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

Parkie Personality?

Supposedly there is a Parkinson's personality.  A study from the year 2000 lists characteristics including, "industriousness, punctuality, inflexibility, cautiousness, and lack of novelty seeking."

Does that sound like you?  It doesn't really sound like me, or like my mom or my uncle, who also had PD.  I've noticed, at least among those still able to be mobile, a robust cheerfulness and a willingness to poke fun at ourselves.  Certainly for people dealing with annoying and constant reminders of what we can't do, I've found Parkies to be upbeat,  inventive in figuring out how to get around the barriers that our bodies present to us, and generous in sharing solutions they have learned.  But then again, I see the same things in Parkie caregivers. I have been fortunate that I haven't been hit by the depression that hits so many with PD;  I see other Parkies at exercise classes in particular, and I find exercise to be anti-depression.

A study in 2012 found that there really isn't a Parkie Personality.  That lack of novelty seeking is probably due to low amounts of dopamine (because there is no dopamine "high" from novelty), and that cautiousness is probably due to mood problems like depression and anxiety.

Speaking of studies about personality, there are even studies showing that it's harder for Parkies to lie, probably because lying requires use of executive functioning, and we're lousy at that.  I'll be the first to say, "Yup.  My executive functioning su---, um, stinks."

It seems that a lot of this work relates to finding a biomarker that identifies PD early, but I don't think we're there yet.

Image from Pixabay.

Scary overdose of supplement

Just had a real scare.  Pins and needles in the extremities that are most effected by PD were getting worse.  My neuro tracked it down to having more than twice the normal amount of B6 in my body.  Like a lot of pwp I take supplements to deal with imbalances caused by PD, but I wasn't taking B6, or B-complex, or even a multivitamin.

You can't get an overdose of B6 from food, so it had to be coming from a supplement (could have been B1, B2, magnesium, C).  I stopped all my supplements and the pins and needles are slowly improving.  It will take a few months to find out if there is any permanent damage.  So trying to make my PD better actually made things worse.

Which supplement had stuff in it that's not on the label?  Who knows?  But about one third of supplements have materials in them that aren't on the label - for example, "natural" pills to improve, um, male performance often turn out to have sildenafil in them - Viagra.  Not so natural.

How can I protect myself, when the FDA doesn't regulate supplements the way it regulates medicine?  There is actually a way - USP is a program that manufacturers can participate in, demonstrating that the contents of a supplement are actually what's on the label.  For more information on USP: http://qualitymatters.usp.org/what-letters-usp-mean-label-your-medicine

So I've gotten very conservative about supplements.  If it's prescribed and I get it via pharmacy, like my D2, that's fine.  If it is USP verified, that's fine.  Otherwise I'm not going to take a supplement.  Lesson learned. 

Image Pixabay and Free Vector

Feelings about finding "the cure"

Since my mom was diagnosed with PD about 30 years ago, I've been hearing "the cure is right around the corner" for a long time.  Turns out that it's hard to know what causes PD, so the "cure" is more elusive.

But I keep track of lots of PD research, so I know just how broadly the research is done, and how worldwide it is.  We know now that PD can have a genetic component; at the time, Mom and her brother both having PD was just an accident, or maybe something in their environment.  Besides that, nobody knew then that vigorous exercise could have such a profound effect on the disease. 

Like many of us, I scour forums and research reports for tantalizing possibilities, but more for what slows progression and what makes life easier right now - because that's where I live, in the now.

One gift that PD has given me is the ability to live today, to not waste time on the past, and not to worry about the future.  Yes, I've looked into the paperwork for a personal health care representative, and I know what extreme treatments I don't want, and when I am going to say, definitely DNR (Do Not Resuscitate).  Yes, I know that with all the exercise, I am still likely to get worse.  If there is a treatment that works for me - great!  But right now, I am enjoying that I can cook, read, weave, teach, enjoy the outdoors.

In terms of that elusive "cure," maybe I've become Scarlett O'Hara and, "I'll think about that tomorrow."