This is amazing!! Kudos to Dr. Savica and Mel (DPF) for addressing this issue. I have always wondered why the 1st question to PWP is "when were you diagnosed with PD?" instead of "what age were you when you started to notice symptoms of PD." We know that PWP have symptoms long before the diagnosis. Seeing the YOPD group on the DPF webinar was THE FIRST time I felt at home listening to folks "like me!" But also, I was 51 and didn't feel right saying 'YOUNG" when some of the PWP had symptoms in their 30s or even 20s. But I wasn't "old" either. I felt as if I was a very active 47 yr old woman living my life, pushed into thinking and feeling like a crippled person in a matter of 3 years. I do wish there was a different name for early onset because it could narrow down research for the real causes in
Wow, just amazing. I love the fact that you don’t have a hard cut off at 50. I was diagnosed last year at 55 and had a slight tremor (ie when cold) for quite a long time. I used to be very active until a progressively worsening hip impingement stopped my. It was replaced a few weeks before diagnosis and now I am enjoying boxing and dancing in groups for regular people. You are so right when you say we should participate in groups relevant to our age. Many people in my classes have no idea I have the disease and at the moment the hip recovery is the biggest thing holding me back. It’s so good to have a scientific explanation for youngish onset vs later onset. I definitely feel more in the younger group. We definitely need more education for practitioner because being treated as if you are 75+ is not helpful when you have so much of your life left to live. I am incredibly interested in your work on women. Being at that age I have just started taking HRT. It is a combined patch. Would love to be pointed towards some literature that I can pass onto my gp. On hormones, I had very wonky periods leading to huge mood swings. I noticed that during my periods my coordination was off (very noticeable in paragliding). I wonder if this could be a predictor for the development of Parkinson’s in women. Thank you again for providing so much insight into these two areas. From starting the day a bit low, I now have tremendous hope.
Thank you so much for watching. We're glad it was helpful. You may be interested in watching some of the videos in our YOPD Women series. Periods, menopause, and HRT: ua-cam.com/video/X2Jy1S6Qt-g/v-deo.html Diagnosis and Symptoms: ua-cam.com/video/T1vdCGWr0Rw/v-deo.html Relationships and Intimacy: ua-cam.com/video/uRW2ho5ZEFc/v-deo.html Medications and treatments: ua-cam.com/video/ltvtce6FUwg/v-deo.html
I noticed that when I go in a boat fishing I have no symptoms though I am not taking any medicine when I go fishing I know it's silly remake but I don't know why maybe it's vitamin d
There needs to be a distiction made between YOPD and delayed diagnosis. I'm willing to bet most PD people could have been diagnosed a decade or even earlier if we had more competent doctors.
Thanks for your message. Diagnosis is often challenging--and not just for people who are younger. Fortunately, new diagnostic tests can help expedite the process. We're publishing a podcast in a few weeks which will cover the challenges of diagnosis and the ways some new diagnostic tests may help expedite the diagnostic process. In the meantime, this blog post may be of interest: davisphinneyfoundation.org/new-diagnosis-aid/ It's also worth considering--as will be discussed by Dr. Arash Fazl in our upcoming podcast--the ways that having an earlier diagnosis will become more meaningful and impactful once there are treatments that can slow progression. Until then, there may be some who would prefer NOT to know they were developing Parkinson's. It's a challenging subject, and again, thanks for noting it.
@@davisphinneyfdn Doctors relying on diagnositic tests is part of the problem. Often times, just listening to the patient is enough to make a very informed clinical diagnosis. Any combination of the typical Parkinson's red flag prodromal symptoms is a slam-dunk diagnosis for a confident doctor. We have too may inept textbook doctors who couldn't navigate their way though their practice without relying on a radiologist impression. This is why so many people have gone years just to get a proper diagnosis. We all know the stories. Doctors who can't think beyond an EEG or CT scan shouldn't be in the business.
I'm 44 male pharmacist diagnosed more than 3 years ago the symptoms are fluctuating even there's a period of time I stopped the medication and there was no different there's no family history doctor said I can take advantage from DBS because the symptoms are unilateral in my right side of my body
I'm 39 and I don't feel very young... It's kinda like a smack in the face being told i'm "young" when I have so many debilitating diseases. No one tells me I have "young onset erythromelalgia".
This is Chris from the Davis Phinney Foundation's content team. Thanks for your comment. You're not alone in this perspective. In fact, there was an article published wherein a group of clinicians and researchers suggested changing from YOPD (young onset Parkinson's) to EOPD (early onset Parkinson's)--pmc.ncbi.nlm.nih.gov/articles/PMC9547138/. After consulting with the Foundation's ambassadors and other people living with YOPD, the Foundation learned that the vast majority preferred YOPD over EOPD. As someone who was diagnosed with Parkinson's at 37, I have thought about this for myself, and while I go back and forth, I personally prefer YOPD because it seems more accurate and precise than EOPD. For example, YOPD puts my Parkinson's in an understandable context: compared to the more common age of onset--the last I read was that the average age of onset is 60--I was, in fact, young. All that said, I get what you mean about not feeling "young." There are physical and psychological impacts of Parkinson's that contribute to me not feeling especially "young."
That's my Dr.!
Buongiorno doc. Oil Parkinson da 10 anni o 58 anni sto seguendo ciò che lei dice e le faccio i complimenti
This is amazing!! Kudos to Dr. Savica and Mel (DPF) for addressing this issue. I have always wondered why the 1st question to PWP is "when were you diagnosed with PD?" instead of "what age were you when you started to notice symptoms of PD." We know that PWP have symptoms long before the diagnosis. Seeing the YOPD group on the DPF webinar was THE FIRST time I felt at home listening to folks "like me!" But also, I was 51 and didn't feel right saying 'YOUNG" when some of the PWP had symptoms in their 30s or even 20s. But I wasn't "old" either. I felt as if I was a very active 47 yr old woman living my life, pushed into thinking and feeling like a crippled person in a matter of 3 years. I do wish there was a different name for early onset because it could narrow down research for the real causes in
Thank you! 😊
Wow, just amazing. I love the fact that you don’t have a hard cut off at 50. I was diagnosed last year at 55 and had a slight tremor (ie when cold) for quite a long time. I used to be very active until a progressively worsening hip impingement stopped my. It was replaced a few weeks before diagnosis and now I am enjoying boxing and dancing in groups for regular people. You are so right when you say we should participate in groups relevant to our age. Many people in my classes have no idea I have the disease and at the moment the hip recovery is the biggest thing holding me back.
It’s so good to have a scientific explanation for youngish onset vs later onset. I definitely feel more in the younger group. We definitely need more education for practitioner because being treated as if you are 75+ is not helpful when you have so much of your life left to live.
I am incredibly interested in your work on women. Being at that age I have just started taking HRT. It is a combined patch. Would love to be pointed towards some literature that I can pass onto my gp.
On hormones, I had very wonky periods leading to huge mood swings. I noticed that during my periods my coordination was off (very noticeable in paragliding). I wonder if this could be a predictor for the development of Parkinson’s in women.
Thank you again for providing so much insight into these two areas. From starting the day a bit low, I now have tremendous hope.
Thank you so much for watching. We're glad it was helpful. You may be interested in watching some of the videos in our YOPD Women series.
Periods, menopause, and HRT: ua-cam.com/video/X2Jy1S6Qt-g/v-deo.html
Diagnosis and Symptoms: ua-cam.com/video/T1vdCGWr0Rw/v-deo.html
Relationships and Intimacy: ua-cam.com/video/uRW2ho5ZEFc/v-deo.html
Medications and treatments: ua-cam.com/video/ltvtce6FUwg/v-deo.html
Love Dr Savica 😃
I noticed that when I go in a boat fishing I have no symptoms though I am not taking any medicine when I go fishing I know it's silly remake but I don't know why maybe it's vitamin d
That's very interesting, Mo Bi.
There needs to be a distiction made between YOPD and delayed diagnosis. I'm willing to bet most PD people could have been diagnosed a decade or even earlier if we had more competent doctors.
Thanks for your message. Diagnosis is often challenging--and not just for people who are younger. Fortunately, new diagnostic tests can help expedite the process.
We're publishing a podcast in a few weeks which will cover the challenges of diagnosis and the ways some new diagnostic tests may help expedite the diagnostic process. In the meantime, this blog post may be of interest: davisphinneyfoundation.org/new-diagnosis-aid/
It's also worth considering--as will be discussed by Dr. Arash Fazl in our upcoming podcast--the ways that having an earlier diagnosis will become more meaningful and impactful once there are treatments that can slow progression. Until then, there may be some who would prefer NOT to know they were developing Parkinson's. It's a challenging subject, and again, thanks for noting it.
@@davisphinneyfdn Doctors relying on diagnositic tests is part of the problem. Often times, just listening to the patient is enough to make a very informed clinical diagnosis. Any combination of the typical Parkinson's red flag prodromal symptoms is a slam-dunk diagnosis for a confident doctor. We have too may inept textbook doctors who couldn't navigate their way though their practice without relying on a radiologist impression. This is why so many people have gone years just to get a proper diagnosis. We all know the stories. Doctors who can't think beyond an EEG or CT scan shouldn't be in the business.
I am suffering from Parkinson disease since 2008 and today I am 51 years old
Can you please help me with finding the correct medical treatment
I'm 44 male pharmacist diagnosed more than 3 years ago the symptoms are fluctuating even there's a period of time I stopped the medication and there was no different there's no family history doctor said I can take advantage from DBS because the symptoms are unilateral in my right side of my body
I'm 39 and I don't feel very young... It's kinda like a smack in the face being told i'm "young" when I have so many debilitating diseases. No one tells me I have "young onset erythromelalgia".
This is Chris from the Davis Phinney Foundation's content team. Thanks for your comment.
You're not alone in this perspective. In fact, there was an article published wherein a group of clinicians and researchers suggested changing from YOPD (young onset Parkinson's) to EOPD (early onset Parkinson's)--pmc.ncbi.nlm.nih.gov/articles/PMC9547138/.
After consulting with the Foundation's ambassadors and other people living with YOPD, the Foundation learned that the vast majority preferred YOPD over EOPD.
As someone who was diagnosed with Parkinson's at 37, I have thought about this for myself, and while I go back and forth, I personally prefer YOPD because it seems more accurate and precise than EOPD. For example, YOPD puts my Parkinson's in an understandable context: compared to the more common age of onset--the last I read was that the average age of onset is 60--I was, in fact, young.
All that said, I get what you mean about not feeling "young." There are physical and psychological impacts of Parkinson's that contribute to me not feeling especially "young."