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The Secret Life of Parkinson's
United States
Приєднався 31 січ 2022
The Secret Life of Parkinson's is a podcast created by Parkinson's patients, sharing their stories and interviewing others, on things we deal with on a daily basis. It's hard for people with PD to talk to others about the disease because sometimes it's difficult for the patient themselves to describe what they are feeling. Talking to other PD patients helps us express what we are going through in ways we might not be able to express to family and friends.
#124: Beech Band - a Parkinson's innovation created by a YOPD patient
Meet Carl Beech. After you watch this epside, you will remember his name, I promise you! There's not much I can really even say or explain - just trust me, you have to watch this episode!!!
Check out more on:
profile.php?id=61563836532593
www.parkinsons.org.uk/news/were-investing-beech-band-wearable-device-aims-manage-parkinsons-symptoms
#parkinsons #parkinsonssymptoms #parkinsonsawareness #beechband #carlbeech #spotlightYOPD #yopd #parkinsonsdiseasesupport #innovations
Check out more on:
profile.php?id=61563836532593
www.parkinsons.org.uk/news/were-investing-beech-band-wearable-device-aims-manage-parkinsons-symptoms
#parkinsons #parkinsonssymptoms #parkinsonsawareness #beechband #carlbeech #spotlightYOPD #yopd #parkinsonsdiseasesupport #innovations
Переглядів: 5 132
Відео
#123: Random Parkinson's talk with Brian and Jess
Переглядів 2 тис.12 годин тому
Just a mix of different topics: Shoes, PDNextSteps program, Parkinson's expenses, future episodes, and other random things.
#122: Parkinson's and Dry Needling
Переглядів 2,6 тис.День тому
Brian started experimenting with dry needling for his back and shoulder issues so we thought we would discuss his experience with his PT! 0:00-1:04 Dry Needling 1:05-2:58 Brian's PT Ryan 2:59-3:51 What is dry needling? 3:52-6:24 Where to focus dry needling 6:25-7:53 Dry needling vs. acupuncture 7:54-8:59 Brian's experience 9:00-10:11 Dry needling for Dystonia 10:12-11:47 What is cupping? 11:48-...
#121: Parkinson’s Life Unfiltered: New Drugs, Aches, and Real Talk
Переглядів 5 тис.21 день тому
We are not in the studio for this episode, and we don't have an agenda either. Just me and Brian taking a break from work to see how the other is doing.
#120: YOPD patient turned advocate for the Brian Grant Foundation
Переглядів 2,2 тис.Місяць тому
In this episode, we meet Amy Lavalee, who is a young-onset Parkinson's patient. She shares her personal story and then talks about her work with the Brian Grant Foundation. Check it out!
#119: "Together for Sharon" - Parkinson's patient advocate
Переглядів 2,4 тис.Місяць тому
One of the biggest Parkinson's advocates I know is George Ackerman. George's mom, Sharon, was living with Parkinson's for years before anyone ever knew. The last 4 years of her life, George was his mother's caretaker and learned more about the world of Parkinson's than he ever anticipated. Since her passing, he has has been dedicated to driving advocacy to find a cure.
Quick Parkinson's Message from Jessica
Переглядів 14 тис.Місяць тому
In this episode, it's just Jess. A quick message about dystonia vs. dyskinesia and the importance of knowing the difference for your MDS.
#118: Parkinson's Community: My YOPD ladies are here!!!
Переглядів 2,7 тис.2 місяці тому
WOW, WOW, WOW! What a weekend! Our Parkinson's non-profit, the 5KforJK, had our 4th annual walking event this past weekend (September 15, 2024) in Columbus, OH. Erika came from Florida (for the 3rd time) and Jill came to Ohio for her 1st 5KforJK (and her first time to Ohio) all the way from Washington State! Straight from Erika and Jill - "community is everything...meeting other PD people is li...
#117: Body Temperature and its potential effect on Parkinson's
Переглядів 2,9 тис.2 місяці тому
If you are into learning more about the gut, check out this episode. We brought Martha Carlin back to talk about more research she is doing on the GUT! This time, she's researching the effects of body temperature and Parkinson's. It's still in the works, but man is it interesting to hear her talk about. While I may not understand all the scientific terms, I learn and understand what I need to f...
#115: A Young-onset Parkinson's advocate - Allie Signorelli
Переглядів 3,1 тис.2 місяці тому
#115: A Young-onset Parkinson's advocate - Allie Signorelli
#113: Overcoming Challenges with Parkinson's exercises
Переглядів 2 тис.3 місяці тому
#113: Overcoming Challenges with Parkinson's exercises
#112: Inside Parkinson's Care: Insights from a Nurse Practitioner
Переглядів 2,5 тис.3 місяці тому
#112: Inside Parkinson's Care: Insights from a Nurse Practitioner
#111: Life with a Parkinson's parent - a teenagers perspective
Переглядів 2,6 тис.3 місяці тому
#111: Life with a Parkinson's parent - a teenagers perspective
#110: The Ultimate Online Resource for Parkinson's...coming soon!!
Переглядів 2,8 тис.4 місяці тому
#110: The Ultimate Online Resource for Parkinson's...coming soon!!
#109: Parkinson's and the Hospital - changes are happening
Переглядів 3,7 тис.4 місяці тому
#109: Parkinson's and the Hospital - changes are happening
#108: Easy Movement in Bed - Sheets for Parkinson's Comfort
Переглядів 3,1 тис.4 місяці тому
#108: Easy Movement in Bed - Sheets for Parkinson's Comfort
#107: Pain with Parkinson’s…viewers comments
Переглядів 4,1 тис.4 місяці тому
#107: Pain with Parkinson’s…viewers comments
#106: The pain IS related to Parkinson's
Переглядів 3,8 тис.4 місяці тому
#106: The pain IS related to Parkinson's
#105: Let's talk Duopa for Parkinson's
Переглядів 2,5 тис.5 місяців тому
#105: Let's talk Duopa for Parkinson's
#104: Women with Parkinson's with Richelle Flanagan!
Переглядів 3,4 тис.6 місяців тому
#104: Women with Parkinson's with Richelle Flanagan!
#103: Parkinson's advocate and podcaster, Mr. Larry Gifford!
Переглядів 2,9 тис.6 місяців тому
#103: Parkinson's advocate and podcaster, Mr. Larry Gifford!
#102: Parkinson's and SIBO (Small intestinal bacterial overgrowth)
Переглядів 2,5 тис.6 місяців тому
#102: Parkinson's and SIBO (Small intestinal bacterial overgrowth)
#101: Living with Parkinson's for 9 years
Переглядів 8 тис.6 місяців тому
#101: Living with Parkinson's for 9 years
#100!!!!! Top Parkinson's Podcasts
Переглядів 3,9 тис.7 місяців тому
#100!!!!! Top Parkinson's Podcasts
#99: Skeptical about taking Parkinson's medication?
Переглядів 4,8 тис.7 місяців тому
#99: Skeptical about taking Parkinson's medication?
#98: Dopamine and the Power of Socializing
Переглядів 2,8 тис.7 місяців тому
#98: Dopamine and the Power of Socializing
Parkinson's info all in one place!
Переглядів 2,1 тис.7 місяців тому
Parkinson's info all in one place!
Before DBS a through psychiatric test is appropriate to rule any post implant psychosis as I witnessed ,this procedure is still symptomatic control and temporary however to hold and drink from a regular glass some water with s steady hand and have the excessive movement and subsequent muscle soreness cease for a year or more is probably worth it.
Wow this is just SO promising. Carl you are da man…I love your intention to reinvest the profits and make this affordable to all. Are you working with Canada on approvals there? Please advise and thank you for all you have done!❤
It’s our intention to supply globally so we need help for each territory
What's the difference between this device and the Charco Neurotech CUE device and the VILIM ball device?
I haven't heard of the Charco Neurotech CUE device but just looked it up. Do you use that device?
Sign me up! I'm in!
Sign me up!!!!
The Beech Band will be a game changer on so many levels. Great interview! (Pass it on!)
Beechy you're a legend !
Amazing discovery! I can’t wait to try it!
This is why I had to retire early. I literally couldn’t think through problems. The daily uncertainty of this symptom is debilitating. I never know when I will experience it nor how long it may last. Sometimes it’s stress and sleep related and sometimes it’s not.
Congratulations Carl on your innovatory discovery. It shows how much we, as a community, can achieve when working together. If we leave all the work to medics and scientists, we get Levodopa after 200 years. By the way, I am a physician based not too far away in Derby. I too have lost count of the number of times I have been advised to speak slow or not at all. Keep up the good work Jessica and Brian.
I’m based very near you in Chesterfield
@@beechband Yes its a pleasant Derbyshire town. Our football team is more famous . As you go into the next phase of development, please let me know if I can help in any way. Cheers, Hari😉
Thanks for tuning in!
Great find for community 😊
Great interview, you two! (& excellent work behind the camera, Steve & Melissa!). This is incredibly awesome! I loved seeing the shocked looks while Carl was demonstrating the effectiveness of this product!!
I’m now rethinking my love of dot drawing. I can sit calmly and draw hundreds of dots. Maybe it’s my tapping therapy???
That's interesting! It's possible I guess!
Who else instantly searched “70 bpm music/ metronome” after watching this?!!! I’ve downloaded and playing as I heart bed. Thanking the Lord for this insight and willing vessels to share the info! 🙌✝️❤️🎶
App with the precise and correct resonance coming soon!
@@beechband Awesomeness! God bless you as you serve Him!
I feel hope and joy.
I have extraodinary compassion for PD patient's I have seen attempts at staving off ones side effects of this disease that worked for awhile or did not work at all including DBS. However the progress in DBS has been remarkable since I witnessed the early Medtronic implant surgery on each side of a patients head spaced weeks apart. The fine tuning is so much more precise now ,My wife was treated in New York City where we had 3 hospitals with specific movement disorder centers for treatment and Many of these clinics had visiting neurologists talk about Parkinson's from all over the world to us as well as several patient and caregiver groups . My only knowledge left that is known that I trust is that this disease is so unique . The fact is still that we have no cure ,my concern is that PD is caused by brain blood barrier dysfunction which would be very interesting to have a PD Physician or DO explain here as the causitive aspect of Parkinsonism. My wife died a stoic fighter and tried every possible way to participate in research and alternative medicines ,acupunture ,theraputic fasting Rekkei ,boxing etc.tolittle avail so it became The very best movement and still is her thought "The Same (curse) Leva Dopa" She died in 2022. helpfor her physically and emotionally was "Dance for PD" whether standing or chair dancing the music watching a trained dancer and dancing (touchless) with other PD members was the most gratifying for her. Be well and keep exploring. I still after my wife passed try to help PD caregivers make a more comfortable life for their loved ones ,little tips from showering or massages and how to hold a patient to keep them and yourself from falling, all of this not from medical staff but from patients and family , be strong and look forward ,not back!
I sure hope they are talking with Apple. It would be awesome to add as one of the health apps on the Apple Watch (biggest selling watch in the world)
Apps for smart watches coming very soon
This is very exciting. I hope there will be an announcement when this is available. There are a couple of people in our Parkinson’s boxing class (we are in California, USA) that I would love to see how this might work for them (freezing and speech)
This is so exciting! What a simple tool to give us relief with so many different symptoms! I can’t wait to try it out❤
God bless the beautiful people on this show🙏
Amen this is a blessing. ❤
I need to add something to what I said about this being a blessing. I was diagnosed a year ago but I know I have had it for years. When I got on to the dopamine it seems like a lot of things went wrong I started shaking more I ended up tripping. I can't walk without a cane or a walker . I've had pneumonia twice and this is all in one year I was diagnosed at the first of January. Granted I'm not young . I'm 74 but I'm definitely going to try the patting to get to sleep the tapping to stop my trimmers hurry and get this made we all need it so bad and I can tell you really need it too. Thank you thank you thank you and many blessings to come to you and your family and people that are working with you and your business .😊
This would be so awesome! I want one!
Such great news for us PD patients who feel anxious about what the future holds for us . May God bless your wonderful work and the marketing of this wonderful device ! Please let us know when it is being marketed on line for PD patients outside the UK and the USA
Thank you Can you tell me how to Order Your contact info please
I want it Today
Same!
What a product what a guy amazing.
When our vagus nerve damage. We develop Parkinson disease
Thank you for sharing
wow thanks so much for this!
I'm in Savannah Ga and have Parkinson need it so bad secret life of Parkinson please reach out to me
I'm a Parkinson patient how can I get one please!!!!
Wow! Impressive, can't wait for this. Luckily won't have to wait long as he's also weeks away from launching an app for smart watches! Great show, found your channel a few weeks back, Brian's dead pan stare makes me smile.
❤❤❤
This is so encouraging and mind blowing…. And a Christian man. ❤ I feel that only someone with Parkinsons can truly understand the daily challenges and that if even one symptom can be quieted for a moment the relief is huge.
Unreal! Totally blows my mind!
You have stumbled upon something extraordinary! Mind blowing!! This gives hope to PD patients everywhere.. thank you so very much. Can't wait to try it.
This is incredible, I’m also from Essex originally and suffer with similar symptoms. Excited to try this out!
This is amazing! As a Parkinsons patient who has problems with voice and tremor I can't begin to tell you the hope this brings. Happy tears!
It amazing 😂
Do you have any tips for someone who cannot use the the keypad on the phone or on the tablet very well at all due to all these tapping. Thank you in advance
how about Canada?
God bless you! I was told I need to start thinking about DBS and this discovery brought me to tears today. Thank you for sharing and giving me hope as a young onset Parky ❤❤❤
I am really looking forward to getting the device. I believe in the interruption therapy. At night when I lay down on my bed, my legs ache and there is a buzzing like electricity flowing down my legs. I focus on trying to wiggle my ears and the sensations become very muted and go away fairly quickly. Like in a way the heart beat bear we kept in the crib with both our children. Thanks for presenting this idea and podcasting it.
Yowzer. When Carl started explaining the speech problem, struggling to say more than a syllable, I was gobsmacked. That is precisely what has happened to me over the past few months. I thought that was a psychiatric thing isolated to me, not an actual Parkinsonian symptom. French is my second language, which doesn't help matters, but...wow. Hearing another person describe an identical symptom to my own experience...it feels amazing. Validating, even. Beyond that, it does sound psychosomatic, so I absolutely respect Carl for acknowledging that it might be a placebo effect. I fervently hope not, of course. I'm 32, with severe cervical dystonia (along with other fun symptoms), so I have a lifetime of this to get through, and if this actually works, it would be incredible. I'm seeing a specialist in January who will (hopefully) finally diagnose me. After three hospital stays, MRI's, angioscanners, lumbar punctures, genetic testing and every other test that the neurologists have thrown at me, I'm very much ready to move on. My current treatment plan is just about enough, with an apomorphine pump keeping me on inbetween the times when I need to take the other stuff, but it's not the most stylish accessory. I'll be sure to mention Carl's work to the neurologist when I see her!
Amazlng!
So glad I watched this episode.
Great episode I can't wait to try it.
Please please promote Carl and the Beech Band .
Keep going , Carl . The world needs to listen to you . Xx
As a now retired professional drummer with Parkinson’s, Drummers have been using the pulse watches as metronomes(eg google Soundbrenner) for years. Love the show by the way. It has been so helpful to me since diagnosed four year ago.
Chris, were you forced to quit drumming due to Parkinson’s symptoms worsening over time?
@@markjohnsondrummer3144 Yes Mark.
Thanks!
We experimented with them in development but we found the style and approach of the resonance and vibration could be refined to be more effective at a very specific hz
I am a retired SLP whose husband has PD. I am very interested in this device and know that there are new vibration devices being used for gait freezing that are very successful. Fascinating how it not only improves fluency but also vocal intensity and articulation. You mentioned how it helped someone with autonomic tachycardia and high BP. My husband has very low BP and bradycardia (fluctuating) so it would be interesting to see if this might help even it out (in addition to the medications he already takes for his PD and low BP). I would love to see Mr Beech provide a CONTINUOUS speech sample while turning the device on and off. Thank you for the fascinating broadcast and congratulations on what appears to be a very helpful device, at least for some people!
26:55 This is unbelievable. Fantastic. I want one. Hope this watch will be soon on the market. I hope the Pharma Industry will not like this. Greeting from Germany