Can red light help?

Recently, my husband made me a bucket like a hat filled with red lights and with infrared lights that shine on my head.

I wear this twice a day for 20 minutes.  Why?

Well, there is some research that seems to show that red and near infrared light helps neurological conditions. And there are active clinical trials in Australia (article about it), (here's the link to the actual trial) and elsewhere related to Parkinson's and this kind of light.  This paper talks a bit about how they made a helmet.

My husband used red lights and infrared lights inside, there's padding on top, and a buckle with wide elastic so that it stays on straight.  It's easy to pull the wires out by accident (ask me how I know), so I plug in the bucket (it plugs into a computer power supply) and then put it on.  After 20 minutes, I take it off, then unplug.  Though you can't see it, he etched giant glasses just like I wear on the front, and hair on the back.  The pictures help me keep track of the front. Here you can see what it looks like when lit.

Even with holes drilled towards the top, it still gets a bit warm, which feels good in cool weather.

Does this have an impact?  We'll see.  Since I started a curcumen supplement at around the same time, and I've been slowly increasing the time that I spend on Qigong, it is getting hard to say what works.  But this bucket certainly makes me feel loved.

Cognitive Testing? Am I losing it?

A few months ago, I had cognitive testing done - partly because I feel like my brain is not as effective (multi-tasking and memory!) and partly because I need a baseline.

The personable psychologist and grad student interviewed me first.  This was partly to break the ice, and partly to see where my deficits might be.  Current events (the psychologist was alarmed by something that I said that seemed overly simplistic, but the grad student assured him that I was just quoting a public figure), day of week, what I think my deficits are (can't think of the word that I want to say, and multi-tasking).

The grad student then gave me a couple of hours of tests.  Draw copying another drawing (apparently the order you do it in is revealing).  Remember a list of words - then come back to that task periodically as you're taking other tests.  Judgments about images.  Stroop (read the word for a color, not the different color that's printed there, a really fiendish task.)  What's a word for...

The one task I really had trouble with was generating a list of words starting with a letter, but also being sure that it's not a variant of the word (such as sail/sailing/sailed).  I got stuck on keeping track of all the rules, and could hardly generate any words.   The was a multi-tasking (officially known as executive function) test. 

I took a bathroom break, a snack break, and even a medication break.  Then I went home for a few weeks while the psychologist scored the tests and wrote up the result.

Back at the psychologist's office, for the results:  no surprise, multi-tasking/executive functions is tough for me (very common with PD).  But memory was okay (I was able to think of the words that were asked for during testing).  I'm doing really well, and have some real strengths (geometric figures).  My memory - remembering that list of items - is quite good.  I've got a little bit of cognitive impairment - not noticeable because of my cognitive strengths - but it's there. 

So I've lost some of my cognitive abilities, so another thing to fight against.

Besides lots of different kinds of exercise, what have I done to cope? 

I tried brain games, which are ultimately boring; in addition, since improvement is tied to speed and dexterity, I couldn't "improve" due to physical limitations, not cognitive ones; the research supporting brain games is questionable, anyway.

I read.  Not as much as I used to, but still the daily paper, many blogs, and several books a week.  I have less patience for poorly written material, and am less likely to push myself to finish - equal parts less attention and unwillingness to waste my time.  Reading is supposed to challenge the brain, and I certainly use it for that - with fiction, with opinion, and with non-fiction.

I still teach, online only.  I don't have to keep track of everything happening in the physical classroom, while also presenting the lesson and making sure that's effective; this became physically and mentally exhausting.  Instead, I can focus on individual students, how to help them understand, how to help them develop new skills and overcome deficits.  This is mentally challenging, but as I do this sitting down, it's not physically overwhelming any more.

Other things that challenge my brain are participating in online PD forums, helping moderate a Facebook PD group, and assisting in a research project evaluating whether or not PD researchers share their results. 

I already eat a healthy diet, with at least 6 to 7 vegetables and fruits daily, eat mostly vegetable proteins, avoid processed food, and avoid simple carbohydrates.  I take some B vitamins where I have deficits, and I've added curcumin - the nanoparticle version can cross the blood/brain barrier, and there's evidence in healthy people that this version of curcumin can improve cognition.  Since I started taking it, I've had less trouble with the tip-of-the-tongue issue (what is that word?), so maybe it's helping. 

Images from Pixabay.

Textured insoles for balance? Will these improve my PD?

A few months ago, I read about textured insoles that are supposed to help you be more aware of your proprioception (your sense of where your extremities are and how they're moving), and thus improve your gait (how you walk) and your balance.  They're a bit pricey ($50), but I'm open to trying out what might help, so I ordered some. You can cut them to precisely fit your feet.   http://nabosotechnology.com/proprioceptiveinsoles

I wore them sometimes to Physical Therapy where I walk a lot and really get put through my paces, and around the house.  For weeks.  They seem to help me take a sharp corner (going around furniture at home).  Otherwise, I haven't seen a benefit.

What does the research say? A meta-analysis published in early 2017 found that:
"Textured/Stimulating insoles had no significant effects on variables of gait and balance,"
and the quality of the studies available was inadequate. (A meta-analysis reviews available research studies, evaluates how well the studies are done, and evaluates what the studies show.)  I've read many studies of these insoles that said, basically, textured insoles seem to help, or it's possible they help. (I believe the expression is, Damned by faint praise.)  At the same time, the studies had few research subjects and similar problems.  So I guess I am not too surprised by this meta-analysis, which I discovered after I purchased the insoles:    https://www.sciencedirect.com/science/article/pii/S0966636216306099

I wore the insoles, increasing the time gradually, as they kind of poke into your feet.  Weeks later, I was still feeling poked, which I guess they are supposed to do.  But did they lengthen my stride?  No.  Did they improve my balance?  No.  Did they improve my gait?  At all?  No.

Now, I've seen videos that seem to show miraculous improvements from using these insoles - a woman barely able to walk starts to wear these insoles and then is able to run.  Too good to be true?  I doubted I'd see a miracle in my own case because the research studies were underwhelming.  I hoped I'd see some improvement.  But all I have is sore feet.

Images from the websites above.

What I'm trying now... Qigong

I've been exploring Qigong (chi-GUNG), which is related to Tai Chi, and which I've learned about from my Tai Chi teacher.  Since my teacher has been ill, I've been pursuing this on my own, via books and online courses, as well as continuing what I learned in class.

This exploration lead me to Bianca Molle, who seems to have beat back PD by spending three hours a day doing Qigong; she used DVDs from Mington Gu who now has online courses at  The Chi Center.     I took his online class for some time, but, frankly, it moved too slowly for me after awhile. 

Then I looked into what Bruce Frantzis has to offer, as he has some really well-thought of books and courses.  I have been reading his book about Dragon and Tiger Qigong (which is Qigong specially designed for healing).  I learn physical things by watching and following along, so I have been taking an online course from one of his students, Bill Ryan; this has been enormously helpful for helping me learn the Dragon and Tiger form, combined with the book. Also recently have returned to Dr. Paul Lam's DVD/download Tai Chi classes.  While the Qigong leaves me feeling refreshed, it doesn't do much to challenge my balance, and the Tai Chi provides that.

Right now, I spend 30-45 minutes a day working on my practice.  Practice has multiple meanings, including - to repetitively work on something to get better at it.

The Davis Finney Foundation funded research that evaluated many existing studies (called a meta-study) and found that Tai Chi and Qigong do help PD symptoms. 

I've been doing  a variety of Qigong practices for about 6 months.  I've noticed an improvement in non-motor symptoms:  urinary urge is less, sleeping better (able to return to sleep more quickly), small motor skills like typing and writing have improved a little.  Dry eyes are a bit better, too.  Cognition is a bit better - less problems with word-finding (long may that last).  On the other hand, rigidity and slowness are the same, as is blood pressure (too low).  The one thing that's not getting better that I really want to improve, still, is balance - trouble with stairs and curbs, lurching like a drunk.  Grrrrrr.  Still, there are brief times (under a minute) when my walking is normal, which hasn't ever happened, so I'm keeping an eye on this.

Lam and Frantzis images from Amazon.