Today, I have a slight deviation to my usual positive message for an expression of frustration and a plea that I strongly feel needs to be expressed. Consider this my contribution to advocacy:
Congratulations if you are watching and reading the world news and can remain calm. I for one, am unable to digest the vitriolic, bombastic, childish, unproductive, hateful, remarks coming out of our nation’s capital.
When I was a child in the 1970s and 1980s our greatest fear out of Washington was the threat of nuclear war. The fear generated countless classic Hollywood blockbusters and the story slowly faded in the background, until now. The threat was probably there the whole time, but it did not remain on the front page and now, in addition to the chaos of the Trump White House, the threat of climate change, and the shake-up celebrity marriages, it makes one ponder just what to do?
If you are dealing with Parkinson’s or any disease, this is the last thing that you need on your plate. Healthcare, doesn’t mean much, until you need to access it. Our Congress, Senate, and President are entitled to full lifetime health coverage for little or no cost. It is more than a nice perk. They don’t need to vote on a healthcare plan for themselves, they’re just fine, thank you.
As for the rest of us, who actually, could use affordable healthcare, many of us are left dangling in the wind and waiting for a solution. It isn’t pretty, sexy, or exciting, but it sure is needed. I have never seen our government at such a standstill as it is at this time. A stagnant Congress and a President in turmoil leave the millions of people in need of affordable care under undue duress and the inability to move forward.
I know of many friends and fellow people with Parkinson’s who have to make the decision to cut back on their grocery bill to be able to pay for this month’s medication bill. It shouldn’t have to be that way. Sacrificing from your already reduced food budget to eke out enough for some or all of your medications is a sad and scary trade off.
Therapy caps have created a huge problem in limiting coverage for appointments for those of us who benefit from occupational therapy, physical therapy, speech therapy and rehabilitation. These outpatient services keep many of us out of the expensive doctor’s offices, crowding hospitals, and keeping patients active in their community.
I wish I had an answer. I wish I wasn’t so frustrated. I wish someone would hear our voices!
My many thanks to my friends at the Parkinson Voice Project in Richardson, Texas for this generous review of our second book!
Book Review by LOUD Crowd® Member Carol Brandle
TITLE: Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook
for Body, Mind, and Spirit
BY: Angela and Karl Robb
Having a workbook to accompany the best-selling Parkinson’s book, A Soft Voice in a Noisy
World, provides an excellent wellness tool for individuals or group discussion. Questions in the
workbook are closely paired with chapters in the book. Additionally, some questions shine light
on new ideas, such as complementary therapies like Reiki, massage, acupuncture, and
Karl Robb brings the same positive attitude, hope, and strength to this workbook as to his
book, A Soft a Voice in a Noisy World. Exercises which reduce stress and reaffirm strength can be
done as individuals or in communication groups, such as The LOUD Crowd® groups at Parkinson
Voice Project. A caregiver or partner might use the questions to strike up meaningful
conversation with the affected person, whether Parkinson’s is the health concern, or some other
health conditions. Either format will help you balance the connection between mind, body, and
It’s apparent that Angela and Robb write from a wealth of experience as they direct
questions to sensitive issues, such as “What are you willing to do to help yourself?” and creating
a timeline to improve communication with a health care provider. Angela was honored in 2015
as a White House Champion of Change in Parkinson’s Disease. She and Karl also author an award winning
Angela and I have been fans, friends, and Board members of the Parkinson Voice Project for several years. We encourage anyone unfamiliar with this organization to learn about the wonderful work that they do.
I have just returned from a working vacation in the mountains of North Carolina. The experience proved to be nothing short of amazing, as I saw an improvement in almost all my symptoms! Strength, stamina, balance, gait, sleep, cognition, and productivity were all improved and recognizably noticeable.
Nature has a healing property. Just to be surrounded by the abundance of flowering, fluttering, and stirring plants and creatures can reunite you with your connection with the planet. In this modern world, we begin to lose that connection with earth and sky, only to focus on flat screens, texts, and our on-screen accounts.
Once leaving the bucolic beauty of the lush green forest and coming back to city life, I find myself wondering if this is my healthiest decision. Returning to the sights and sounds of nature re-invigorated me–I found it to be a struggle to return to civilization, albeit, at this time, a necessity. Don’t forget to garden it, walk in it, swim in it, or just be in it–don’t lose your connection to Nature.
What keeps you motivated?
What gets you out of bed every day?
What makes you happy?
What inspires you?
Every day may be about small victories.
Be proud of your achievements.
Don’t discount yourself or what you accomplish.
Eat your veggies!
Now is the time to eat all the healthy greens and fresh produce that you can. Canned and frozen vegetables may be okay when fresh isn’t available but, fresh peas, squash, corn, and beans are simply the best! Support your local farmer’s markets, local growers, and co-ops. Encourage organic and no-pesticide growers! Fresh is best!
Be aware of the sun’s intensity and extreme heat!
Protect everything! If you are taking Sinemet, exposure to the sun may cause you to burn more easily! Wear a hat and sunscreen everything that you don’t want to burn.
Stay hydrated! Staying hydrated is not just good for the body, but your pills may function better as well.
Hot or cold Many PD patients, me included, can easily overheat on very hot days. For some reason, we don’t always self regulate our body temperature at peak performance. Pay close attention to your sweating and thirst.
Watch your salt–Too little salt may cause orthostatic hypotension (dizziness when getting up or lying down) and too much can cause high blood pressure, find a balance and ask your doctor.
Most of us are low on vitamin D! Have your vitamin D level checked. Sun helps with D, but sun ages and burns. Dairy has D but be careful with protein and your meds.
Moderation and body awareness will help keep you sun safe. Be sun smart and careful out there! Talk to your doctor about these issues. I am not a doctor and these are suggestions, not medical advice. Be well!
A comfortable routine is not always a bad habit.
Cats love it! The only real problem with routines is when you sacrifice an opportunity to maintain the routine. If the cycle that you are in is working for you, then by all means keep it, and don’t let go, but if the routine has gone stale or you see a need for correction, it might be time for a new tack.
I am so honored, humbled, and proud to announce that for the 3rd year in a row, Healthline has recognized my blog, http://www.Asoftvoice.com, as one of the best Parkinson’s disease blogs! I enjoy blogging and sharing my experiences and thoughts with my readers. It means a great deal to me to know that my site may help in some small way! Thank you for reading my posts and coming to my site! I hope that I can continue to offer the content that you enjoy and find to be of assistance.
Last week, I had the opportunity to speak to a wonderful audience with Parkinson’s and their care partners, in eastern Virginia. It was a marvelous exchange of information and emotions. Parkinson’s disease comes with so many unwritten rules. Trying to find all that you need to know about this illness, all in one place, may be frustrating to collect. There is so much to remember and so much that you might forget. Staying on top of Parkinson’s disease, symptoms, medications, and health maintenance, is a full-time job!
The following are 5 pieces of knowledge that you will want to remember:
Is your neurologist a movement disorder specialist? If you have Parkinson’s disease and your neurologist isn’t a movement disorder specialist, you may want to see if there is one in your area. Movement Disorder Specialists complete extended training to focus on neurological disorders like Parkinson’s disease.
If you are taking antibiotics, your medication’s effectiveness may be hindered dramatically. I can speak from experience that after taking antibiotics for my tooth infection, I saw a huge decline in the efficacy of my daily regimen of Parkinson’s medications.
Don’t forget that if you are on Sinemet and you are protein-sensitive (protein in your diet may interact with your Levodopa), protein may decrease the full benefit of your dose. You may want try taking your protein later in the day or evening. Timing your medications for optimal benefit is part science, part art, and part luck.
When I am able to lower my stress level, I have found that medications work better, I feel calmer and more peaceful, and see less of my symptoms.
Eat smart and healthy! Talk to your doctor about how to improve your gut health.