Bert Shure

Fox Foundation – good general info and great connections for getting connected to clinical trials and research studies

Rock Steady Boxing – Awesome!

My understanding is that DBS is good for tremors, especially if the usual meds aren’t helping.

My two top issues are cognition and constipation. My tremor is controlled reasonably well by Rytary.

I have heard that DBS does not improve cognition and might hurt it.

Good luck!

Friends:

Watch this video. This doctor is amazing. He describes my symptoms exactly!

I was diagnosed eight years ago. I’m currently taking Rytary.

I don’t thrash or have nightmares.

Some nights I get up to urinate every two hours. I get up less if I remember to drink the large glass of prune juice with Metamucil earlier in the day!

Once or twice a week, it takes me longer to go to sleep, or I have trouble going back to sleep…[Read more]

I use an app on my phone called Medisafe. It is designed to remind me when to take my meds. It has a ton of features. I use the core features only. I currently have Morgan Freeman reminding me that it is pill time. Darth Vader and a whiny grandmother are available.

Cheers,

Bert

I use an app called MediSafe on my Android phone to track all my medications. It would be nice if it was integrated with Alexa, but it has specialized knowledge of prescriptions that is helpful.

Like Alexa, you can use a celebrity voice for reminders. I’m currently following Morgan Freeman’s advice on when to take my meds.

Cheers!

Palm Springs and Carlsbad, California, USA

I use Alexa devices to:

control lights, fans, thermostats
as an alarm clock, cooking timer, weather reports
play Spotify music and podcasts

Whenever something comes up that needs to go on the Grocery List, I tell Alexa to add it. I don’t let Amazon shop my list. I bring it up in a window, and shop in another window. This solved the problem of…[Read more]

Hi Mary Beth:

I gave blood to two different studies.

I gave DNA to 23andme.com and got a free account.

These are the only invasive studies I have done.

Cheers,

Bert

Friends:

I’ve participated in several research projects since being diagnosed six years ago. I haven’t tried out any new medicines or treatments.

Most of the opportunities came from the Fox Foundation. https://www.michaeljfox.org/join-study I get emails when they have a research study that might be a fit for me!

I fill out their quarterly…[Read more]