Not only is there still much to be learned about this extremely complex disease, as I mentioned in my article “What is wrong with me?” But, despite all the advances in the field there continues to be a great deal of speculation regarding life with Parkinson’s after the diagnosis. Today, I am exposing some of the truths you wish you had been told:

      1. It is difficult to maintain a traditional job once diagnosed with PD.

I realized that the old way of doing things was no longer going to work. This meant that my traditional job as a doctor was no longer going to fly simply because the level of mental acuity required would consume my dopamine stores faster than I could replenish them. Since it is difficult to maintain employment once diagnosed consider options such as a different venue/vocational rehabilitation. PD patients have been shown to perform well in creative roles, and doing repetitive tasks. Perhaps the new job lies in the use of the new found talent such as being an artist, photographer, writer.  But, most importantly need to start financial planning, including disability documentation if young onset and execution of will for long term care.

       2. It truly takes a village to care for a Parkinson’s patient.

Since Parkinson’s affects all of our insides, feelings and all, as well as our outside; living with PD while raising children, having a family, running a household, holding a job, and maintaining personal and interpersonal relationships is extremely difficult. Especially, as disease progresses you simply cannot go at it alone! You need others to help pick up the slack. Part of this network of support should include close friends, relatives, social workers, and PD support groups. Spread the wealth if you will with those willing to help out to avoid burn out in those closest to you like spouses.

     3. Prevention rather than reaction to symptoms is the key for a better quality of life with PD.

Intuitively, I surmised from treating my patients that indeed “an ounce of prevention is worth a pound of cure.” Yet, it took me a few years of living with PD myself before I fully comprehended the full ramifications of a proactive treatment for PD. As in the treatment of cancer patients, we first want the remaining dopamine cells to work more efficiently, and keep other cells from dying off. Hence, a cocktail of medicines works best. This treatment is maximized with constant surveillance for signs of new symptoms before problems arise. This requires a team of multidisciplinary experts including PT, OT, and ST. Remember the brain function’s like a see-saw, if you add too much of one thing on one side you are bound to get off kilter and go flying up in the air unwillingly and bounce back when that substance starts to wane.

WHAT are the things you WISH you had KNOWN in advance about living with PD?

Feel free to share.