Most often, I visit with people and ask them about getting involved as advocates for the PD community. As with asking people to get involved in clinical trials, the common response is that they don’t have much to offer, thus setting limits on ourselves. I beg to differ because everyone has something to offer. It is in how they approach their offer, sharing what they are interested in helping with, and following up on this is that will make them effective. The caveat that I always include is that there is no room for antagonistic behavior in the advocacy arena. Many people with PD have worked very hard through the years to establish relationships, some that have not gone far because of the “that’s the way we’ve always done it” mentality or the “we know what we’re doing” mentality. I don’t think this mentality is exclusive to the research community. I’ve seen it for many years in the education sector. There has to be mutual respect in order for change to occur. I always try to remember that if a person is in the business of providing a service or seeking new treatments and a cure for people living with PD, then there needs to be a willingness to listen to the person that lives with the disease day in and day out. If their heart is not in the right place, then I would venture to say that they are in the wrong line of business. I have made a promise on several occasions that I will spend the rest of my life, after being cured of PD, seeking meaningful employment for these people who find the cure. With thousands of diseases out there without a cure, I can get them connected. I am happy to say that the paradigm shift has started because of organizations like the World Parkinson Coalition, which is responsible for the World Parkinson Congress, that truly involve the person living with PD in ALL aspects of the process. Another example, as I’ve mentioned before, is the Parkinson’s Movement , that will play a vital role in how research is done and what research is being done as well . Parkinson’s Movement, being an independent organization, is in a position to ask the questions that most often can’t be asked by other organizations that are limited by their mission or charter.
“Remember, no one can make you feel inferior without your consent” (Eleanor Roosevelt). All in all, we are our worst enemies because, in my opinion, we have been ingrained to trust doctors, never doubt doctors, never question their expertise, etc. As a person that lives with PD every day, it is even more important to realize that we need to speak up. What we have to say is as important as any other that treats or researches this disease. Now granted that there is a wealth of knowledge out there when it comes to treating the disease, we most often defer our treatment without asking the reason behind the treatment.The unfortunate thing about being a person living with PD every day is that it is a struggle to get out and going on some days, but there are ways to make sure your voice is heard, from asking about your treatment and further, if your interest is in the research sector. A question as simple as, ‘Why do you think this is the best course of action for me?” can go a long way in building a rapport with your physician. I was in Houston this past week for my appointment with Dr. Jankovic at the Parkinson’s Disease Center and Movement Disorders Clinic. Rather than responding, “I’m doing o.k” when he asks how I’m doing, he has gotten used to me sharing from my written list of the good things that I’m experiencing and the concerns I have. It is only when I have completed sharing the items on my list that I feel comfortable in saying that I am satisfied in finishing our visit. It took me a few visits to “develop this system” because more times than not, I would find myself saying, “I forgot to ask him about… or I should have told him about…”
So, rather than setting “self-imposed” limits on ourselves, we should venture out of our comfort zone and ask the questions that concern us, educate ourselves about our disease, and be partners in our treatment, in research, or whatever other aspect of Parkinson’s Disease that you are interested in, that will make a difference.