Welcome to Parkinson's

By Barbara Glass

There are many diagnoses that are difficult to accept, and Parkinson’s disease is one of these. It is a progressive nervous system disorder that affects movement. Although the symptoms vary by individual, it means a gradual loss of control over one’s muscles and physicality, in one way or another.

The good news is the majority of symptoms can be managed and an excellent quality of life maintained.  Much of the treatment success, however, is up to the individual.

I’ve known many individuals affected by this disease, and here are a few suggestions for those recently diagnosed:

Be real about the diagnosis. Find out everything possible about symptoms, treatment options, life experiences and resources within the community. It is imperative the reality of the diagnosis is clear to you and that facing its challenges head-on becomes your highest priority.

As with life in general, how one “feels” about a situation will dictate how one responds. This is a matter of individual choice. You may choose to find the ‘positives’ in any situation or the ‘negatives.’ If you focus on what you need to do and what you are able to do – and not what you cannot do – then you will always be facing forward. A positive attitude will enable you to withstand the inconveniences and potential set-backs.

Assemble a good team of physicians who understand your condition and with whom you can communicate clearly and honestly. This will take time to accomplish because you don’t always get it right on the first visit. Get a second, or even third or fourth opinion if you’re not pleased with how the physician is communicating.  You will need an internal medicine doctor, and more importantly, a neurologist who specializes in movement disorders.

Your medical team should include a dentist and any specialists attending to other healthcare needs you might have. Make sure your team of physicians each receive copies of whatever test results or information they will need to assess your condition. Although they may work in different offices, they are all part of your care team.

Keep a record of your visits and test results and take it with you each time you visit a physician. This book or file should be kept as up to date as possible, including a current list of medications. Keep a journal on how your body responds to particular foods, caffeine and medication changes.

Prepare for the stress of travel. When you travel, ask your neurologist to prepare a “to whom it may concern” letter in case you’re delayed en route. Symptoms of Parkinson’s disease can be misunderstood by law enforcement officials and the general public. Be sure to pack extra medication and carry a list of the medications you take.

Pay attention to your body and be kind to yourself. Factors such as getting enough sleep, exercising and reducing stress are very important. It is crowds, hustle-bustle and not getting sufficient rest that will trigger symptoms, such as dyskinesia, at a random time. Each person’s body is unique in determining what kinds and amounts of certain foods affect medication: learn yours and pay attention to it (a good use for the journal – “how is this change of medication affecting me?”).

Create a daily regimen. If ever there was a condition that depends on a clock, it’s Parkinson’s disease.  Once you learn the cycle of medications, you will know almost exactly when to take the next dose.  Establish an exercise pattern, including time for rest and relaxation.

Alternative practices help reduce stress. For example, meditation is very helpful, and it does take practice to meditate effectively. Work at this daily and it will be there when you especially need it.

Besides caring for yourself, be kind to your caregivers, spouse and friends. Rid yourself of the negative people in your life and find more supportive ones. Sometimes these loved ones need a little time to comprehend your condition. Once they are past the initial understanding, they will stick with you. If you are positive, they will be as well.

If you can’t find a support group, create your own. Regardless of onset age or disease progression, it is helpful to share experiences with others in the same boat. Giving a helping hand to those experiencing a period of depression is a good way to lift yourself up.

Barbara Glass is a blogger for the Dallas-based company Cariloop, which provides comprehensive, team-based support services that help families plan for and manage the care of aging loved ones. For more information, visit www.cariloop.com.