I posted episode #106 to talk about my pain that I think is related to PD regardless of what others say. So many people responded/commented that we wanted to share more.
I had the opposite situation my orthopedic doctor told me that my pain was due to Parkinson’s, but my neurologist said no it’s not. The issue is the Doctor Who said it’s because of Parkinson’s didn’t think there would be anything for me to do like Physio, which does work for me. This was very helpful hearing you talk about this topic. Thank you so much. I really appreciate you guys.
Oh in France too they keep saying its not related to parkinsons...because of bad( parkinsons) posture, and deforming dystonia on my right side I then started getting sciatica so bad that i couldnt walk and just standing washing up had me in tears every night..needles in my foot and then my foot went numb ...2 years untill they decided to do something about it.. nothing to do with parkinsons they said...they did scans and so on and had a double scoliosis and spinal stenosis..in the right shoulder( when i had bad dystonia in my shoulder)and the other leg tendinitus from compensating...i ended up haveing an operation on my back.... but i mean what the heck...nothing to do with parkinsons! Lol and had the eye twitching and also could only read with one eye because i saw double ( one eye kept drifting off to the side...charming or what?) When i was stimulated last year, my eyes are back to normal...sooo definately was parkinsons!
You mention probiotics, what should I be taken. At present I’m not taken anything. I was having a yogurt every morning and somewhere i read or someone told me I shouldn’t eat yogurt.
Check out episode #94: th-cam.com/video/epRK1Skb8pY/w-d-xo.html We talk to a gut health expert who developed her own probiotics. Those are the ones I started taking and I really like them.
I have gone to 3 doctors. One said I had a stroke. But I didn't one said I had old legs one said one said I had a pinched nerve. I have balance loss and other things
Have you seen a Movement Disorder Specialist? They are a special Neurologists that diagnose Parkinson's and other movement disorders. I recommend trying to find one and get their opinion.
I agree with both of you but, I am 72 and had Parkinson’s for 10 years now. I’m so tired of not getting good information from the 2 neurologist I have. I take 2 c/l 5 times a day. Now I’ve how a new problem two times in the last 2moths, l have had the worse nausea and vomiting to the point I could not take any medicine or drink water for 2days. Has anyone you have talk you to had this…?..
About 8 months after I was diagnosed, I started vomiting even when I had nothing in my stomach. It was painful. I was taking 1 1/2 levodopa/carbidopa 3x/ day. My neurologist decreased the dose to 1 levodopa 3x/day, it helped a little but I kept vomiting. On the next appointment, he prescribed domperidone 3x/day which helps for nausea and vomiting (but I think it is not available in the US, I'm in Canada). I still take domperidone 3x/day but with stalevo (levodopa+carbidopa+entacapone) 5x/day. I still have nausea and sometimes I throw up, but it’s a lot less frequent (maybe once every 2 months). I’ve been diagnosed 4 years ago.
Has your neurologist ever talked to you about Small Intestinal Bacterial Overgrowth (SIBO)? Check out episode #102. It might be worth looking into. From what I read, people can develop SIBO overtime, especially as Parkinson's progresses. SIBO can affect the absorption of medications, it can worsen gastro issues, and it can cause inflammation and irritability which is exacerbated with C/L. But ask your doctor to see if you can be tested for SIBO. Just a thought.
😢Since being struck with PD, I've been listening to a lot of podcasts on the subject. I don't remember where it was, but during one talk a doctor was saying how he disagrees with the statement that you don't die of Parkinson's, you die with Parkinson's He claimed, like you, that we would'nt have got the problem if it weren't for the PD.
I get an excessive amount of saliva buildup that if I don’t pause and swallow, I may spit little bubbles out onto who I trying to talk to. It’s very frustratingly embarrassing.
My dentist said it causes more plaque; so water pik every time I brush and cleanings 4x/yr. Go to a dental hygiene clinic at a community college (if you don't have insurance)
I totally agree with you both. I had frozen shoulder and plantar fasciitis as did my friend with Parkinson’s. It was definitely connected to Parkinson’s and not just a coincidence.
Especially when I know more people my age withOUT Parkinson's and they don't have these issues....but crazy enough, the few PD people I know that are around my age DO complain about these issues. Coincidence? I think not!
FYI: When you mentioned eye twitching, I have had Blepharospasms for several years and get botox injections every three months. I was diagnosed with PD last year, but have probably had it much longer than that. My neurologist told me that Blepharospasms is very common with PD. Not all eye twitching is Blepharospasms, but I would definitely keep an eye on it. (no pun intended.) I also agree with both of you. I have had lots of pain in my elbow and arms, and I also get horrible cramps in my hands, fingers, toes, legs...PS: I am so glad I found your podcast. It has really helped me. Thank you.
yup me too! It’s been 14 yrs from diagnosis at 50 although I now know my earliest symptoms at 40. Re pain I’ve had plantar fasciitis, back muscle spasms that bring me to my knees, shoulder pain all on the side my tremor started on. 💡
Opposite results for me. Just a 2 hr drive. After 3 visits the diagnosed the issue and recommended a treatment. Go every 3 months for a nerve block. Works wonders.
@jhb8426 That's Great Your Lucky and Blessed! They offered me nothing no plan no treatments no supplements no Patient trials had to practically beg for a telehealth follow up and was rushed off the phone.
I asked him about this the other day and he chuckled and said, "yeah, I don't work out as much as I should". He knows he SHOULD be working out, but doesn't. I think he goes 2-3 times/week.
I had the opposite situation my orthopedic doctor told me that my pain was due to Parkinson’s, but my neurologist said no it’s not. The issue is the Doctor Who said it’s because of Parkinson’s didn’t think there would be anything for me to do like Physio, which does work for me. This was very helpful hearing you talk about this topic. Thank you so much. I really appreciate you guys.
😊😊
Thanks for watching!
d@@thesecretlifeofparkinsons
Oh in France too they keep saying its not related to parkinsons...because of bad( parkinsons) posture, and deforming dystonia on my right side I then started getting sciatica so bad that i couldnt walk and just standing washing up had me in tears every night..needles in my foot and then my foot went numb ...2 years untill they decided to do something about it.. nothing to do with parkinsons they said...they did scans and so on and had a double scoliosis and spinal stenosis..in the right shoulder( when i had bad dystonia in my shoulder)and the other leg tendinitus from compensating...i ended up haveing an operation on my back.... but i mean what the heck...nothing to do with parkinsons! Lol and had the eye twitching and also could only read with one eye because i saw double ( one eye kept drifting off to the side...charming or what?) When i was stimulated last year, my eyes are back to normal...sooo definately was parkinsons!
Eye twitching.. yess! So damned annoying.
You mention probiotics, what should I be taken. At present I’m not taken anything. I was having a yogurt every morning and somewhere i read or someone told me I shouldn’t eat yogurt.
Check out episode #94: th-cam.com/video/epRK1Skb8pY/w-d-xo.html
We talk to a gut health expert who developed her own probiotics. Those are the ones I started taking and I really like them.
I have gone to 3 doctors. One said I had a stroke. But I didn't one said I had old legs one said one said I had a pinched nerve. I have balance loss and other things
Have you seen a Movement Disorder Specialist? They are a special Neurologists that diagnose Parkinson's and other movement disorders. I recommend trying to find one and get their opinion.
Yep. She is the one I have a pinched nerve. I'm seeing another one in Sept.
I agree with both of you but, I am 72 and had Parkinson’s for 10 years now. I’m so tired of not getting good information from the 2 neurologist I have. I take 2 c/l 5 times a day. Now I’ve how a new problem two times in the last 2moths, l have had the worse nausea and vomiting to the point I could not take any medicine or drink water for 2days. Has anyone you have talk you to had this…?..
About 8 months after I was diagnosed, I started vomiting even when I had nothing in my stomach. It was painful. I was taking 1 1/2 levodopa/carbidopa 3x/ day. My neurologist decreased the dose to 1 levodopa 3x/day, it helped a little but I kept vomiting. On the next appointment, he prescribed domperidone 3x/day which helps for nausea and vomiting (but I think it is not available in the US, I'm in Canada). I still take domperidone 3x/day but with stalevo (levodopa+carbidopa+entacapone) 5x/day. I still have nausea and sometimes I throw up, but it’s a lot less frequent (maybe once every 2 months). I’ve been diagnosed 4 years ago.
Has your neurologist ever talked to you about Small Intestinal Bacterial Overgrowth (SIBO)? Check out episode #102. It might be worth looking into. From what I read, people can develop SIBO overtime, especially as Parkinson's progresses. SIBO can affect the absorption of medications, it can worsen gastro issues, and it can cause inflammation and irritability which is exacerbated with C/L. But ask your doctor to see if you can be tested for SIBO. Just a thought.
@@thesecretlifeofparkinsons no I’ve never heard of that , I will look at the episode now. Thank you very much
😢Since being struck with PD, I've been listening to a lot of podcasts on the subject. I don't remember where it was, but during one talk a doctor was saying how he disagrees with the statement that you don't die of Parkinson's, you die with Parkinson's
He claimed, like you, that we would'nt have got the problem if it weren't for the PD.
Yes, I remember Doctor Patel said that.
Does anybody suffer from excessive saliva to the point where its hard to talk ?
Not to that extent but it has increased.
I get an excessive amount of saliva buildup that if I don’t pause and swallow, I may spit little bubbles out onto who I trying to talk to. It’s very frustratingly embarrassing.
@@jimmymcguire8878 It's frustrating. Combined with swallowing issues, I have to remember to swallow or risk inhaling my own spit.
Yes, it's horrible, it's my least favourite symptom at the moment!
My dentist said it causes more plaque; so water pik every time I brush and cleanings 4x/yr. Go to a dental hygiene clinic at a community college (if you don't have insurance)
I totally agree with you both. I had frozen shoulder and plantar fasciitis as did my friend with Parkinson’s. It was definitely connected to Parkinson’s and not just a coincidence.
Especially when I know more people my age withOUT Parkinson's and they don't have these issues....but crazy enough, the few PD people I know that are around my age DO complain about these issues. Coincidence? I think not!
As one with pd.this is a huge issue with dr'S. DR'S TEND TO HABE BLIEFS EITHER EVERY THING is pd or nothing.totally understand
Some times excessive saliva but no problem in talking
Great article below
Los doctores no saben nada de cómo un paciente de Parkinson realmente se siente
FYI: When you mentioned eye twitching, I have had Blepharospasms for several years and get botox injections every three months. I was diagnosed with PD last year, but have probably had it much longer than that. My neurologist told me that Blepharospasms is very common with PD. Not all eye twitching is Blepharospasms, but I would definitely keep an eye on it. (no pun intended.) I also agree with both of you. I have had lots of pain in my elbow and arms, and I also get horrible cramps in my hands, fingers, toes, legs...PS: I am so glad I found your podcast. It has really helped me. Thank you.
Appreciate it!
yup me too! It’s been 14 yrs from diagnosis at 50 although I now know my earliest symptoms at 40. Re pain I’ve had plantar fasciitis, back muscle spasms that bring me to my knees, shoulder pain all on the side my tremor started on. 💡
Sounds like driving to the Mayo Clinic 6 hours thinking they have more info....a plan of action and.....expertise.......ended up.....a waste of time
Opposite results for me. Just a 2 hr drive. After 3 visits the diagnosed the issue and recommended a treatment. Go every 3 months for a nerve block. Works wonders.
@jhb8426
That's Great Your Lucky and Blessed!
They offered me nothing no plan no treatments no supplements no
Patient trials had to practically beg for a telehealth follow up and was rushed off the phone.
Sorry to hear that. I hope you found someone that works better for you!
Did Brian’s workout routine change after DBS? What is his routine?
I asked him about this the other day and he chuckled and said, "yeah, I don't work out as much as I should". He knows he SHOULD be working out, but doesn't. I think he goes 2-3 times/week.
at 10:52 you talk about probiotics what does it do for you?
What I have noticed on the probiotics is that I'm more regular and I stayed healthy during the winter when my entire family was sick.