PatientsLikeMe ™

I am a 61 y/o wife (married 40 years) and mother (38 y/o son) and have had symptoms (first sign-tremor of right pinkie) since 9/2000.  My first trip to a neurologist ended with a "diagnosis" of "you are 99% perfect".  I knew better, having watched my mother with Parkinson's disease.  Then in May of 2004 I was formally diagnosed with PD by the neurologist I was working with as a medical assistant.  Getting on medication improved my life tremendously, but we worked many months refining the dose of L-dopa to one I could tolerate, but that would help my symptoms adequately.  Now, after more than 4 years and 3 neurologists, I have a medication regimen that allows me to work without disabling me with nausea. 

A former dancer/performer {see my photo--I taught & performed Middle Eastern Dance (belly dancing) for almost 25 years} I am no longer the person I once was.  I have lost all my grace; tripping, though rarely falling, I am careful when & where I walk.  I hold onto anything I can to steady myself.  Quick and efficient, indefatiguable & fearless in my youth, I am now slow as a turtle, clumsy as an elephant, inefficient, easily exhausted, and afraid of trying new things or going out in public where I don't know my surroundings.  I am also aware that I have that PD stare in my eyes that I can not do anything about.  No matter how I try to blink or squint or relax my eyelids, I will always have that "look".

About the same time I started to notice the first tremor of PD I began to study Reiki, an alternative healing modality that involves a very light touch, creating deep relaxation that can be helpful in healing.  I now practice and teach Reiki, and I am currently participating, as a practitioner,  in a research study at a local university on the efficacy of Reiki used in people over age 60 who are suffering from pain, anxiety and depression.  I also participate in another study on learning in patients with neurological disorders such as Parkinson's or Huntington's, this time as a subject.  Both of these studies help give me the feeling that I am contributing something of value to the problem of Parkinson's disease. 

I also have recently started a new hobby-photography-that is keeping me busy and helps fulfill my need for creativity.  I started with macro shots of flowers and I used these photos to make note cards which I sold at craft fairs and gave as gifts to friends.  I even entered 2 of my photos in a photography contest.  I did not win any prize, but I received many compliments on my work.  I have now branched out to scenic shots.  Who knows where I might go next?

I still work 25 to 30 hours a week as a medical assistant in a busy medical practice (in the neurology dept with my current neurologist, no less!), I have hobbies of great interest to me, I have family that I spend time with.  It is a good life in spite of the PD.