Thank you for all you do. I have had Parkinson's symptoms since 2006. I was finally diagnosed with Parkinson's and REM sleep disorder in late 2023. Without your videos I would be alone in a boat on a great big sea. Keep up the good work.
I've been living with PD since 2018 and have dyskinesia, tremor and dystonia. Although DBS surgery didn't completely alleviate my symptoms, I've found Vyalev to be incredibly effective - I've had a huge reduction in symptoms and my energy is back!
There are 2 other devices that work using vibration, one is called Cala Trio and the other is VILIM Ball. Cala Trio is FDA approved, not sure about VILIM Ball. Cala is a wrist devise also.
Cala is also over $3,000. Medicare only covers it for Essential Tremors not, PD. And you have to pay for a monthly subscription. Thanks for sharing the names though. I didn't know these existed.
There was one place in US that was recruiting for Cayman Island if I'm not wrong and that was 2 years ago when I was diagnosed and when we looked into it they said I would cost me $50,000 to do that but it would guarantee me if it gets approved to be the first to get there treatment in the US. When I brought it up with my doctor he said do not believe that. I also had another doctor who told me that the stem cells specially the ones that are done outside the country are not real so I'm not sure what they actually give you. I wouldn't mind doing it in Europe because studies have very strict rules to pass through but doing it in some other places I would be cautious especially across the border at Tijuana. And another thing there has been many times even with myself and that I've had placebo effects and I'm finally learning that I need to give it time to work and that's when I know if it's really placebo or not. Be cautious about trying these out and be sure what's given to you is what is exactly promised. By the way Jessica I can't find the other video that you asked me about my dry needling I've had three of them done and I'm able to have a lot more movements in my arm. No need for additionals dry needling for now. I wasn't even sure it was called driving when I asked my doctor because it was hurting so bad that I told him I feel like I want to stab my forearm with a needle to release the muscles there..😅 But I'm thankful that I did it. And now with additional therapies and additional findings I'm able to have a lot more movement in my arms that I thought would never happen because I almost read paralyzed at some point I'm very depressed. 😅
Hi Jess & Brian, is there anyway someone could access your videos (#1-#125) in order? (ie where one could skip over a subject that wouldn't apply to them) Tks
Yes there is. Select the secret life of Parkinsons in your subscriptions. Next, select videos. Next, select all. This should take you to podcast number one, you can scroll through every podcast we have produced in the order that we’ve produced them. I hope this helps! Steve Brandenburg, podcast producer
Please ask for Rytary. It's worth trying!!! Reduces symptoms of fatigue, dyskinesia, and any dizziness upon standing. Changed my life!!❤ That's my story, and I'm sticking to it. And I cannot say enough about quitting sugar!! No sugar=better days!!🙌🎄
Three months into my DBS post surgery. Metronic device opted to have placement and battery placed at same time. My logic, I am under for surgery best to get it sorted in on go. Curious did you do the genetic test?
@thesecretlifeofparkinsons Reason I ask. I know placement is specific to your needs. Mine being the stn location. Plus with the genetic test coming back positive. If not mistaken if I recall correctly. Nuro states with the genetic test. This also confirms better placement. Not sure if this is a question worth asking your doc on placement choice. I am 11 down to 6 meds with hope to go lower.
Thank you for all you do. I have had Parkinson's symptoms since 2006. I was finally diagnosed with Parkinson's and REM sleep disorder in late 2023. Without your videos I would be alone in a boat on a great big sea. Keep up the good work.
I'm so glad you found us and even happier that you no longer feel alone. That is the worst feeling
I've been living with PD since 2018 and have dyskinesia, tremor and dystonia. Although DBS surgery didn't completely alleviate my symptoms, I've found Vyalev to be incredibly effective - I've had a huge reduction in symptoms and my energy is back!
That is so great to hear! Do you feel comfortable wearing it all the time? How is it to sleep with?
I'm not feel comfortable carrying it, is a kind of heavy and bulky
Any updates? I have a new person at the gym who is going to try it soon.
Very helpful and informative episode 😊 Keep up the good work ❤
There are 2 other devices that work using vibration, one is called Cala Trio and the other is VILIM Ball. Cala Trio is FDA approved, not sure about VILIM Ball. Cala is a wrist devise also.
Cala is also over $3,000. Medicare only covers it for Essential Tremors not, PD. And you have to pay for a monthly subscription. Thanks for sharing the names though. I didn't know these existed.
There was one place in US that was recruiting for Cayman Island if I'm not wrong and that was 2 years ago when I was diagnosed and when we looked into it they said I would cost me $50,000 to do that but it would guarantee me if it gets approved to be the first to get there treatment in the US. When I brought it up with my doctor he said do not believe that.
I also had another doctor who told me that the stem cells specially the ones that are done outside the country are not real so I'm not sure what they actually give you. I wouldn't mind doing it in Europe because studies have very strict rules to pass through but doing it in some other places I would be cautious especially across the border at Tijuana. And another thing there has been many times even with myself and that I've had placebo effects and I'm finally learning that I need to give it time to work and that's when I know if it's really placebo or not. Be cautious about trying these out and be sure what's given to you is what is exactly promised.
By the way Jessica I can't find the other video that you asked me about my dry needling I've had three of them done and I'm able to have a lot more movements in my arm. No need for additionals dry needling for now. I wasn't even sure it was called driving when I asked my doctor because it was hurting so bad that I told him I feel like I want to stab my forearm with a needle to release the muscles there..😅 But I'm thankful that I did it. And now with additional therapies and additional findings I'm able to have a lot more movement in my arms that I thought would never happen because I almost read paralyzed at some point I'm very depressed. 😅
Dry needling is episode #122.
Hi Jess & Brian, is there anyway someone could access your videos (#1-#125) in order? (ie where one could skip over a subject that wouldn't apply to them) Tks
Yes there is.
Select the secret life of Parkinsons in your subscriptions.
Next, select videos.
Next, select all.
This should take you to podcast number one, you can scroll through every podcast we have produced in the order that we’ve produced them.
I hope this helps!
Steve Brandenburg, podcast producer
There needs to be an improvement in the basic PD meds, L-dopa. The side effects like tiredness and dyskinesia are discouraging.
Yeah, the dyskinesia was a fun surprise. My left arm seemed like it had a mind of its own.
Please ask for Rytary. It's worth trying!!! Reduces symptoms of fatigue, dyskinesia, and any dizziness upon standing. Changed my life!!❤ That's my story, and I'm sticking to it. And I cannot say enough about quitting sugar!! No sugar=better days!!🙌🎄
agree
Would you ask Marcus how was his balance and walking after his DBS..?
Will do!
Three months into my DBS post surgery. Metronic device opted to have placement and battery placed at same time.
My logic, I am under for surgery best to get it sorted in on go.
Curious did you do the genetic test?
I did not, Brian did and he does not carry the PD gene. Not sure about Marcus.
@thesecretlifeofparkinsons Reason I ask. I know placement is specific to your needs. Mine being the stn location.
Plus with the genetic test coming back positive. If not mistaken if I recall correctly. Nuro states with the genetic test. This also confirms better placement.
Not sure if this is a question worth asking your doc on placement choice.
I am 11 down to 6 meds with hope to go lower.
Jess have you heard about VYALEV
foscarbidopa/foslevodopa Injection for subcutaneous use
Yes, I have the information and I saw a sample that a rep brought to the gym. I'm just not sure about carrying something like that all day.