Learning Our Way Out of Parkinson's

[jimcaster]

I encourage you to subscribe to the insightful blog, PDWise, by Allan Cole. This story about his obsession with "learning his way out of Parkinson's" really resonates with me. I did exactly the same thing. I know many of you did, too. My obsession is slightly less strong with the passage of time. This story is an excellent reminder that we should live for today. Let tomorrow come tomorrow.

pdwise.com/stories/let-tomo...

[Kwinholt]

Jim, You are so right. At the beginning of my diagnosis I thought I had it all figured out , with meds, exercise, living with it. I was going to tell everyone what they needed to do. Lol. Parkinsons is sneaky and I was wrong. It is stronger then me. I’m not boo hooing just being realistic. I am now on the path to DBS. Don’t get me wrong exercise, meds and living in the moment is the way to live each day. Take care. Karen

[jombi in reply to Kwinholt]

Hi. Can you share when and where DBS? Me too.

[Kwinholt in reply to jombi]

Jombi, I’m in California. I have 2 more evaluation appointments then the team of dr all meet to go over all my records and tests to make complete sure I’m a good candidate and area of the brain is best for me for the leads in the brain. There are 3 areas they can put the leads. Ultimately the final decision is mine. Where are you located and where are you at in the evaluation process? Karen

[Seamus6]

Quite agree Jim.

Of course the challenge is to both live in the moment, as well as make some plans to facilitate enjoyment of the future.

A future where the signposts that we would normally rely upon - have been removed!

[laglag]

How is your red light therapy going?

[jimcaster in reply to laglag]

It's going well. I believe I am more mentally sharp, my handwriting is still good -- even many hours after sinemet. I have at least a little sense of smell. My back doesn't tighten daily. I use my right (affected) hand for routine tasks much more often. I don't know for sure that those improvements are attributable to the red light, but it's the only change I made. Thanks for asking. 😊

[Lizzy9 in reply to jimcaster]

Hello jimcaster ~ if you don’t mind me asking ~ how long had you been diagnosed with PD when you started using the Red Light Therapy and how long using it till you could tell it was helping (or seemed to be helping)? We just got ours. My husband was diagnosed 12/2020.Thank you! Gail

[jimcaster in reply to Lizzy9]

Hi, Gail. I was diagnosed in May, 2018. I began using the red light in January of 2021. I noticed that I could write normally even without Sinemet approximately one month after using the red light. Other gradual improvements, including improvement to my sense of smell occurred after about 6 weeks.

[Lizzy9 in reply to jimcaster]

Thank you Jim! That is very helpful. The “wait and see” is the hard part. We loaned ours to our son for sleep issues and just got it back so this is day one.

[mauigirl18 in reply to jimcaster]

How often do you use it Jim? I just received mine a few weeks ago. I use it in the evenings for 20min. 10 min each set of lights.

[jimcaster in reply to mauigirl18]

I use the coronet duo which has two 12 minute settings so it's 24 minutes per session. I try to do two sessions per day, but sometimes I only get around to it once per day.

[Gratitude60]

Thanks, Jim. This is great.

[Lizzy9]

Thank you for the link!! I checked it out and looks very encouraging so I did subscribe. Have a fabulous day!!