Best PD series I've seen. I was diagnosed in April 2023. Totally out of the blue. Finding an informative and upbeat web series was difficult. This site is great, the hosts are wonderful.
Hi Jessica, thank you and Brian for taking the time to share your experiences and answer questions. It means so much to the Parkinson’s community . You mentioned I believe on this episode that you take folate and iron. Have you experienced any problems with iron interactions with your Parkinson’s medications specifically Carbidopa/ Levodopa? In what form do you take it and what time of the day? I need to take a multivitamin with iron supplement but I have been told that the iron blocks the efficacy of the C/L. How is this working for you? Thanks in advance for your input.❤
thank you Jessica and Brian for another great episode. I’ve been hospitalized twice this past year in two different locations. The first was here in Youngstown and was up at the Cleveland Clinic in both cases I was able to explain to the nurses why it was so vital for me to have my Parkinson’s medication at specific times. They were very accommodating and appreciative of my explanation as to why the timing was so important. I only had one case up in Cleveland where no matter how much begging didn't get memy noon pills. They finally showed up at three with apologize. So overall, my experience has been pretty good.
Excellent episode. I wills surely share with my Primary and tomorrow at my Orhto post-op visit, so other patients would not be given such meds during their hospital stay like it
I'm in Australia and was in ED a few months ago with nausea and was told there wasn't anything they could give me due to my Parkinson's and the medications I was taking. It would be good if there was a list of options that I could have if there were any.
My YOPD group was just talking about nausea due to meds yesterday. I have read that changing up the time and dosage of your C/L might help. But again, I'm not a physician so it would be good for you to contact your Neuro to see what can be done.
Excellent info. I had Covid at the beginning of 2022 and it’s seemingly brought out my symptoms fairly quickly that year which led to my diagnosis later in 2022. I was prescribed an anti-nausea medication at that time and did not know that it may have been a factor and now I have research to do. Thank you for the great info!
Yesss, absolutely I agree that we have PD bcb of the environment. I visited Dr. Simon Yu in USA and he did a urine test that results high heavy metals, MTBE and Arsenic and Mercury and Aluminum. I’m trying to reduce my heavy metals with a good eating plan. I live in Montreal, Canada 🇨🇦 very busy city.
A few suggestions 1. ORDER 2 KITS 2. MAKE ONE LOOK DIFFERENT [decorate, add bows, ribbon. Label or tag it “EMERGENCY” Do not keep medications you are no longer taking in your EMERGENCY bag. I was on antibiotics. A few weeks before I had an emergency. I was not taking them anymore, but because they were in my medicine bag, it delayed getting to the hospital because they had to figure out what I was like anabiotic’s for. It wouldn’t take my word for it, that it was a sign of affection it was over. Also, even though I brought my medication to the hospital, they wouldn’t even give me any of my own medication’s. They did not have it available in Pharmacy. So it takes to 48 hours for them to validate the medication’s you bring with you. Which is fine if you have plans surgery but I didn’t emergency. It means you’re not getting a medication Azilect at the hospital. I had a bottle of it, but it took 48 hours for them to verify that the drugs I was bringing in we’re Azilect. I’m writing up a whole section of my website about this. It’s not up yet but it will be at gettingparkinsons.com.😅
I believe what Dr. Patel was saying is that this worsening of symptoms is usually reversible once the medication is discontinued or the dosage is adjusted. So I believe symptoms will improve after stopping the medication. But, I'm not a medical professional, so make sure you consult with your doctor!
@@thesecretlifeofparkinsons Thank you for this. I like how you summarized it in your latest episode as “medication that is dopamine depleting”… makes more sense. Go dopapeeps!!
We have not but I know people who have and found it to be successful in helping with symptoms. I started to try it back then but my kids are younger so it wasn't easy to sit for 30 min and do nothing. I'm also waiting to see if it gets approval in the U.S. It's not that I don't believe in it, because I do. But I also want to hear my doctor say it. I don't know why...it's just important to me to have my MDS recommendation.
@@thesecretlifeofparkinsons yes it is!!! thank you i think the stronger one would be less time but more expensive, ouch 5k yes it would be nice for the fda to look at this.
Best PD series I've seen. I was diagnosed in April 2023. Totally out of the blue. Finding an informative and upbeat web series was difficult. This site is great, the hosts are wonderful.
Hi Jessica, thank you and Brian for taking the time to share your experiences and answer questions. It means so much to the Parkinson’s community . You mentioned I believe on this episode that you take folate and iron. Have you experienced any problems with iron interactions with your Parkinson’s medications specifically Carbidopa/ Levodopa? In what form do you take it and what time of the day? I need to take a multivitamin with iron supplement but I have been told that the iron blocks the efficacy of the C/L. How is this working for you? Thanks in advance for your input.❤
Thanks guys this is information I will file away in case my husband has to have an operation. Always a great programme, thank you Dr Patel.
thank you Jessica and Brian for another great episode. I’ve been hospitalized twice this past year in two different locations. The first was here in Youngstown and was up at the Cleveland Clinic in both cases I was able to explain to the nurses why it was so vital for me to have my Parkinson’s medication at specific times. They were very accommodating and appreciative of my explanation as to why the timing was so important. I only had one case up in Cleveland where no matter how much begging didn't get memy noon pills. They finally showed up at three with apologize. So overall, my experience has been pretty good.
A fellow ytowner! Welcome! That’s where I grew up! Glad to hear your nurses accommodated your request for the most part!
Excellent information and advice. All Parkinson’s patients need to know this. Thank you for sharing this.
Great information to know about meds to avoid.
Thank you so much for this video. Great job!
Excellent episode. I wills surely share with my Primary and tomorrow at my Orhto post-op visit, so other patients would not be given such meds during their hospital stay like it
Great information. Thanks again.
Lots of good information. Thank you.
Dr. Patel is our Movement Disorder Neuroscientist, he just tweaked Elaine’s DBS this week. Amazing excellent results.
Very informative thank u.
I'm in Australia and was in ED a few months ago with nausea and was told there wasn't anything they could give me due to my Parkinson's and the medications I was taking.
It would be good if there was a list of options that I could have if there were any.
My YOPD group was just talking about nausea due to meds yesterday. I have read that changing up the time and dosage of your C/L might help. But again, I'm not a physician so it would be good for you to contact your Neuro to see what can be done.
Excellent info. I had Covid at the beginning of 2022 and it’s seemingly brought out my symptoms fairly quickly that year which led to my diagnosis later in 2022. I was prescribed an anti-nausea medication at that time and did not know that it may have been a factor and now I have research to do. Thank you for the great info!
I just watched no.63 and I’m sure I have not viewed all but could you please help with any laser light therapy information.
Hello Brian and Jessica, happy to connect with you today. ❤
The pump has only been in use since 23? I m in france and had a pump since 2018!
Yesss, absolutely I agree that we have PD bcb of the environment. I visited Dr. Simon Yu in USA and he did a urine test that results high heavy metals, MTBE and Arsenic and Mercury and Aluminum. I’m trying to reduce my heavy metals with a good eating plan. I live in Montreal, Canada 🇨🇦 very busy city.
I have those metals too!!
Jess are you taking something for your heavy metals?
I live in Australia I’m taking Nac
@@auroramatera7555 is the heavy metal test a common test for PD?
Please informed me on how I could provide the Parkinson hospital kit from the Parkinson’s foundation .
www.parkinson.org/resources-support/hospital-safety-kits
It could only be shipped in USA.
I would have love to receive this hospital pd kit.
@The Secret Life of Parkinson's The Parkinson's Foundation kit includes a list of drugs that should not be given to someone who has the disease.
A few suggestions
1. ORDER 2 KITS
2. MAKE ONE LOOK DIFFERENT [decorate, add bows, ribbon. Label or tag it “EMERGENCY”
Do not keep medications you are no longer taking in your EMERGENCY bag. I was on antibiotics. A few weeks before I had an emergency. I was not taking them anymore, but because they were in my medicine bag, it delayed getting to the hospital because they had to figure out what I was like anabiotic’s for. It wouldn’t take my word for it, that it was a sign of affection it was over.
Also, even though I brought my medication to the hospital, they wouldn’t even give me any of my own medication’s. They did not have it available in Pharmacy. So it takes to 48 hours for them to validate the medication’s you bring with you. Which is fine if you have plans surgery but I didn’t emergency. It means you’re not getting a medication Azilect at the hospital. I had a bottle of it, but it took 48 hours for them to verify that the drugs I was bringing in we’re Azilect.
I’m writing up a whole section of my website about this. It’s not up yet but it will be at gettingparkinsons.com.😅
For clarification, does giving haldol to a PD patient cause a temporary worsening of PD symptoms or does it cause long term damage?
I believe what Dr. Patel was saying is that this worsening of symptoms is usually reversible once the medication is discontinued or the dosage is adjusted. So I believe symptoms will improve after stopping the medication. But, I'm not a medical professional, so make sure you consult with your doctor!
@@thesecretlifeofparkinsons Thank you for this. I like how you summarized it in your latest episode as “medication that is dopamine depleting”… makes more sense. Go dopapeeps!!
Is Lorazepam a dangerous med more for PD people?
That I'm not sure. I would check with your Neurologist.
i know you two interviwed mark from the symbyx company with there laser. what did you two think of the idea of using that to help with your parkinson?
We have not but I know people who have and found it to be successful in helping with symptoms. I started to try it back then but my kids are younger so it wasn't easy to sit for 30 min and do nothing. I'm also waiting to see if it gets approval in the U.S. It's not that I don't believe in it, because I do. But I also want to hear my doctor say it. I don't know why...it's just important to me to have my MDS recommendation.
@@thesecretlifeofparkinsons yes it is!!! thank you i think the stronger one would be less time but more expensive, ouch 5k yes it would be nice for the fda to look at this.
It’s So true, some of the Parkinson’s meds make you feel worse after a while specially the antipsychotic
Have you heard about Pam Bartha, the founder of Live Disease Free Academy. To be symptoms free.