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


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.




Blog Construction: Frequent Design Changes

A brief interruption. Most of you come to this blog to read the posts related to Parkinson's Disease.  

I've been experimenting with various settings on this blog in an attempt to get it listed in popular search engines, trying to remove whatever is preventing the blog from appearing in search results.

You may see the appearance radically change a few times a day as I experiment with setting but the blog content is not changing.  All the postings about YOPD and PD are still there.

We will control the vertical. We can roll the image; make it flutter. We can change the focus to a soft blur or sharpen it to crystal clarity. 

For a few hours last week the entire blog was unreadable on mobile devices and a couple of you asked what is going on. So in the spirit of transparency, that's what's going on. Do not adjust your set.

And now back to the blog posts, already in progress.