The Downside of Silence After a Parkinson’s Diagnosis

We learned yesterday that Robin Williams was in the early stages of Parkinson’s disease when he died.  This information has led to much speculation about whether his diagnosis or depression associated with the disease itself contributed to his suicide.  We will likely never know if there was a link, but the proximity of events does raise the question as to whether newly diagnosed patients, their family and friends know enough about living with PD to quell their worst fears.

Often PD is referred to in the press as a “devastating, debilitating illness” which, as a PD patient, I’ve always found annoying.  It gives the impression to newly diagnosed patients that they’re about to embark on a horrible, consistent downhill journey on route to death.  And that’s simply not the case.

CNN reported that Williams’ concern about being unable to exercise and cycle with PD, two means of coping with depression, made him extremely upset.

Actually, exercise is an important means of reducing the symptoms of Parkinson’s disease, including cycling.  Not knowing this and other important information about advances in PD research and treatments perpetuates erroneous and potentially harmful myths about the disease.

There’s an embarrassment factor to PD, which partially explains why many patients choose to keep a new diagnosis close to the vest.  Soon enough, they reason, people will notice tremors, slowness, rigidity, facial masking, and other signs and so they buy some time with silence.

Additionally, things once done easily can become difficult – even participating in conversations or being quick-witted on social occasions.  Again, pulling in can occur. For someone whose career calls for quick thinking, the cognitive slowing experienced by many patients, even early on in the disease, can be upsetting.

While totally understandable, the downside of self-imposed silence is that helpful, accurate information isn’t obtained from experts and others with PD when it might do the most good – early on in the disease.  Outmoded perceptions of the disease are accepted as reality.  Fear of symptoms, being a burden, upsetting children, and being unable to do things that have defined you for years naturally occurs. 

The truth is that many symptoms can be managed and even diminished by exercise, speech therapy, creative activities, enjoyment, social support, and an excellent medical care. 

A diagnosis of Parkinson’s disease is not a walk in the park.  It is also a different experience for each patient.  The more people with PD talk to each other and their physicians, the more we all learn and share, the less likely we are to create or foster fear where optimism rightly belongs.

photo:  Featureflash/Shutterstock.com