Showing posts with label educate. Show all posts
Showing posts with label educate. Show all posts

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-

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.

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.

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.



April is Parkinson's Awareness Month

 


April is Parkinson's Disease Awareness Month, chosen because it is the birth month of James Parkinson, who first identified the symptoms of Parkinson's disease more than 200 years ago.

Parkinson's Disease, or PD, progresses and affects everyone differently, and symptoms vary from person to person. It can be a mix and match when you go to a PD support group meeting.

The most commonly visible symptoms are tremors or shaking, but the condition can also manifest in many other forms, such as slowness of movement, muscle rigidity, speech changes, fatigue, sleep disturbances and mood disorders.

There is currently no cure, however researchers are working to find a cure, as well as better treatments and support for people living with the condition.


Parkinson's Unity Walk 2024

Parkinson's Unity Walk

Saturday April 27th 2024 • 8:30am - 1pm, Central Park, New York, NY

The Michael J. Fox Foundation (MJFF) is thrilled to bring you the 2024 Parkinson’s Unity Walk on Saturday, April 27th, in New York City’s Central Park. Enjoy programming at the Bandshell, explore informational booths featuring industry representatives, national and local groups, and participate in a 1.2-mile walk. Families and friends of all ages and abilities are welcome for all portions of the event!

Let’s come together and walk to end Parkinson’s!

This year, the Parkinson's Unity Walk will be celebrating 30 years of joining as a community and walking together to end Parkinson's disease!

Location:
Central Park, NYC - Naumburg Bandshell
Entrance at East 72nd Street. & Fifth Avenue

Unity Walk Route Map


Cognitive and Non-motor Symptoms

This presentation feels like it is talking for me.  Joanne Hamilton talks about some non-motor an cognitive issues that I have trouble expressing.

Some of the first symptoms people with Parkinson’s may experience are not visible to others. As Parkinson’s progresses, cognitive and other non-motor symptoms continue to be a significant aspect of living with Parkinson’s. Joanne Hamilton, PhD, ABPP-CN, of Advanced Neurobehavioral Health of Southern California in Poway, CA, explains what to expect and how to distinguish symptoms caused by Parkinson’s from those caused by medications. Her presentation for the Davis Phinney Foundation audience offers hope and practical strategies for understanding and managing cognitive and non-motor challenges.

PD Quick Tip - Freezing

If you get "stuck" walking, brushing teeth, in the shower scrubbing shampoo, etc. Try looking at the task from another angle. 

Walking around in apartment. Sometimes I'm heading into a room and can't make the left turn to go in. Back up and try doing the task in reverse.  I turn right three times and I'm facing left.

When I'm having trouble with my arms and hands and it's difficult to move the toothbrush, it seems to be the toothpaste jamming me up. When I try it without toothpaste and rinse with mouthwash it works.  I don't know if a dentist would be on board with this method.

When I'm walking outside I focus on the sidewalk and try to follow the lines so I'm not swerving all over. 

Occasionally I'll think of something I do that seems counter intuitive or just strange but it works for me and my PD and maybe it can help another struggling person too.




Have you told friends and family or accepted help with expenses?

I'm not very comfortable discussing Parkinson's with close friends and family. Many friends don't ask.They talk to each other, word gets out that I have "something wrong". Friends I do tell? They drift away and say to each other they think I had a stroke, or something. 

Online is a little strange, many people don't want to deal with real life events or friends crisis--so I don't post on my own FB page about real struggles. Maybe I should but I don't.

As for gofund, etc. Once in a while I post a link to 'relaxsteve'. Imagine if everyone could afford to give $50 to every friend's gofundme. I only setup the gofundme page with the hopes a billionaire might drop me a hundred thousand or two.  But I never campaigned for donors or asked friends/family for help day-to-day struggles. When I first made the gofundme page I wrote "$500,000 minimum" that will filter my close friends and family out and hopefully get $ from a wealthy kind soul. Not yet, but I have hope :)    to be continued, check back...

World Parkinson's Day and Parkinson's Awareness Month

April 11 is World Parkinson's Day and April is Parkinson's Awareness Month — a time to raise awareness and advance research toward better therapies and a cure for Parkinson's disease (PD). It's also a day to signal your commitment to a future without PD.

Rally your friends and family to make a donation to support PD groups, affordable treatments and finding a cure!

About Parkinson's Disease (PD)

The symptoms of Parkinson’s are mainly from the loss of dopamine-producing nerve cells which control movement. Low levels of dopamine affect how your body moves, making day-to-day activities such as eating, getting dressed or using everyday objects like a phone or computer difficult. The symptoms typically associated with Parkinson’s are tremor, muscle stiffness and slowness of movement, but nothing about PD is typical, everyone will have varied experiences.

Parkinson’s can cause a wide range of non-movement related symptoms including chronic pain, sleep disturbance, constipation, memory concerns, anxiety and depression; all of which can significantly impact quality of life.

Each individual diagnosis is different, a combination of symptoms and side-effects; this makes treating Parkinson’s so difficult.  We need a CURE!

How to help loved ones with chronic illnesses enjoy the holidays

How to help loved ones with chronic illnesses enjoy the holidays [The Washington Post]
For many people with chronic illnesses, the holidays can be a lonely and exhausting time. Health limitations may keep them from joining celebrations, and participating in the festivities can quickly tire them.

The Washington Post asked people with chronic conditions for advice for family members, friends and colleagues to help make the holidays an enjoyable experience for everyone.

Michael J. Fox Rediscovers His Optimism

This is a year or so old but still worth watching for Young Onset PD as well as fans of Michael J Fox.

I still want to do a round table special sitting with Alan Alda and a few otheres to talk about PD and how to adapt to suddenly having this creature with me everywhere I go, affect everything I do. Infesting my life and tearing apart friendships, relationships.

Fundraiser for Parkinson's Unity Walk (Facebook fundraising)

I am raising money for the Parkinson's Unity Walk via Facebook fundraising.  I've chosen this nonprofit because their mission spreads awareness of Parkinson's Disease and distributes to the research organizations listed below. I hope you'll consider contributing. Every little bit will help me reach my goal. I've included information about Parkinson's Unity Walk below.

www.facebook.com/donate/468755728571510/

The Parkinson’s Unity Walk is the largest single-day grassroots fundraiser for Parkinson’s disease research in the United States. Our mission has always been to raise money for Parkinson’s disease research. Thanks to our supporters and sponsors, more than $26.5 million in donations have been raised since the first Unity Walk in 1994 -- 100% of which has funded hundreds of research studies, taking us steps closer to finding a cure for Parkinson’s disease.

All donations are distributed to the following four organizations for the sole purpose of funding research grants: American Parkinson Disease Association, Parkinson’s Foundation, The Michael J. Fox Foundation for Parkinson's Research, and The Parkinson Alliance.

Our Walk is held every April in New York City’s Central Park. In addition to the 1.4-mile wheelchair-accessible walk route, we are a comprehensive event for Parkinson’s disease information and resources.

World Parkinson's Day

Parkinson's is a defined as a movement disorder but the very long list of issues goes way beyond movement and shaking.

here are a few more that people added: Low voice or whisper, tiny handwriting, constipation.