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.

From the Davis Phinney Foundation for Parkinson's

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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.

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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.

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Help me change a light bulb?

So I could blame a lot of things for the nearly impossible task of changing a light bulb, but I'm pretty sure it's 75% shitty product design and 25% user fault, meaning my diminishing fine motor skills related to Parkinson's.

About 5 years ago a light bulb burnt out in the hallway. No big deal I thought. I dragged out the ladder and stared at the cheap made in China fixture.  No way could this be as complicated as I'm making it. Yes, it was that complicated.  I posted a photo of the fixture with a plea for help to a few message boards. Someone who went through the demoralizing hell I'm going through replied.  Sent me a PDF with step-by-step directions how to change a light bulb in this fixture. Over the years I've experienced other poor product designs from computers to television remotes to poor user design on software. 

Oh sorry, I was drifting. Changing a light bulb. Yes that is what I'm doing today. The meds kicked in so I'm changing burnt out bulbs. Two bulbs broken and $18 down the drain. A few hours pass, off time, next dosage of meds. I've tried every method posted on YouTube an the bulb won't twist into the socket.

I had five new bulbs, broke two. Not able to get bulbs to stay in the cheap track lighting fixtures.  The reason I mentioned the bad product design is for my own sanity.  Knowing what passes as acceptable quality products, I'm fairly confident the sockets in the track lighting are cheap not designed to last a "simple" light bulb change. I refuse to blame my inability to change a bulb on PD. $40 on light bulbs and kitchen is dark. At least I didn't fall off the ladder and bust my ass.  Time to find a handyman and pay him some large amount to change 5 bulbs. 

PD sucks but things could be worse.

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Keep Me In Your Heart (song)

The music is not specific to PD. I'm a music fan and some mornings I share a few songs.

This morning I'm just feeling invisible, misunderstood and missing. Friends have moved on with their lives,

With a look of ease drawn on my face, it's easy to misread my feelings as lack of concern. I do worry and I do care. Stuck inside myself. 

Stiffness and pain. Frozen. 

I miss me. 

 

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New C/L Delivery System Sounds Promising

My gut has issues absorbing medications. Sometimes it doesn't seem to get absorbed, other times it can take hours then suddenly the medicine works. 

My doctor has been telling me about a new deivery system for carbidopa/levadopa that works like diabetes meds, with a tiny prick into fatty tissue, not only bypassing the gut but instead of spikes of medication every time I take a pill, this should have a steady flow.

Two subcutaneous preparations, ND0612 and ABBV-951, have been shown to improve OFF time/motor activity or dyskinesis in advanced Parkinson's disease. One advantage of ABBV-951, over ND061, is that it can be used alone as l-dopa therapy, whereas ND061 must be used with oral l-dopa.

Awaiting FDA approval.

I'm not giving medical advice. Everyone's PD is different and responds differently to the medications. Work with your movement disorder specialist to figure out what's best for you.

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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...

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You're Still You (song)

You're Still You

Song by Josh Groban

This is not specific to someone with Parkinson's but the title drew me in and the song is beautiful.

Through the darkness i can see your light

And you will always shine

And I can feel your heart in mine

Your face I've memorized i idolize just you

I look up to everything you are

In my eyes you do no wrong

I've loved you for so long

And after all that's said and done

You're still you after all

You're still you you walk past me

I can feel your pain time changes everything

One truth always stays the same

You're still you after all

You're still you

I look up to everything you are

In my eyes you do no wrong

And I believe in you

Although you never asked me to

I will remember you

And what life put you through

And in this cruel and lonely world

I've found one love

You're still you after all

You're still you

Source: LyricFind

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