The autonomic nervous system controls blinking of the eyes. Those of us with PD should be mindful and blink often and use eye drops to keep your eyes moist. Don’t get dry eyes this could damage your cornea. 8:03
I have about six battery operated rechargeable mini fans for my wife who has PD and whose face is almost always red and hot. She carries one with her wherever we go. They really help!
I have multiple symptoms and my MD offers no treatment. I am in physical therapy for it however. I discovered that I didn't walk swinging my arms, I didn't walk in a strait line. Run into things, furniture and door jambs etc. Swinging my arms have increased my ability to walk more steadily. Staring the B1 therapy recently.
Hey Auggie(s)! I’m so thrilled that you are already doing therapy for this and that you have noticed how big an impact that arm swing had in your balance. Keep up the good work!
I’m glad you enjoyed the video. Do you feel this is something to do with PD or is there also maybe some issues going on with testosterone that are resulting in a true male menopause? In reality, both could happen
My wife has PD and the most troubling thing for her is that her face gets very hot and red for long periods of time, and she says "I'm burning up!" .I use cold cloths on her face but that only does so much. Any advice you could give would be greatly appreciated!
Hi Tom, thanks for the question. That’s not a common complaint I’ve heard about over the years, but my money would be on temperature dysregulation. PD causes damage to the autonomic nervous system and this is just one potential issue. It’s possible that your wife experiences this as flushing and redness, for whatever reason particularly in the facial area. Have you tied this down to a pattern of time? Often these types of symptoms show the most when wearing off between doses of levodopa
@@parkinsonsdiseaseeducation Hello doctor. I've tried to notice some sort of pattern but so far it seems as though the redness is worse if she doesn't get a good night's sleep. Like last night I gave her an extra dose of her sleep meds and today she said she had hardly any of those symptoms at all and she had her best day in a long time.. Does that make any sense to you?
Ok, that actually makes a lot of sense. The stress of sleep deprivation can easily trigger worse PD symptoms. All symptoms can magnify with stress. So getting better sleep seems to alleviate this non-motor symptom.
Great question. It honestly could be, because hyperhidrosis (excessive sweating) is a possible non-motor symptom of PD. That being the case if you’re wearing off it’s likely this could become worse at those times when things aren’t as regulated with the dopaminergic system. Thanks for your comment!
I run a farm alone with 57 dairy goats 18 sheep😅 in Florida excessive heat warning is everyday as soon as I started taking my I could tell I was😅 I can barely make it to The farmhouse terrifying
Yes! This is a prime example. As folks with PD need to be outdoors for either work or recreation it is paramount to be very mindful of those early signs of heat exhaustion and potential “wearing off” type feelings that can happen to PWP. Thanks for your comment Darlene!
I thought it was my levodopa meds now I know how powerful these brain cells are and how they control my whole body thank you for writing this I hope it helped somebody else I'm basically a veterinarian I run back and forth for the goats all day in the shape to make sure they are okay now I need to watch😅 myself a little bit this tends to happen when the off-time hits with the medication it's been dangerously hot here in Florida actually😅😅 everywhere
Well you could be wearing off too, especially if you’re getting close to a end time or past a dose time. But the heat can definitely drain the life out of you and cause fatigue in and of itself. I had a client with PD that ran a BBQ food truck and one day he was just spent when I came to see him. Well it had been around 100 degrees actual temp and imagine being inside a food truck cooking BBQ. 😯
Yeah, the cold brew would help to prevent physical heating. It’s a double edged sword too because of the caffeine potentially creating a chemical heat trigger also. Do you think this was present for several years prior to diagnosis or just in the years since? Also, wanted to mention I will be adding the card linking to your Comfort Linen video today. I forgot to add the cards when I released the video. 😆
@@parkinsonsdiseaseeducation I forgot to mention caffeine-free coffee. It's been happening for a number of years but it seems to affect me more now I can't type a hot meal and a hot drink I mostly eat cold food now
Hello Abdul! 👋 Welcome. My advise is to obtain as much information as possible. I’d start with the first video in the Parkinson’s Disease Education podcast playlist here on the channel. There is a lot of information and I am continually adding more. I have been adding subtitles in many languages. Do you speak Arabic? Farsi?
Hi Dr I found this video thank you . I was thinking on how to talk to my dr since I got a new dr . She seems nice I’m going to plan to tell her some of the stuff I experienced especially during the heat . I’m having so many symptoms . My question is what symptoms would be the most important to share with her ?I’m also hesitant to suggest I’m worried about PD . The thing is usually in my experience the ptsd diagnoses is blamed for everything in my life . However it’s connected to a lot of issues . I just don’t want to give everything I feel like not just a burden but I don’t want to confuse her . I was just going to mention the falls and my left foot I kept tripping over it it was like it was not moving the way my right was. It’s like I’m trying to force it to move the same pace as my left . Everytime I tried I tripped so had to slow down . I also had difficulty swallowing in this heat and figured to bring that up because my meds got stuck in my throat and I also was going to bring up the spasms and pain I have in both legs mostly left . MS was ruled out in 2022. What’s weird is whatever is happening started with tremors mostly internal and I was also diagnosed with ET. But the tremors only come and go now . The only thing that is daily is the left side weakness and leg spasms. I also started having issues with my left rib just feeling stiff not sure if ribs are effected in PD.
Hi Amanda, I’d recommend highlighting the symptoms of weakness, balance and falling, and movement changes, etc that are not normal for you. The tremors maybe could come up later, same as the heat bringing on symptoms. Based on the former she should want to dig deeper
@@parkinsonsdiseaseeducation thank you Dr. I often times feel like mental health diagnoses are blamed . This happened with the last neurologist he said I was too young for Parkinson’s . He was under the impression I was there for migraines my dr referred the wrong diagnoses on paper . So when I informed I was there for tremor his eyes rolled that he had to change gears.. that experience kind of left me upset . So I simply gave up for a while hoping I was to young and ptsd causing this stuff. He had said the leg pain and spasms could be coming from m back so I’m going to a ortho dr too and I’m going to ask them to document stiffness or gait issues if I present . I feel undermined from previous experiences but I have been watching testimony’s where some patients go through what I’m gong through. I will keep pursuing for answer. I really appreciate you dr for the encouragement. I will keep the channel updated .
No! What do you know about having Parkinson's? What are qualifications that cause you to believe you can give advice to me? Guess what...you don't lose common sense when you Parkinson's.
What are you referring to? Of course you still have common sense… I have no reason to prove myself to you, this information can be looked up through other resources. I choose to bring it to PwP and to make it digestible and easy to understand. What prompted this comment?
I was diagnosed in 2004. This is common sense. You simply like to hear yourself talk. How about this...when I get hot I go into an air conditioned room, or when I am cold I put on a sweater. My Parkinson's doesn't make me stupid. This is laughable!
@annekristineosoffsky3222 that’s pretty hateful and unnecessary. I have a 12 plus year career helping persons with Parkinson’s Disease as a PT and based on my interactions with clients in person and online, there is a clear lack of understanding of PD in the medical community and among persons who live with PD. If you don’t believe temperature dysregulation and PD are related, then you might take it up with organizations like the American Parkinson’s Disease Association who say the EXACT same thing. www.apdaparkinson.org/article/temperature-dysregulation-and-parkinsons/ Maybe you dont have this issue, but it’s not as simple as just getting hot and then getting into an air conditioned room. Folks working outdoors in their garden during the summer, etc may be overcome with heat and this can also make PD symptoms worse. If you don’t need this information then why are you here?
The autonomic nervous system controls blinking of the eyes. Those of us with PD should be mindful and blink often and use eye drops to keep your eyes moist. Don’t get dry eyes this could damage your cornea. 8:03
You’re absolutely right.
I use air ventilator to blow directly on my body when I notice I get warming process, it helps very fast and efficiently.
Fans and ventilators are a great option.
I have about six battery operated rechargeable mini fans for my wife who has PD and whose face is almost always red and hot. She carries one with her wherever we go. They really help!
I can tell when the temperature changes by 1 degree
That’s pretty remarkable.
I have multiple symptoms and my MD offers no treatment. I am in physical therapy for it however. I discovered that I didn't walk swinging my arms, I didn't walk in a strait line. Run into things, furniture and door jambs etc. Swinging my arms have increased my ability to walk more steadily. Staring the B1 therapy recently.
Hey Auggie(s)! I’m so thrilled that you are already doing therapy for this and that you have noticed how big an impact that arm swing had in your balance. Keep up the good work!
@@parkinsonsdiseaseeducation Thanks for the reply.
@Auggies1956 anytime!
Very helpful information thanks.
I’m very glad this was helpful to you
Great video. I'm experiencing "man-o-pause". Hot flashes that take me out....quickly.
I’m glad you enjoyed the video. Do you feel this is something to do with PD or is there also maybe some issues going on with testosterone that are resulting in a true male menopause? In reality, both could happen
Good advise thank you a PD patient
Glad this was helpful!
My wife has PD and the most troubling thing for her is that her face gets very hot and red for long periods of time, and she says "I'm burning up!" .I use cold cloths on her face but that only does so much. Any advice you could give would be greatly appreciated!
Hi Tom, thanks for the question. That’s not a common complaint I’ve heard about over the years, but my money would be on temperature dysregulation. PD causes damage to the autonomic nervous system and this is just one potential issue. It’s possible that your wife experiences this as flushing and redness, for whatever reason particularly in the facial area. Have you tied this down to a pattern of time? Often these types of symptoms show the most when wearing off between doses of levodopa
@@parkinsonsdiseaseeducation Hello doctor. I've tried to notice some sort of pattern but so far it seems as though the redness is worse if she doesn't get a good night's sleep. Like last night I gave her an extra dose of her sleep meds and today she said she had hardly any of those symptoms at all and she had her best day in a long time.. Does that make any sense to you?
Ok, that actually makes a lot of sense. The stress of sleep deprivation can easily trigger worse PD symptoms. All symptoms can magnify with stress. So getting better sleep seems to alleviate this non-motor symptom.
@@parkinsonsdiseaseeducation Thank you sir. Oh, and Jesus Christ is returning soon!
I believe you are probably right about that.
I thought my sweatiness was related to the Off time effect of the C/L. Sorta like a withdrawal symptom until the next dose kicks in. Any ideas?
Great question. It honestly could be, because hyperhidrosis (excessive sweating) is a possible non-motor symptom of PD. That being the case if you’re wearing off it’s likely this could become worse at those times when things aren’t as regulated with the dopaminergic system. Thanks for your comment!
Since January a portion of my autonomic has failed. I don't have natural BMs. It's just one of the effects of PD.
Among many, sadly
I run a farm alone with 57 dairy goats 18 sheep😅 in Florida excessive heat warning is everyday as soon as I started taking my I could tell I was😅 I can barely make it to The farmhouse terrifying
Yes! This is a prime example. As folks with PD need to be outdoors for either work or recreation it is paramount to be very mindful of those early signs of heat exhaustion and potential “wearing off” type feelings that can happen to PWP. Thanks for your comment Darlene!
I thought it was my levodopa meds now I know how powerful these brain cells are and how they control my whole body thank you for writing this I hope it helped somebody else I'm basically a veterinarian I run back and forth for the goats all day in the shape to make sure they are okay now I need to watch😅 myself a little bit this tends to happen when the off-time hits with the medication it's been dangerously hot here in Florida actually😅😅 everywhere
Well you could be wearing off too, especially if you’re getting close to a end time or past a dose time. But the heat can definitely drain the life out of you and cause fatigue in and of itself. I had a client with PD that ran a BBQ food truck and one day he was just spent when I came to see him. Well it had been around 100 degrees actual temp and imagine being inside a food truck cooking BBQ. 😯
My internal thermostat has been off for a long time. I only drink cold coffee now
Yeah, the cold brew would help to prevent physical heating. It’s a double edged sword too because of the caffeine potentially creating a chemical heat trigger also. Do you think this was present for several years prior to diagnosis or just in the years since? Also, wanted to mention I will be adding the card linking to your Comfort Linen video today. I forgot to add the cards when I released the video. 😆
@@parkinsonsdiseaseeducation I forgot to mention caffeine-free coffee. It's been happening for a number of years but it seems to affect me more now I can't type a hot meal and a hot drink I mostly eat cold food now
@@parkinsonsdiseaseeducation awesome Comfort linen has made a big difference. I know it can make a big difference for others
@LifewithParkinsons this is good feedback for folks to hear
My big brother parkension you give me any advise please.
Hello Abdul! 👋 Welcome. My advise is to obtain as much information as possible. I’d start with the first video in the Parkinson’s Disease Education podcast playlist here on the channel. There is a lot of information and I am continually adding more. I have been adding subtitles in many languages. Do you speak Arabic? Farsi?
Urdu
Perfect! I can make sure that the videos have the translation for you. Many have Urdu already. Are you in Pakistan?
@@parkinsonsdiseaseeducation yes brother i amin pakistan
Hi Dr I found this video thank you . I was thinking on how to talk to my dr since I got a new dr . She seems nice I’m going to plan to tell her some of the stuff I experienced especially during the heat . I’m having so many symptoms . My question is what symptoms would be the most important to share with her ?I’m also hesitant to suggest I’m worried about PD . The thing is usually in my experience the ptsd diagnoses is blamed for everything in my life . However it’s connected to a lot of issues . I just don’t want to give everything I feel like not just a burden but I don’t want to confuse her .
I was just going to mention the falls and my left foot I kept tripping over it it was like it was not moving the way my right was. It’s like I’m trying to force it to move the same pace as my left . Everytime I tried I tripped so had to slow down . I also had difficulty swallowing in this heat and figured to bring that up because my meds got stuck in my throat and I also was going to bring up the spasms and pain I have in both legs mostly left . MS was ruled out in 2022.
What’s weird is whatever is happening started with tremors mostly internal and I was also diagnosed with ET. But the tremors only come and go now . The only thing that is daily is the left side weakness and leg spasms. I also started having issues with my left rib just feeling stiff not sure if ribs are effected in PD.
Hi Amanda, I’d recommend highlighting the symptoms of weakness, balance and falling, and movement changes, etc that are not normal for you. The tremors maybe could come up later, same as the heat bringing on symptoms. Based on the former she should want to dig deeper
@@parkinsonsdiseaseeducation thank you so much. I think I have been communicating poorly . I will highlight my symptoms that you suggested .
@AmandainChrist88 you seem to communicate well enough to relay this to me. You’ve got this!
@@parkinsonsdiseaseeducation thank you Dr. I often times feel like mental health diagnoses are blamed . This happened with the last neurologist he said I was too young for Parkinson’s . He was under the impression I was there for migraines my dr referred the wrong diagnoses on paper . So when I informed I was there for tremor his eyes rolled that he had to change gears.. that experience kind of left me upset . So I simply gave up for a while hoping I was to young and ptsd causing this stuff. He had said the leg pain and spasms could be coming from m back so I’m going to a ortho dr too and I’m going to ask them to document stiffness or gait issues if I present . I feel undermined from previous experiences but I have been watching testimony’s where some patients go through what I’m gong through. I will keep pursuing for answer. I really appreciate you dr for the encouragement. I will keep the channel updated .
❤
♥️♥️♥️
No! What do you know about having Parkinson's? What are qualifications that cause you to believe you can give advice to me? Guess what...you don't lose common sense when you Parkinson's.
What are you referring to? Of course you still have common sense… I have no reason to prove myself to you, this information can be looked up through other resources. I choose to bring it to PwP and to make it digestible and easy to understand. What prompted this comment?
I was diagnosed in 2004. This is common sense. You simply like to hear yourself talk. How about this...when I get hot I go into an air conditioned room, or when I am cold I put on a sweater. My Parkinson's doesn't make me stupid. This is laughable!
@annekristineosoffsky3222 that’s pretty hateful and unnecessary. I have a 12 plus year career helping persons with Parkinson’s Disease as a PT and based on my interactions with clients in person and online, there is a clear lack of understanding of PD in the medical community and among persons who live with PD. If you don’t believe temperature dysregulation and PD are related, then you might take it up with organizations like the American Parkinson’s Disease Association who say the EXACT same thing. www.apdaparkinson.org/article/temperature-dysregulation-and-parkinsons/
Maybe you dont have this issue, but it’s not as simple as just getting hot and then getting into an air conditioned room. Folks working outdoors in their garden during the summer, etc may be overcome with heat and this can also make PD symptoms worse. If you don’t need this information then why are you here?
Always have to have the know it all and thinks he know everything, you need to chill out and listen to the advice
Thanks Justin, I really don’t know what this persons problem was. I think they are hurting due to PD and just wanted to lash out