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The Secret Life of Parkinson's
United States
เข้าร่วมเมื่อ 31 ม.ค. 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.
#104: Women with Parkinson's with Richelle Flanagan!
ATTENTION all ladies with Parkinson's! This is an episode you don't want to miss! (Sorry guys, you can watch if you want but it's a whole episode about menstrual cycles, hormones, menopause and more ;)! Richelle is a young-onset woman with Parkinson's. She co-founded the Women's Parkinson's Project and the My Moves Matter app. She is working with many women and doctors in the Parkinson's community to understand how/when our symptoms change based on our hormones. Truly a podcast you don't want to miss!
www.mymovesmatter.com
www.mymovesmatter.com
มุมมอง: 1 320
วีดีโอ
#103: Parkinson's advocate and podcaster, Mr. Larry Gifford!
มุมมอง 1.4Kวันที่ผ่านมา
In this episode, we invited Larry Gifford to the show! What an inspiration he is! Larry was diagnosed with Parkinson's in 2017 and since then, he launched his own podcast, "When Life Gives You Parkinson's", co-founded PD Avengers, on the MJFF Patient Council, and is now hosting the podcast for the Brian Grand Foundation, "On Time"....among many other advocate-like things. He talks about his rec...
#102: Parkinson's and SIBO (Small intestinal bacterial overgrowth)
มุมมอง 1.6K14 วันที่ผ่านมา
Dr. Patel is back sharing the details of SIBO (Small intestinal bacterial overgrowth) and Parkinson’s when they occur together. Changes in muscle movements are common throughout many parts of the body for people with PD, including the GI tract. SIBO is often the result of food and liquids moving too slowly through the small intestines.
#101: Living with Parkinson's for 9 years
มุมมอง 4.2K21 วันที่ผ่านมา
In this episode, we bring back Dave Kolbe from Episode #11. Dave has had Parkinson's for 9 years and is still living his best life! Hear the advice and tips he has to those of us who are newly diagnosed (or those who are years in!).
#100!!!!! Top Parkinson's Podcasts
มุมมอง 2.4Kหลายเดือนก่อน
Leave us a comment of YOUR favorite episode! It's been over 2 years since we launched, "The Secret Life of Parkinson's". We recorded our 100th episode and are excited to share our top 5 most viewed episodes and the episodes the four of us learned the most from. Check it out! Thanks for viewing and following our journey! We are so grateful for all the viewers and appreciate all the comments. Kee...
#99: Skeptical about taking Parkinson's medication?
มุมมอง 2.9Kหลายเดือนก่อน
Check out our latest interview with Dr. Patel where we talk about MDS's approach to medication with their patients, their reaction to taking or not taking medications, and much more!
#98: Dopamine and the Power of Socializing
มุมมอง 2.1Kหลายเดือนก่อน
While socializing may not directly increase dopamine levels in Parkinson's patients in the same way that medication or deep brain stimulation does, the positive experiences associated with social interaction can indirectly contribute to dopamine release and have beneficial effects on symptom management and overall well-being. Therefore, go on that girls trip or boys trip! Take the family on a w...
#97: Living with Parkinson's led them to Love
มุมมอง 2.1Kหลายเดือนก่อน
#97: Living with Parkinson's led them to Love
#96: Why Physical Therapy is a must for Parkinson's
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#96: Why Physical Therapy is a must for Parkinson's
#95: Did surgery trigger my Parkinson's?
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#95: Did surgery trigger my Parkinson's?
#94: Parkinson's and Gut Health - Can Probiotics help you?
มุมมอง 10K2 หลายเดือนก่อน
#94: Parkinson's and Gut Health - Can Probiotics help you?
#93: Coping with Parkinson's Arm Pain and Masked Face
มุมมอง 2.7K3 หลายเดือนก่อน
#93: Coping with Parkinson's Arm Pain and Masked Face
#92: Parkinson's and your Hospital Action Plan
มุมมอง 1.3K3 หลายเดือนก่อน
#92: Parkinson's and your Hospital Action Plan
#91: Preventing Falls with Parkinson's: Can You Do It?
มุมมอง 2.4K3 หลายเดือนก่อน
#91: Preventing Falls with Parkinson's: Can You Do It?
#88: What topics to expect in 2024 from The Secret Life of Parkinson's
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#88: What topics to expect in 2024 from The Secret Life of Parkinson's
#87: Do you have Parkinson's and suffer from shoulder pain?
มุมมอง 2.6K5 หลายเดือนก่อน
#87: Do you have Parkinson's and suffer from shoulder pain?
HOW TO find certain Secret Life of Parkinson's Podcast episodes
มุมมอง 1.1K5 หลายเดือนก่อน
HOW TO find certain Secret Life of Parkinson's Podcast episodes
#85: Parkinson's Psychosis - a Care Partner perspective
มุมมอง 4.8K6 หลายเดือนก่อน
#85: Parkinson's Psychosis - a Care Partner perspective
#84: 5KFORJK PRE-EVENT: Celebrating the Parkinson's Community
มุมมอง 1.2K6 หลายเดือนก่อน
#84: 5KFORJK PRE-EVENT: Celebrating the Parkinson's Community
#83: How to manage a job search while living with Parkinson's
มุมมอง 9936 หลายเดือนก่อน
#83: How to manage a job search while living with Parkinson's
#81: Roz's Deep Brain Stimulation (DBS) surgery 1 year later
มุมมอง 2.6K7 หลายเดือนก่อน
#81: Roz's Deep Brain Stimulation (DBS) surgery 1 year later
#80 Part 2: The difference between Parkinson's Dementia, Dementia with Lewy Bodies, and Alzheimer's.
มุมมอง 3K7 หลายเดือนก่อน
#80 Part 2: The difference between Parkinson's Dementia, Dementia with Lewy Bodies, and Alzheimer's.
#79 Part 1: Uncovering the 5 Neurodegenerative Parkinsonisms
มุมมอง 2.5K7 หลายเดือนก่อน
#79 Part 1: Uncovering the 5 Neurodegenerative Parkinsonisms
#78: The 'Cookie Queen' of Columbus, OH and her journey with Parkinson's Disease
มุมมอง 1.7K7 หลายเดือนก่อน
#78: The 'Cookie Queen' of Columbus, OH and her journey with Parkinson's Disease
I’m watching this video on 5/20/2024. Thank you for making the podcasts. My husband is in the process of being evaluated for Parkinson’s. He has seen a neurologist and a motion disorder specialist. He is not on any medication. I am seeing cognitive issues already. He can’t seem to find the words he needs say. He is also cold all the time! Can you please address these issues in a podcast some time? Thank you.
I liked the episode with Jessica's son.😊 your podcasts have helped me understand more about PD. Thank you so much.
🎉 love your program from South Africa
I had a total hysterectomy when I was in my early 30’s. I am 69 now. I took estrogen following my surgery but did not take progesterone. My doctor told me it was the combination of the two that could cause cancer and taking just the estrogen was the way to go. I was diagnosed with PD in November 2021.
I had breast cancer five years ago and I had to take Tamoxifen. Now I got the diagnosi PD. There is a study about PD and Tamoxiifen showed that the risk to get PD is higher. I think ther is a link between PD and hormens. Greetings from Germany. I follow your podcast. Thank you for doing this. ❤
That is horrible. I'm so sorry to hear this; how heartbreaking
Do you have an episode on Shy-Drager syndrome? Supposed to be a rare form of Parkinson’s…..my mom was diagnosed with this and also Orthostatic Hypotension(low blood pressure) this episode shed some light on her ‘panic attacks’ and other phenomena
Attach the App!
Also, I do blood donations every 56 days & was told it has a helpful effect post menopausal. (🤷♀️)
www.mymovesmatter.com
please provide a link to the app or survey?
www.mymovesmatter.com
What an amazing discussion. Thank you Richelle!
Richelle it’s the dietitian and the swimmer , isn’t she ???
I like your podcast and have liked all episodes. I am 73 years old and have had Parkinson’s for 19 years. I just cannot agree with the lady(Melissa) is name. I’ve had my glasses for 42 years and hearing aids for 18 years. Hearing & seeing did not cause my falling 11time in the last year.
Hi Jessica, Maneesha here from Pune India. I am a PD patient since last seven years. Like to get knowledge about the disease. Your podcast is a good gesture and I already subscribed. Thanks for presenting this series.
How do we sign up on the waiting list for TurnTo AI app?
Here's the link: waitlist.turnto.ai/parkinsons
Best video ever, this was an extremely informative video I loved it, thank you for doing that what you do. I signed up for PD Avengers
Great episode!
Great interview! Thx for introducing me to Larry & his PD resources.
I’ve been diagnosed with PD about 2 years ago, after the death of my beloved husband. I think the stress of his cancer and his death brought out the PD. (My opinion). Now I am alone and I hear everyone speak of how wonderful that their spouse is helping them, their caregiver. I have 3 adult children and will help, but for how long before it is a burden? Have you done a podcast on PD persons with no caregivers?
I'm so sorry to hear about the loss of your husband. I have heard how stressful situations such as yours can bring out a Parkinson's diagnosis (Episode #36: th-cam.com/video/FT5xq2ks3_A/w-d-xo.html). While we haven't done a podcast episode on the topic of a single person with no caregiver, Brian is single. Karen (Episode #33: th-cam.com/video/XiZgFpS4lmI/w-d-xo.html) is also single with no caregiver. It is a topic we can incorporate in future recordings though!
I also just saw this in my email. It's an online virtual event on May 28th by the Parkinson's Foundation for people with PD living alone: www.parkinson.org/events/2024/PDSolo-May28
Hi, I'm newly diagnosed with YOPD. I am a regular viewer of your TH-cam channel which is presenting good content. The Q&A with Dr Patel is very helpful. As newly diagnosed, I'm worried how will be the progression of the PD for me. I know it will be different for each person. But it will be helpful if you make an episode on how PD progressed in both of your case. Also I noticed that the PD symptoms gets intense when infected with some other illness like viral fever and it gets cured when that illness is cured but some PD symptoms stay back for long...
I have been diagnosed for 10 years and I have just started to really suffer and it is affecting my mental health and my physical health no longer being able to walk safely I feel my life is being taken away from me bit by bit
It is the depression medication that they gave you that helps you stop crying and not be a sensitive as you were. Many of the help you not to cry at all even if you wanted to
Jimmy is my new found hero!!!
I spin bike during your podcast.. nice to see you !
Happy for Marcus! 🎉pls keep us posted … God Bless u & Pickleball ❤
Does anyone have problems with balance issues after the DBS.??
I want to ask Brian , After his DBS does he have any problems with balance problems?
The doctor I saw wanted to do both the leads in 1 surgery with the generator after, but said they could to all 3 at once if I wanted, and he said I would be asleep for all of it.
Loved this talk with Larry Gifford. I would like to have an app as a one stop shop. On Time is not yet ready for prime time. Very confusing and cumbersome.
"On Time" is a podcast that Larry Gifford hosts for the Brian Grant Foundation. TurnTo AI is the app that is the one stop shop. It's not ready yet because we need to get more people in the Parkinson's community on board. But I have faith that this is going to be a great app for all of us!
@@thesecretlifeofparkinsons Like you I'm not a Podcast person. Time to teach an old dog new tricks. I do keep an eye out for Brian Grant Foundation since I'm in Miami and he used to play with th Heat. Thanks for all you do!
Larry (and you guys) ROCK!!! Thank you. 🙏
Good to see you both! Im grateful I found you 💕
"Gold standard" my a**!!!!
I am so sorry, I didn’t think about that I will email you.
I think I might have Parkinsons. I have all the systems. I've had it for 2 years now and it's not getting any better. Only my right side. Thanks for all the videos you put out.
Hello everyone, would it be possible to have the email of Dr. Patel. I really appreciate his attention on how he treats his patients.❤
Sorry, but I don’t believe he is able to provide services via Telehealth unless you are an OhioHealth patient living in Ohio.
Hello everyone, I m experience blood problems fluctuations. Is it Rasagiline causing this? Should I chg meds?
Sorry, Aurora, but since we are not physicians, we cannot determine, comment, or recommend things regarding medication.
I don’t have tremors but Bradykinesia & dystonia. I had focused ultrasound done 3 years ago and it cured the dystonia in my left foot.
I pretty much quit sharing anything about my pd with my non pd friends and some family members because they don’t get it ,and then I won’t get frustrated with them for not understanding.
Dave rocks and is an inspiration to us all!
I’m struggling too with insomnia, I also take 1 sinemet at 3:30am bcb tremors and stiffness on my left side leg. ❤ Anyone taking sinemet during sleeping time?
I take an extended release sinemet before I go to bed. But I think others take one in the middle of the night.
I take an extended release sinemet too 50/200 at 9:30pm. 1 sinemet at 3:30am then at 7:00am I take my next dose.
Hello Jessica, which meds are you taking now?
I take 2 C/L 4 times a day and an extended release before bed
You mean 4x2 sinemet per day. Extended release 50/200 at bedtime. Are you taking 1 Trazodone like me for Insomnia ? Zoloft for anxiety 1 50 mg Rasagiline 1 mg
That's very interesting. I'm 48 and i was diagnosed with parkinson disease at age of 32. I like this podcast so much .at least we know friends who can understand your daily challenges. I was diagnosed when my two children were kids .it's a real fight.
I’m struggling with anxiety any recommendations?
I try to go for a walk. If I am struggling with Dystonia while walking, my wife "quizzes" me while walking (count back from 193 by increments of 13, name all women's names starting with the letter "D", name NBA teams in the western conference, etc.). All these help me to get less anxious!
Thanks Jessica and Brian for SIBO
100% i have a hard time managing throughout my life on all this. I have become a very angry person. Specially if i drop something, or when i feel real weak or the pain, or the cant think on finishing sentences while talking to someone. Or folding clothes & trying to hang them up without falling. Im thinking of using electric toothbrush like you mentioned. Showers are scary & painful. Im bent forward, so when walking or standing its exhausting too. Had it since 45 or earlier, now 50. Take care everyone...i cant tell if its because my hearing is going or if i just dont understand conversations over phones anymore but im so happy for txt. I can still do that thank God.
So true. I have the rigidity Parkinsons too. Simple things like getting my cup to drink has to be all thought out. Or making coffee...my arm locks up from a fall in Nov. Offbalance alot now. Every step has to be thought out on everything I do. Wears me out. Also noticed my right foot keeps drawing up. 3 toes on that foot. Your videos help.
Glad it helps! Hope you get some relief
Thank you for addressing SIBO.
Any time!
You may want to see an orthopedic doctor. The nerve in elbow is call ulnar nerve.
I'm actually feeling so much better now! I went to PT for 4-5 sessions and increased meds. So much better! Thanks
Hi…Today was a day like that for me so your candidness in this video was spot on. I too went out for a walk and that helped somewhat. I tried to nap but couldn’t so I put my headphones on and listened to quiet environmental music. That helped but not enough. Still struggling a bit. I’m hoping that I’ll get a good night of sleep and feel better in the morning. Thanks for all you do…Peace!!!
What has worked for me when I wake up around 3 am is taking two extra-strength Tylenol , which ease the aches and pains and put me back to sleep. Have also been taking Magtein (Magnesium L-threonate), which seems to help with sleep overall. I am a 79 (almost 80) male who was diagnosed in June 2023.
Thanks for sharing. My wife has Parkinson’s and she has the exact same problem!
Sorry to hear that. Any tips to share?
It’s exactly as the lady describes in the video. Unfortunately it can be erratic, some days she is quite fluid in her movements other days this freezing of gait returns. I try to assist her by holding her hand and giving her some moral support but as you probably know Parkinson’s symptoms are very variable. Some good days some bad days. Medication naturally plays an important part in controlling the symptoms but my wife at times becomes very frustrated with herself. It’s not nice to see your partner like this but we still have each other and I consider it a privilege to be able to help her in what ever way I can. But in answer to your question we have no magic tips to share other than try to keep your spirits up each day!
Brian, I’m so glad you said your toes lift up! Mine do too! I was worried because everyone else say they curl down.
I am a Canadian and was diag'd with PD 6 years ago. 18 months ago I had DBS surgery. For 12 months I was medication free. I have started on 100/25 Levo. Recently, I have experienced double vision. Has anyone out there had PD double vision, what did they do to reduce/stop this and did it work? How many years should I expect to see a benefit from my DBS? Is there any benefit to using the new drug, Vyalev?