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LivedHealth Parkinson's
United Kingdom
Приєднався 28 січ 2021
At LivedHealth Parkinson's, we cover a wide range of topics and perspectives of interest to the Parkinson's community with two key principles: firstly we aim to deliver content that is useful, engaging and succinct; and secondly, everything we produce is co-designed and presented by people actually living with the condition.
LivedHealth was originally funded by the Wellcome Trust in 2021 and two UA-cam channels were created: LivedHealth MS and LivedHealth Parkinson's. The funding ran out and, since October 2023, the Parkinson's channel has been run on a voluntary basis by Jodie Forbes who was diagnosed with the condition in 2017. Jodie is supported by a fantastic group of co-presenters, including Shafaq and Vicky. If you have any suggestions for future videos, please send us an email.
Disclaimer: Whilst we try to be accurate and helpful, our videos and comments may express personal opinions and do not constitute medical advice.
LivedHealth was originally funded by the Wellcome Trust in 2021 and two UA-cam channels were created: LivedHealth MS and LivedHealth Parkinson's. The funding ran out and, since October 2023, the Parkinson's channel has been run on a voluntary basis by Jodie Forbes who was diagnosed with the condition in 2017. Jodie is supported by a fantastic group of co-presenters, including Shafaq and Vicky. If you have any suggestions for future videos, please send us an email.
Disclaimer: Whilst we try to be accurate and helpful, our videos and comments may express personal opinions and do not constitute medical advice.
Ketogenic diets for Parkinson's, part 3
Susan and Neil have now been doing their ketogenic diets for 8 weeks. Or have they? In this video we examine some of the challenges in sticking to these diets as well as the benefits of eliminating carbs and fasting.
Some useful links:
Dr Laurie Mischley: (specialist on diet for Parkinson's)
- website: lauriemischley.com/
- lecture: ua-cam.com/video/LdpfNnnAzKI/v-deo.htmlsi=Zs2s01aasia5mnLu
- Pro-PD app for tracking overall PD severity: lauriemischley.com/pro-pd-app
Keto diets:
- Dr Matthew Phillips lecture on the science behind keto diets for Parkinson's: ua-cam.com/video/iBNNIIDBIYU/v-deo.htmlsi=79-fWas7FAaJxGSB
- Dr Michael Mosley, Fast Keto book: www.amazon.co.uk/Fast-800-Keto-Bestseller-long-term/dp/1780725027
- Eric Berg lecture on starting a keto diet: ua-cam.com/video/dR6TnC1RY_8/v-deo.html
Some useful links:
Dr Laurie Mischley: (specialist on diet for Parkinson's)
- website: lauriemischley.com/
- lecture: ua-cam.com/video/LdpfNnnAzKI/v-deo.htmlsi=Zs2s01aasia5mnLu
- Pro-PD app for tracking overall PD severity: lauriemischley.com/pro-pd-app
Keto diets:
- Dr Matthew Phillips lecture on the science behind keto diets for Parkinson's: ua-cam.com/video/iBNNIIDBIYU/v-deo.htmlsi=79-fWas7FAaJxGSB
- Dr Michael Mosley, Fast Keto book: www.amazon.co.uk/Fast-800-Keto-Bestseller-long-term/dp/1780725027
- Eric Berg lecture on starting a keto diet: ua-cam.com/video/dR6TnC1RY_8/v-deo.html
Переглядів: 142
Відео
Rallying to the Challenge
Переглядів 952 місяці тому
A brief look at the recent Rallying to the Challenge initiative co-hosted by Cure Parkinson's and the Van Andel Institute in Grand Rapids, Michigan, USA. To watch the individual videos from the event, go to this link cureparkinsons.org.uk/2024/09/rallying-to-the-challenge-2024/
Ketogenic diets for Parkinson's, part 2
Переглядів 2412 місяці тому
Susan and Neil have been on their keto diets for two weeks. Did they go the distance or did they give in to cravings for carbs? Do they feel any better for their efforts? Find out in part 2 of ketogenic diets for Parkinson's
Ketogenic diets for Parkinson's, part 1
Переглядів 4582 місяці тому
Susan and Neil, who both have Parkinson's, are starting ketogenic diets to see if that helps improve their symptoms. We'll follow their progress over the next few months as they eliminate all sugar from their diets. Some useful links: Dr Laurie Mischley: (specialist on diet for Parkinson's) - website: lauriemischley.com/ - lecture: ua-cam.com/video/LdpfNnnAzKI/v-deo.htmlsi=Zs2s01aasia5mnLu - PD...
Focused Ultrasound for Parkinson's
Переглядів 4804 місяці тому
Jodie visits the Queen Square Imaging Centre in London to find out more about a technique called focused ultrasound which demonstrates amazing results in improving tremor and other movement symptoms in Parkinson's. For further information on Queen Square Imaging Centre, visit queensquare.com/ For an overview of how focused ultrasound works, visit ua-cam.com/video/z3wHE76ghjI/v-deo.html
Parkinson's choirs
Переглядів 2675 місяців тому
Singing is an excellent way to keep exercising your vocal cords when you have Parkinson's. Jodie meets Nicola Wydenbach who set up the Camberwell Skylarks Parkinson's choir in South East London to find out more. www.camberwellskylarks.co.uk/ www.singtobeat.co.uk/
Swallowing, drooling, hydration, taste and more... everything to do with your mouth and Parkinson's
Переглядів 1,3 тис.6 місяців тому
Speech therapist Julia Johnson is back to talk about the problems that can arise with your mouth when you have Parkinson's and what you can do about them.
Stand up comedy with Parkinson's
Переглядів 5326 місяців тому
Jodie speaks to Phil Jerky (not his real name...) about how he started doing stand up comedy after his diagnosis of Parkinson's. You can find more clips of Phil, and information about his future performances, here: linktr.ee/philjerky
Digital biomarkers for Parkinson's
Переглядів 3107 місяців тому
Jodie visits SERG Technologies and Imperial College who are developing better ways to measure movement symptoms in Parkinson's disease. These "digital biomarkers" will help develop personalised treatment plans as well as enable research teams to more accurately measure the effect of new therapies. PD-CL Rehab is an 18 month industrial research project in which SERG Technologies Ltd, in partners...
Genetics of Parkinson's - part 2
Переглядів 3518 місяців тому
Professor Huw Morris from University College London is back to discuss how understanding the genetics of Parkinson's can help us develop new therapies
Genetics of Parkinson's - part 1
Переглядів 6609 місяців тому
Professor Huw Morris of University College London talks about whether Parkinson's can be inherited and explains some of the latest research into the genetics of Parkinson's.
A new app for Parkinson's
Переглядів 7829 місяців тому
Jodie speaks to Kuhan about how he designed his own app for Parkinson's. You can find this in the app store by searching for "Parkinson on". Do you have a favourite app for Parkinson's? Post your thoughts in the comments.
When will we cure Parkinson's?
Переглядів 2,7 тис.10 місяців тому
The "Movers and Shakers" Rory and Nick are back to discuss what it means to cure Parkinson's, when that might happen, and some of the challenges in getting there.
Movers and Shakers - Behind the Scenes
Переглядів 4,6 тис.11 місяців тому
Jodie talks to Rory Cellan-Jones and Sir Nicholas Mostyn about how they created the Movers and Shakers Parkinson's podcast (podfollow.com/1677410087) and some of the reasons for its enormous popularity.
Newly diagnosed with Parkinson's? Everything you need to know.
Переглядів 1,1 тис.Рік тому
Newly diagnosed with Parkinson's? Everything you need to know.
Parkinson's UK - how do they help the Parkinson's community?
Переглядів 317Рік тому
Parkinson's UK - how do they help the Parkinson's community?
Can big data help Parkinson's research?
Переглядів 264Рік тому
Can big data help Parkinson's research?
Gyrogear Anti Tremor Gloves for Parkinson's
Переглядів 2,7 тис.Рік тому
Gyrogear Anti Tremor Gloves for Parkinson's
Michael J Fox Foundation: What are they doing?
Переглядів 534Рік тому
Michael J Fox Foundation: What are they doing?
Augmented reality and how it's being used in Parkinson's
Переглядів 465Рік тому
Augmented reality and how it's being used in Parkinson's
Will this device stop you freezing with Parkinson's?
Переглядів 3,2 тис.Рік тому
Will this device stop you freezing with Parkinson's?
Hacks You NEED To Know When Travelling With PD
Переглядів 1,8 тис.Рік тому
Hacks You NEED To Know When Travelling With PD
What Were Your First Parkinson’s Symptoms?
Переглядів 57 тис.Рік тому
What Were Your First Parkinson’s Symptoms?
World Parkinson Congress 2023: Our Top Takeaways
Переглядів 5 тис.Рік тому
World Parkinson Congress 2023: Our Top Takeaways
Chronic Illness ‘Influencers’: Helpful or Harmful?
Переглядів 4,6 тис.Рік тому
Chronic Illness ‘Influencers’: Helpful or Harmful?
My father is suffering with parkinson's desease for last 17 years. Now at the age of 50, Doctors refused to do Deep Brain stimulation, And this desease is monster for my father and whole family, this started effecting on mental health as well. I don't know what to do. Very worried.
All the best to you Mr Forbes, I'm currently writing a paper on the effects of lactate and its extremely promising potential to halt Parkinsons disease (really, the haltering of dopaminergic cell death).
I have action tremors in fingers and action wrist tremor is it parkinson tremor
My hands always had tremors and suddenly this past week I've had difficulty swallowing and also lots of drooling. I'm 28 and I'm scared as hell because my grandpa had a very bad case of it :(
Sir doing masterbation can loss dopamine in brain and that's cause to Parkinson ?
@@avinash4007-o1l , no I don’t think this is correct. Dopamine can play a role in feelings of pleasure and reward but this is in a different part of the brain from the part that is to do with motor function that is significantly affected in Parkinson’s. Also, the death of dopaminergic cells does not appear to be caused by the amount of dopamine used.
God bless you.❤
I just learned that taking Creatine is a natural nootropic -- have you heard of that?
Enjoyed this
I am so happy for my Sister, she got cured of her Multiple Sclerosis just few weeks of using Dr Madida Sam herbal supplement on UA-cam🎉 🎉….
I think that’s the challenge: symptomatic relief but I was on Keto for about 6 weeks. I never really got the latter and as it was really tough going I thought I was sort of in no man’s land really. I returned to a normal diet. The ONE thing that seems to work (apart from exercise which makes two I suppose!) is fasting. I know some Yank who has halved his drug intake via this method. Again, not easy though 😢 for the long term.
The thing is that you can’t cheat on Keto and it’s an unrealistic diet for a long term strategy. If you do cheat then you’re out of ketosis and then you’re back at the starting line.
Thanks for your comment - you're probably right, but that's why we're doing this (very informal) experiment, to see some of the practical challenges and to see whether people feel better, even if that's due to a placebo effect.
i appreciate you following their diet for parkinson's. lotsa denial here.
Can you cover if there is a potential benefit that nicotine may provide for people with Parkinson's. I have read that nicotine may have neuro-protective properties and that it may stimulate dopamine production. Thank you
@@thorarthur66ddz we did a short video on Parkinson’s and smoking already - in the comments of that video there is some discussion about nicotine. ua-cam.com/video/VECWHQfyO7g/v-deo.html 0:52 si=Cn9XocTytRAeyvwX
Best thing ever really helped with my Parkinson’s even brought the cue1 + in September
Thanks for making this video ❤
How many guys are called Jodi?! 😂
@@ohblimey21 Jody is the more common spelling for men but there are a few other female Jodies - see en.m.wikipedia.org/wiki/Jodie 😀
Very informative
Good and informative!
He seems much younger than his age damn
@@orangesnowflake3769 thank you for your kind words. I must say that first thing in the morning I feel about 90 years old as I struggle for ages to get out of bed then shuffle precariously to the bathroom. Then my meds kick in and I look and feel human again. On these videos we only tend to show people at their best but maybe we should also show the reality of bad side of Parkinson’s? Jodie
My dad, we were so ignorant back then when it started, i remember he complained about loss of smell a very long time ago, and maybe pain in a particular shoulder. But as his son i remember he complained about feeling slow, then came tremors, back in 2021 But fast forward to today, his condition progressed so quickly, and he's developed advanced stage dementia now. He is completely incapacitated, lost all function and cognition with all manner of incontinence. Can't walk or stand. 99% dependent.
So sorry to hear about your Dad's rapid decline. Parkinson's is a very individual and unpredictable disease and, for every person you see in our videos who has lived with it for 15 or 20 years, there are others who have progressed more quickly. Indeed, I have friends whom I have shared the journey with over the past 7 or 8 years since I was diagnosed that are now in far worse shape than me and I consider myself very fortunate. There are many thousands of people around the world searching for better therapies and ultimately a cure for Parkinson's - possibly too late for some of us, but I'm convinced it's just a matter of time and effort before we conquer this condition. Jodie
My handwriting is changing, and i can't sign . Please tell me that's not the early sign.
Difficulty with handwriting (and other fine motor tasks like doing buttons or typing) could be caused by a number of things. If you also have tremor and/or slowness of movement or stiffness (for example an arm not swinging when you walk) then it is more likely to be Parkinson's. Other early signs include difficulty staying asleep, constipation and loss of sense of smell. In any event you should try to see a neurologist.
@LivedHealthParks Thank you! I don't have any of those signs, just the writing.
My husband was diagnosed with Parkinson’s back almost a month ago ….as soon as we found out I googled and the pieces of the puzzle fit …. It happened one thing at a time then it all made sense but we finally got a diagnosis at least we know after all these months 🙏✝️
Hi Jodi. I don't know how I got on your page. My Parki started when I was student and I got label hypocondriaque. Finished 8 years of Uny, 2 academics, 2 kids, 2, jobs, one ex-marriage... selfmedicating mainly with xanax. Got dg. 5 years ago and manage it well with Madopar and Xanax. I'm 70. But it is a form of art, listen to your body and to know what to take and how much. Courage❤
Great attitude. What is your diet? Keto? Vegan? I'm doing a paper on this very topic. God speed to you sir.
❤
is this effective for 60year old patient with 20 years of parkinson disease?
I would suggest checking with the company directly. The device may well be worth a try, but is not guaranteed to work for everyone. Best of luck!
Yes it is
I relate 100℅ to what you said. I am the same way.
Thank you for these informative videos.
Thank you for the feedback - you are most welcome. Do please let me know if you have any topics you would like to see covered in the future. Many thanks, Jodie.
great video. great people. So thankful clever people like this devote their lives to helping us defeat PD.
Thank you for the informative video
I am 41. Last July, I had a massive stroke and almost died. Parkinson's and strokes run on my father's side.
Finally got my CUE1+ this week. Cost £795 from Charco (not £295 as stated here!). Early days, but it does seem to be helping with balance, gait and freezing.
Wow, that's expensive.... do please keep us posted as to how well it works in the coming months.
Hey man, hi there add Amantidine which will protect you against dyskinesia I e involuntary movement s/e of levodopa (60%patients get them after five year ) please consult your neurologist prior starting
I haven't been diagnosed (yet) with parkinsons , but have a range of issues going back 15 years at age 35 what syarted as a jaw tremor when at rest, to now approaching age 50, that have gradually worsenrd, with repeated falls over last three years, tremors in my hip area and legs ,or arms which come and go, partial hallucinations, paranoia, lethargy, loss of taste, increasing shuffling gait and feet turning inwards, , which prompted me to speak to my g.p, (i have Tourette Syndrome and autism) this g.p suggested it might be my tics and essential tremor, which i disagreed with , ive currently been referred to a falls clinic at local hospital , but the last month, ive started choking on tiny pieces of food, that go down the wrong way, everytime it happens it really irritates my lings fir a few days , with coughing , and catarrh.
I cant understand your accent!
Subtitles are available on all the videos. Click on the icon that looks like a box with dots and dashes in it. Sometimes these are auto-generated and have a few mistakes but they should be good enough for you to understand what is being discussed. Hope that helps!
Who are you talking to? If you can't understand these 2 women you might have a problem.
FMT into the Transverse colon only will cure it. Google fecal matter transplant.
Hope my CUE2 comes soon...been signed up for months! My friend Terry has one and swears by it...he's even in Charco's videos...somewhere!
Brilliant and informative as always!
Welp, that explains the small drool problem I've developed. I wasn't even sure it was a symptom, but I began to suspect. Man, this disease is just a hoot and a howl.
Another fantastic video. Really informative! Thank you for keeping up these videos Jodie.
I'll date ya
Very helpful video, demonstrating clearly how Parkinson's symptoms are unique to every individual patient.
Thank you. It’s great to know people find these videos helpful. If you haven’t already, take a look at some of our other videos. I try to cover a range of topics- suggestions for future videos welcome! Thanks Jodie
Eat carnivore.
Say no to drugs that over time will not continue to work. And what are the side effects?
In the case of Parkinson's, I completely disagree with this. Dopaminergic drugs have given me about 10 years of my life back with minimal side effects. When I have off medication periods I realise what life would be like without the drugs - difficult and miserable. Sure, they may not last forever but like many people I have responded well and they have vastly improved my quality of life for many years. I totally understand the instinct not to rely on medication, but I'm glad I got over that some time ago... Jodie
Clean keto or carnivore do same with no side effects
@@KN-ob8hm I thought red meat was a no for parkinson so how do you do Carnivore without red meat.
Great video! So young for a PD diagnosis 🧡
How do they know it’s Parkinson’s Vs Dementia w Lewy Bodies?
Have you heard of Aminopyridine? A Naturopath said they have some success w this.. I am at my wit’s end w C/L - as it’s causing hallucinations and severe constipation w my HWP… Having a really tough time w HWP and not sure what to do.. The dilemna is: On C/L they get horrific REM disorder dreams/ Nightmares/ Paranoia- and even called 911 in middle of night saying there was truck coming through apartment. They have off C/L for a few days- and these horrible active nightmares where they sleepwalks have subsided.. HOWEVER, it seems like the Dopamine or missing C/L now they have less motivation to get themselves off bed, to physically walk themselves to the bathroom; constantly asking me to help pull them up, I am having more now to dress, put diapers on them ( as they also are having frequent urination) and had last few nights where they don’t know where bathroom is and we’ve traded the vivid nightmares w C/L for lack of motivation / w short term memory issues- and they aren’t having “the get up and go” as much to do daily tasks… Any thoughts? THANK YOU AND SENDING STRENGTH AND LOVE TO ALL OF YOU IN THIS BATTLE 🙏🏽🙏🏽🙏🏽🙏🏽
Love the jokes! I think it's great to lighten things up and be able to laugh at ourselves. In a round about way, you're helping people to understand/recognize Parkinson's through your comedy. Hope to see some updated videos on your YT page.
Good on ya mate ! Wishing you all the best in your future gigs. From a fellow shaky parky.