In Norman Cousins’ book, Anatomy of An Illness, Cousins mentions a placebo study where over eighty percent of the Parkinson’s patients showed improvement. Participants in the study were told that they were receiving a powerful new drug. The pill that they were taking was not a new drug, but the expectation of benefits was strong enough to show improvement. If Parkinson’s is degenerative, wouldn’t you think that the placebo effect wouldn’t work anymore? How is this possible?
Two years ago, after having Parkinson’s symptoms for over thirty years, I experienced twenty-four hours without showing symptoms of Parkinson’s disease. I don’t understand, and I am not so sure that the medical community can explain such an event!
If those neurons that supposedly are dormant, dead, or erased, then someone needs to explain to me how a placebo effect and a Parkinson holiday are still possible! This is a tricky illness that manifests slowly and often very secretively. Often, the first symptoms may be constipation, loss of sense of smell, shoulder or wrist pain, or neck pain.
The latest research points to the gut as being the key culprit for the beginnings of this illness but is Parkinson’s more than one illness? By all the discussions that I have had with experts (many of those living with Parkinson’s and many working in the Parkinson’s disease field), who confirm their belief that it is very likely that we may be dealing with a variety of different illnesses.
A common saying in the Parkinson’s community is that “if you’ve met someone with Parkinson’s then you’ve met someone with Parkinson’s “, meaning that everyone with Parkinson’s is unique. The uniqueness of each and every case and how different each individual deals with a variation of symptoms keeps both patients and their neurologist guessing how to countermove.
Balancing the right diet, maintaining a challenging exercise regimen, and working closely with your neurologist for the right personalized plan are vital pieces to staying on top of my Parkinson’s. We all may respond to something completely different. The key is to discover what the something is that makes that difference for you!
Rigidity in thought and body may go hand in hand. Rigidity can be many people’s main complaint when they are first diagnosed with Parkinson’s disease. Keeping active, moving, exercise, and stretching are just a few of the tools to keep in mind when your body starts to stiffen up.
As we age, it gets easier and easier to become so convinced that there is only one way to do something. When we get to this mentality that there is only one correct answer, we may be shorting ourselves of new pathways and seeking new alternatives. The sooner that we accept the way we used to do a certain task may have changed, the sooner we can create a plan to identify and try a new method. Flexibility in body, mind, and attitude are necessary when considering what it is you want to tweak with your illness. Sometimes, it may take a slight increase in medication to improve your on-time and reduce symptoms of the disease. Sometimes, thinking outside the usual structure of traditional medicine can be fruitful.
Had I not incorporated reiki, massage, meditation, qigong, yoga, exercise, and reflexology, all in to my life, I honestly don’t know where I’d be. I can tell you this, at first, I was not a believer. It took a leap of faith and necessity to get there. Had I not gone outside my comfort zone, I would never have benefited from these various therapies
For those who question the true benefits of complementary therapies, I ask this: Don’t you think that these therapies might have some merit if they’ve been around for hundreds to thousands of years? Is skepticism holding you back from trying something new? Is it time? Is it money? What holds you back from exploring new options of helping yourself?
Adding a new practice, therapy, or routine to your health regimen takes some investigation, research, and commitment. Keeping positive and remaining hopeful are beneficial in whatever you choose to try.
Depending upon your choice of therapy, it may be important to confirm with your physician, neurologist, or specialist, just to be safe. I am not a doctor! I am a Parkinson’s patient of over 30 years that can declare benefit and relief from these therapies.
This was created in May 2014, but I thought it was worthy of another appearance.
Here are some Tips for Staying Positive and Proactive:
Take care of yourself. The more you know about Parkinson’s, the better. You play the key role in your own health. Seek out therapies/modalities that work for you. Accepting your illness does not mean giving up.
Appreciate the good in every day. Focus on what you can do! Do not focus on what you can’t do! Savor and appreciate everything.
Stay flexible in all ways. A rigid pole often tends to break in the wind. A flexible pole will bend and give in the wind. Being more flexible will add a new dimension to your life.
A person with a good attitude is much easier to be around and is good for our well-being.
Being positive is a choice! When we label everything “good” or “bad”, we lose sight that we cannot savor one without the other. You cannot have the sweet without the bitter. This is life!
Explore the stressors in your daily life. Find an outlet to help you release your stress.
Procrastination, denial, fear, and apathy only delay the opportunity to begin our own self care. Don’t hesitate to ask for help when you need it.
If you don’t laugh every day, start! Laughter has all kinds of health benefits. Don’t take yourself too seriously. Don’t stop laughing!
Plan ahead for what you can and be aware and engaged. Always have a plan B, C, or more.
The best exercise or activity is the one that you like and you are willing to do. If Parkinson’s prohibits us from doing something we love, then we must find a replacement for that activity.
I hope these are helpful to you.
It isn’t often that I write a movie review.
Okay! In fact, I NEVER write movie reviews. I’m feeling nostalgic and re-connected with the past from a long-awaited 14 years. After 14 years, the sequel to The Incredibles is here! I saw it on Thursday, and it did not disappoint! I wish it hadn’t been over a decade and a half, but it was a blast!
If you loved the original, The Incredibles2 picks up right where the first left us—and that’s all you need to know about the sequel. Just know that the movie is full of action and humor. Enough said!
The geniuses at Pixar did not skimp on detail, sound, or music. This sequel is a fun house, chock full of gems including mid-century motifs of Knoll, Noguchi, Saarinen, Herman Miller furniture, clothing, cars, and architecture.
We had played hooky to go make time to see this movie, something we don’t do very often. The message here, as hidden as it may seem, you might want to:
1. Plan future events to look forward to
2. Treat yourself
3. Savor the little things
4. Avoid always being so serious
5. Laugh as much as you can
6. Work hard and play hard
7. Remember, it’s fun to act like a kid—when the time is right
Let your inner kid out, every so often and take it all in!
This was my first blog post 10 years ago–slightly updated!
When I was first diagnosed at the age of 23, I have to admit, the diagnosis of Parkinson’s Disease (PD )came as a relief. What I had convinced myself was a terminally malignant brain tumor was a chronic neurological deficiency of the neurotransmitter, Dopamine–that didn’t sound as bad. Sure, PD can be degenerative and rarely do people with PD get better, over time–but I will say I haven’t changed my medication for several years. I am lucky and fortunate that my symptoms show a slow progression.
We expect our loved ones, friends, associates, and colleagues to understand our struggle with this difficult ailment. Parkinson’s challenges us all in different ways. Rarely, if ever, do two PD patients share the exact same symptoms. Those who are healthy and untouched by PD are incapable of understanding what it is that we endure with this mysterious and troubling disease. As much as we would like for those who are close to us to understand what it is that we are going through, it just isn’t possible.
Even if we live or work with someone on a daily basis, there is only so much that we are capable of understanding about what it is that they are going through. The best that we can do for any one is to be present, understanding, compassionate, and supportive. Supportive doesn’t mean that you can’t encourage better living and reminding those who you care about to exercise, eat healthier, and to get proper rest.
I’d like to know about your experience with PD. I plan to address issues facing PD patients like doctors, resources, medicines, cooperative medicine, health ideas, what works and doesn’t , Support Groups, PD Conferences, etc.
I hope you find this interesting and helpful.
I recently joined a Rock Steady Boxing class! The class and the instructor are wonderful! If you have Parkinson’s disease and haven’t tried the Rock Steady Boxing program, I encourage you to find the nearest program in your area. The camaraderie and encouragement amongst the participants is uplifting and inspiring.
The workout is tough, lively, active, loud, motivating, and rewarding. I hate to admit it, but I am getting older. I’m rediscovering muscles that I have not used for a good while. For an hour and a half, the boxers either move through a series of exercise stations made up of quick thinking and moving games, flexibility or core exercises, many of them borrowed from yoga focusing on balance, strength, posture, and mobility. The program is flourishing, as it should. It’s novel, fresh, and effective! This program does something amazing—it makes working out fun again, for me.
Rock Steady Boxing NOVA has been an experience that I did not expect! The whole class has bonded and become a unified group. Everyone supports the other and encourages their fellow boxers. Our coach and leader, Alec, is a charismatic and inspired young man who really strives to make improvements in our class’s lives.
My first two classes, the workouts kicked my butt! I am happy to say that I can see an improvement in my strength, balance, and overall fitness. Rock Steady Boxing is a welcomed break in my day and week. I see the boxing as a moving meditation. It is a break that I look forward to, as well as seeing my boxing friends and putting on the gloves. I think this program builds your confidence as much as your body. Rock Steady Boxing is like a fast-paced support group that makes you sweat.
If you are looking for an opportunity to get a great workout, build some muscle, make some new friends, and pound some punching-bags, then I encourage you to try Rock Steady Boxing in your area to see if it’s right for you!
The Magic isn’t gone, but it is fading fast. The art of magic will never die, but it may become blurred, as new technology replaces the beauty and purity of performance magic. Live magic is just that—it’s magical. When performed correctly and the magician has done his job, the participant feels that the impossible is, possible. Some magicians embarrass or make their audience feel stupidly duped. The magician is meant to impress but not to break the bond between audience and performer. Magic is for everyone: young or old, there is a place to appreciate the grace and fluidity of sleight-of-hand. One should appreciate the trickery of the eyes and misdirection. Cleverness is worth recognition!
The sad reality is that the neighborhood magic store has rapidly gone away for good, only to be replaced by the video game. This dying art has a long history, reaching back to ancient Egypt and possibly even longer. To lose the joy that this art has sprung on so many, and for so long truly is a tragedy, indeed.
I hope that as generations and technology continue to evolve, that the creative minds of those drawn to magic can continue to update and improve upon the wonders of magic. Magic can be reinvented and re-introduced to new audiences in novel ways as materials and new innovations appear.
I have written about the benefit of video games and Parkinson’s disease, but had a deficit of articles on the benefits of performing and practicing magic. I think that aside of the many years of enjoyment of entertaining myself and an occasional audience, magic has given me numerous gifts that I will quantify:
-Magic makes you think in order and organized linear steps.
-Magic forces the performer to communicate, socialize, and be more outgoing.
-Magic helps improve eye-hand coordination and joint flexibility.
-Magic is universal. Magic is entertaining. Magic is sheer fun.
-Magic doesn’t feel like therapy, but maybe it is!
Walt Disney is quoted to have said, “It is fun to do the impossible!” Magic is about making the impossible, possible, even if it’s just for a moment.
1250 W. Belt Line Road, Richardson, Texas 75080
-Complimentary Valet Parking
-Reception to Follow Performance
or watch the LIVE stream of the concert at the Parkinson Voice Project Facebook page. For more information you can also visit: http://www.parkinsonvoiceproject.org/ShowContent.aspx?i=1834
It’s so inspirational and moving to witness over 100 unified parkinson voices as one loud harmony! You need to hear it and share the triumph of these singers as they raise their voice in song. I encourage you to listen and experience this magical presentation.
Just so you know, I am a supporter and board member of the Parkinson Voice Project and have been for over ten years.
Dyskinesia is the uncontrollable jerky movement of hands, feet, or head. Often misunderstood, dyskinesia is a side effect of the Parkinson’s disease medication. Sometimes, this side effect is embarrassing, annoying, and at times even dangerous. Besides drawing attention to you from complete body writhing, dyskinesia can be exhausting. When I experienced 1 to 2 hour episodes of dyskinesia, I would feel like I ran a marathon without ever leaving home. Small spaces, sharp edges, and anything glass or breakable was a potential hazard. Trying to hold a drink with dyskinesia is a struggle, as your hand wants to splatter everything in sight but your mind screams, “Don’t do it!”
Tremor and dyskinesia are different. Unlike tremor, dyskinesia is bigger than a rapid twitch or tremble. At times, my entire body wiggled and flailed. It still happens, but only on an infrequent basis. Dyskinesia interferes with delicate and precise movements as well as simple everyday tasks, like making a sandwich, pouring a drink, or slicing bread. Someone with dyskinesia may struggle to brush their teeth, comb their hair, or just perform normal acts of daily living. Constant care and awareness is heightened to avoid food from flying everywhere.
People who don’t know me that well, who may see a brief shake, may laughingly call it a “dance”. Calling dyskinesia a dance may be meant to lighten the severity and discomfort of the event for all involved. Dancing is by choice—dyskinesia is not. I tolerate this comment but admittedly wish that those calling dyskinesia a dance could refrain from reducing a drug interaction that affects so many, to a recreational act. Dyskinesia in public is a teachable moment! Explaining to the uninitiated that this isn’t part of the illness of Parkinson’s has been a constant challenge.
Understanding dyskinesia from the non-scientific perspective isn’t that complicated, but trying to negotiate it, reduce it, and calm it, is the hard part. Never knowing when or where it might crop up can keep you on edge. It adds more stress—not what you need! Over time, I have gotten better about finding some control with the help of meditation, yoga, breathing, and reiki.
I realize that the distinction between tremor and dyskinesia probably in the scheme of things isn’t all that crucial, but what is important is the way either symptom is accepted by the public. Educating the public and demystifying the nuances of Parkinson’s can bridge the gap and clarify just what the public should understand about symptoms and side effects related to Parkinson’s disease.