Living with Parkinson Disease
Living with Parkinson disease can be stressful. The symptoms can be frustrating. These include trembling, stiffness (rigidity), slow movements, and the loss of balance and coordination. You may feel a loss of control over your body. It can also be upsetting to know that there is currently no cure for the disease.
But it may help to know that you have some tools to better manage your symptoms and live a healthy, enjoyable life.
Eating a healthy diet and drinking plenty of water are important for everybody. But these are especially vital when you have Parkinson disease. That's because people with Parkinson are more likely to get bone breaks from falling, have constipation, or have trouble keeping a healthy weight. Staying hydrated and getting the best nutrition through fruits, vegetables, whole grains, and protein can help reduce these problems.
Stay on top of your medicine
Medicines for Parkinson disease have come a long way. Often a set of more than 1 medicine works well to replace the brain chemical dopamine that is in short supply when you have Parkinson. Some medicines improve only certain symptoms. Work with your healthcare provider to find the best mix of medicines for you. As the disease progresses, you may need to try other medicines. Never change your dose of any medicine unless you talk with your healthcare provider. Never share your medicine or use someone else's. If you have trouble paying for your medicines, let your provider and pharmacist know. They can refer you to resources that may be able to help you get medicines for less cost.
A treatment called deep brain stimulation (DBS) has been approved by the FDA. DBS seems to give relief for some people. It is done by implanting a small electrical device in the brain. This device can ease Parkinson symptoms. It may decrease the need for certain medicines.
Talk with your healthcare provider about what treatments might work best for you.
Work with an occupational therapist
An occupational therapist (OT) is a vital part of your treatment team. Working closely with an OT will help improve your quality of life. They will meet with you in your home and review your daily routine. The OT will give you methods and tools that will help you carry out your activities of daily living more effectively, even with the challenges presented by your illness.
Get daily living aids
Daily living aids can help you stay independent and safe. An OT may advise you to get:
A special chair in the tub or shower
A pump soap dispenser instead of bar soap
An electric toothbrush
An electric razor
A cordless phone that you can carry around with you
A cane, walker, rollator, or wheelchair to help you move around
Get a good night's sleep
Studies show that about 3 in 4 people with Parkinson also have sleep problems. But it's crucial to your health to get a good night's sleep. To help you get better sleep:
Don’t use caffeine or alcohol in the hours before bedtime.
Don’t exercise or watch TV right before bedtime.
Make your bedroom comfortable, dark, and cool.
Go to bed at the same time every night.
Create a relaxing bedtime routine.
If you still have sleep problems, ask your healthcare provider for a referral to a sleep specialist.
Take care of your mental health
About half of all people with Parkinson deal with some sort of mood problem at some point. This may be depression or anxiety. These mood problems can make the problems of Parkinson worse. So it's important to get treatment. This may include counseling. And it may include medicine.
Advice to caregivers
Most people with Parkinson disease need the help of 1 or more caregivers to get through the day. If you are a caregiver, it's important to learn about Parkinson disease. This will help you understand what your loved one is going through and how to best help them. Go to the healthcare appointments and OT sessions. Often, healthcare providers will have tips and advice for the caregiver. If you are the main, in-home caregiver to a close family member, make sure you care for your own physical and emotional health. This includes self-care, such as taking time away from your family member to relax and recover your energy.