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!
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.
My friends and readers,
Once again, I have neglected the blog unintentionally due to several speaking engagements in Pennsylvania and all around the state of Virginia. I just completed 5 lectures in 3 days. It is such a pleasure to meet so many amazing and inspiring people.
Last month, Angela and I attended the World Parkinson’s Congress in Montreal, Canada. This amazing event brought 3500 researchers, doctors, and people with Parkinson’s disease together in one place. Montreal was lovely! I think what was most amazing to us was all the friends we ran into, who we hadn’t seen for many years. It started as a conference but in reality, for us, was a wonderful reunion!
The next Congress will be in Portland, Oregon. I hope to see you there!
I want to know if you have questions, comments, or suggestions for upcoming posts. Are there specific topics related to Parkinson’s that you want me to write about?
Check out the National Parkinson Foundation’s (NPF) new First Connect My Page program site and register. I recently wrote 4 articles for the project. Go to the NPF site for more information.
If you’ve read my book, A Soft Voice In A Noisy World : A Guide To Dealing and Healing with Parkinson’s Disease, please consider this:
- If you enjoyed reading my book, please review it on one or more of these sites: Amazon, Barnes and Noble, GoodReads, Smashwords, Kobo,Google Books, or any other site you frequent or feel would be a good place to promote the book.
- Please tell your local bookstore and library that A Soft Voice is available for easy ordering from Lightning Source. This makes ordering for libraries and bookstores who want to have copies in stock very convenient.
- If you have a support group and are considering a bulk order to sell, giveaway, or are considering a book club with the book, please send us mail.
- I speak frequently to Parkinson support groups, conferences, and medical groups and can speak on the book or a wide range of topics if your organization is in need of a speaker.
- 5 Tips For Today
- Most time-release pills have a matrix makeup and should not be split, so check the bottle and/or ask your pharmacist.
- Citrus and pills are not always a good combination, so make sure the citrus and your pills don’t interfere with each other.
- The mind, body, and spirit, are all connected so feed all three! Challenge your mind, Work the body, Calm your spirit.
- Laugh, laugh, laugh.
I will be attending and speaking on a panel at the World Parkinson Congress on creativity. If you are attending the event, please come by!
Have a great day!