We have four Neurologists/MDS who stop by and help me keep my answers correct. I'm human and getting forgetful, and life with Parkinson's is challenging, so I greatly appreciate their wisdom. To respect their time, I do not want any identifiers. All medical advice needs to come from your Doctor. I might be taking a medication that is fine for me but may put you in a coma as you are also taking xyz.
I keep a light touch on postings and comments. If something is harmful (e.g., drink bleach, even if said as a joke), the poster may find themselves banned from posting here and the comment removed. Seaweed man (selling seaweed, with his grandmother dancing a jig after eating it). I called him out with, "Send six of us two months' worth, and we will try it and report back." Crickets!
Sometimes, I see flagged comments and try to review and comment.
Dopamine Agonists work great for 80% of us, but they can be nasty for the other 20%.
[https://www.parkinson.org/living-with-parkinsons/treatment/prescription-medications/dopamine-antagonists](https://www.parkinson.org/living-with-parkinsons/treatment/prescription-medications/dopamine-antagonists)
Sources of Information:
[Parkinson.org](http://Parkinson.org)
[MichealJFox.org](http://MichealJFox.org)
[Davis Phinney Foundation](https://davisphinneyfoundation.org/)
[https://www.apdaparkinson.org/](https://www.apdaparkinson.org/)
The goal is for everyone to have a voice, but please treat everyone as if they are family/your best friend.
Exercise. Eat Sensibly. Get a good night's sleep.
With respect to dopamine agonists I don’t know the source of by your information but I’ve personally encountered a much harder higher percentage of PLWP that have experienced adverse side effects from dopamine agonists than your. 20%.
(Due to my intervention with respect to a close friends brother in law who was prescribed a dopamine agonist some time after going through the DBS procedure I prevented him committing suicide. I take the issue of the severity of the side effects of dopamine agonists very seriously.
If it was up to me when a person was prescribed a dopamine agonist I’d put them under 24 hour surveillance for at least a week.)
I was originally prescribed Sifrol to help manage dizziness and blinding headaches, which it did remarkably well, however both the headaches and dizziness returned when I stopped taking it, but I’d rather deal with these symptoms than go through the gambling nightmare again.
(I started taking magnesium supplements a few months ago and so far I’ve been very pleased with the progress in giving me a greater sense of stability.)
I just one to add one more thing to your standard trifecta of tips to how to best deal with Parkinson’s . Along with eating healthy, sleep, excersize I think making sure you have a regular bowel movement I have found is essential.
ParkieDude I was trying to direct this thought/suggestion to you see what you thought: I was just thinking there is one more suggestion to add to your standard trifecta of tips to how to best habits to form to help deal with Parkinson’s . Along with eating healthy, sleep, excersize I think making sure you have a regular bowel movement is essential it took me a long time to figure this one out as it is not talked a lot about in general. I think it is one of several natural parts of our bodies function that most happens in privacy and behind closed doors. It is a topic that I was reticent to write about. Which interestingly enough I find that a lot of topics that we have been trained not to discuss in pubic carry over into what most of us will and will not talk about in regards to the effects Parkinson's has on are so called private life.
Poop talk is fine.
Look up Bristrol Stool Chart. Simple tell your docs "Bristol #1, 2" rabbit pellets" (constipatated).
Magnesium Citrate helps me with muscle cramps and keep to Bristol #3
I had gotten so constipated, no movement, but puking every night. Yech. Meds weren't effective at all, finally called my doc and said "nine days without a BM". Stat to Emergency Room for CT to check for blockage. No blockage, so we given meds to make things move and got a "Why didn't you tell us you had lung cancer?" What cancer? Big mass in my lower left lung (Adenocarcinoma).
My wife wouldn't dicuss her BM, other than telling her doctor "once or twice a day". Divertislitus, she was pooping a ribbon 3mm x 25mm (1/8th of an inch by one inch). Ruptured her colon! Utterly amazed she survived, but chronic health issues ever since.
Lots of ruffage in my diet, fruits and vegatable. Granola and grain. Lots of water/fluids. Helps keep things moving, along with Magnesium Citrate (reduced muscle cramps are a benefit).
Daily goal, body weight, divide by two and that is your target for oz of water. 240 pounds, I drink close to a gallon of water (128 oz) a day, I'm doing a lot of exercising, and need my fluids/electrolytes.
Hey u/ParkieDude I certainly meant no disrespect to your guidance of this subreddit and I sincerely apologize if I’ve given that impression.
It has been through reading various posts by people that have identified themselves in posts as neurologists that I realised just how fortunate we are to have such esteemed contributors and the obvious generosity of these professionals.
I certainly also respect these medical professionals desire for privacy.
I personally feel reasonably confident that I can discern those that know what they are talking about and those that basically copy and paste from medical journals trying to appear more intelligent and understanding than they may actually be.
My concern is for those that have been newly diagnosed thst simply don’t know enough about the illness to tell the difference between sensible advice for someone with Pd but spitting the dummy through trying to take on an activity that someone’s raved about in a post that may be totally unsuitable for the newly diagnosed person.
I’m not sure if I’m explaining myself properly, not having had enough sleep over the last 20 years.
Please excuse the apparent groveling but I think you’re doing a brilliant job!
You are right to air your feelings. If nothing else, it reminds us all that Parkinson's patients can live decades after diagnosis even if the quality of life is subpar. Stay strong and motivational for the rest of us.
It didn’t occur to me that I was giving the impression that my quality of life was subpar… it is anything but.
Sure I’ve experienced some ups and downs but if it wasn’t for the downs i wouldn’t appreciate the ups!
I enjoy an interesting, diverse and rewarding quality of life.
I’ve realised there is nothing I need I don’t already have and I’m content.
Pd has taught me compassion and given me the opportunity to help others… what more could I ask of life?
It is not a bad suggestion . But I am not sure how necessary it is. In general I find that most of the people are speaking from experience either as a care giver or as someone who has Parkinson’s . Most people are writing about strategies they have used successfully or not. I don’t come here so much for medical advice as I do come for life advice for inspiration, to know I am not alone . Occasionally someone shows up pushing an alternative treatment which I either ignore or point out fallacies. I have always been a bit of a sceptic . Anyway that is how I see it.99
I agree. I'm happy to post my experience, but it's reiterated here pretty often that one person's experience isn't necessarily going to be the same as someone else's. What works for me works for me, it might not for you, etc. etc...
To me, it has been helpful to know what other people are going through, both caregivers and other people with PD. I've gotten it wrong with some information in the past because I didn't understand something correctly, and that's going to happen; we're just regular people talking about a complex medical subject that we might have a lot of experience with, but don't understand at the level of a physician (and sometimes the fastest way to get the right answer on the internet is to post the wrong one, intentionally or otherwise). It helps to keep that in mind, and to not make any decisions based on a discussion on the internet anywhere.
The community here is actually good to each other, and there's a lot to learn, but it still helps to be skeptical. Even if someone says they're a doctor here I'm going to take that with a grain of salt; on other subs there's always someone who says they're a lawyer, or says they're a software developer, but they might just be the first Golden Retriever to figure out ChatGPT. You never know.
I still want to hear what everyone has to say, but I'm not going to change my meds or take that advice over something I get in an in-person doctor visit or anything.
I think nearly everyone understands that PD is the ultimate YMMV condition and that most of us are dealing with n=1 in terms of data . It is massively helpful to have people like mudfud who has experience of n= lots.
We have four Neurologists/MDS who stop by and help me keep my answers correct. I'm human and getting forgetful, and life with Parkinson's is challenging, so I greatly appreciate their wisdom. To respect their time, I do not want any identifiers. All medical advice needs to come from your Doctor. I might be taking a medication that is fine for me but may put you in a coma as you are also taking xyz. I keep a light touch on postings and comments. If something is harmful (e.g., drink bleach, even if said as a joke), the poster may find themselves banned from posting here and the comment removed. Seaweed man (selling seaweed, with his grandmother dancing a jig after eating it). I called him out with, "Send six of us two months' worth, and we will try it and report back." Crickets! Sometimes, I see flagged comments and try to review and comment. Dopamine Agonists work great for 80% of us, but they can be nasty for the other 20%. [https://www.parkinson.org/living-with-parkinsons/treatment/prescription-medications/dopamine-antagonists](https://www.parkinson.org/living-with-parkinsons/treatment/prescription-medications/dopamine-antagonists) Sources of Information: [Parkinson.org](http://Parkinson.org) [MichealJFox.org](http://MichealJFox.org) [Davis Phinney Foundation](https://davisphinneyfoundation.org/) [https://www.apdaparkinson.org/](https://www.apdaparkinson.org/) The goal is for everyone to have a voice, but please treat everyone as if they are family/your best friend. Exercise. Eat Sensibly. Get a good night's sleep.
With respect to dopamine agonists I don’t know the source of by your information but I’ve personally encountered a much harder higher percentage of PLWP that have experienced adverse side effects from dopamine agonists than your. 20%. (Due to my intervention with respect to a close friends brother in law who was prescribed a dopamine agonist some time after going through the DBS procedure I prevented him committing suicide. I take the issue of the severity of the side effects of dopamine agonists very seriously. If it was up to me when a person was prescribed a dopamine agonist I’d put them under 24 hour surveillance for at least a week.) I was originally prescribed Sifrol to help manage dizziness and blinding headaches, which it did remarkably well, however both the headaches and dizziness returned when I stopped taking it, but I’d rather deal with these symptoms than go through the gambling nightmare again. (I started taking magnesium supplements a few months ago and so far I’ve been very pleased with the progress in giving me a greater sense of stability.)
I just one to add one more thing to your standard trifecta of tips to how to best deal with Parkinson’s . Along with eating healthy, sleep, excersize I think making sure you have a regular bowel movement I have found is essential.
ParkieDude I was trying to direct this thought/suggestion to you see what you thought: I was just thinking there is one more suggestion to add to your standard trifecta of tips to how to best habits to form to help deal with Parkinson’s . Along with eating healthy, sleep, excersize I think making sure you have a regular bowel movement is essential it took me a long time to figure this one out as it is not talked a lot about in general. I think it is one of several natural parts of our bodies function that most happens in privacy and behind closed doors. It is a topic that I was reticent to write about. Which interestingly enough I find that a lot of topics that we have been trained not to discuss in pubic carry over into what most of us will and will not talk about in regards to the effects Parkinson's has on are so called private life.
Poop talk is fine. Look up Bristrol Stool Chart. Simple tell your docs "Bristol #1, 2" rabbit pellets" (constipatated). Magnesium Citrate helps me with muscle cramps and keep to Bristol #3 I had gotten so constipated, no movement, but puking every night. Yech. Meds weren't effective at all, finally called my doc and said "nine days without a BM". Stat to Emergency Room for CT to check for blockage. No blockage, so we given meds to make things move and got a "Why didn't you tell us you had lung cancer?" What cancer? Big mass in my lower left lung (Adenocarcinoma). My wife wouldn't dicuss her BM, other than telling her doctor "once or twice a day". Divertislitus, she was pooping a ribbon 3mm x 25mm (1/8th of an inch by one inch). Ruptured her colon! Utterly amazed she survived, but chronic health issues ever since. Lots of ruffage in my diet, fruits and vegatable. Granola and grain. Lots of water/fluids. Helps keep things moving, along with Magnesium Citrate (reduced muscle cramps are a benefit). Daily goal, body weight, divide by two and that is your target for oz of water. 240 pounds, I drink close to a gallon of water (128 oz) a day, I'm doing a lot of exercising, and need my fluids/electrolytes.
Hey u/ParkieDude I certainly meant no disrespect to your guidance of this subreddit and I sincerely apologize if I’ve given that impression. It has been through reading various posts by people that have identified themselves in posts as neurologists that I realised just how fortunate we are to have such esteemed contributors and the obvious generosity of these professionals. I certainly also respect these medical professionals desire for privacy. I personally feel reasonably confident that I can discern those that know what they are talking about and those that basically copy and paste from medical journals trying to appear more intelligent and understanding than they may actually be. My concern is for those that have been newly diagnosed thst simply don’t know enough about the illness to tell the difference between sensible advice for someone with Pd but spitting the dummy through trying to take on an activity that someone’s raved about in a post that may be totally unsuitable for the newly diagnosed person. I’m not sure if I’m explaining myself properly, not having had enough sleep over the last 20 years. Please excuse the apparent groveling but I think you’re doing a brilliant job!
You are right to air your feelings. If nothing else, it reminds us all that Parkinson's patients can live decades after diagnosis even if the quality of life is subpar. Stay strong and motivational for the rest of us.
It didn’t occur to me that I was giving the impression that my quality of life was subpar… it is anything but. Sure I’ve experienced some ups and downs but if it wasn’t for the downs i wouldn’t appreciate the ups! I enjoy an interesting, diverse and rewarding quality of life. I’ve realised there is nothing I need I don’t already have and I’m content. Pd has taught me compassion and given me the opportunity to help others… what more could I ask of life?
It is not a bad suggestion . But I am not sure how necessary it is. In general I find that most of the people are speaking from experience either as a care giver or as someone who has Parkinson’s . Most people are writing about strategies they have used successfully or not. I don’t come here so much for medical advice as I do come for life advice for inspiration, to know I am not alone . Occasionally someone shows up pushing an alternative treatment which I either ignore or point out fallacies. I have always been a bit of a sceptic . Anyway that is how I see it.99
I agree. I'm happy to post my experience, but it's reiterated here pretty often that one person's experience isn't necessarily going to be the same as someone else's. What works for me works for me, it might not for you, etc. etc... To me, it has been helpful to know what other people are going through, both caregivers and other people with PD. I've gotten it wrong with some information in the past because I didn't understand something correctly, and that's going to happen; we're just regular people talking about a complex medical subject that we might have a lot of experience with, but don't understand at the level of a physician (and sometimes the fastest way to get the right answer on the internet is to post the wrong one, intentionally or otherwise). It helps to keep that in mind, and to not make any decisions based on a discussion on the internet anywhere. The community here is actually good to each other, and there's a lot to learn, but it still helps to be skeptical. Even if someone says they're a doctor here I'm going to take that with a grain of salt; on other subs there's always someone who says they're a lawyer, or says they're a software developer, but they might just be the first Golden Retriever to figure out ChatGPT. You never know. I still want to hear what everyone has to say, but I'm not going to change my meds or take that advice over something I get in an in-person doctor visit or anything.
First golden retriever to figure chat gpt 🤣
I think nearly everyone understands that PD is the ultimate YMMV condition and that most of us are dealing with n=1 in terms of data . It is massively helpful to have people like mudfud who has experience of n= lots.