It has occurred to me that there are so many “experts” about Parkinson’s disease who don’t live with Parkinson’s on a daily basis. Why is there a deficit in recognizing that those living with Parkinson’s can be just as knowledgeable as those who study it? It’s a question that might sting a little, but who are the experts on living with Parkinson’s?
It’s wonderful to hear from psychologists, neurologists, and researchers, but overall, when the dust settles and the conferences end, who would you rather hear from? Who knows more about how to express their work of art, the artist or the critic? I think most of us would agree that the artist knows what they want to express while the critic is merely the interpreter who conveys their own perspective.
The newly diagnosed person with Parkinson’s and the one in denial are not yet experts, but that doesn’t mean that they can’t once be one. I don’t claim to be an expert but longevity with illness provides lessons whether you ask for them or not.
Join me, Karl Robb and my guest host, Angela Robb, as we answer questions and discuss issues impacting Parkinson’s disease(PD) patients, caregivers/care-partners, and those who want more information about living well with PD. Thanks to Robert Rodgers (www.parkinsonsrecovery.com) for the chance to guest host. Feel free to submit a question before the web show by logging into the web link and password below or phone your questions in live with the provided information and code below, on the day of the show (Sunday, December 9, 2012 at 5:00 PM Eastern Standard or 2:00 PM Pacific)
See the online and phone information below for show details:
Online Event password: karl2012
Primary dial in number: (206) 402-0100
Secondary dial in number: (323) 476-3672
Dial in password: 200414#
We live in a world of faster is better: food-service, information and news, data/technology, and most everything else. In a society expecting speed and instant gratification, someone with Parkinson’s disease (PD) or any neurological disorder is at a distinct disadvantage. When time is considered money and faster is better, the individual with PD suffers because he or she may lack the ability to move into fifth gear. What the person with PD does receive is the opportunity and challenge of learning true patience and the ability to learn to live in the moment.
Part of living with PD is the act of acceptance. This does not mean that you don’t continue to seek bettering yourself and finding therapies, but it means accepting that you are different and finding comfort in your own skin. Finding the balance in one’s life is a constant challenge. When illness is involved, if not put into perspective, can compound the stress and anxiety of basic daily living.
Coming to grips with your illness may take time and effort. In many cases it may seem impossible, but it isn’t. Seek out the part of you that is able to navigate the inner workings of your mind, body, and soul (spirit) to realize that this is a challenge, but one that you can meet. We are stronger and more capable than we know. Adversity can bring out the very best in us and release strengths that we forgot we ever had. Part of accepting an illness is keeping up the necessary search for relief and bettering oneself through proper nutrition, exercise, medical care, good drug management, and willingness to explore non-invasive complimentary therapies that may potentially improve one’s condition. An open and flexible mind may serve you well in seeking answers and solutions concerning your condition.
Support groups are just a place for people to commiserate and belly ache, or at least that was what I thought they were. I had attended a group for a year or so, but inconsistently, for that very reason. I was finding that meeting with the group was having the opposite effect of what I had hoped to achieve. My intention for going to these groups was to learn, to be inspired, and to come away with a better strategy of how I might live my life with Parkinson’s Disease. Rarely, did I get that satisfaction. I don’t blame the leader or the group, the meeting just wasn’t ran that way and the patients in the group weren’t in a place for my type of meeting.
Some support groups are instant successes and others may take delicate pruning. The support group is an ever evolving entity as it rotates new as well as older members. I have seen Parkinson’s Disease support group members range from the ages of 25 to 75 years of age. A support group binds everyone in that meeting for one unified purpose that transcends all cultural or social labels. Rich or poor, famous or not, each of us is there to learn, share, educate, laugh, strategize, congregate, and gain a new perspective.
My vision for a support group came from what I selfishly needed. I wanted to develop a safe and welcoming environment where the group felt comfortable to be at ease enough for 2 hours to be themselves. I saw this support group as an opportunity to develop true meaningful dialogue between patients and even carepartners. I take great joy and no credit for the amazing transitions that I continuously see in members. Once quiet members who kept to themselves or who had little or nothing to say, now take the initiative to embrace new members in need and are always willing to add thoughtful and meaningful commentary. Watching the group grow and take shape has been a labor of love.
I must admit, I think the group is 8 years old but it could be slightly older. On the evening of our inaugural meeting, my wife, Angela, and I had no idea how many people to expect. It was a cold damp March night and I was sure no one would come. Much to my amazement, one couple showed up and I am so proud to say that they are our dearest of friends and remain in our support group after all this time.