I am so excited to announce that Angela and I will be guest blogging for the site, PatientsLikeMe.com. I look forward to sharing stories, insights, and information through my blog posts and joint posts with my wife and partner, Angela. Here’s a link to our first post, a Q&A session: http://bit.ly/2iJb0Ex
If you are unfamiliar with this website, here’s a quick description from the PatientsLikeMe About Us page:
We’ve partnered with 500,000+ people living with 2700+ conditions on 1 mission: to put patients first
Imagine this: a world where people with chronic health conditions get together and share their experiences living with disease. Where newly diagnosed patients can improve their outcomes by connecting with and learning from others who’ve gone before them. Where researchers learn more about what’s working, what’s not, and where the gaps are, so that they can develop new and better treatments.
It’s already happening at PatientsLikeMe. We’re a free website where people can share their health data to track their progress, help others, and change medicine for good.
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!
I am NOT a paid sponsor nor have I been compensated for these comments:
I guess you could call this a “footnote”–okay, bad joke, but I think some of you with foot problems and balance issues, might just find benefit in trying these shoes. They are the cost of a good running shoe and they have a return policy if the shoes don’t work out: My only mention of these shoes here is because I have found them to be so comfortable–period. My wife and I recently discovered these
running shoes made to accommodate for more space for a wider foot. We each got a pair–she loves that her heel doesn’t hurt and I love the comfort and flexibility that it allows my toes. I can say that these are the most comfortable shoes that I own! I just think this product should be known. I haven’t sold out and I won’t sell out. I will only share products that I use, find great benefit, and feel that they may have a positive impact on your life. The shoes came from altrarunning.com.
I want to commend my friend, Sonia Gow on organizing her first Parkinson’s Cafe! Her event was a smashing success as over 50 people in the Fairfax, VA, area attended. The event was like a free-flowing support group and a great opportunity to share and catch up with friends. We are so lucky to have Sonia’s passion and vision for helping the Parkinson’s community so close by. Check out her site at www.parkinsoncafenetwork.org. to learn more.
My friend Jean Burns is bringing awareness to some very important concerns involving clinical trial participant and hospital policies. After you have read this, share it with friends and family. This is an eye-opener. Here is the article in US News World Report.
The 2016 World Parkinson Congress registration deadline for discount is nearing (July 5), so register soon. Don’t forget about visiting the author Book Nook and Wellness Way while you are in Portland, Oregon. This event only happens every 3 years and as an international event in North America, this is a great opportunity to learn from doctors, researchers, practitioners, and patients across the globe. This is a wonderful opportunity to meet and learn from neurological experts from all over the world. Go to WPC2016.org to learn more.
I am quickly nearing the age of 50. To many of you reading this, 50 isn’t old. I don’t consider 50 old either, but I have had Parkinson’s disease since age 17, and that means I’ve had it for a long time.
When I was given my diagnosis at the age of 23, I was told by several people in the PD community that I would see a cure in 5 or at least 10 years. A quarter of a century later, I didn’t expect a cure but I had hoped science had developed better drugs, therapies, and that hospitals and retirement homes would have better understandings of how to care for people with this disease.
What is it going to take for the world to understand Parkinson’s disease? What is it going to take to develop new drugs with fewer side-effects? What is it going to take to get Parkinson’s disease seen as an illness that needs assistance, right NOW!
This Sunday marks the first Partners in Parkinson’s event in Washington DC. The event is a full day of education on living with Parkinson’s and learning about resources in the DC/VA/MD/DE/WV area. I encourage you to come and be a part of this free event. Wednesday 10/8 at 12 pm is the deadline for registering online. You can register as a walk up on the day of the event.
As part of the Partners in Parkinson’s event, there will be a Resource fair that includes representatives from universities that have Parkinson’s programs, local and regional support and exercise groups, vendors who provide services to our community and many more community resources. It’s a great opportunity to meet with the staffs of these organizations and network.
You also have the opportunity to hear from those living with Parkinson’s, their carepartners, and allied health professionals who work with the PD community.
Register online and find out more at: https://www.partnersinparkinsons.org/attend-an-event. There are also upcoming Partners in Parkinson’s events in Philadelphia, Chicago, Denver and Los Angeles before the end of 2014.
P.S. Read my September blog posting discussing other upcoming PD Educational Events this fall.
On Wednesday, State Directors and Assistant Directors representing the Parkinson’s Action Network (PAN) stormed Capitol Hill to advocate for issues facing our community. We met with our Senators and many of our state representatives in Congress. Even though I have done this a dozen or so times, the experience is exhilarating and empowering. I don’t deny that walking the miles of marbled corridors left a few souvenir blisters and left me with a good night’s sleep, but it also gave me a sense of accomplishment.
The experience on the Hill was remarkable but even more wonderful is the camaraderie and friendship generated when we all got together. I thank you all for your advocacy work and the difference you make and strive to make. I truly enjoyed seeing all of you and look forward to our next encounter. Until then, I wish you well.
Next Monday, hundreds of the United States’ most dynamic and involved advocates for the rights and issues affecting people with Parkinson’s Disease will convene in our Nation’s capital. The goal is to be heard and represented but mostly to be understood that we, as a collective force need better funding and services.
Neurological disorders are rising as is the aging population. Even more importantly, younger and younger people are receiving neurological related diagnoses that one might find in an older patient. Whether the cause is our growing toxic world and/or a genetic component that gets triggered or some cocktail of switches, a desperate portion of our population seeks a solution to a real problem that plagues them everyday, all-day.
In less than a century our country replaced vacuum tubes for Silica chips, went from the horse-drawn carriage to the space shuttle, put a man on the moon, and mapped the human genome. Where is the push to eradicate or even slow neurological illnesses? Great strides have been made in other diseases. New therapies and drugs, while slow to come, only slow or mask symptoms. It is time for a push and a unification of voices to be heard in DC and across the nation that more must be done.
The PAN advocates are coming to DC to speak for the countless victims, both directly and indirectly, touched or shaken by Parkinson’s Disease. They are speaking for those who are unable to speak for themselves.
To learn more about PAN and to view an online webcast of our symposium, go to www.parkinsonsaction.org.