Why not us?

The second week in October I am going to go the AdvaMed Conference in Anaheim for Abbott. I will be interviewed by a doctor in regards to Parkinson’s patients advocating for themselves to their MDS or Neurologist. While I am extremely excited about this opportunity, it really got me wondering why more of these conferences don’t have us speaking at these types of medical conferences.

Sure these conferences are geared toward the doctors and so on that treat people living with Parkinson’s disease. I understand that aspect of things. They get the opportunity to learn and hear what treatments are coming out and what new technology is on the horizon that may help people us. I am sure they share about treatments that other doctors are trying or have experimented with and those results. I love that all that happens – sharing of information from doctors to doctors or medical companies to doctors. This is all so vital and necessary in order for doctors and medical device companies to continue finding ways to treat people with Parkinson’s Disease or whatever other incurable disease these doctors are treating and focused on.

I have not attended this type of conference before. That is one of the many reasons I am looking forward to attending this conference, to see what it’s all about. I have been to a few conferences FOR people with Parkinson’s and those are always tremendous. I have been able to speak to different groups within Abbott (my DBS manufacturer) and that has been very fulfilling. I have been able to share my story with people considering DBS through Abbott’s Ambassador Program as well as to some support groups and of course, here on my blog and my YouTube channel. I still hope this Blog and my YouTube channel will gain more traction, but then again maybe my brutal honesty about living with disease isn’t for everyone. I will continue being me.

Sorry for getting off track. The point of this blog entry is this, Why are WE as patients, living every damn day with Parkinson’s Disease, not speaking or invited to speak at these conferences? After all, we are the ones significantly impacted by the various treatments that these Doctors are prescribing. We are the ones that know what we are living with and how it is impacting our daily lives. That is why I am so excited to be interviewed at this conference, by a doctor , in front of other doctors.

This needs to happen more often, in my opinion. This needs to happen at the World Parkinson’s Conference and other Medical Conferences that are typically just for doctors and Medical Device manufacturers and so on. Sure, they understand the science of the disease and the inner workings of our brains and all the medical information that is out there for them. However, they don’t know what it’s like living with Parkinson’s on a daily basis. They can only know so far as we tell them. Some Neurologists and MDS’s are great at truly listening and others are not. I know this from personal experience and from listening to stories from other PWP’s in regards to their experiences with various doctors.

There should be room at the table for us as patients at so many more of these conferences. Where groups of Neurologists and MDS’s get to hear from us as patients in a setting where they should be listening to us. They get to hear a different perspective from other patients they aren’t treating.

I hope I get more opportunities like this one coming up in October. I hope I can do well enough to open the doors for more opportunities like this, to get in front of a large group of doctors and have them truly hear me. I am not saying I can speak for all of us but if I get another opportunity where I can just speak directly to doctors, then you can be damn sure I will give it all I can.

After all, Why not us?

Peace and Love,

~Darryn