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.
I love Spring! The bright skies and the moderate temperatures make for pleasant outdoor living and wonderful photo opportunities.
A new release on the benefits of fruits and flavonoids is out and medical researchers are touting the potential benefits. As a long-term vegetarian and proponent of fruits and berries, it comes as no surprise. I am happy to see this news though. I truly believe that the lower you eat on the food chain, the healthier you’ll be. Here is the link to the new report on fruit.
The Banyan tree is a majestic and inspiring tree made up of numerous individual offshoots to form a sturdy and healthy trunk. I am in awe of these trees and inspired by their sheer beauty! Enjoy!
Parkinson’s Disease is a designer disease without any glamour or style. Unique to each owner is a brew all of its’ own. Put a room full people with this illness all together and you’ll see an array of symptoms of varying combinations but you probably won’t encounter any two exactly alike.
Parkinson’s Disease, for all the research, press, and money that has gone into this disease, frankly, has not come that far. There are medicines to stabilize patients for only so long, risky and invasive brain surgeries that may temporarily delay or reduce some symptoms, and some therapies that assist sufferers in retaining their voice and mobility, but the breakthrough that was promised 20 plus years ago when I was diagnosed has yet to come.
If each one of has such a unique case, maybe that means each of us has a unique combination of triggers that set the course for this development. If that is the case and we set the parameters either genetically and/or emotionally, it just may be within our reach to find our own cure.
As radical as it may sound, I whole-heartedly believe that our bodies, given the right information and regimens, an openness to self-discovery, and a willingness to change just may lead our bodies to healing themselves. Combined with Western medicine and Eastern therapies, a proper balance of physical and mental conditioning can, does, and will reverse or at least improve the damage of illness.
My long journey with Parkinson’s has led me down some dead-ends but I have seen successes. In my hunt for healing and therapeutic answers to improving my condition, I have seen Reiki (see posting 28) make the largest impact on this disease. Amazingly, the scientific community shies away from testing this therapy so it is conveniently discounted and dismissed.
As a Reiki practitioner and Reiki Master (in a 1 year training program), it is my belief and hope that anyone reading this posting strongly consider that an open-mind and a willingness to help yourself can lead you to the answers and assistance that you seek.
This is my journey and I wish you well on yours!
As much as the gray of Winter and the cutting chill of wind play with my mind and body, I can’t help but awe at the beauty that comes with Winter’s harshness. While I prefer a moderate climate full of sparkling sun, there is something mesmerizing about the beauty of snow and ice crystals.
As another Thanksgiving nears and I am forced to realize that this holiday differs from all the others before, because this is my first Thanksgiving without Mom. The one year anniversary of my mother’s death is coming. My mother used to say that Thanksgiving was her holiday. In her heyday, no one could prepare a feast the way she could. From the gravy and cranberry sauce to the pecan pie, Mom’s care in preparing a family smorgasbord was a loving tribute to her family and a memory that I will cherish as long as I live. It’s a memory for which I am thankful.
Though Thanksgiving’s actual historic meaning is not representative of my interpretation of the day, it is my belief that there is no more opportune time than now to express your love, gratitude, and appreciation for those people in your circle who make your life better. Giving thanks can be anything from a hug or handshake of recognition to whatever your conscience feels is a suitable way of expressing your appreciation.
Even with the world in chaos and the economy in the drink, there is much to be thankful for. In the hardest of times some individuals thrive while others merely survive which is still no small accomplishment. Maintaining a realistic yet positive perspective on one’s outlook on the future makes your life and those who you encounter more enriched and loved.
I am thankful for:
1. Living in the United States where freedom, individuality, and independence is more than an ideal but an actual reality.
2.Having a loving wife who loves me in spite of my flaws and imperfections.
3. Going to bed with little fear and waking with the same.
4. Even after having Parkinson’s disease for over 25 years, my meds still work and I am able to function.
5. My senses and the ability to use them.
6. My family, animal companions, and friends who care about me and want to make the world a better place.
7. Reiki, which has brought peace, healing, and clarity to my life.
8. Humor for reminding me that serious is relative.
9. The opportunity to live, learn, and assist.
10. The Mute button on my television remote.
What are you thankful for this year?