10 Things Your Doctor Won't Tell You About Parkinson's

If you or a loved one has recently been diagnosed with Parkinson's disease, knowing these ten things may make dealing with Parkinson's disease easier for you. Here are ten things that patients who have had Parkinson's for several years wish they had been told when they were diagnosed, yet doctors didn't.

In the United States, about 60,000 people each year learn they have Parkinson's disease, according to the Parkinson's Association of America. It is a degenerative disease caused by changes in the central nervous system that disrupt movement, balance, and other problems.

If you or a loved one has recently been diagnosed with Parkinson's disease, knowing these ten things may make dealing with Parkinson's disease easier for you. Here are 10 things that patients with Parkinson's for years wish they had been told when they were diagnosed, yet doctors didn't tell them

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1. The side effects of Parkinson's drugs may be more serious than the symptoms of the disease itself.

With Parkinson's disease, the synthesis of dopamine in the brain decreases, which affects movement. Taking Xinningmei or Rytary (both are a combination of methyldopa and levodopa) is the basic drug for the treatment of Parkinson's, to supplement dopamine, relieve muscle stiffness, resting tremors, and other typical symptoms of Parkinson's. Many patients use various medications to relieve various symptoms that may occur. Whenever you add a new drug to your doctor's prescription, make sure you understand its possible side effects.

Marilyn Garateix, executive director of a nonprofit in Miami and a freelance journalist who was diagnosed with Parkinson's at age 42, said: "The adverse effects of drugs can be as serious as Parkinson's symptoms," because of " Severe insomnia", she developed sleep disturbance.

Garateix said that because she took more than one drug, it was difficult for her to determine which drug was responsible for her insomnia. So Garateix asked the doctor to adjust the medication and learned some good sleep habits to improve insomnia.

In addition to insomnia, patients taking carbidopa and levodopa may also experience adverse reactions: convulsions, or uncontrolled repetitive movements of body parts such as arms, legs, and face. A small number of patients experience pain, urinary problems, and loss of appetite. Dopamine agonists such as pilonidal, and pramipexole also have potential adverse effects - compulsive behaviors such as gambling, hypersexuality, excessive consumption, etc. The patient stated that these adverse reactions should be informed to the drug users in a timely manner.

2. Determining the optimal Parkinson's treatment regimen may take some time.

Although the levodopa-carbidopa combination is the most commonly prescribed drug, many drugs that act on other mechanisms can also be used to treat Parkinson's disease, according to the Cleveland Clinic. Terri Reinhart, a 58-year-old retired kindergarten teacher who blogged about her "Parkinson's journey," said: "Finding an optimal treatment can take a while." Terri Reinhart 2007 was Diagnosed with Parkinson's, for her, "the first five years were a little dizzy." One of the drugs she was on caused breathing problems, and another caused him severe insomnia.

However, with the help of the doctor, she finally found a suitable combination of medicines for her. Problem solved, and patience was essential along the way—she knew it would take time to find a treatment that worked for her. "Understanding the process is necessary," she said, adding that she would like to learn more about how the drug works.

3. Not all neurologists are good at treating Parkinson's disease.

"Neurologists often encounter Parkinson's patients, but not all neurologists specialize in Parkinson's," Bev Ribaudo said. Bev Ribaudo, a 56-year-old retiree from Arizona, was diagnosed with Parkinson's at the age of 47. She recommends that neurologists also consider acquiring expertise in movement disorders as well.

A specialist in the treatment of movement disorders is a neurologist who is not only good at treating 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 Parkinson's symptoms and treatments.

4. Exercise plays a vital role in maintaining the quality of life of Parkinson's patients.

"Many doctors don't tell their patients to exercise," says Larry Kahn. He's a 55-year-old tax attorney in Atlanta who was diagnosed with Parkinson's in late 2010. "I've seen three doctors, and none of them told me I should get intense physical activity," he said. Kahn joined a Parkinson's support group, and members of the group suggested that he do high-intensity exercise to improve Parkinson's symptoms, which helped a huge effect. "I increased the intensity of exercise, and I felt a great improvement in my mental state," he said, adding that the combination of medication and physical exercise has brought his condition under better control.

5. It is important to find a suitable support group for Parkinson's patients.

Garateix's doctors advised her to join a suitable support group. She was only 42 when she was diagnosed with Parkinson's and it took her a while to find a support group that suited her. She recalled that many people developed Parkinson's after the age of 60, and in one group, the main concern of members was how to easily pick up their grandchildren or granddaughters. She doesn't want to unfollow, but it really doesn't have much to do with her.

"Now, I've joined a group of women with Parkinson's who are my age, and it's been a very different situation," she said. Group members understood her problems, such as her concerns about cancer, and those older Some retired patients do not have such worries.

6. Physical therapy may help relieve Parkinson's symptoms.

"Many physicians only use physical therapy for patients who have already been injured," says Kahn, an advocate of physical activity. But he thinks a suitable physical therapist can help develop an exercise regimen and monitor symptoms.

7. In the long run, informing family and friends about Parkinson's condition is more helpful for treatment.

"I hid my diagnosis from my parents for a whole year," Garateix said. "I didn't want to be a burden on the family." She also values personal independence. But as she and others have learned, giving family and friends a thorough understanding of your condition can prepare them to reach out in the future when you do need help.

8. The doctor will tell your family and friends the truth about your situation.

"I think it's necessary for the doctor to have a meeting with your family, and the doctor will tell your family what is going on.

9. Not all Parkinson’s symptoms are neurological.

Parkinson's is not just resting tremors or muscle stiffness, it affects all parts of the body. There are also a number of non-motor symptoms, including difficulty, speaking and swallowing, constipation, and mood and sleep problems, according to the Michael J. Fox Foundation.

10. Accept your Parkinson's diagnosis and live a better life.

Embrace your physical condition by learning about Parkinson's and how to live better with these symptoms. Self-education has many benefits. "This will allow you and your caring partner to be proactive about your situation." This includes learning about symptoms, discussing changes and medications, and talking to your doctor when in doubt. "

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