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Bert Shure replied to the topic Fatigue and Brain Fog in the forum Parkinson's Disease Symptoms 2 weeks, 4 days ago
Hi Elaine:
I switched to Rytary because of brain fog and afternoon fatigue.
My wife hated it when I would doze off while talking to her in the early afternoon.
I feel that it reduced brain fog as well.
It is a lot more expensive than generic Sinemet, but it works.
I reread your email, and I’ll take a stab at your questions.
My questions…[Read more]
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Bert Shure replied to the topic Where do you live? in the forum Diagnosis Information and General Questions 3 months, 2 weeks ago
US, California
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Bert Shure replied to the topic What are your favorite Parkinson's organizations? in the forum Parkinson’s Disease Awareness and Advocacy 4 months, 2 weeks ago
Fox Foundation – good general info and great connections for getting connected to clinical trials and research studies
Rock Steady Boxing – Awesome!
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Bert Shure replied to the topic What are your thoughts about Deep Brain Stimulation? in the forum Parkinson's Disease alternative treatments 4 months, 2 weeks ago
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!
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Bert Shure replied to the topic Constipation Treatments in the forum Living With Parkinson's Disease 5 months, 1 week ago
Friends:
Watch this video. This doctor is amazing. He describes my symptoms exactly!
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Bert Shure replied to the topic Are you able to sleep through the night? in the forum Parkinson's Disease Symptoms 5 months, 2 weeks ago
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]
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Bert Shure replied to the topic How do you remind yourself to take your medication? in the forum Parkinson's Disease Medications 10 months ago
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
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Bert Shure replied to the topic Do you use Alexa or Google Home devices? in the forum Living With Parkinson's Disease 1 year, 1 month ago
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!
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Bert Shure replied to the topic Where do you live? in the forum Diagnosis Information and General Questions 1 year, 2 months ago
Palm Springs and Carlsbad, California, USA
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Bert Shure replied to the topic Do you use Alexa or Google Home devices? in the forum Living With Parkinson's Disease 1 year, 2 months ago
I use Alexa devices to:
control lights, fans, thermostats
as an alarm clock, cooking timer, weather reports
play Spotify music and podcastsWhenever 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]
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Bert Shure replied to the topic Are you participating in any clinical trials? in the forum Parkinson's Disease alternative treatments 3 years ago
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
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Bert Shure replied to the topic Are you participating in any clinical trials? in the forum Parkinson's Disease alternative treatments 3 years ago
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]
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Bert Shure became a registered member 3 years ago