Like most family members who have a loved one who is living with Parkinson’s, our hearts sank when we learned the late Robin Williams, who had taken his life, had been recently diagnosed with the disease.

As a side note to Anne Knuth’s letter to the editor that appeared in The Herald Palladium on Aug. 19, while it is true Parkinson’s should not be viewed as a life sentence, if not treated properly and by a neurologist, who not only treats but specializes in the disease, it can be a nightmare for the person involved and their family.

Being a pro-active participant in one’s own health care is essential.  When a physician prescribes mind-altering drugs and advises you to report any side effects, and you do so only to be ignored for nearly six months, realize it’s time to find a new doctor.

When you then visit an emergency room and are sent home with a diagnosis of dehydration, only to return 24 hours later, stand firm in your decision to continue to seek help for your loved one.

Upon the second visit, when you are pulled aside by a condescending physician’s assistant in the emergency room, who holds your shoulders, looks you right in the eyes and tells you, “You may not want to hear this, but Parkinson’s is a degenerative disease and what you’re seeing is the progression of that disease,” stand firm in your belief that something else may be happening to your loved one.  Parkinson’s does not progress in 48 hours.

Most medications used for Parkinson’s are mind-altering drugs, which have numerous side effects.  The more drugs you are given, the greater chance your entire body and mental state will be affected.  Drug toxicity can and did occur, which led to our two, back-to-back emergency room visits, and the two-week hospitalization and rehab that followed.

The emergency room physician’s assistant, who eagerly dismissed the case as the progression of Parkinson’s disease, was alarmingly wrong.  The neurologist, who dismissed our concern over the use of certain drugs and instead labeled the six months of hallucinations and acting out as the onset of dementia, was alarmingly wrong.

While Parkinson’s is a degenerative disease with no cure in sight, people can live with it, if given the correct means to do so.  If your physician has become complacent in their approach to medicine or to your care, find a neurologist who actually hears your concerns.  If driving to a larger university hospital is the answer, do it.

After detox, our life has returned to a manageable baseline.  The hallucinations are gone.  The acting out has stopped.  The zombie-like behavior has ended.  What we can’t change is the six months of being over drugged by a physician that nearly ruined our lives.

On a related note, for the close friends of Parkinson’s patients, we hope you realize the disease is not contagious.   We are living with Parkinson’s.  We are not dying from it.  Nor will we give it to you.  While we have good days and bad days, we are thankful for both, realizing there are a lot of good days yet to come.

 

Vickie Phillipson

Dowagiac