If you were recently diagnosed with Parkinson’s Disease, you are likely going through a stream of emotions. Many people go through the five stages of grief: denial, anger, bargaining, depression, and acceptance when they hear this diagnosis. It is a tough one to hear but it is not the end of the world. Many people live long lives with Parkinson’s and although you will have to make many life-altering adjustments along the way, there are many resources available to help navigate this disease.
If you have received this diagnosis, it is important to ensure that it is coming from a reliable source. Parkinson’s is not always an easy disease to diagnose and there are some diseases that are Parkinson’s-like, but are not Parkinson’s. It is important to ask your primary care provider or neurologist how many patients with Parkinson’s or PD they have in their care. If you have any doubts, you should try to find a neurologist who specializes in diagnosing and treating this disease, called a Movement Disorders Specialist. They have about 2-3 years additional training on all Movement Disorders including Parkinson’s. Likely, though, your physician has made the right diagnosis. The most important thing is that you are getting the best care possible and that you feel good about the care you are receiving. All Parkinson’s patients will need to go on medications eventually that mimic, help produce, or maintain the chemical in the body called dopamine. Dopamine is essential for our bodies to operate effectively. In people with Parkinson’s this chemical is in short supply and it will decline as the disease progresses.
Parkinson’s is also complicated by the fact that no one person has a similar trajectory in terms of how they will progress with this disease. Some people can live well into their 70’s and 80’s and do just fine on medications. Others can be practically bedridden. This is not something anyone can predict. Also, Parkinson’s, although primarily a disease of the elderly, can be diagnosed in people in their 30’s. Michael J. Fox is a good example of someone who received an early diagnosis.
How does someone live well with this disease? Attitude is number one in helping to cope with this disease. If you have a positive attitude and are willing to keep interacting with loved ones and keep up a social life, you will do better with this disease. Social support is so important that many support groups have been set up all over the country so that people can exchange ideas and learn from experts in the field. Organizations such as the American Parkinson’s Disease Association and the National Parkinson’s Foundation are two excellent sources of information and support.
Keep doing the things you love to do, and be willing to try new things. Although people with PD often have to scale back on the number of miles they used to walk or run, they can still do a lot. What people in the field have learned is that exercise is vital to continued wellness in Parkinsons. And researchers have also learned that dance can be very effective. It’s thought that the music combined with the movement reaches a part of the brain unaffected by Parkinson’s and can be a tremendous help both physically and emotionally for the person with PD. Yoga, Thai Chi, and other alternative forms of medicine have also been quite helpful in maintaining balance and flexibility, which allows people with PD to stay active longer and do things like drive a car, garden, and other activities of daily living. Voice training and singing are also helpful because some people with PD develop hydrophonia or soft voice due to their PD.
Having a supportive partner can be essential to the wellbeing of the person with Parkinson’s. This is not something you can do much about if you don’t have that person in your life, but it is important to cultivate other people who can be there for you if you need them.
Keep yourself educated so that you can be your own best advocate. Attend educational events, sign up for newsletters, and talk to people in your support group so you can try new things that can keep you healthy and vital for as long as possible. Don’t be afraid to talk to your physician about trying new medications or activities. If you find your physician is not supportive, it’s time to find a new physician.
