Neurologist explains symptoms of Parkinson's Disease

The doctor being interviewed explains the hallmark signs of Parkinson's Disease. Also a commenter on the video was really informative - detailing what the "on/off" experience is like, and how unpredictable it is. 

Dr. Tom Pitts, a board-certified neurologist, speaks with NBC's Tom Llamas about questions surrounding President Biden's health. Dr. Pitts has not examined the president, but shares opinions based on video clips of Biden. 

Some common difficulties with speech includes:

• Speaking softly or in a reduced volume
• Using a monotone voice
• Slurring words
• Mumbling
• Stuttering or stammering
• Hoarseness or a strained quality
• Breathiness
• Uncertain articulation

Bradykinesia is a clinical term that refers to slowness of movement, or speed hesitations and halts that occur as movements continue. It can affect voluntary motions, like what you tell your body to do, as well as automatic or repetitive motions. Bradykinesia is a common symptom of movement conditions like Parkinson's disease (PD), and can make everyday tasks difficult.

In Parkinson's disease, hypomimia occurs when a lack of dopamine in the brain prevents facial muscles from working as well as they used to. This can make it difficult to smile, raise your eyebrows, or express your feelings, and can sometimes make it look like you have a blank expression.

In people with Parkinson’s, cognitive deficits may become more severe and impact daily functioning. Similar to slowness of movement (or bradykinesia), people with Parkinson's disease often report slower thinking and information processing (termed “bradyphrenia”)

Fatigue is a non-motor symptom of Parkinson's disease (PD) that can feel like a deep physical tiredness that doesn't improve with rest. It can make it feel impossible to move, as if you have no energy. Fatigue can occur at any point in the course of PD, whether movement symptoms are mild or severe.

SOURCE: https://youtu.be/97ZIHY2QcDI?si=OLA2NXJEep-w9f3-

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Congress Passed the National Plan to End Parkinson's Act

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 together to help policymakers understand just how critical this legislation is. From adding your names to MJFF’s petition, calling and writing representatives and senators, pitching op-eds and sharing your stories on social media — advocates in all 50 states sent more than 70,000 messages to Congress urging their support. And nearly 1,000 advocates joined MJFF to meet directly with their members of Congress.  

We’re especially grateful to the bill’s lead sponsors, Senators Shelley Moore Capito (R-WV) and Chris Murphy (D-CT) and Representatives Gus Bilirakis (R-FL) and Paul Tonko (D-NY) for their exceptional bipartisan leadership in getting this bill passed. We also extend our deepest thanks to Senate Majority Leader Chuck Schumer (D-NY), Representative Jennifer Wexton (D-VA), Senator Bernie Sanders (I-VT), Senator Bill Cassidy (R-LA), House Majority Leader Steve Scalise (R-LA), House Minority Leader Hakeem Jeffries (D-NY), Representative Cathy McMorris Rodgers (R-WA), Representative Frank Pallone (D-NJ) and the many cosponsors from around the country for helping to get this bipartisan bill passed.   

A cross-country strategy to end Parkinson’s has the potential to: 

Dramatically increase federal research funding; 

Develop more effective pathways for treatments and cures; 

Improve early diagnosis; 

Spark new and improved models for patient care; 

Create standards and measures to prevent Parkinson’s disease; 

Address health disparities in diagnosis, treatment and clinical trial participation and 

Enhance public awareness of the disease. 

As the bill heads to the president’s desk, we look forward to continuing our work with policymakers to establish the advisory council and bring the National Plan to fruition for every patient and family impacted by this disease. 

Please join us in thanking the 215 representatives and senators who supported this bill in Congress and read the Foundation's press release to find out more about this historic bill.

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PD Quick Tip - Falling?

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.

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I Won't Back Down (song)

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

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PD Open Message on Facebook

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 get a cure, I decided to be authentic and share the news here.  Twelve years ago I was diagnosed with Young Onset Parkinson's Disease. I am not seeking emoticons of support, just letting friends know what's up. Parkinson's Disease has a very long list of symptoms, it's like the menu in a Chinese restaurant when talking about symptoms. One person suffers from B1, B3 and G4 the next person suffers from B3, C1 E22 and p5. And do you want shakes with that? No two people have the same path. If you want to read more, I'll add a blog link in the comments.  I know it is hard to understand that one illness can take so many directions but for now it's all called Parkinson's, maybe it will have sub classifications in the future, who knows. Hopefully this message doesn't make you too uncomfortable. 

One thing to remember, the illness is both chronic and progressive with no cure.

So here it is, now on Facebook. You can click an emoticon, post a GIF or send thoughts and prayers, it's all good. Phone calls or email are welcomed.   I don't like Facebook messenger and try to avoid text messaging when possible.

TGIF and have a great weekend.

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Potential Benefits of Samba Drumming for Parkinson's

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.

A special samba drum class has been a refuge for Parkinson’s disease patients in Wales where they can move and socialise.

Now researchers in neurogenerative diseases are planning a study to see if samba really can help ease people’s symptoms. 

Parkinson's disease is a degenerative disease caused by a loss of nerve cells. Due to a loss of the chemical dopamine, it affects body movement as well as mental health, according to the World Health Organization (WHO).

Parkinson’s patients experience problems with balance, standing, and walking and sudden rigidity as well as cognitive decline from dementia.

The founder of Sparky Samba, Eirwen Malin, is a Parkinson’s patient herself. She says she started the club after her son went to a samba concert.

“A big issue for people with Parkinson's, they sort of lose that sense of rhythm, they lose the rhythm of walking. Some people have this freezing gait thing where they just suddenly can't go anywhere, especially if you're in a doorway or something,” said Malin.

“And I just thought that the samba rhythms would help them. And I put it out on my Twitter network, which isn't huge, but it is international. And they all said, yes, that's a really good idea, give it a go,” Malin added.

Since then, the class has been receiving government grants which have helped establish several more classes around Wales.

Over the past year, the patients here have reported an improvement in their mood and movement.

“Before samba, I was struggling to get out [of] the chair, so at least I am a bit more mobile now. Not quite so stiff, which is part and parcel of Parkinson's, the stiffness in the joints. I tend to still be leaning over to one side, so I've got to try to prop myself up. But I think without samba I would be struggling,” said Brian Dews, one of the participants in Sparky Samba.

Researchers at Cardiff University are hoping to launch a study to discover if there is clinical evidence that these classes are improving the lives of Parkinson’s disease patients.

Cheney Drew, who works on the university’s drug trials, believes evidence is needed to show exactly what helps Parkinson’s disease patients.

She has previously investigated the impact of drumming on people with Huntington’s disease, another neurodegenerative disorder which can also affect movement.

“One of the reasons that we're doing the trial [is] trying to tease out those complex mechanisms and understanding is actually the drumming itself?” said Drew.

“So there's a phenomenon called rhythmic auditory stimulation which has been shown to improve the way the brain talks to itself and the way that messages are relayed around the brain. But also there may be a social component. We don't know that,” said Drew.

She says controlling for the social component carefully will be important in the experiments to understand how Sparky Samba may be helping Parkinson’s disease patients.

The study will measure symptoms such as freezing of gait and quality of life rather than dopamine levels and other biological symptoms.

“We do look at things called biomarkers, which are biological changes that occur as part of the disease. They are often a really good marker of how the disease is progressing,” said Drew.

“However, we don't have really good biomarkers for Parkinson's yet and so all clinical trials are based on a rating of clinical symptoms. And that will include, as I said, quality of life, motor and cognitive symptoms”.

The study is expected to run for 12 to 18 months.

The WHO has said that more people are becoming disabled and dying from Parkinson’s disease globally. The prevalence of the disease has doubled in the 25 years with at least 8.5 million people having it in 2019.

SOURCE euronews

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PD Quick Tip - Heavy, sleepy eyelids

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. Afterwards my eyes feel open and awake.

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Blog Name and URL Changing to parkinsons48.blogspot.com

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!

 

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