Diagnosing with Compassion and Hope

 

My hackles are raised, my feathers are ruffled, my … I’m not sure I can find the words for how I am feeling. This morning, I read a recently published article called “Delivering the diagnosis of Parkinson’s disease-setting the stage with hope and compassion.” I am not upset that the article was written.  I am glad that the authors have brought this to the attention of others. I am upset that it needed to be written.  I just think it is common sense that when someone is given a life-changing diagnosis, it should be given with hope and compassion.  The authors note that some say the moment of diagnosis is “almost akin to a traumatic event such as the loss of a loved one.” Of course it is!  The person receiving the diagnosis is losing their future self.  Everything they thought their life would be from that moment on has now drastically changed! I would count that as traumatic.  

 

I was one of these people over seven years ago who walked out of the Movement Disorder Specialist’s office with a diagnosis, a prescription, an appointment for three months out and absolutely no hope.  I thought every day after that was going to be a downhill slope.  The reality, seven years later, is that Parkinson’s is tough to deal with.  Many days are hard.  Some are darn hard, but many days are great.  I am still able to function as a productive member of society.  I can still take care of myself, care for my family, and give back to my community.  Although I have had to change some of my activities, and I must work very hard at staying well, I am staying well.  I am still strong, and I look forward to my future instead of dreading it.  I wish I was told of this possibility seven years ago when I was given my diagnosis. 

 

I understand that doctors are busy and that giving a diagnosis is a routine task for them. We need to get this article into the hands of our doctors and future doctors so they understand the patient perspective.   They need to be aware of the impact of their actions when giving that diagnosis.  If they could at the very least give the diagnosis with compassion and hope, maybe their patients would have more motivation to seek out resources.  Maybe, their patients could even leave the office with information on local resources in their hand.  

 

Unfortunately, my story is not unique as attested to in the article.  Leaving the doctor’s office with a life-changing diagnosis with no hope and no resources for support was the impetus for me starting PDBuzz.com about six years ago.  This website is a resource hub with all things Parkinson’s in my county, Orange County, CA.  My hope was that if I put all the resources on one site and marketed the site to the doctors in the area, maybe they would hand their newly diagnosed patients a brochure on the way out the door, and just maybe that person would look up the site and find someone else going through the same thing and find a group or program that could help.  

 

I am proud to say that PD Buzz has helped many people get connected to resources over the past six years. It has been a labor of love, but it is a big job for a volunteer with Parkinson’s. PD Buzz is currently transitioning into an official 501c3 called Parkinson’s Orange County.   It is our hope to have a system in place to meet those newly diagnosed and walk beside them with compassion and hope for years to come.