Parkinson's Disease Progression. YOPD Eight Years After My Diagnosis.
Вставка
- Опубліковано 27 чер 2024
- I was diagnosed with YOPD in December of 2013. In this video I discuss what Parkinson's disease progression has been like for me, and how I am doing eight years after my diagnosis. Grasping what progression of a neurodegenerative disease would be like after my Parkinson's diagnosis was abstract and not easy to entirely understand. Even though you know what progression means, no two people progress at the same rate, and we of course want to know how is it going to impact me.
#livingwellwithparkinsons #yopd #wigglesproject
Chapters:
0:00 Intro
0:34 Parkinson's Progression, Parkinson's Medications, & Parkinson's Off Time
8:04 What I have learned from Parkinson's, Parkinson's and Mental Health With A Progressive Disease
Such warmth you share in our challenging situations. And the insight you help to grow with courage to live PD. Thank you so very much. This is hard. You are more influential in our capabilities than you can imagine
Oh thank you so much!! I envision a domino effect...I know when others inspire me it's contagious. Your kind words have made my day, month, and year, thank you! 🥰
Love, love your videos! I’m constantly bemused by PD and the fact that we are all “same, same but different “.
I was diagnosed 10 years ago and for the first 7-8 years I was able to almost ignore my PD....working, raising kids, traveling etc etc. But these last few years have been plagued with menopause, stress, anxiety and advancing physical symptoms.
Luckily, I have discovered a previously hidden passion for creativity and my not so good PD days now get diluted by exercise and drawing or photography or mosaics etc. And I just love this amazing silver lining!
The random unpredictability of PD keeps me on my toes and challenges me every day and although I don’t want this disease, I can find happiness with it!
I love, love your comment! It's incredible how much my menstrual cycle magnifies my symptoms. Until somewhat recently it didn't, but it's oh so clear for 10 days before my cycle begins. I've heard that menopause, already no picnic, can have a similar effect on symptoms. The silver lining is there for us, and like you I love photography and music, pretty much anything that satisfies those creative impulses. Getting outdoors or just being outdoors is a big one for me too! If you are on Instagram I use to showcase some of my favorite photos, follow me and I will do the same :) My Instagram link is on the banner at the top of the page. Thank you so much!!
FYI I’ve updated my UA-cam account to match my Instagram and Facebook acc...🙃
A Little Bit Shaky!
What a warm & encouraging message. When I get down about Parkinson's, I''ll remember this.
❤️❤️❤️
All of your material information is greatly apprreciated specially the las two minutes, specially at the moment in which you said things like: "Onece that you find yourself healthy in life we tend to ignore or overlook the reality that might overcome uppon us at any point of our lives, that when the reality that all of us is
are prone to experiance a harsh moment, then we turn ourself more positve in the sence about of becoming a person with more resilience in dealing with the need of finding the necesary strength we need in order to continuing being helpful to ourself and to others
Thank you Israel! Life is a wonder and mystery in so many ways...the yin and yang, the wisdom and the ignorance, the pain and the comfort, it's all there for us whether we like it or not. It offers us many lessons and like Parkinson's not all of us will walk away with the same the knowledge from the lesson. But some lessons are universal in that many of us when in the same place will feel the same thing : )
Great job once again Jenn! Best quote ..."Parkinson's forces you to face and embrace the uncertainty of life." Loved the grocery store story. By asking for help, you gave someone else the opportunity to do good and to learn something about Parkinson's. Your note to the store manager gave well deserved kudos to the employee but also spread awareness. You never know how far the ripples will go when you toss that pebble in the pond! Talk soon my friend! Lauren
Thank you Lauren! I love "you never know how far the ripples will go when you toss that pebble in the pond," so true. The employee who helped was so kind and professional, and absolutely deserved some kudos. I spoke with one manager who gave me the store managers card, and he said "people only email to complain, rarely do we hear about what we are doing right." Talk soon!! : )
Blind Tiger Brewery shirt! I live with Parkinson’s in Topeka,KS. Diagnosed in 2016 at 61 and just found your channel.
I really enjoy them.
My first 6 yrs my MDS had me on many meds and I felt they were driving me crazy. I stopped all meds for 2 yrs and am just now restarting Sinemet because PD has progressed and causing me to freeze.
Looking forward to getting caught up on your videos.
I am a pwp diagnosed 10 years ago. There’s a funny thing that happens with your mind and your thinking about life. Parkinson’s brings a certain clarity to what’s really important and what is just fluff in life and living.
It was nice to hear someone else say basically the same thing.
Thank. you for you comment! I wish it didn't take a diagnosis like Parkinson's to snap us into the reality of what is really important vrs fluff....but it really worked for me and it's something I am thankful for :)
Hi. I got diagnosed with Parkinson’s a month ago. I’m 38 years old. I have five kids. It has rocked my world. I’m just gathering information about this disease and stumbled across your positive video. I love your attitude. It is so inspiring. Your video definitely helped me today feel s little less overwhelmed.
Hi Jessica!! I am sorry to hear about your diagnosis, and know how it can rock ones world to hear...you've got Parkinson's disease, it's pretty surreal, especially when so young. A healthy attitude and perspective in my opinion is really important, along with exercise, and a good diet, all the things that are recommended even for healthy people. While everyone is different and I have my challenges I have been able to adapt and live a happy and active life with Parkinson's, and I am not alone. Try not to get too overwhelmed by it all and take in what you need to learn little by little and like you reached out to me, reach out to Parkinson's community....there are some amazing people out there who make this an easier road to go down. Thank you so much for your comment about my video...I can't say enough how much it means to me that I've helped someone feel less overwhelmed!!! Stay in touch : )
Read daphne bryans the B1 protocol, vitamin b1 thiamine which comes best as benfotiamine helps a lot try it
How are you now?
I thank you for all u have talked about in this video. My PD hit me suddenly in 6/21, and within 2 months I had my (abnormal) DaTScan, and a great Neurologist/MDS. I started taking C/L in 12/21 and it really helped. (I started out w/R hand and Head Tremor) by 11/22 I started having a resting tremor in my R hand, and I also have sleeping problems that sometimes cut my sleep to 2-3 hrs a night.
My Dr. asked me if I am depressed, and I told him “ no”, a my husband and I grew up w/ other disabilities (I am legally blind, and use a Guide Dog, and my husband has Post Polio, and uses braces and a manual wheelchair. Because we have had a positive attitude, and feel that we can adapt to life’s changes, although experiencing changes like difficulty with multi-tasking, and some memory challenges are challenging me.
I take 2 mile walks w/ my sweet guide, take Parkinson’s exercise and mindfulness classes, and these activities have helped me w/ some anxiety. I have had PT,OT, now Speech Therapy, and I am hoping to regain my ability to sing a bit.
I am not a young chicken…I am 71. Your videos help me to stay positive and to keep going, even if there are good days, and the not so good ones. Thank you for your words of wisdom. 🌹😎🦮🌈
I love your message and positivity!! And how proactive you are...walking with your dog, the different therapies, and I love singing too!! I am hopeful that you will regain your ability to sing and just today I heard something about Paul McCartney using AI, even though I am not a fan of AI just yet, but he used it to help bring out John Lennons voice and finish a Beatles song. Perhaps you can do some playing around and not only record yourself singing but compose some music with the help of AI. Even if not, I believe in all that you are doing to stay positive and live well!! Thank you soooooo much for your comment!!! 🥰💞
Digging this! Just loving your editing in the way that you present information so conversationally. Thank you for being my friend 🎉
Thank you soooo much for being my friend too!!! Such a compliment along with, you knowing how hard we work for a great edit 🥰 Thank you!!!
Thanks for these videos! So grateful for your honesty, wisdom, and hopefulness.
Thank you Ed! I'm so grateful for the Parkinson's community and comments like yours!!
Jennifer great to see your video as always. Thanks for your honesty , positive attitude and sense of humor. Know that what you do , makes a big difference in people's lives. Thanks
Thank you for your comment Rick and taking the time to watch...It is my hope that these videos make a difference, thank you for saying so!!
You’re not kidding about the alcohol, I had a glass of wine the other night and it was like I had the whole bottle! Parkinson’s and alcohol do not mix, at least for me.
Great video, love the pets!
Thank you!! Sorry for the delayed response but somehow I missed this, ugh!
The pets are pretty sweet right!!
Thank you for recording this video. I was diagnosed in May 2021 and am slowly coming to terms with it. I am fascinated with others' journeys with this unwelcome friend. I agree with what you say: you never know what's just around the corner and though you are aware that life is finite, having PD makes you appreciate that fact and what you still have even more.
Thank you so much for your comment!! I too am fascinated with other's journey and honesty have learned so much about PD from other people with PD...Can't imagine having this disease without others who understand and share their stories with the community!! 🥰
Thanks for sharing your journey, Jennifer. I love your attitude! You are an inspiration and I appreciate your wisdom and experience.
Thank you Laura, or Exquisite Warrior! To anyone reading this comment, Laura is an incredible photographer and book artist and has a book that you must see....there is so much inspiration and wisdom in her beautiful book!!! laurarussell.net/store/exquisite-warriors/
@@ParkinsonsWigglesProject Awwwww! Thanks, Jennifer!
Thanks for sharing your experience. I’m in the 8th year of my own Parkinson’s journey and I can totally relate to everything you said. Stay strong!
Thank you for your comment!! You stay strong too!! 🥊
Excellent video. I love the editing! Your perspective is refreshing and just the kind of positivity that I needed to hear today.
Thank you!! That makes my day that my kind of positivity was need and hopefully helped turn your day into a better one. Also thank you for noticing the editing work, as I know you know, it's fun to do, and time consuming, but challenging when trying to make it sound and look as good as it can.
You are such a brave person. I pray they find the cure
Thank you & me too!! 🥰
I enjoy your videos. A positive attitude is definitely important. Some days that isn't easy. Your grocery store story reminded me of a friend of mine who has more intense symptoms than me. Thank you for sharing your experience with us.
Thank you Sharon!! Some days indeed are more challenging than others, and for me a healthy dose of positive thinking has helped me so much.
Hi there Jenn 😊Thank you for sharing this video. I was nodding yes, yep that's me, yep I know how you feel on this, omg me again hahaha. I felt like I was watching a video of myself. I'm 6 1/2 years in here and things are definitely getting more and more interesting day to day. That's just how it is right? I'm about 3 to 3 1/2 hour for my timing of pill dosage. If I'm adventurous I might go to 4 and see what I can and can't do, usually not pretty 🤣😂 Your positive attitude is infectious! When I'm in the rough patch of my day and see a video like yours, it recharges my mental strength and attitude. I think when we see someone else going through the same things, it reassures us that it can be done and I know it helps me power through that tough/dark moment of my day. One of my most frustrating symptoms I deal with is my speech. Of course what I do for a living is all about talking and explaining, so of course it would have to affect it 😒. You or anyone else out there have hard times with speech? I've done some speech therapy and I do it almost daily. Any tips or experiences out there 😊This video really hit home for me and may of even watered an eye. 😉 Keep smiling, keep the positivity vibes flowing and may our sense of humor keep us laughing. HAPPY EASTER!! Thank you again!!
Thank you so much for your comment! Early on I saw a speech therapist for swallowing issues and her help totally did the trick. It was all about stretching the jaw and relaxing the tongue. I tried making a video with the stretches she showed me but it didn't come out right....Maybe I should try again?! Over the last year I have noticed on occasion I stutter....it's like my mind is working faster than my mouth can :) I should consider seeing one again to nip that in the bud if I can. I am definitely reassured talking with and knowing that others are out there facing the reality of PD, it is indeed comforting to know we aren't alone. To see ourselves in each other is an essence of humanity 🥰
awesome overview of Parkinson"s. I've been diagnosed about an year ago and have much to learn regarding adjustments daily as every day is different from the previous day. Thank you for sharing.
Thank you for your comment and sharing your day to day experience! 🥰
Wow! I sure wish I had your spirit and what appears to be love of life. 3 years with Parkinson's and I still have not accepted what I have. I saw your video and wanted to listen to it. I'm in California where it's beautiful and sunny today and I'm just laying on the couch feeling. Sorry for myself, it's not been a very good day. I've already cried four times. I just can't seem to shake the blues. I can't seem to accept what I have. I know other people with PD. They seem to be very happy with it their life. I don't understand that. Maybe I should get a pet. That might help. Thanks for letting me talk
Hi there! I understand how you feel and know how the blues feels and how hard they can be to shake....but you can!! I think it's important to give ourselves permission to feel sad, to cry, to feel what we need to feel, but what is also important is to put a time limit on how long we give ourselves to feel what we need to feel. Three years is a long time and perhaps your message is you saying I am ready to accept Parkinson's and find ways to bring some joy into my life again...I hope so!!! Your message has inspired my next video which I will start working on tomorrow! I needed professional help to process my diagnosis, it was a shock....eventually I like to believe I could have done it on my own, but I was able to pay $135 for every visit, found an amazing Cognitive Behavioral Therapist and I can't say enough about how helpful it was for me in gaining perspective. If you can I highly recommend CBT or Cognitive Behavioral Therapy...for me it was life changing and helped me shake my depression and fears and so much more!!
Thank you so much for sharing your story. My Mom has Parkinson's and your videos have really helped me and my family understand what she is going through. I realize that not everyone is the same when it comes to this, but your videos give us a lot of great insight into what it's like. Thanks again. You're such an inspiration!
Thank you Ben! It's wonderful to hear that you and your family are trying to understand what your mom is going through. Because it is hard to understand, even for myself it's hard. One of the hardest thing with Parkinson's is that 5 minutes ago all was normal, you can walk and everything is fine, than poof it's not, and just like that you are waiting for you meds to work again. Then poof they work again and you got run with it and make the most of it while you got it! : )
I’m so glad to find your channel. I was diagnosed 12 years ago and until now, I haven’t found anyone who truly understands the course of this disease. Thanks so much.
Thank you Larry! I am glad you found my channel too! 🥰
You’re awesome! Just found your videos. I’m six years in with this pd diagnosis. I really appreciate your reflections and attitude. Keep it up!❤
Thank you!! 🥰
Inspiring, motivational, and educational!!! Thanks so much! with gratitude,
Jim
Thank you sooooo much Jim!! I am so grateful for the Parkinson's community : )
You have a great attitude. Thank you for sharing!
Thank you kindly Dean! 🥰
Thank you for this honest and insightful video into your life. I have been with my husband for 3 years, 8 years post his Dx of YOPD at 38 y.o.; It is immensely helpful for me to hear your perspective.
Thank you for watching as someone who doesn't have Parkinson's but loves someone so much who does have Parkinson's that you take the time and have the interest to learn about it!!! ♥♥♥
Thanks for this. You make it easier for me to deal.
Thank you so so much!! 🤗
I just had to thank you for all of your details of your experiences. I was diagnosed in April 2023. And I am 74. I am taking CL 25/100 four times a day. But I have so many questions still to answer. And maybe some I never will. But your descriptions of off and on and of your life sure did give me some more assurance that I can deal with this. Thanks very much for sharing.
Hi Nancy and thank you for sharing your story! I am happy to hear that the video was helpful. Lots of questions indeed, I still have them :)
Thanks for sharing, your videos definitely do make a difference - showing how people can live well with this crap condition. Hopefully we'll have something soon to stop this condition progressing.
Lots of promising late stage trials, Exenatide for example and in the UK I'm on the waiting list to try CUE1. Keep up the good work 👍.
Thank you so much for your comment!! Indeed something to stop progression would be amazing and I wish you luck getting into the trial you've signed up for. Haven't heard of Exenatide, will look into it. 🥰
Thank you for this video, my wife who is 72 years old now has Parkinson’s. I see myself as a caregiver now and this video has helped my wife and I better understand this very complex neurological disease. x
Thank you so much for your kind words! It is a very complex disease and we all have similar yet very different roads, but you both will find ways to adapt and live your best lives with it, because it is totally possible. Wishing you both the best!
You have a great attitude! I’m thankful for your channel. I like what you said about Parkinson’s being a “strange gift.” I feel the same way. Since my diagnosis almost 4 years ago, I had to leave a job that I loved. But God is faithful and he gave me my dream job now. Which I would never have gotten if I had not been diagnosed with Parkinson’s. So it is a strange gift-one that we don’t want but it’s really a blessing in many ways.
Thank you Eric!! A strange gift indeed and one none of us wants that's for sure. But here we are together trying to make the best of it and I truly have met some wonderful people that make it easier to do. Now have this channel which makes me so happy!! And you have a dream job now which makes you so happy! Strange isn't it 🥰
I just discovered Jeremy’s site yesterday and now have 2 new resources: you and David. I’ve been hiding and denying my symptoms for a long time but finally asked my doctor last week for a neuro referral. There is definitely a motor issue but no idea what it is. Just want to say how comforting it is to find other really nice, helpful, reassuring people who are willing to help the rest of us on this journey.. I love your attitude. “When life hands you a lemon….” PS : I have 2 cats and a dog too. The best meds ever.
Hi Pat! Happy to hear that you have found some reassuring folks in the Parkinson's community and I hope you find out what is going on with the symptoms you having been struggling with. Pets are the greatest meds ever, sooooo agree! Thank you for watching and your comment!
I am 2 1/2 years in and I am constantly learning about this every changing disease. It is a "strange gift" and it is hard to explain. You did a great job doing that!
Thank you for sharing!
Thank you so much Danna!! : )
by the way i was diagnosed 2004, im 63 now, i , alone with 2 dogs who love me very much, i love them too, we will be ok, God is good all the time
Thank you for your comments! 20 years is a long time with PD....I know one guy who's had it 25 and he's doing better than you'd think. I have two cats and one dog...I love animals and they fill life with love!
A year ago I went to the doctor because my right hand had started to shake, after several examinations and scans unfortunately I have no diagnosis yet. The symptoms have gotten worse in the past year, so now it's the whole right arm and leg..... This week I'm going to have a special scan of my brain where thay can see if it's producing the normal amount of dopamine........thank you so much for your amazing videos Jennifer❤❤❤, they show me that even if you have Parkinson's you can have a good life and look amazing❤
Thank you for your comment! The scan you are referring to will be so helpful in finding out what is going on. It is frustrating when you have symptoms and no answers. Let us know how it goes! Thanks again and I hope you get some answers 🥰
Thank you ! I was diagnosed w Parkinson's about 6 mo ago at age 78. It has been an incredible journey even in that short time. It has been tough at times but illuminating and good too. Your sharing of your story will help me.
Hi and thank you for you for watching, your comment, and sharing your story!! It's a roller coaster ♥
Thank you you are an inspiration for us!!! Keep fighting!
Thank you!! 🥰
Your channel is very helpful. It’s encouraging to see that people have this and it does not let it control them. That is how I’ve been approaching it. My first doctor was a complete jerk, who basically said in so many words I only had five years left to live. Needless to say, I dumped him and have a really good neurologist now. I refuse to let this condition get me down.
Thank you so much! Gotta say goodbye to the complete jerks in our lives :) and great to hear you found a good neurologist. This relationship is soooo important!! I am with you, refusing to let PD get me down and living the best life I can each and every day 🥰
I get a lot of information and encouragement from your videos. Thank you!!!
Thank you so much for sharing your story. I had Alzheimer’s symptoms @a year. That was so scary, but I felt like I fell in a deep dark hole with a lot of deep depression and anxiety when
I started getting Parkinson’s symptoms. Finally accepted the Alzheimer’s but Parkinson’s is so much worse. It is a continuous struggle to live daily.
Hello and thank you for your comment. I don't know what Alzheimer's is like but the physical/motor symptoms of Parkinson's are tough, but there are non motor symptoms as well, and having both I imagine is a struggle to manage. Sometimes I joke about finding my Parkinson's la la land.....where everything is ok no matter what. Thank you for sharing with us! ♥
Thanks for that video. I was just diagnosed 5 weeks ago and I so relate to everything. You say like joking Lee you know my gonna die is? It's gonna kill me you know all these things. I'm happy to know that I can walk and talk in 8 years. Maybe I'm just learning everything. I haven't started on any medicines yet but I really appreciate this bit of info look forward to more.
Thank you Rhonda! You have Parkinson's is hard to hear but know you still have so much to look forward to. I am still learning so yes, there is a lot to learn but you will start to understand....It can be so overwhelming at first 🥰
Thanks so much for your video. I'm not YOPD. I was diagnosed October of 2022 at 69. I was still working, but retired about 5 months later after training my successor. My employers didn't want me to leave. My job was very stressful and I couldn't do it justice any longer. I think I started showing symptoms in January 2019, but didn't realize or accept there was something wrong until June 2022. I really appreciate your perspective.
Thank you for your comment! I had a hard time accepting my diagnosis too, it's not easy. I hope that you have been able to enjoy your retirement , having less stress in your life, and finding lots to keep you active, busy, and happy 🥰
you are an inspiration! God bless
Thank you so much!! 🥰
This video helped me a lot. Thanks for being you!!💞🎶💝
Thank you so much Debbie! Your comment makes me so happy to hear!!! 🥰🌸❤️🦋
Thank you so much. I'm not there yet but I will be !
Thank you Scott!! : )
Such a great video --- thank you!!!
Thank you so much!! 🥰
I ve been diagnosed 2 months ago, for the moment I m still quite depressed, thank you for your video ...
After my diagnosis I needed professional help processing it, and I wouldn't be feeling how I am feeling had I not done it. She was a cognitive behavioral therapist, and I know not everyone is into it, but when you find a good therapist that you connect with, you will find a way to see the bright side of a disease you don't want. I've got my mental health ninja and it's part of my overall health care plan, like eating good, getting exercise et. This is how I feel better and believe it's possible for all of us :)
Thank you very much!🌈👍🏾 Glen x
You're welcome! 🥰
Hi Jennifer. What a great story about your experience at the grocery store. The person that helped you needs a gold star!
I think this video will help a lot of people, you share your experiences in a easy going manner which makes them easy to relate to.
Thanks😀😀😀
Thank you David! One thing I value most of all from my years in the restaurant business, aside from all the people I met, but it's connected, is it gave me the ability to talk to anyone, anytime, and anywhere...that must be where the easy going vibe comes from. That employee was soooo amazing, and I agree Gold Star all the way. Good employees can be very hard to find sometimes. I am looking forward to our next collaboration video!! :)
Me too. Just finishing the edit on this week's video and then I'm ready.@@ParkinsonsWigglesProject
@@LifewithParkinsons I've actually been meaning to comment on your last video and am going to go do that right now. Talk soon!!
Thank you! Thank you! Thank you! Thank you! Thank you!
You're welcome!! Thank you for your comment!! ♥♥♥♥
Once again thanks for your insights. I'm still working. But having to take it slow. Your kitty and puppy are so cute 😃 have a nice Thanksgiving holiday. ❤
Moji and Nico are soooo cute! Thank you and I hope your Thanksgiving was yum yummy! :)
Very very video, well done, love your dog 💕
Thank you so much! My dog Nico says woof 🥰 I am so lucky to have her! 💕
We are at opposite ends of the PD spectrum. I am a man, 79 years old, happily married for over a half century, with one amazing daughter and two grandkids in high school . Diagnosed with PD last June (2023). Had thought I was just getting old and reaching the end of the line. Thanks to PD I have medicine and daily exercise to perk me up. The dating game is ancient history.
Thank you John! Wow, 50 years is incredible :) Family is everything! 🥰
Great video - tks so much
Thank you so much!!
Great video thanks.
Thank you! 🥰
Thanks for this video!!!!!! ❤
Thank you for watching!!! 🥰
Hi there Jennifer, my wife has both Vascular Dementia & Parkinsons-Plus which was positively diagnosed on 18th March, 2020 - yes, right at the start of Covid which we managed to dodge. We are at a stage where I have had to upgrade my skills set because my wife has already lost most of hers. I sincerely hope you are able to keep your independence for as long as possible. Kind Regards, From South Africa
Hi Kevin...Thank you kindly for your comment and I am sad to hear where your wife is with two very difficult illnesses! That you are stepping up and upgrading your skill set to help her live the best life she can, speaks of your loving and generous nature, she is very fortunate to have you as her husband. I too hope I am able to keep my independence for as long as possible and I appreciate you hoping that for me as well! Don't forget to take care of yourself, and I am sending love to you and your wife from California.Take care!
Hey i love your channel im 37 i was diagnosed two years after graduating from high school ìn 2004
So you were 19-20? That is young for sure...I couldn't believe it at 38. If you don't mind my asking what were your symptoms? Did they know right away? I've talked with many YOPD people who had a hard time getting diagnosed because they were so young. Thank you for your comment!! 🥰
"Face and embrace the uncertainty"--I love this! Our outlook on how to deal with this disease is very similar. Anytime I feel myself about to have a pity-party moment, I just tell myself..."what good will come from this.....NOTHING." Now I'll add "face and embrace the uncertainty" to my pep talk. It's interesting you mention how what you ate didn't affect the effectiveness of the pills early on. I noticed that I'm not having an issue with that as well, but good to know that will likely change. Love your vids. Keep them coming.
I am so glad you like Face & Embrace too!! I was so excited about some of what was said felt at that moment like a Parkinson's epiphany, and that was one of them. Yes...food, drinking, and my menstrual cycle had no impact early on, and all three kicked in seemingly all around the same time but honestly I wasn't tracking dates of the first signs....I'd say after 6 or 6.5 years is when I started to notice that those no impact days were coming to an end. It's not that bad yet....there are tricks I have to get around it like having perfect timing but they don't work every time...most of the time the do : ) Goodness there's another example of that uncertainty for you, LOL! Thank you : )
@@ParkinsonsWigglesProject Uncertainty is Parkinson's middle name! lol
kick ass videos/ tunes/ locations!!
Thank you!! ❤️
Hi Jennifer. I just found you and I’m so glad I did. I love everything that you’re saying and teaching and it has several very similar experiences. I’m about a year in diagnosed but I’ve had symptoms. Professional fitness trainer sports performance coach. I have much to share. Hope to talk with you soon.
Hello! I am happy to hear you are glad to find my channel 🥰 Thank you for your comment and you're welcome to share your story with us anytime.
Good that i found someone my age that has it
There's more of me : ) But we can be hard to find!
G-d bless you. I hope you stay as well as possible.
Thank you Harold! I hope we both stay well 🥰
The MD suspected I had PD, over a year ago. I'm seventy-four and soon I have another birthday. I'm set for a brain scan next month to verify if I have PD. I keep active, walking the dog, small projects around the house. I have a classic car I'm rebuilding. As far as my symptoms I have walking issues and balance issues. And the big one is I have no "motility", natural BMs. I drink two liters of water over the day and take a laxative, "Magnesium Citrate" after I finish the water. Anywhere, two to six hours I'm able to purge, but I have to use abdominal pressure to get it going. I'm upbeat about it but at the same time, it's on my mind.
I have a great friend with PD who once said to me that you haven't truly had a conversation about PD until you talk about BM's. It's a big deal and so good that you have found a routine that works for you. Keep working on the car and moving as much as you can, that is also important. Thank you for your comment 🥰
Just found your channel, 7 years into my diagnosis. As you say exercise is so necessary. I don't know if you've heard of Power for Parkinson's on you tube where there are Parkinson specific exercises. Check it out the teachers are great and they offer another resource to help manage our disease.
Hi Terri!! Thank you so much for you comment and recommending Power of Parkinson's...Haven't heard of before and will check out 🥰
Thanks for sharing. I’m a victim of PD, it could be worse is my mantra.😢
Thank you! My mantra too, it indeed could be worse.
Have you tried the vitamin B 1 therapy? I am starting it and I’m up to 600 mg a day. Today it seems to help but way to early to determine.
@@foxyone3 the only supplement I take is COQ10 but not for PD. www.michaeljfox.org/news/thiamine-vitamin-b1-and-parkinsons
@@ParkinsonsWigglesProjecthello thanks for positive video, you’re very brave and hope you get better. I’m wondering what is the benefit of taking Coq10 for parkinson’s patients?
Thank you for sharing. I was diagnosed in 2016. I had DBS surgery in July this year.
Thank you for you comment and sharing as well! 🤗
Hi sending love to my friends in USA
especially Jennifer❤
Hello! Have a great weekend 🌸
Thsnk you
You're welcome🥰
have a nice day
Can I ask if you suffered pain before getting your diagnosis? My neuro is currently suspecting FND, but has sent me to see a MDS in a couple months.
I have very tight and often painful muscles throughout my back and neck, along with occasional calf cramping. Distractible tremor, which is why the neuro originally suspected FND. I’m really hoping the MDS doesn’t suspect YOPD as I’m only 28 😔
Thanks for your content and feedback!!
Hello! I had no pain thankfully, but many people do. It can be tricky to diagnose especially when young, hang in there and be patient. I have an intention tremor, which is different from the resting tremor which is more common. I know how stressful this time can be, but do your best to not stress yourself out. The best thing I did for myself was find a therapist to help me process my diagnosis. I had always gotten through the tough stuff on my own, but this was different. Stay in touch and let me know what the MDS says. It's really good that you are seeing one!! ♥
I wish I lived in fluffy bliss . I was diagnosed in Nov 2017. The pain is becoming so horrific that suicide is fast becoming a welcome friend. I was prescribed sinemet one tablet a day. Makes no difference. My Gp has prescribed a whole host of muscle reelaxents heavy duty pain meds that I sleep for a good twelve hrs which I love. Upon waking I just lie there as reality kicks in and then the shaking begins. I have no specialists,nurses or help with this.. I’m sorry, I am all alone.
Hi Jane! 1 800 223-2732 this is the phone number for the national headquarters of the American Parkinson’s disease Association and you should absolutely call for help. You are not alone!!!! And I’m not a doctor, but I was prescribed three carbidopa levodopa per day in the beginning, which was 10 years ago. In order for me to function normally now I’m taking one pill every hour and what I don’t know how one pill today would be of any help to anyone with this disease . Please call that number and there’s 988 is the national suicide hotline. I do understand how hard this disease is and you’re not alone ❤️
No need to apologize either ❤
What makes your CBT therapist so good? Btw, I’m a CBT therapist with PD. Thank you
I really connect with her, she knows me, and we laugh together. I am so so so glad that after my diagnosis I discovered CBT and found her, it was a life saver and helped me find a heathy perspective to live the best life I can with PD. She puts a plan/goal together at the beginning of each session by asking me what is on my mind and what I'd like to talk about and how many sessions I think I might need for the issue.
I’ve been watching your videos and they are really inspiring. Thank you ❤️
I was diagnosed 1st of March . When I went back after MRI which was good . The neurologist said he seen something different than what he seen 1st time , and referral to another neurologist at a clinic . They can't get me in until middle of November as a new patient . So I have no answers and alot of time to research and worry . Anyone have advice for me ? I am very ridged all the time ( but drs don't know how locked up I am daily ) . I am so upset just over ther wait .... just more time of u certainly with my health .
Any advice would be nice . Heard exercise and support group thus far
Thank you for your very personal video . Looks like your doing great !!!
Hi Jerry! Did your doctor change his mind about your diagnosis and that's why he wants you to see another neurologist? Since I am not a doctor my advice is what I would do. Have you discussed with your doctor seeing a Movement Disorder Specialist (MDS) vs a Neurologist? A MDS is a neurologist who focuses on Parkinson's...for me I would try to see an MDS while I waited for the clinic and November sure is a long time to be in limbo, especially with you locking up. Also try and take a video of your episodes and show them to your current doctor to say hey, this is really bad and I can't wait until November. Another option is to ask the people who schedule at the clinic you've been referred to if they have a list of people who are called when there is a cancelation of an appointment, to see if you can come in on that day. Exercise is a HUGE help in managing symptoms but also its good for the mind. I do all my exercising outdoors and being on the trails in the trees makes me and my dog so happy. Support groups are so great but you need to find the right one and if you're not sure it's Parkinson's then I would wait until you know for sure. I found an amazing cognitive behavioral therapist to help me process what was going on in my life during the time of my diagnosis, and this was also incredibly helpful for me. I hope this helps and keep me posted on things go for you!
It's now parkinsonism I believe . He told me that he was a muscle neurologist and my problem , last observation was joint issues . Thanks for your response and human connection , I feel very isolated at this moment in life . Medical care is just insane anymore
@@jerrym1070 I am sorry to hear that you are feeling isolated at this moment, but know that you are not alone! It can be a challenge to find the help that we need, but it's out there, we just need to be patient as we seek it out. Like I said, I couldn't process my diagnosis alone, I needed professional help so I found a CBT therapist, and was on a waiting list for the one that eventually I worked with. While I waited I met with other therapists to see, but the connection wasn't there, and I am so happy that I waited until I found the right one. Much in life demands patience, including medical care, hang in there and do what you can for yourself to feel the best you can feel during this time.
Thanks for your reply and support . And info about MDS
So, you do drink alcohol? I find it diminishes my motor control even more and I miss drinking burbon. So, I've stopped completely. Thank you, for your video.
Hi Matthew! I do still drink, and am having a Guinness at this moment. Not recommending it...but along with smoking, drinking is/are my vices. Guinness at 4.2% abv isn't so bad, but wine and hard alcohol like bourbon impact my motor control, but also make me WAY more dyskinetic. My weak spot is a really good Old Fashioned and a Hot Toddy. I do indulge every now and then and also do take breaks from drinking....though probably not as many as I should. And Bravo to you for stopping, I know how hard it is to do!! Thank you for watching and your comment!! 🥰
our parkinsons is almost the same, but i never drink alcohol,
❤❤❤❤❤❤❤❤
Thank you!! 🥰🌸❤️🥰
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Jennifer, can I ask what the amantidine is for?
I take it to help lessen dyskinesias and it helps with fatigue. Though I am a devout napper :) short and sweet!
@@ParkinsonsWigglesProject Oh ok. I take it for memory loss due to the Parkinson's
I only have occasional tremors but mostly I have stiffness, slowness in walking and walking in to doors or walls going around the corner ha ha
@@toryberch I wonder if what helps me with fatigue also gives some sharpness of the mind?! It also is an antiviral, helps fight influenza type A, which is interesting! Watch those corners :)
@@ParkinsonsWigglesProject I believe it does as my Neuro suspected lewy body dementia originally. Thankfully that didn't pan out but he did say it would help put some sharpness back in my brain :×)
Question? Was it hard to date with this disease?
I found dating when I was healthy hard to do!! So in that sense dating is still a challenge, but PD adds a nuanced layer but one that isn't all that terrible...and what I mean by that is when someone you meet is interest in you and still interested when you tell them about having PD I have found that their interest is serious and sincere. There are great people out there looking for love and someone to have fun and live life with...finding them is the challenge with or without Parkinson's. And I have to say, my perception that no one will ever love me again, is not the way to feel, because it's just not true 🥰
what you experience is the same as mine
Have you researched Vitamin B1?
Research asking what question.... Does B1 help with PD feel better or relieve symptoms? I am curious 🥰
im 39 and I just got diagnosed im so f** terrified I have young kids , I feel like I want to die
It’s not a death sentence! I’m still here 10 years later. But I needed professional help processing my diagnosis and I found a great therapist to help me get perspective. There’s a help number 1-800-4PD-INFO (473-4636) from the Parkinson’s foundation.
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I cried when you told about your shopping experience, because you asked for help, and that’s something very difficult for me. I’m still not there but you opened something in me to grow and not be so prideful.🥲. Thanks!
Hi Debbie! I’m an only child and have been taking care of myself for a long time, I understand your pride 💕 I was surprised by how easy it was when I found myself genuinely needing help and to find someone so kind and ready to help without an ounce of judgement. Thank you sooo much for your comment!! 🥰