Parkie Blogs? There are Parkie Blogs?!

Yes.  Many of them.  There are funny ones (which I already wrote about here), and scientific ones, and reflective ones.

Just a few.

Scientific:  https://scienceofparkinsons.com/  May be more than you want to know, but he's thorough.

Reflective (my life with PD):  http://parkinsons.stanford.edu/pdblogs.html

A good collection, including institutional blogs (good for research updates):  https://www.healthline.com/health/parkinsons/best-blogs-of-the-year#1

How can you keep track of them?  You can bookmark them, and go check them out every few weeks.

Or you can use a Reader that collects blog posts and tells you when there are new ones - I use Feedly.  All I have to do is open my Feedly account to see who has new posts.  If you'd like to use Feedly (it's free), see this post.

Happy reading!

He's got the "cure" for Parkinson's. Right.

On his videos, Lonnie Herman swears that he's got the cure for Parkinson's, cancer, interstitial cystitis,  you name it.

He uses lots of medical terms in his PD video.  He found strep in the patient's hematopoetic stem cells (bone marrow).  How?  He found it in the brain.  How?  He found a viral infection and chemicals in the brain.  How?  But don't doctors have to use actual tests, like blood tests, MRIs, biopsies, and so on to look for disease?

An infection in the teeth infected the patient's retina, and "I'm making remedies."

Herman also talks about athetoid movements and how a Parkinson's patient on his video has them.  Except, ahem, athetoid movements don't happen with PD; they happen with cerebral palsy.

Lonnie Herman is a Florida chiropractor who uses his Youtube channel to sell his services.  He is actually licensed to be a chiropractor in Florida (I checked).  But he claims to have "11 years of postgraduate study" but where?  His Facebook page lists the Carrick Institute for Graduate Studies, but when I search for recommendations from them of their graduates in his town, his name is absent from the list. Hm.

I was trying to figure out how he found all these infections in places where you could only find them via biopsy (surgical removal of tissue).  But, um, how does he biopsy the eyes, the bone marrow, and several parts of the brain? 

But then I hear him say that he uses bioresonance.  So what the heck is that?  According to Wikipedia, bioresonance therapy is a "pseudoscientific medical practice in which it is proposed that electromagnetic waves can be use to diagnose and treat human illness."  So he uses this bogus machine to diagnose and miraculously cure pretty much everything?  To quote Dr. Andrew Weil, speaking of bioresonance: "No evidence supports any of these claims.  In fact, the little scientific evidence that does exist refutes them." 

So, once again we have somebody selling hope.  Only, once again, it's snake oil.  .

My real job - exercise

Since I was the original "couch potato," it's amazing how much I exercise.  But once you get into the habit it's hard to quit.  Since exercise seems to be neuro-protective and may slow PD progression, this getting into the habit is a win-win. 

Typical day:

30 minutes on the treadmill working on stride and gait.  I also try to push myself cardio-wise, but since my right foot isn't quite cooperative, I don't try to be too speedy.  I've created a channel on Pandora that's mostly the right tempo (originally used it for boxing practice).  I can hear if I'm stepping heel-toe and if I start dragging my feet.  My wonderful husband set up an old computer and monitor so that I can watch videos (youtube has lots of videos that work with treadmills).  I'm always dealing with a little cognitive dissonance - I would not be able to walk down the rim trail on the Grand Canyon which is very bumpy - but the difference between what I see and what I feel forces me to focus, so it's a good thing.  Not boring at all, thanks to the videos.  My stride is longer and stronger, and I find that I'm leaving my cane places because I forget it!

Unless I have boxing, 30 minutes on the NuStep, an elliptical, but a recumbent elliptical, so it's not hard on your knees.  I used this in my old gym and love it.  I can see the youtube videos from the NuStep so I'm not bored.  I can just use my feet, just use my arms, or use both.  This is my serious cardio workout for the day.  Pricey but worth every dime.

Voice and swallow exercises 2-3 times a day, usually in the car.  Why the car?  Because the voice exercises make my dog howl (maybe he thinks I'm in pain).

Leg strengthening exercises like squats that I got from my PT.  I do these throughout the day, when I'm waiting for the dog to pee, brushing my teeth, and so on.

Balance that includes some Tai Chi - 3-4 times a week.  I have a DVD (Jane Adams - Balance & Strength Exercises for Seniors).

Rock Steady Boxing - 3 times a week.  This is exercise, support, friendship, and sweat.  Favorite times of the week.

When I stop work in June, I hope to add dance, maybe a Tai Chi class, maybe a water movements class.

NuStep image from Amazon.com.

9zest "free trial"

A warning about the 9Zest app that is supposed to provide customized exercise routines for pwp (and also for people with MS and strokes).  Nice idea, poor implementation.

There is a free-trial period, but there’s no way to cancel at the end of the “free trial” unless you email customer service.

Why didn’t I want to keep using the app?

• Not a human voice – a machine voice (circa 1997, not Alexa).
• Poor English in almost every sentence – missing words, especially.
• Garbled directions.
• Do you think marching back and forth for 5 minutes is fun or interesting?  How about taking pinches from a piece of clay for 5 minutes, using only thumb and index finger?  Me neither.  Each exercise lasts between 2 and 5 minutes – with a machine voice that is either constant, interrupting itself, or disappears.  There is no music.
• If you have multiple goals, you’ll start seeing the same exercises showing up again.  Want to march back and forth for another 5 minutes?  In silence, except for occasional notices that you’ve completed 110 seconds… 130 seconds…
• Inaccurate lists of equipment needed – I assemble everything they say I need, only to find that, wait a minute, I need a ring to throw a ball through.  What?  And a bunch of balls to throw through the ring.  Didn’t you tell me that I need one ball? 
• Lie down.  Stand up. Sit down. Lie down.  – no thought has been given to people who might need extra time to get down or get up, never mind keeping all the similar exercises together.

If you want to exercise, even at home, there are many choices:  included in this blog post Finding Exercise, and in APDA's booklet Be Active and Beyond.

9Zest?  Nice idea, but the execution is lousy. 


Image: Pixabay