My Parkinson's La La Land - A Survival Tactic?!
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- Опубликовано: 30 май 2024
- I call this state of mind My Parkinson's La La Land for the reasons I discuss in the video. My Parkinson's La La Land is part of my mental health ninja, a survival tactic that helps me keep my head up and doing all I can to smile every day despite having this disease that's eating away at my brain. Thank you as always for watching and your comments!! ❤️
My Substack The Dill Pickle
thedillpickle.substack.com/
My Website
www.thewigglesproject.com
You deserve to be there just as much as any other person. I saw an interview with a guy who has Parkinson’s and does stand up comedy. He gets up there and makes all kinds of Parkinson’s jokes and everyone seems to enjoy themselves. By him doing that and you telling the poker players you have Parkinson’s, you’re also educating other people about it. It’s good for them to know that you can still get out and have fun despite the crazy movements. I vote you stay in la la land and live your best life.
Who's the comedian? I love hearing stories like that. I love playing poker so I will keep on playing for as long as I can....Thank you! And honestly, everyone at the tables I have played with have been really cool about it. But I have wondered lately how I might change the vibe, but should get back to the letting people see me out there and that you can still play poker with Parkinson's disease 🥰
I would not subscribe if she didn't! She's awesome 😂
Jennifer, I like your La La Land and my happy level goes up when I read whatever is your latest article.
Awe thank you!! ♥
Love ya, Jenn!
Love you too mister! ♥
Thanks for posing this question, Jenn. Other individuals' response to us has to do with their ways of seeing the world and little to do with us. If a person is repulsed or frightened by seeing a person's tremor, dyskinesia or freezing gait it probably has triggered their fears of illness or mortality. That said, I can fall into a "La La Land" of worrying whether I will be able to walk across a room in public without my steps freezing. I can be by myself and walk perfectly well. A few moments later, I can encounter a group of people, my feet freeze and they are asking me if I need help. If I am understanding you, Jen, my La La Land is the space in my mind where I hide or get lost that triggers or intensifies my symptoms.
I totally get the freezing feeling/fear when alone vs being around people. My La La Land is my happy place, where if I freeze, or am dyskinetic it's all good because I know if I panic or let it get to me it will make things worse. That's why I see it as a mental health tool to fight against those critical voices of ours that can bring us down ♥
“There is a pleasure sure in being mad which none but madmen know”.
One of my favourite quotes and it’s from the 1600s.
If La-La works, La-La is good.
PS I’ve never played poker😬
Oh my goodness is that a great quote!!! I la la love it!! ❤️ P.S. Poker is a great game, so good and so brutal sometimes. Not for everyone 🙃
Jennifer, you should absolutely go to the poker tournament. You are positive and pleasant no bad energy coming from you. It sounds so exciting and sounds like you love it. Go and have a great time, it's Vegas!
Thank you Terri! I am going and gonna play my A game. If I get wiggly, hot, and sweaty....Oh well! I can still kick butt 🙃 💕
Another thought-provoking one! Knowing the whole landscape, but homesteading in la-la-land sure isn’t a bad idea. Spent last week on a beautiful sandy beach. When PD angst tried to bubble up, I’d breathe in the salt air, look around and decide to stay in the moment. Maybe my head was/is buried in a little of that sand, but that’s fine with me. So - I vote for you to press on with the poker tournament, if it’s what you’d like to do, so long as the stress is outweighed by the enjoyment of it. And, who really cares what others at the table think. You have Parkinson’s … and they’ll just have to deal (pun intended)!
LOL! I love puns and that's a brilliant one 🤣 Yay for you spending a week on a beautiful sandy beach! That's probably what I should be doing. I love playing poker tournaments, but admit they are a bit masochistic because few make it in the money, and even fewer to the final table. But it is an experience and challenge like no other!! 🥰
First of all. WOW. Thank you so much for the Golden Gate Bridge clip. Watched it on larger screen Tv. So thoughtful and I Loved it 🎉🎉.
I remember the first time I went into a large store in my wheelchair. I held my head down and was like OMG what will others think seeing me? I had just as much right to be there as the next person. I later held my head up and pushed on through the crowd.
You have as much right as the next person to go where you want to without worrying about others. You have wonderful qualities so NEVER hold back.Go share them with the world 🌎.
Amen Roger! God Bless you
@@SDWPThank you. You also.😉😉
Awe thank you Roger and you are welcome! It's not that I worry about what other think but I am curious as to how it makes them feel....even so it won't stop me as long as I can still play : ) Thank you sooooo much for you kind words Roger ♥
@@ParkinsonsWigglesProject🥰🥰
My sister has Parkinson's, just turned 83 last week. I believe she's had it for years prior to being diagnosed. I recently moved her to the apartment beneath mine so I could help more. She's been dysregulated for so long, been trying to get her to keep a better schedule with consistent sleep, med times, senior day care 5 days a week- etc. It's quite stressful for both of us. Waiting for an appt with a movement specialist, hoping for DBS or focused ultrasound. The side effects of the meds are hard. Over the past five years with diet changes etc. she's dropped 137 pounds. If she does any sugar not close to a meal, she see's things that aren't there and argues with them. I finally got the day care people to honor the carb rule and it helps. Thanks for sharing your journey! I think my sister is doing a really good job of containing the terror she must feel.
Your sister is so lucky to have you! I know how stressful and overwhelming it is, but do your best to not let it get to you because as we all know, it does us no good. Yes your sister had it for years before her diagnosis. It takes many years for our dopamine producing neurons to die off and when physical/motor symptoms are seen it is estimated that 60%-80% have died. I hope you find a good MDS who has some options that will help your sister feel better! ❤
@@ParkinsonsWigglesProject - I keep pushing for more care, she's seeing a lymphedema specialist, would like to get her scheduled for Cranio-sacral therapy and get CSF moving again. PQQ is helping too. (supplement). I've been doing some gait training and educating her non-dominant had to write & color. She was an amazing artist & it seems to be transferring . Super clean diet, and I know immediately when she's had natural flavors, artificial sweeteners etc. at daycare. Dietary gets a call & a letter with receipt notice to sign to document. A recent study in 2023 had 7 or 8 pages of citations to document the link between PK and Alzheimer's and the plaque build up to insulin resistance and high carb diets. I went through a windshield in my 20's, closed TBI and was pretty much left to my own devices to recover and had to relearn so much. Frustration became my friend and signal that I was learning. I believe that our professionals are well meaning and dedicated, but few have ever had to recover. The nuance of the steps of the journey are lost, not recognized or considered. The body has an amazing ability to heal itself.
Regarding making other people feel uncomfortable, I actually think you are doing them a favour by getting out and about and living your life as you wish. I have noticed that people are uncomfortable around situations that they haven't experienced before. For example, how do you talk to someone in a wheelchair? People, without meaning to, can be overly patronising because they feel sympathy, but it comes out all wrong. Other people, who also feel sympathy, turn away and don't engage. But once you are exposed to that situation enough, it becomes normalised, and you can finally treat that person as just another person, which I believe is what we all want. We don't want to make others uncomfortable around us, we want them to see who we really are. So, by exposing people to the discomfort, they will gradually get used to it, and they will take that new insight into the rest of their lives, and other social relationships.
I absolutely love your comment! Yes ❤️ Thank you so much for sharing your beautiful thoughts and words 🌸
Hi new subscriber from Topeka. I noticed your Blind Tiger Brewery shirt on a2yr old video. Cool
Diagnosed 8yrs ago at 61. Restarting sinemet after a 2yr hiatus.
Enjoying your videos!!
Hi Scott~ My hubby is from Topeka and every time I travel home with him I get my Blind Tiger on....I have three shirts and you might see me wearing in another video...I love love love that place! I am happy you found my channel and are enjoying my videos, thank you so much for subscribing, your comments and for watching! I hope your restarting C/L goes as you want and need it to....I couldn't function without it! 🥰
That is cool!! Blind Tiger is great. I live very close to it.
@@ScottJWilson420 lucky you!!
Love being in PD La La land... totally get it. I am not there all the time, but hang out there often. I just cannot stay mired in PD info, webinars, etc... for long stretches. Just need a break off & on. I think it's healthy to forget about PD once in while if possible. I am fortunate to still be able to do so. Poker? Hell yes if you want to and enjoy it. I'll take paddle boarding and XC skiing. ❤
You are wonderful Bonnie! I can't stay mired in it either and have this saying....Don't OD on PD! It's important to be informed but....yes, forget about PD when you can and play poker, paddle board, and do what you love to do ♥
Good for you to be able to focus on other things aswell as parkinsonism. Lala land is fine to help you cope. Thanks
Thank you David! 🥰
Your body is telling you unmistakably that poker stresses you, and as you know stress (and covid) are bad for you, so just like everyone else, you have to find that balance between doing the healthiest thing vs. fun.
I am a libra and balance is something I am always seeking and trying to reach 🥰
I have anxiety and when I was told in February by my neurologist that I have Parkinson’s I thought that was it for me but now I make light of it such as I had a MRI of my brain the other day when they said nothing there I said I knew you would not find a brain. And I work the floor at a casino I tell my guess if I start walking in circles they may win a jackpot it’s just my way of coping
Thank you for sharing your story with us! 🥰
It would be fun to see you do a vlog of you finding or starting a Bar Poker League. They bring business to the bars. They are free but they give out prizes like trips to real money tournaments, so some people play them competitively.
I've thought about trying to something online to fundraise and give prizes away....and plan on vlogging my trip to Vegas 🥰
My significant was diagnosed a year ago at age 59 but unfortunately buries his head :( How old are you and how long have you had it? I really learn things from your videos; thank you
I was diagnosed in 2013 when I was 38 and am 48 now. Sorry to here about your spouse having a hard time but there is help out there! Thank you for your comment! ♥
dont forget youre a champion dealing with pd
Yeah! That's right Mike 🥰
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I'd would rather be singing "Happy" than "Let It Be" energy creates energy!!
I am so with you!! Though I love the Beatles ♥but Let It Be the song is not on my listen to list 🥰 Happy is such a great song that it's impossible not to dance to!!
I don't know much about poker but casinos usually increase my anxiety and make my meds less effective and go on to off state sooner. I'm thinking it's hard to put on your poker face when you've been dealt a great hand and have to hide your emotions. I'll probably start sweating or madly dyskonetic 😂
I am comfortable in casinos that I know. In Vegas they are just sooo massive and walking from place to place is a big big journey. My poker face is solid :) but my getting sweaty and wiggly is impossible to hide....and I think perplexing for those who don't know why 🙃
It's good to be in LaLa Land but only after you have things prepared in real life, then just forget about it and hope you don't need them for thirty or forty years. Just make sure you have the specific kind of advance directive form that asks questions about dementia, a plan for handicap equipment and modifications to your home, a plan and money saved for an assisted living facility or family caregiver, and a plan for what nursing home you'll go to, etc. (all just in case). And hopefully money saved for things like the best walkers and wheelchairs that Medicare doesn't fully cover.
For people out there who don't live in California, they should also plan for Medicaid Asset Protection so they can pass their estate to heirs instead of paying it all to a nursing home. California is reportedly going to zero Medicaid look-back period in 2026. Other states are five years look back period.
Yes! And of course I know this but have no advance directive....I will get it done but I have always existed in the more immediate realm, the now and near future....not the future future.
@@ParkinsonsWigglesProject Thank you for all your replies. We're looking forward to your WSOP vlog! One pwp, Mark Hogben, wears the camera on his GoPro chest strap because his hands shake too much. Or you could get a gimble camera stick. But nowadays the software that reduces shakiness might be enough. Come home with a bracelet!
Do you actually like poker or is it just busy work? If you just like the social aspect please consider starting a ladies bunko night, game night, or home game poker; you don't need the stress of a public room with mizregs trying to take your money. But if you're really competitive and you just love the feeling of winning money then definitely go to the WSOP and crush it!
There are ways to reduce hot flash symptoms with diet and there are also products like necklaces that you freeze.
You are definitely good energy and if anything those guys are the ones bringing you down, not the opposite. Good luck!
I have a strange relationship with poker. I love it because it's a puzzle that drives me to want to solve it. It makes me use my brain in ways that NOTHING else does...it's challenging, rewarding, punishing...it's life and there are so many lessons to be learned playing it. Looking into tips into how to cool down a vegan diet was mentioned, then I saw a great CNN documentary about Alzheimer's showed the real benefits of going vegan, and exercise ect, diet is so important. While I eat healthy I could do better. I am going to Vegas to play the WSOP and will do all I can to crush it 🥰
@@ParkinsonsWigglesProject If you need a dog sitter or housesitter let me know. I want to see you on TV!
@@Here---Now I will post updates on Instagram for sure! Thank you for the offer....TV would be crazy!! 🙃
Merci Jennifer
I will join your la-la land
Awe thank you!!
Me too