It is far easier to succumb to the will of gravity and fall than it is to fly. Flight takes practice, focus, precision, concentration, and fearlessness. There is only one way up and one way down, but getting up rarely is as fast as the way down. We all fall down, it is the determination in getting back up that matters.
Today, the clouds and winds may not be accommodating for flight, but the winds may shift and the clouds will part for you to try again to take your place among
When you live in or very near our nation’s Capital, Washington, DC, American national news becomes your local news. The constant bombardment of fighting and badmouthing gets overwhelming. How do two parties, both made up of flesh and blood, elected to oversee, govern, and protect millions of fellow humans also made up of flesh and blood who are in a position to help so many and capable of making life better for others, so dormant and implacable? Time is of the essence.
Since 1995, almost every year since, I have consistently pleaded with my representatives about increasing the funding for more Parkinson’s disease research for the National Institutes for Health (NIH), implementing telemedicine, expanding better and faster drugs and devices, and made a loud cry for the importance of creating a national data collection system for neurological diseases. There were moments of fleeting successes, scattered over the years, but our current Congress shows little signs of budging, even on issues that could save immediate lives. This is about real people in need.
If the current estimate of 60,000 people are diagnosed with PD every year is nearly accurate, it is probable that many patients are either misdiagnosed or not at all. It took me 6 years and 9 doctors to get my diagnosis. I know many others who faced the same journey to a diagnosis.
No one should be forced to be faced with the decision to either afford groceries or their medications. No one should be homeless with Parkinson’s disease. Something is terribly wrong when it has come to this.
Whether one has an illness or not, for the betterment of the country as a whole and all those seeking progress, compromise must be acted, immediately.
Where are you going, what are you doing, how will you get there? Slow it down. You’ll get there–when you get there.
Travelling with or without an illness these days can and often will try your patience, up your stress level, and test your sanity. Taking on the travel challenge might just be a little more peaceful and serene if you follow some of these tips:
1) If you are flying or are forced to be at a determined destination like a train or bus station, allow yourself even an extra hour of time to avoid the feeling of being rushed or stressed. The more self-induced pressure that you add to the event, the more energy you waste, and in a crowded airport, we all need to conserve our energy.
2) When we travel, it is easy to get distracted and lose focus. Deep breathing and meditation may help you keep on track and stay sharp. Something as simple as using an app like, Headspace, or sitting quietly and gathering your thoughts for a few moments a day, may improve concentration.
3) Make a special travel CD or playlist of of music that you look forward to hearing either in the car or once you get to the plane.
Some planning ahead and staying flexible can go a long way in your travels.
Check out my past postings in my archive, on travel tips for more ideas.
Sure it looks like fun, but watch the videos and you might be playing with a potential fire hazard, a product that is sending many to the emergency room, and a powder keg of possible problems. I totally believe that taking a calculated risk now and then keeps life exciting. If you are going to take any kind of risk, make sure that you have looked at all the angles! If the choice is to ride the incorrectly named “hoverboard”, at least put on a helmet, padding, ride on a semi-soft surface, and try to be prepared to fall, rather than expect to immediately master it.
If you have Parkinson’s disease and treasure the faculties that you have, this device, in the current state, may not be the right choice for you. If you desire the ER or an unexpected doctor visit, then spin the wheel, but I’ll wait for another more reliable iteration of these products. I prefer a less risky, less self-com-busting, more stable device that admits that it does not hover (it rolls). Here’s wishing you and yours a very Happy New Year and I will see you right here in 2016!
The support group that my wife and I have run for over 10 years has come to an end. I have witnessed the fluctuations in attendance and noticed the absentees. Sure, some weren’t ready for the group, some didn’t like the format of the group, while others found the location or time to be inconvenient, transportation could have been a problem, Parkinson’s symptoms may have gotten in the way, or they weren’t wild about the group leaders. I wonder and worry about all those I meet, befriend, and then go missing. Sadly, this happens in Parkinson’s disease.
I recently found out an old friend I had met in 2004 is now bound to a wheelchair and in a nursing home. If you read my blog, I am a positive person but I see far too many friends disappearing from our community. As these voices go silent, it becomes easier for them to go missing.
There is no shame in having Parkinson’s. This illness alienates and devastates friendships and relationships, if not closely monitored and preserved. Often, depression and/or apathy play a part. Whatever the case may be, Parkinson’s patients tend to slowly fade from the crowd and it just shouldn’t be that way.
I am so honored to be recognized with so many amazing bloggers to be named one of Healthline.com’s Best Parkinson’s Blogs of 2015. It means so much to be chosen for this award. It is my goal to provide you, my readers, with information that is educational, interesting and entertaining, uplifting, hopeful, and sometimes even humorous. Thank you to all of you who take the time to read this site, refer and share this site, and take time out of your busy day to see what I dream up!
Laughter, giggles, chuckles, guffaws, and smiles are powerful tools for us to help ourselves–I hope the creation below does one of those for you!
It has been close to 4 years since my cat Shadow, lost her eye to Cancer. As worried parents, we were uncertain of how our vivacious ornery ball of fluff would mend or adapt to losing an eye. To our amazement, after coming out of the anesthesia, Shadow was back to her old self. She showed no signs of harboring any anger or resentment for having gone through surgery, and she ate earlier than we had expected. The day after losing her eye, as if nothing had changed, Shadow skillfully walked around the bathroom tub to prove to us that she was still the same cat.
Shadow is my model and daily inspiration for resilience and tenacity. She has taught me so much about how important it is to stay focused and to push forward. A former street cat, Shadow took about 3 months to finally trust us. Her will to live and strength make her a true survivor!
When one is tested with the disruption of illness or ailment, it sets a new parameter in determining our comfort zone. To be human is to label what we call “good days” and “bad days” and with time, self-care, medical and complementary therapies, nutrition, rest, exercise, and a positive attitude, those good days become better days and the bad days may just transition into good days.
In the American mindset, most of us associate the accumulation and increase of rewards to being a positive endeavor. When it comes to Parkinson’s disease, more can mean an array of new challenges. Parkinson’s doesn’t have to get worse, but it can, and if so, it forces you to work harder and put forth more effort in maintaining your well-being.
What was once second nature may not be second nature farther down the road. Movement, speech, or balance which you once took for granted, may now take concentration and real focus. The workload doesn’t lighten. Should the illness decide to move forward, that is our calling to put forth an even more diligent retaliation.
Life maintenance is enough of a challenge without an obstacle like Parkinson’s in your life. Throw in the turmoil and anxiousness of an unexpected health roadblock and you just may feel like the rug got pulled from underneath you. Surprise!
This is the fork in the road where you make the choice to let fear and despair win over, or you make the effort to continue your life by making adjustments and allowing for flexible changes in your life. Some alterations in your life may seem like sacrifices but give yourself some leeway and remain hopeful. Going to the dark side will only make you bitter and demand greater effort.
Karl Robb is the Author of the book A Soft Voice in a Noisy World: A Guide to Dealing & Healing with Parkinson’s Disease. Available in most electronic formats and paperback.