I had a really interesting email from a chap who was diagnosed with Parkinson’s disease about a year ago. He had read my recent posts on apathy and he then considered the years leading up to his diagnosis. He had first noticed losing his usual motivation levels some twenty five years earlier. He recalls frustrating discussions with his doctor about it. He couldn’t understand why he was unable to get excited about things any more. He definitely didn’t like it. Life with waning excitement was not what he had intended.Continue reading “Apathy is an early symptom”
Al has Parkinson’s and he started using a two-wavelength Duo Coronet in July last year, once daily in the morning.
I had an email from Al the other day, and I have his permission to quote his very interesting comments.
‘If I miss a day session, there is a gradual change in me. Bad dreams come back, my tolerance level goes way down and my lethargy goes way up.’Continue reading “Three days”
Apathy is “a frequent and disabling” symptom of Parkinson’s disease. You’d assume, given how frequently apathy occurs and how disabling it is, that the main websites supporting people with Parkinson’s would have lots of information about apathy.
You’d be wrong.Continue reading “Apathetic about Apathy”
Apathy is a prominent and nasty symptom of Parkinson’s disease. One researcher described it as “one of the most disabling” of all symptoms. Apathy can appear years before a diagnosis of Parkinson’s is made. At least a third of people with Parkinson’s will experience it and once it starts it never goes away. Apathy might look like depression but it is a very different symptom. Anti-depressant medication won’t help at all. Apathy relentlessly destroys all motivation and interest in life. Once present, there is no turning back because there is no treatment for apathy…Continue reading “Parkinson’s and apathy”
LED strips are great for DIY projects, such as Cossack light hats, lights for helping arthritic fingers, a LED light wrap for back pain and so on.
Here’s a photo of a Cossack light device – you can see the LED strip winding around and around the frame.
LED strips should only be used for DIY projects.
You can make your own light hat using LED strips:
- Cossack instructions
- Cossack DIY movie
- Cossack photos
- Why I recommend making a Cossack rather than an Eliza bucket hat.
If you are thinking of buying a light device, make sure that it is made with individual LEDs, not a LED strip.
A device with individual LEDs is more likely to last, it will have better heat management, and it is more likely to be value for money.
As an example, a few weeks ago I made a LED strip device for my back. It uses standard gel-covered LED strip – the sewing is a bit weird but it was functional and felt pretty nice on my back after a day in the garden.
When I first made it, all three LED strips worked very happily. But as of yesterday, one of the LED strips decided to stop working part-way along its length. LED strips do that – they just stop lighting up.
There’s not much I can do about the bung LED strip. I’ll continue to use my home-made device on my back for the moment, but if more of the LED strips decide to conk out, I’ll pull it apart and make another.
The lesson is clear, though.
If you are thinking of buying a commercial light device, avoid those made with LED strips.
I’ve been observing people with Parkinson’s disease using trans-cranial red and near infrared light devices for nearly four years now. I’ve learned lots of things, especially how little I knew about the realities of living with this rotten, slippery disease.
Here’s a curious thing I’ve noticed.
Continue reading “Connecting with others”
Photobiomodulation can help people with Parkinson’s reconnect with others