Finding out that you have the Parkinson's disease, a neurodegenerative disorder characterized by tremors and disturbances in speech and gait, is a bitter pill to swallow.
There is a lot to swallow, and it can be incredibly upsetting not only for the patient but also for his or her family.
But doing some research on the disease, now more than ever, there are a number of smart strategies you can adopt to help Slow down the progression of the disease, allowing you to live life to its fullest potential.
- 1. See a neurologist
- 2. Find the right treatments for you
- 3. Participate in research
- 4. Get moving and keep moving!
- 5. Manage your mood
- 6. Seeking support
- 7. Focus on your experience
1. See the neurologist
Step number one: ask your primary care physician to refer you to a neurologist, preferably one who specializes in movement disorders. Patients who work with neurologists tend to have better outcomes than those who don't, says Melita Petrossian, director of the Pacific Movement Disorders Center in Santa Monica.
But don't just take his word for it: a study published in the journal Neurology shows that patients treated by neurologists may live longer and are less likely to end up in a nursing home or break their hips.
Even if you can only go to the specialist once a year, it can still help, says Dr. Petrossian.
2. Find treatments for you
Although there is still no cure for Parkinson's, medications can often help control symptoms. Keep in mind that Parkinson's medications can produce significant side effects such as involuntary movements (dyskinesias). Also, you need to take them exactly as prescribed by your doctor to avoid side effects such as Freezing of the march.
Another precaution: keep an eye on protein and fat intake, as they may interfere with drug absorption.
If medication is not adequately effective, deep brain stimulation (DBS), which involves implanting electrodes in the brain, is another option, although riskier and not always advisable.
A noninvasive option is Gondola AMPS therapy effective in treating gait disorders, such as problems with balance, bradykinesia, and freezing of gait.
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3. Participate in research
Participating in clinical trials-particularly those seeking treatments to slow or halt disease progression-is a direct way to help find a cure for Parkinson's. Karl Dhana, senior vice president of medical affairs at MorseLife Health System in Florida, says:
“I support patients enrolling in clinical trials because there is a lot of work to be done to understand Parkinson's disease and figure out how to prevent it. We need to continue to develop new and more effective treatments for Parkinson's that will hopefully lead to a cure.”.
4. Get moving and keep moving!
Exercise is another key way to manage the Parkinson's. Physical therapist Brian Keenoy, who treats parkinsonian patients at Generation Care's rehabilitation center in Michigan says:
“All research shows that the earlier you start a Parkinson's-specific exercise program, the better your long-term quality of life.”
Several exercise programs have been specially designed for people with Parkinson's disease, including Rock Steady Boxing and Dance for PD. Dr. Keenoy says dancing is a good choice for people with this disease, as it involves conscious, purposeful movement that increases the brain-body connection.
Both dancing and Tai chi, another exercise that involves mindful movement, can also improve balance and reduce the risk of falling. In fact, Dr. Dhana states:
“When you have Parkinson's disease, you can't correct yourself when you lose your balance because the disease decreases the reflex speed needed to stabilize you.”.
He also notes that Parkinson's and its drugs lower blood pressure in patients when they stand up, sometimes leading to dizziness, which increases the risk of falling.
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5. Manage your mood
As with many illnesses, managing your mood is a key part of the rehabilitation process. Dr. Keenoy encourages his patients to do one thing every day that cheers them up and notes that depressed patients may give up their physical activity (the loss of dopamine-producing cells in people with Parkinson's also affects motivation).
In addition, depression can also exacerbate Parkinson's symptoms. As Dr. Dhana points out, “if someone is anxious and nervous, it can make the tremors worse.”.
Dr. Petrossian believes that the emotional response to Parkinson's can sometimes be more devastating than the physical symptoms.
“The biggest problem I see is that many people with Parkinson's have anxiety and depression, which goes beyond stress, and I think they need to be addressed, sometimes with cognitive behavioral therapy and sometimes with medication.”.
6. Search for support
Dr. Pertrossian continues:
“Part of the problem for someone newly diagnosed with Parkinson's disease is a sense of isolation and loss, a sense of loss of identity.”
One way to counteract isolation and adapt to living with Parkinson's is through the support of someone in the same condition as you. (You can find local support groups, including the PRESS program for newly diagnosed PD patients, on the American Parkinson's Disease Association website.)
Dr. Keenoy encourages his patients to build strong social connections, he says in fact:
“Parkinson's disease is a neurodegenerative disorder, and if you face it alone ... it can be a little daunting. You're not the first person to be diagnosed with Parkinson's disease, and so you don't have to go through it alone.’.
7. Focus on your experience
In addition to getting support, thinking positively can help you accept your diagnosis. One of Dr. Petrossian's patients has begun to see Parkinson's as a friend (she calls him “Mr. P”), while others repeat mantras such as: “I have Parkinson's disease, but Parkinson's doesn't have me.”.
Dr. Petrossian acknowledges that this approach may seem a bit trite, ’but having a mantra to recognize yourself in your struggle without belittling who you are and without emphasizing the role Parkinson's plays in your life can help you cope and become stronger.“
On the contrary, one of her patients told her that having Parkinson's disease. “will never send a ball out of bounds.”(ed. Baseball rule reference), no matter how hard you try. At that time, Dr. Petrossian, who was surprised by his “devastating way of thinking about life“, he did not know how to respond.
“How do you get up every day and practice and try to be positive every day when you constantly feel like you're in a losing battle?”.
Later, another patient gave her the answer she was looking for: if you live with Parkinson's, “you have to understand that you have to play a different game, you have to change the rules of the game.”. In other words, Dr. Petrossian says: “you have to re-invent your life.”.
For his part, Dr. Keenoy firmly believes that people living with Parkinson's can live full lives.
“I have seen people go into confusion because they have just received a very important diagnosis, but after giving them the tools, they realize that they can adjust things so that they can really enjoy their lives. I believe that 1,000 percent of people with Parkinson's can live long, fruitful, high-quality lives.”
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