As many of you know, I had the opportunity to go up to the Abbott headquarters in Plano, Texas this past week to discuss my Parkinson’s story and my experiences before DBS, after DBS, the surgery and my other experiences with the Abbott DBS System. We discussed my experiences with the ambassador program, as well as Abbott’s amazing Virtual Clinic through NeuroSphere Digital Clinic.
This wasn’t a large gathering like some of the other events I have been a part of. I didn’t count but there were approximately 15-20 people from the FDA there and several people from Abbott. I had the honor of being introduced and interviewed by Dr. Binith Cheeran, Head of Brain Therapies at Abbott Neuromodulation. He is also a very experienced Movement Disorder Specialist. During his introduction he stated a very interesting fact that I didn’t know; Only 10% of Parkinson’s patients see a Movement Disorder Specialist (MDS) for their Parkinson’s treatment versus a regular Neurologist here in the United States. While I knew the percentage was somewhat low, I had NO idea it was that low. Once again, another Parkinson’s stat that saddened me and made me angry. To me, it’s another failure of the Parkinson’s community to not get that education and knowledge out there to understand the difference in care that happens when you go see an MDS. I do understand that access to an MDS vs. a Neurologist isn’t readily available to so many people with Parkinson’s Disease. If you do have the opportunity to switch your care to a Movement Disorder Specialist, I implore you to do so, even if it will be 6 to 8 months to get that first appointment with them.
Sorry to get on that tangent, now back to my regularly scheduled blog entry. After a very kind introduction, Dr. Cheeran asked me when I was diagnosed and how I first heard of DBS and who did I hear about it from. I shared when I was diagnosed (4-22-2015) and told my story of hearing about DBS from Parkinson’s Patients and of course from different manufacturer representatives that would come to our support group meetings. We discussed what treatments and medication I had tried before discussing DBS with my Movement Disorder Specialist. We talked about the process of getting approved for DBS, the actual surgery itself and what the benefits of DBS were for me versus what my life was like before DBS.
One of my favorite parts of our discussion that day was talking about Abbott’s Virtual Clinic. This technology allows for me to have an appointment with my MDS, virtually through the programming app, where he can access my battery virtually and adjust my settings as needed, he can take me through all the usual Parkinson’s exams etc., all via the camera, without me having to leave my home or office. Abbott is the only DBS Manufacturer that has this technology. It has literally been a life saver a few times when I was maxed out on my adjustments and my symptoms were kicking in full force. I live 2 hours from my MDS, I cannot make that drive all the time, it also requires taking a day off from work. Now I don’t have to worry about that when I really need to see my MDS.
We also discussed the Abbott DBS Ambassador program. I love being a part of this program. This is a volunteer program (unpaid) that Abbott offers so that people that are considering Deep Brain Simulation surgery can talk to someone that has gone through it and discuss our experiences before and after DBS surgery. To be an Ambassador we go through training in regards to what we can discuss and what we can’t discuss. Ambassadors are not there to give medical advice or even sell the Abbott DBS system. We are simply there to talk about our journey with Parkinson’s disease, what led us to DBS and the benefits we got from having DBS surgery. In my opinion it is so much easier to make a decision on something like DBS when you talk with another PWP (Person with Parkinson’s). We can talk to doctors all day long but when you connect with someone that is living with the same disease and can hear their story and how their life changed, that is where the real impact is. I do discuss why I chose the Abbott system, but I also encourage everyone to please do your research and make a fully informed, educated decision, when it comes to deciding what therapies or medications you are going to choose when it comes to your Parkinson’s care.
We then had time for some questions from people with the FDA. We had one question about the Ambassador program and whether or not it was a paid position. It is not. Dr. Cheeran did explain that when I come to do things like this for Abbott that they do pay for my plane ticket, hotel, and meals. Another question focused on insurance and if they explained the out of pocket costs to me. I stated that I was fortunate to have good insurance through my employer but also added that healthcare in America sucks. My DBS surgery was just shy of $300,000. My out of pocket costs not much considering the cost of the surgery. Dr. Cheeran did state that DBS Surgeries typically range from $150,000 to close to the $300,000 range but when you look at the cost of the medications over a long period of time versus the cost of DBS Surgery, DBS is cheaper in the long run. The next question I recall, was about how do we do a better job of promoting DBS therapy and other therapies that are out there. I explained that is the exact reason I do what I do with my blog and so on. My greatest frustration, when I got diagnosed, and still is, was the lack of knowledge the general public has about Parkinson’s disease, let alone people that have Parkinson’s Disease, the minute amount of funding for Parkinson’s Research that is available from the Government (compared to other diseases). I told them that it seems like it is up to us, as a Parkinson’s community, to do our research, talk about our experiences and share our knowledge with each other. Doctors can explain to us all the technical terms, which we need to hear, but support groups and companies coming to meetings to share about their equipment or medicines. Social Media is huge also.
There were a few other questions but those were the questions that stood out to me the most. It was a tremendous experience for me and as always I am so grateful for the opportunity. I did run into one lady from the FDA in the hallway and she thanked me for sharing part of my story with them today. She stated that is was refreshing to hear from the patient perspective since they basically sit behind desks reading about medicines and therapies and so on but don’t ever get to hear from the patients. That was the best compliment I could have gotten. For so many people, we need to be made real to them, if that makes sense. They just see results of studies and trials, over and over again, but to be able to be a representative of PWP’s and make us “real” and speak about our struggles and frustrations is such an honor for me. My hope is to be able to continue to bring my story, our story, to the forefront so we can see progress and make it more personal to these companies and government agency’s.
On a final note, I am planning on getting even more active on social media. I am going to get more active here on my blog for sure. I am also planning on doing more videos on my YouTube Channel and, brace yourself, I am going to start a TikToc Channel also. That one may be a little further down the road as I am very TikToc ignorant, with the exception of watching videos. I have that down! I want to do TikToc but I want to do it right so I plan on educating myself a bit before diving into that platform also. Exciting things ahead for sure! Please be on the lookout for those things happening in the near future. Please be sure and share this and please consider subscribing. It would mean a lot to me.
Peace and Love,
~Darryn
Punk Rock Parkinson's! 