Two Chicks With Young Onset Parkinson's! Talking about Life With : )
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- เผยแพร่เมื่อ 30 ก.ย. 2024
- Heather Kennedy aka Kathleen Kiddo & Jennifer Sullivan of the Parkinson's Wiggles Project are Two Chicks With Young Onset Parkinson's & Having Some Fun!! This is the first time I meet Heather in person, even though we were put in touch around 2015 by a friend with Young Onset Parkinson's (YOPD) and have had conversations via technology but never face to face. It only took seven years but finally we met and it was wonderful to meet Heather and have some fun while talking about our lives with Parkinson's, and struggles and how we rock it!!
#yopd #parkinsons #twochickswithyopd
OMG. I’ve not even watched this yet but I’m so excited to listen to you guys chat!
Ooooo, thank you!! : ) I hope you enjoy our chat!!
Oh thank you! That was so cool. You know PD is so weird and such an individual thing that you often think no one would understand. Then something pops up and reminds you to be kind to yourself, to laugh and that you definitely are not alone.
Hay ladies! I am Glen from London England,So glad I found you both,loving your positive vibes! thank you both for sharing.i was diagnosed in November last year,i will definitely keep following you! Peace and Love to you both xx
Hi Glen! Thank you for your comment and find your positive vibes and share them too 🥰
Thanks for sharing your conversation with us Jennifer and Heather. There definitely needs to be more research done on behalf of women on the effects of Parkinson's and the medications.
Yes, there really does! Thank you David 🤗
I love both of you. I’m a young woman, 36, had PD for about four years now that we know of, but it is just soo wonderful to watch people who “get it”. Such a comfort and always uplifting even if the topic is a hard one. Keep up the great work!
Hello and thank you!! Will keep making videos and comments like yours are the reason why :)
Why is everyone so happy at the beginnings. It gets shitter an shifter and no one talks honestly
Hello! I have other videos in which I discuss my struggles and fight against depression. In the video I am linking I can't walk and scoot on the floor to hook up my camera. When I was diagnosed I knew I needed professional help processing my diagnosis and found a Cognitive Behavioral Therapist to help m e find a healthy perspective so I can live the best life I can live with this terrible disease. She is part of my health care team and when the dark clouds come for me, I reach out to her. Parkinson's sucks, but I am doing all I can to be happy for as long as I can as often as I can. I call it my mental health ninja and I hope you can find yours too! ♥th-cam.com/video/pMLQvKBER6k/w-d-xo.html
That is so beautiful , you two meeting after many years . Hope that you two went a shared the rest of the day doing something memorable . Look forward to more even if it's zoom . And thanks for the sharing of your life experiences
Thank you Jerry!! We had a great day together 🤗
Amazing conversation! You two are so natural together! And thx so much for the shoutout at the beginning 😎
Wish you were there to join the conversation! Thank you 🥰
It's good to see you two together. It's hard to believe you just met. I hope you can do this again
Thank you!! We are trying to get together for sure 💕 She’s very easy to talk with, so even though it was our first meeting, it felt likevwe were old friends 🥰
“Cats are going to eat my face” - classic Heather line! Love to you both and many thanks for your honesty and vulnerability ❤️❤️❤️
Thank you for your comment Rebecca! I had so much fun meeting Heather that day and making this video. She's hilarious❤
The coolest crossover event of 2022! Have you two thought about doing a weekly show?
We’ve talked about ideas but both of us suffer from not having enough free time 🙃 But you never know! Thank you!! 🤗
Fabulous! Yes, amazing how people think it's ok to just stare at the trembling, shaking or stuttering PD traveller.
Thank you for watching Richard!! 🥰
This is great ladies! I love seeing you two together! It is so nice to hear you guys talk about just everyday life with PD in such a casual and relaxed way. This video brought me a lot of comfort. Thank you ladies!
Thank you sooo much Dana!! & Happy to hear our video brought you a lot comfort 💕
I've come across your video for the first time since I've been diagnosed a year ago. I'm also in East Bay. I really like Heather and it was great to know she's close to me as well. I had seen her through DPF videos. I hope to get you to get to meet you 2 someday soon when I'm out of this self pity.
Hi Kitkat! The first and best thing I believe I did in the beginning was find a therapist to help me process my diagnosis. Getting diagnosed with PD is brutal, there's no way around that but there is a way to live a good life with it, as crazy as that sounds. I lived in Oakland for 13 years and you're welcome to email me 🥰jennifer@thewigglesproject.com
Sad that music? noise is used to cover up any words. Way to protect from any excluded neurologies from getting an6 useful data.
Thank you for your comment! I have received other comments about background music that I took seriously. Making videos is hard and audio is especially hard. But you will notice in more recent videos the background music level is much lower if I use it all 🥰
Is it my imagination, but does Heather move as if she is moving through honey? Towards the last part of the video she appears to have a more "natural" movement. Did the pills kick in? In comparison, Jennifer has the wiggles thru out the vid. My wife was diagnosed with Parkinson's 14 years ago and she has experienced all the situations these ladies describe, ie she was ok a minute prior and now she drops out.
I describe the surreal reality of going in and out of different states....in a perfect zone for a bit....then dyskinetic....then slow and stiff. Some days each one is more than the other. Thank you for your comment!
I feel so bad that I judged people who used handicapped parking or used a cane. Now I use a cane and handicap parking and I wonder what they think of me.
You can’t worry what they think of you. They may experience an enlightening like you have at some point.
100% Deer in the headlights look from the doctor about meds vs menstrual 😮so true!
Yes!! My gynecologist is working with me on some options....but yes, it's like I am out there in no mans land experimenting on my own!! It wasn't so bad in the beginning, but all that changed about 2-3 years ago/around year 7-8 after diagnosis. Also getting closer to menopause which, ugh, not looking forward to!
You girls are amazing, wish i could find a young friend with pd here. Ill keep looking
Thank you Howard!! You can find many for sure....there are groups online and the Michael J Fox Foundation has a buddy network, which I haven't used myself but it's worth taking a look at. Check to see if there are any Parkinson's Boxing classes. Also check out the Davis Phinney Foundation. Lastly events like the World Parkinson's Congress, which I wanted to go to this year, but sadly have to wait until next year, is another option 🥰
I find time dilation and the passage of time has a lot to do with this disorder. But truly the only thing that's real is now. as i tend to say The days drag on whilst the years fly by. it all happens in a heartbeat. all at this moment, all at once.
So true!!! 🥰
I have MS and I'm going to be checked for Parkinson's soon
When my symptoms emerged it was recommended that I rule out MS. It was ruled out. I can't imagine the challenges of having both and hope that it turns out you don't have both! Wishing you the best ♥
You look so beautiful Heather! Loved watching this. Marcia/Marsha ♥️♥️
Hi ladies! This was fantastic! A lot of great topics you hit on❤ I went through my first 36hrs off time episode. Not fun. Then had my first over dose?? Too much sinimet had me walking 367mph!! Hot as hell, and about to wear my tank top at Costco!! Love from 🇨🇦🇨🇦❤️
Wow! I can't imagine a 36 hour off time episode...sounds absolutely terrible and I am so sorry it happened to you!! Then it sounds like the meds kicked in big time, ugh! Let's hope this was some one off and you won't go through it again. I definitely have experienced walking faster than usual, like the Energizer bunny :) Temperature wise I am always on the hot side and carry my fan with me everywhere. Not sure if it's related to women's stuff or PD....it's can be hard to separate sometimes. Thank you as always for your watching and your comments! Great to hear from a northern friend, I love Canadians!!
Brilliant! That was so much fun xx
Thank you Sharon!! 💕
Cute vid! I was cracking up a little when I saw you with that fan. It reminded me of another video you did....hot flash. lol Glad you got in some girl time with great convo!
Lol! Hot flash city always 🙃 and yes when you visit we’re absolutely going to do a video together! Thank you! 💕
Loving the shout out to Patricks!!!
Jenn, another surprise I lived in Oakland from 1974-2003. I can also see with you and Heather that young onset women don’t seem to have speech problems from PD. 😂
I loved living in Oakland! It's changed so much and makes me sad to see how expensive it is and all the problems of gentrification come to life. Heather has a TH-cam channel Kathleen Kiddo and she does have some speech issues at times I believe....Check those out if you are curious. I am so thankful I still have my voice!!! 🥰
Heather, Listening to you makes me feel so much better. I'm about six months into this ("m lucky, I'm 78 and have had non-motor symptoms for about 20 plus years, and now the motor demons are on to me) and I appreciate your candor, your enthusiasm, your insights. Helps so much. Wonderful conversation.
Thank you for you kind words Jack! 🥰
Wonderfully warm, honest, insightful. Thank you so much. You may never know your impact from your courage and commitment for others. It is imessurable for me ❤
Awe, thank you so much for your kind words...Sorry it took me so long to respond!! Comments like yours mean the world to me and are imesurable as well :)
Thank you, thank you, thank you you two. Your broadcast always remind me that I’m not alone with this, condition. Please keep it going. I for one greatly appreciate it. Paul. Bend. OR.
Thank you so much Paul!! You're are not alone and I appreciate the feedback :)
Thank you ❤❤❤ for your channel. I’m 47 and I lived in Berkeley and the east bay for years and I too have YOPD. Im a big research nerd. Im wondering, do you try or would you be interested trying some solidly scientifically backed but “alternative” treatments? Things like photobiomodulation, cryotherapy, hyperbaric chambers, supplements like PEA, etc?
Just wondering. ❤. I’ve never met anyone else with YOPD. I really appreciate your channel and your openness!
The last person I told that I have PD responded with, “we all have our problems.” Which is so very true but….I was shaking and, well, damn…..
Anyhoo, thank you for what you are doing!
Hi Rosie! While not perfect I am really happy with my currents meds, along with exercise, a healthy diet, and my mental health ninja I am happy where things are at (now if I can only stay here and progress no more!!)....so no alternative treatments for me at the moment, but thank you! I have had one really bad experience telling someone I had Parkinson's and then they asked me to leave the casino. Sorry that someone totally discounted what you had shared with them...know that most people are sympathetic and kind. I love the Bay Area but it has changed so much since I left in 2010. It's out of control expensive which is heartbreaking, because in 1997 I moved to Oakland from SF because it was an affordable hidden gem. Thank you for your comment!! " :)
Fantastic! I especially liked the part about the meds being on and doing well, then, 60 seconds later, it all stops working. "I was there 60 seconds ago..." I always talk about it being like flipping a switch. And, you don't know when that switch gets flipped. I know I'm not in charge of that switch.
Thank you John!! We are so not in charge of that switch....most of the time I feel like I am but when it gets turned off it can happen quick....and then there are other times it stays on and my transitions are smooth. All I can do is go with it🥰
where are you from dear ?
Born in Chicago but live in sunny lovely California ☀️
@@ParkinsonsWigglesProject
I live in COLD cloudy Montreal ( canada)
I enjoyed your chat. Two of the stars of parkinson story channels. You need to do one with David and Jeremy, all four of you.
Awe thank you so much!! I've done two videos with Jeremy and David, but not with Heather. She's awesome and I loved meeting her that day and our conversation! 🥰
On another site the older woman said that she now takes a high dose of Vitamin B 1 . It has reversed her diagnosis of Parkinsons. She got her info from an Italian research doctor who has helped reverse Parkinsons for many people. Might be good to look into that. The Italian doctor is well known
Please the name of doctor?
I love watching you both separately, and now together- brilliant & thanks
Thank you so much!! 🥰
Great watching your video as always. It's funny how PD opens up a whole world of new friends. Hope to see more of you two guys together in the future.
Thank you Rick!! It's how I crossed paths with you, and what you have said is so true. Parkinson's will open a whole world of new friends, wonderful friends like you! : )
love listening to the two of you finishing each others thoughts. it would be great to hear more of your fluid tag team
I would soooo love to do another video with her :) Thank you!!
❤I love Heather on the DPF webinars
I love her too and the DPF webinars!! Both are awesome!! 🥰
My meds don't have an effect but I take them anyway. It's been a swift downhill path since I've been diagnosed. Not even a year has passed but the Bradykinesia seems to get worse on a weekly basis, not to mention the steady drop in sensation in my right hand. It's so difficult for me getting dressed and having a shower already. Exercise also has stopped having any effect, and I see it's harder doing exercises which I thought were easy just two months ago.
Have you talked with your doctor about the medicines not working? This isn't how it should be, at all. Your doctor should be willing to discuss your other options and try other medications. May I ask what you are taking and how often you are taking them? Also I have found that Parkinson's groups can be a great resource to hear about others, how their journey went in the beginning. Don't give up hope!!
Meds don't work for me either. I've been on almost any drug you can think of. C/L-dopa, Pramipexole, Amantadine, Trihexyphen, and many more. On Rytary now. I have tremor dominant PD, diagnosed 6 years ago. I've seen 4 different MDS specialists, and they tell me now my only option is DBS, which scares me utterly.
Enjoyed this conversation between both of you!
I'm pretty much in the off mode while on meds lol
Go figure ha ha...
May I ask how long you’ve been taking it and your age? I was 38 when I was diagnosed and am 47 now…C/L was my first and only med…then I added rasagiline, then later amantadine. About two weeks before my period my meds aren’t as effective.
@@ParkinsonsWigglesProject Hi Jennifer, no worries I'm 58. I've only been on C/L for about a year. I take 9 pills in the days time, morn-noon-night. I was put on the amantidine for my memory. I was forgetting when last time I took a shower was or my neighbors name. My Neuro suspected Lewy Body because of my symptoms being within a year of each other but my Parkinson's issues started in 2011 slowly. I was in mid forties
thumb or eye twitches then the great wall of constipation hit which sounds funny but it really is terrible. I know my Neuro isn't 100% convinced of my diagnosis as I don't fit the traditional symptoms the way alot do. I think it's PDD honestly. I have a strong family history on my mom's side for dementia. It's only by time that things will be clear :×)
@@toryberch I take 9 as well. Every two hours...at night sometimes I can get a four or five hour chunk of sleep in which is sooo great, but then I will get dystonia when I wake. Sometimes even every 1.5 hours when it's that time of the month. My mom was diagnosed in March with PD and she's coming to visit tomorrow. This will be the first time I've seen her in person since her diagnosis, and I am worried about her memory...she will be 70 in December. I hope that the amantadine has helped you, it sounds like it has! Thanks again for your comments and sharing your story!!
@@ParkinsonsWigglesProject Aaaaw, that's awesome Jennifer. I'm sure the visit will be comfy cozy :) Speaking as a mom, my daughter is almost 39 and I will try and hide emotions or something I don't want her to figure out like I'm good I'm ok but inevitably she does figure it out ha ha. Just be aware of the little things. I was raised in Salinas CA where alot of produce comes from. My Mom was an indoor produce worker. She wrapped cauliflower in cellophane all day. She ended up with undiagnosed Parkinson's due to it and I believe that's how I came to get it as well. You should introduce your Mom on video if she's comfortable with it. Have a great visit
@@toryberch Thank you so much! I would love to introduce her but she hates cameras :) though I might be able to. Like your daughter face to face she can't hide it and I know she has been on the phone so it will be sooo nice to see her and really see how she is doing!! I grew up in Tinley Park, Il. Which has grown so much since but it's still where Chicagoland meets big farms and big ag. My mom moved further south and is surrounded wheat, corn, and soy fields. She has been exposed to toxic industrial ag chemicals for over 25 years and where she lives has well water which I would also bet has unsafe levels of everything. It's heartbreaking! But she loves it there and doesn't think about any of those things. I know Salinas and love cauliflower. I always thought machines did the wrapping....I wish we all knew more about, thought about, and move of us appreciated the importance of the work that is being done on farms everyday by people like your mom!
You two have so much fun together! A new chic duo, for sure. I'll be waiting for your next broadcast.
Thank you!! 💕
I am planning on flying into San Diego and taking that bus to Tijuana to get that stem cell treatment.
www.michaeljfox.org/news/what-we-fund-highlight-replacing-dopamine-stem-cells-and-brain-cells
See link above and please be safe!