motivation and interest - but with that motivation comes improved life experience. It is important to take back some measure of control in what seems like an uncontrollable situation – to find solutions – physical, mental and emotional that will allow you to live well with this challenge.