Parkinson’s disease is a disorder of the brain that affects body movement. It results in uncontrolled movements, the inability to show facial expressions and/or a shuffling gait. Parkinson’s is a progressive disease and the symptoms continue to get worse over time. As a caregiver of someone with Parkinson’s, it is important to know the different stages of the disease so that you can prepare for them and have plans in place for appropriate care.
In general, you will want to plan for several types of Parkinson’s care:
- Clinical care with a health care team that specializes in Parkinson’s disease.
- Individual counseling for your loved one so that he or she can learn to cope with the disease and its effects.
- Follow-up care that is in place for the long-term and that provides a continuum of coordinated care.
- Family support and information that will help caregivers care for the Parkinson’s patient appropriately and that helps families to understand the disease.
There are three stages of Parkinson’s disease
Early Stage: This stage of the disease responds well to medication. The clinical team should develop a custom treatment plan that meets the exact needs of your loved one.
In this stage, you will have to make a few lifestyle changes and make sure that your loved one takes medication exactly as prescribed. In the early stages of the disease exercise is an important part of the treatment plan. You will want to support your loved one and make it possible for them to pursue an appropriate exercise regimen every day. Your loved one will still be able to engage in activities of daily living like bathing, personal grooming, cooking etc.
Middle Stage: In this stage of the disease medications may not be as effective. In general, medications do not work as well as the Parkinson’s progresses. The clinical care team will have to adjust medications and their dosage to fit the needs of your loved one.
As a caregiver, you will need to familiarize yourself with things like dopamine replacement therapy, something that improves Parkinson’s patients’ quality of life. You will also need to know about botulinum toxin injections that help to control symptoms. Some physicians may recommend surgical implantation of an electrical stimulation device that helps to control the body movements caused by the disease.
Educating yourself about the range of treatments that are available to treat Parkinson’s is important. The more you know and the more knowledgeable you are about the disease, the more you will be able to ask the right questions of health care providers and seek the best care for your loved one.
Late Stage: This is the most difficult stage of Parkinson’s disease. For some patients, medications may work in unpredictable ways. For others, medications become ineffective altogether. In addition to the obvious motor symptoms of Parkinson’s, patients may develop what are called non-motor symptoms. These can include:
- Dementia or hallucinations
- Disabling constipation and urinary problems
- Sexual problems
- Insomnia and pain
As a caregiver of someone with Parkinson’s disease, it is important that you find support and help. Knowledge is your friend and will help you to feel as though you have some degree of control over your caregiving duties. Ask many questions of the care team and ask them to give you additional resources for support and the care of your loved one. As the old adage says “The squeaky wheel gets the grease” and nowhere is that truer than when advocating for the care of a loved one.