“My Doctor Says I Have Parkinson’s! Now What?” Q&A For The Newly Diagnosed: Part 1

For those of us that have been dealing with the diagnosis of Parkinson’s (PD) for awhile now, there is little doubt that we call all remember that day when we were officially diagnosed. There was confusion, grief, and in some cases maybe even some relief at finally getting a name to go along with all the things we felt. Time and time again, people have shared their experience of hearing those words PD, being given some medication, and told to come back in 6 weeks. NO information! NO support! Just a very long ride home to be left with a thousand questions running through our head. For those of you that are newly diagnosed, and experiencing some of this, we felt that an article to assist you answer some of those questions might be beneficial. While not all questions are covered, it is a start.

I have what?

Parkinson’s disease is a neurodegenerative illness that is caused by the depletion of the cells that produce the neurotransmitter, dopamine. In plain English; you have a movement disorder condition that is caused by not having enough of the chemical dopamine. Dopamine is responsible for helping nerve impulses travel over the nerves, as well as working with other chemicals in relationship to moods.

What is happening to my body?

Probably one of the first signs that sent you to see a doctor is a tremor. The tremor usually starts in one extremity and will stay on one side of your body for quite awhile. While tremor is OFTEN present it is not ALWAYS present. Other issues involve: Balance issues, fatigue, rigidity of muscles, slowness of movements, and speech issues. There are non-motor issues of Parkinson’s I wish I had known were actually connected. Depression, constipation, loss of smell, apathy, restless legs, muscle stiffness are just some of the “invisible” symptoms of PD.

What can be done to help?

Initially, your neurologist may prescribe medications to help the dopamine that you are still producing. These are called AGONISTS. Other medications can assist with strengthening nerves, protecting the dopamine you have, and easing some of the symptoms you have. At some point, your neurologist may recommend Sinemet (levodopa/carbidopa). Sinemet is synthetic dopamine. Currently, there are many new drugs that are also helping with some of the other symptoms of PD, and the race to find a cure brings us hope for the near future.

As the journey progresses, surgical options include Deep Brain Stimulation surgery, a dopamine pump for continuous dopamine and continuous subcutaneous apomorphine, which is an agonist.

What else can I do to help myself?

There are many activities that have been found to help fight against the symptoms of PD if not slow the progression down all together. Exercise and keeping active is the number one key to fighting this illness. Boxing for PD is very popular these days, biking, walking, Tai Chi, yoga, aquatic exercises, and anything else that keeps you moving. Other treatments might include physical therapy, occupational therapy, art therapy, dance, acupressure, and vitamin therapy.

How do I find the right doctor?

You will probably be referred to a neurologist by your primary doctor. It is important that your neurologist is knowledgeable in young onset Parkinson’s disease. It is also important that you like your neurologist and feel you can have a long term relationship with him/her. A movement disorder specialist (MDS) is a neurologist that specializes in movement disorders like PD. If there is one nearby, they would be the best to see. You can use the link in this article to find an MDS near you: Finding a Movement Disorder Specialist in Your Area.

Stay tuned for part 2 of “My Doctor Says I Have Parkinson’s! Now What?” Q&A For The Newly Diagnosed!

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