Parkinson's disease is a complex neurodegenerative disease, and if you or a loved one has recently been diagnosed with Parkinson's, knowing these 8 things may make dealing with it easier. Here are 8 things that patients who have lived with Parkinson's for several years wish they had been told when they were diagnosed, but their doctors didn't tell them.
1. Symptoms Don't Stop at Tremors and Rigidity
Many people think of tremors and slow movements as the core symptoms of Parkinson's disease, but non-motor symptoms can be more challenging. Problems such as sleep disturbances, loss of smell, constipation, anxiety, and depression often precede motor symptoms and can even be a major cause of decreased quality of life.
2. Finding the Best Treatment Takes Time
Because seniors vary so much, it may take a while for your loved one to find the right treatment. During this time, he or she can manage medication side effects and try new types of therapies until they find the one that best fits their symptoms.
3. Medication may have unexpected side effects
Dopamine agonist medications commonly used to treat tremors may have serious side effects. These side effects may include insomnia, compulsive behavior, uncontrolled movements or convulsions. Dopamine agonists may trigger impulse control disorders, including compulsive shopping, gambling or binge eating. These issues may not be mentioned in the clinic, but patients and families need to pay close attention.
4. Not all neurologists specialize in Parkinson's disease
A movement disorder specialist is a neurologist who specializes in not only Parkinson's but also other movement disorders, including dystonia, chorea, muscle spasms, tremors, etc. Because these specialists tend to focus more on movement disorders, they may be more familiar with the symptoms of Parkinson's syndrome and how to treat them.
5. Exercise is important
Because Parkinson's disease affects the muscles, it is important to exercise regularly. As the disease progresses, exercise can be adjusted according to the patient's ability. For example, water aerobics can provide the same benefits as vigorous exercise without causing excessive muscle strain.
6. Deep brain stimulation isn’t for everyone
Deep brain stimulation (DBS) is an effective Parkinson’s procedure, but it’s not for everyone. People with early diagnosis and certain types of Parkinson’s may benefit more from it, while those with cognitive impairment or severe depression are at higher risk.
7. Fluctuations are common
Even with medication, Parkinson’s symptoms can fluctuate throughout the day. For example, some patients experience “off periods” when the effects of medication wear off, which requires doctors to adjust their treatment plans, but patients must proactively report these changes.
8. Social support and mental health are just as important
Other people’s opinions are crucial when it comes to finding the emotional support your loved one may need. Look for a local Parkinson’s support group (or look online if you can’t find one near you) with members who are your loved one’s age and who understand firsthand the challenges your parent faces.
