Dealing with Parkinson's Disease

Big news just in from Michael J. Fox foundation The U.S. Senate today unanimously passed the National Plan to End Parkinson’s Act, the first-ever federal legislation dedicated to ending Parkinson’s disease, sending the bill to President Biden’s desk to be signed into law. The bill passed with overwhelming bipartisan support in the U.S. House of Representatives last December.  Senate Majority Leader Chuck Schumer (D-NY) announces the passage of the National Plan to End Parkinson's Act in the Senate. On behalf of the 1 million people living with Parkinson’s disease in the U.S. and their families, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) applauds Congress for this historic step forward in search of improved treatments, and ultimately, a cure for every patient impacted by this disease today and in the future.   The Parkinson’s community — including tens of thousands of Parkinson’s policy advocates, partner organizations and champions in Congress — rallied...

Am I a klutz or is it a PD fall?  I've fallen down a few times while out walking, five times to be exact. Three of the 5 times happened when I tripped over sidewalk hazards in New York City. Fortunately only one of these falls resulted in broken eyeglasses, multiple cuts and scrapes. I did better on the other falls--just a few scrapes and my pride was bruised. In two of the incidents the sidewalk hazards were similar. Light poles, either previously stood or were being installed. Regardless, there were bolts set in the concrete sidewalk and sticking up a few inches. If I were the type to run to a lawyer, I'm sure a judge would agree and find the city or property owner at fault. My PD Quick Tip sounds obvious but there is a lot going on and this is worth repeating: Make sure you watch where you're walking, you might just avoid an unnecessary fall.

I woke up at 4am with this song in my head. Well, I won't back down, no I won't back down You can stand me up at the gates of Hell But I won't back down Gonna stand my ground, won't be turned around And I'll keep this world from draggin' me down Gonna stand my ground and I won't back down Hey baby, there ain't no easy way out Hey, I will stand my ground and I won't back down Well, I know what's right, I got just one life In a world that keeps on pushin' me around But I stand my ground and I won't back down Hey baby, there ain't no easy way out Hey, I will stand my ground and I won't back down No, I won't back down Source:  LyricFind

I've been going back and forth whether I wanted to 'go public' with the news of having Parkinson's.  This week, after a lot of thought, I did it. And received so much positive support from Facebook friends. No regrets.    Here is what I posted to my Facebook timeline. I'm guilty of posting a vague reference to my health.  Not sure why but for a long time I've avoided telling many people that I was diagnosed with an illness.  I still don't feel comfortable talking about it, mostly because it has gotten negative responses or reactions from the few friends I've told. It seems every time I open up and tell a friend, it's the last time I'll hear from them.  A few wrote to me that people don't want reality contaminating their Facebook fantasy world so I've been hyper-selective about what audience I expose to my postings that don't eude toxic positivity.  Since I broke character yesterday and posted a vague message seeking a time machine to ...

Researchers at Cardiff University are hoping to launch a study to discover if there is clinical evidence that drumming classes are improving the lives of Parkinson’s disease patients. Parkinson’s disease is more than just a tremor. It’s a slow, exhausting loss—of movement, balance, speech, even parts of the mind. It creeps in, day by day, because the brain is losing nerve cells that make dopamine—a chemical that helps control both motion and mood. That’s why people with Parkinson’s often struggle with walking, standing up, or simply turning around. Some experience sudden “freezing,” where their feet won’t move at all, especially in tight spaces like doorways. Over time, many also face memory problems and cognitive decline from Parkinson’s-related dementia. But in a quiet corner of Wales, something unexpected is helping: samba music . Sparky Samba: Finding Rhythm in a Body That’s Lost It Eirwen Malin knows Parkinson’s disease firsthand. She lives with it. After her son attended a sam...

Suddenly my eyelids feel so heavy, and at the worst times. It's happened when I am just talking with someone-my eyes are closing, eyelids so heavy, I struggle to keep my eyes open. The person I was talking to thinks I'm bored and am really rude.  Was I hypnotized? It's probably the autonomic nervous system taking a break. Blinking is usually a natural reflex. Parkinson's Disease can cause a person to stare and the autonomic nervous system forgets it's time to blink.    I started doing an eye exercise to strengthen my eyes and remind my brain to blink. I'm not sure if my ophthalmologist would endorse this technique, but here it is.  The exercise is 8 steps. I basically look in each direction, hold it for a second and blink. Look in the next direction and repeat. Look up and left, blink Look up, blink Look up and right, blink Look right, blink Look down and right, blink Look down, blink Look down and left, blink Look left, blink I repeat this for a minute. Afterwa...

The name of this blog is changing from screwpd to parkinsons48.blogspot.com   The former name has caused confusion about the blog's content and also caused it to be flagged as not safe for the workplace.  Hopefully the name change to parkinsons48 gets this blog indexed and crawled by the search engines. Are you wondering, "Is there anything I can do to help?" Yes, you can help and it won't cost you anything but a few minutes of time. Post the new url on a few of your favorite social media sites and to relevant groups.  Thanks for your help. Like and Share!