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

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.



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

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.

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!


 

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.


PD Apathy is very real

I brought up Parkinson's Apathy to a group last week and was surprised I received a lot more response than I expected. Just knowing 5 or 10 other people also struggle with PD apathy is reassuring and helps me to not feel so alone with my long list of symptoms.

PD apathy is very real. I struggle to accomplish even the smallest tasks and I beat myself up because I have a ton of things that need to get done, all with a high priority. But I freeze up mentally when I think about it. The list grows and months go by on the calendar.

In an ideal world there would be a person who can help someone who's cognitively challenged to do things. Like a "task rabbit" but they are also trained in psychiatry or psychology. Someone who understands we're not being lazy. The neurons just don't connect to accomplish the things we need to do.

I try making lists, then lists of lists and it's not helping.

By the way, I'm calling this apathy but the inability to accomplish things might be another issue. The days pile up, turn into months and years.

How do you deal with the apathy–feeling of being stuck in quicksand, surrounded by a brick wall?

A few suggestions from the group were: 

  • Reduce clutter, make neat piles
  • Set realistic goals
  • Break tasks down into smaller tasks
    • ie: Clean Kitchen becomes wash dishes, put dishes away, mop floor, clean cabinets. 
  • Remember to take time off! If you're having a bad day, unplug and relax. Don't struggle to accomplish something every day.

I know, It could always be worse.

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