For Those Recently Diagnosed With Parkinson's ❤️

Have you recently been diagnosed with Parkinson’s disease? The first thing you absolutely need to know is that your life isn’t over and that you can still live a wonderful life with this disease. Yes there will be challenges, but there are many other health issues we could have challenges with. I think for those of us who are young and diagnosed we envision the worst elements of Parkinson’s happening to us right away.
I hear from subscribers often who are recently diagnosed but an email I received was darker than usual and the new person who joined a meeting I was in choked back their tears, it hurt to read the email and see the tears that wanted to fall...It brought my diagnosis and my feelings at that time flooding back. I wanted to give these people a hug and say it will be ok....Since I couldn't give them a hug, I gave them words of comfort and made this video.
Videos & Sources
My Carbidopa/Levodopa Evolution - 10 years with Parkinson's
• My Carbidopa/Levodopa ...
Parkinson's & Carbidopa/Levodopa Phobia
• Parkinson's Disease & ...
Why women with Parkinson’s are misdiagnosed more often than men
www.pbs.org/newshour/show/why...
Poll finds a quarter of people with Parkinson’s are wrongly diagnosed
www.parkinsons.org.uk/news/po...
Is It Possible That You’ve Received a Parkinson’s Misdiagnosis?
www.hiredhandshomecare.com/re...

[@alittlebitshaky]

For those just diagnosed my advice would be: A) stop and breathe…Parkinson’s isn’t going to race away out of control if you take your time, so stop and breathe. B) once you’ve got your head around the diagnosis a bit….move, exercise and don’t stop. Everything with Parkinson’s is better if you exercise….truly everything….EVERYTHING. Your tremors, your rigidity, your depression, your apathy, it will all improve…so get moving! C) breathe a bit more, listen to Jen’s stories, write your own stories, learn more about Parkinson’s…. D) live your best life That’s my wisdom after living with PD for 12 years ❤️ As always, Jen, love your work and you are definitely rockin the eyewear!

[@ParkinsonsWigglesProject]

Beautiful and wise words! Add sand mandalas and watching the sunset and or sunrise ❤ Thank you so much for sharing your wisdom!!

[@alittlebitshaky]

I like to think of it as a collective wisdom. Shaped by listening and sharing. So I thank you for contributing to this wisdom.

[@Positivevibes8300]

My husband was diagnosed with PD 3 years ago after his keno therapy sessions. He started taking levodopa/carbidopa and he was very active and doing fine but this year he went through a lot back pain sciatica nerve and Sesamoiditis so he couldn’t be active as he was then his PD symptoms get worse. Weight loss sleeping disorders depressed. It’s a nightmare😢. But we still have hope.

[@richardbiemann4562]

i'm 66, a fairly recent widower with Crohn's disease and no family nearby. I was diagnosed with PD two days ago. Your channel is the first one i found. I'll be back. Thank you

[@ParkinsonsWigglesProject]

Thank you for your comment and watching! I do hope I provided some helpful information....and if you have no family nearby you can find a PD family in a support group online or Rock Steady Boxing if there's one nearby 🥰

[@xjet]

Five years on from my PD diagnosis I'm doing great. Having the right outlook is super-important. We can't cure PD but we can sure put up a fight. After my diagnosis I lost 10Kg, started lifting weights, added creatine monohydrate as a supplement to my diet and now walk 5-10 miles a day (when weather allows). The things that worked best for me were exercise (use it or lose it), a high protein diet and trying out as many things in respect to diet as possible. Science says that exercise works because the endorphines released during exercise actually stimulate the production of dopamine. Likewise, coffee (counter intuitively) can be useful because caffeine also stimulates dopamine production. The creatine boosts energy levels and at least one study indicates an improvement in the symptoms of PD. I have probably read thousands of studies and medical papers on PD and joined many of the dots myself so that I'm really happy with my current situation. Although my first symptoms were a tremor, that hasn't actually gotten much worse and the most annoying aspects now are sleep disorder (my wife has the bruises to prove it) and dyskinesia that sometimes affects my hands and feet for 20 minutes at a time. My doctor has prescribed Cinemet CD/LD but I rarely take it because 95 percent of the time I don't need it. I realise that at some stage I will have to fall back to medication but in the meantime I've discovered that there's a *lot* you can do outside of taking pills. At this stage (in the second year of my eighth decade on the planet) I intend to live forever or die trying!

[@ParkinsonsWigglesProject]

Always love to hear people living life to the max despite Parkinson's!! Thank you for sharing 🥰

[@SDWP]

Great advice, as always! 🙂

[@ParkinsonsWigglesProject]

Thank you!! 🥰

[@tomrio9914]

Love, love, love your timely video. Just last night this was part of the discussion with an online group. Then this morning I was overwhelmed and stressed while writing a silly email. It’s often a roller coaster ride and even if you don’t like it get used to it. Never give up, fight back! 😊

[@ParkinsonsWigglesProject]

Thank you for watching and commenting!! No letting silly emails get the best of ya! ❤️

[@kendc4725]

Well done! As someone who is still fairly new to this whole thing, the diagnosis shock and immediate confusion are still raw. Many of us step out of the doctor’s office armed only with a prescription, a follow up appointment (“see you in 3 months, stop at the window on your way out”) and some brochures with pictures of a few happy Parkies doing their exercises. Thank goodness for you and others who help connect the community through social media!

[@rogerokelley]

Well said, God bless you and prayers. 🙏🏻

[@ParkinsonsWigglesProject]

Thank you Ken!! ❤️ My experience was pretty much the same as yours, some papers, a prescription, and follow up appt. The shock is real, and the person in our group the other night cried, and you could see them holding back the flood of feelings.....it brought me back big time. Not like messages don't but to see it in someone's eyes got to me.

[@JohnMcCreery]

I am a late-onset PWP, diagnosed in June 2023, 80 next August. But I agree with everything that Jennifer says here. One important difference may be that at my age, ending well is a bigger concern than living well for what could be decades more. In my case, daily exercise, healthy diet, carbo/levodopa (now paired with Comtan), and the PD community have made life a lot more interesting than thinking from the symptoms that I would soon shuffle off this mortal coil.

[@emmadwyer3851]

I was missed diagnosed for two years with essential tremors. Finally found a neurologist who did the testing and said I had Parkinson’s.

[@ParkinsonsWigglesProject]

Two years is a long time! But I am glad someone got it right ❤

[@doriscorr334]

Thanks for you video. You are so positiv. And it is tru there are fantastic people in the Parkinson community. No Guinness this time. You are good on your diet. Your glasses suits you well.

[@ParkinsonsWigglesProject]

Thank you so much Doris!! Guinness came later 🙃 and I am loving my new glasses too ❤️

[@thomasmurillo6947]

Hello. I think you're awesome. I was diagnosed 5 years ago . I'm 48 now . I love your channel ❤

[@ParkinsonsWigglesProject]

Thank you so much Thomas!! 🥰

[@joselugo1619]

I was just diagnosed a month ago, guess I’m still in denial, but when my body aches and I’m just not feeling the way I used to. It’s just surreal

[@ParkinsonsWigglesProject]

I was in denial too....kept telling myself coffee drinkers, smokers, women, and people under 40 are rarely diagnosed....but it doesn't mean never. For me medication was enough to get me feeling like myself again, and I hope you find your way to feeling like you again soon!! ❤

[@jnm.624]

Stay active!! Live your life to the fullest! Enjoy the journey; become an adrenaline junkie ...

[@ParkinsonsWigglesProject]

@@jnm.624 Yes! Yes! Yes! The poker table is where I get my adrenaline fix❤

[@joselugo1619]

@@ParkinsonsWigglesProject I have no doubt that I’ll start feeling like my better self again. I’m not the type of person that is still, don’t know how to stay still I’m always keeping busy and thank you for the videos you share…..helps more than you know ❤️

[@joselugo1619]

@@jnm.624 I’m definitely staying active and keeping enjoying my life to the fullest. Thank you for your support and kind words ❤️

[@JeremyMcdonald]

Great advice! I love your glasses too!

[@ParkinsonsWigglesProject]

Thank you!! 🥰

[@samanthamoss9072]

I was diagnosed in Feb I'm not on meds yet but doing a lot more excercise it's working for me I just have tremor in thumb at moment

[@ParkinsonsWigglesProject]

I stated taking meds in June of 2014....six months after my diagnosis. I know people who waited longer but as a restaurant owner I need to be able to move 24/7. Thank you for sharing 🥰

[@davidhughes5998]

As usual very helpful, good to talk and learn about parksons

[@ParkinsonsWigglesProject]

Thank you David! 🥰

[@rogerokelley]

My first neurologist was honest. He told me my issues were out of his league and to get a second opinion. I now have one of the best neurologist in the Southeast.👍 In the past I never knew there were different types of neurologists with different specialties. Sounds like I was uneducated about it but at that time “life was simple” and I didn’t keep up with doctors.

[@ParkinsonsWigglesProject]

I had never heard of a movement disorder when I was diagnosed and only thought about the tremor with Parkinson's, had no idea of it's impacts. You're not alone.....and we can't know everything 🙃

[@SF-cg6kn]

Fabulous advice, you've covered pretty much everything. Particularly important is a support group, ideally local but online is also good - It's very important to know that you're not alone. P.s love the new specs! 🤓👍

[@ParkinsonsWigglesProject]

You're not alone is so important for people to know! Thank you ❤

[@MToalPhoto]

Great advice. Love your videos.

[@ParkinsonsWigglesProject]

Thank you Mark! I love your photos 🥰

[@staceyconroy1630]

I've watched video this a few times. I'm trying to work out though it wrecks me for an hour after. I'm fine during the workout, but I have symptom overload afterwards and have to ensure I have couch time after a workout. 😵‍💫 Also, making small changes to nutrition. I could eat better but small steps and want to get my exercise working first. Just don't want to change everything at the same time. 😎🌴

[@ParkinsonsWigglesProject]

I have heard from others intense workout sessions or physical activity exacerbates their symptoms for a period of time and they will take an extra 1/2 C/L before the activity. My tremor which is not dominant comes out when I push myself. I am with you on the small changes incrementally....We have a lot to get used to 🥰 Thank you for your comment and watching!! ❤️

[@johnbutters3312]

Hi Jennifer, That's timely and clear info to help us 6:35 remember that conditions are different for newly diagnosed people. Compared with those of us who have been with Parkinsons for many years. cheers John

[@ParkinsonsWigglesProject]

Thank you John! ❤️

[@rogerokelley]

Oh it’s so good to see you Jennifer. “love the glasses”. You are so true. I’m blessed to finally find the right doctor. Last week I was able to get to Sonoma, CA. for Nascar Race. I finally got to WALK across Golden Gate Bridge “Bucket List” I used my Rollator walker and I was slower than others but I DID IT 🎉🎉. So excited.

[@ParkinsonsWigglesProject]

Wow Roger!! That's wonderful and you were in my neck of the woods...I had some friends go to that race. It was hot then so you must have gotten some good bridge weather, or I hope you did because it can get cold up there 🥰

[@rogerokelley]

Yes it was a bit chilly. Also, Sonoma has some wonderful wine. 🍷 Your neck of the woods? Wow! What a small world.

[@James-ws6du]

Was told I have cervical stenosis which might cause some of my Parkinson's symptoms to be worse. thank you very much for your videos they help.

[@ParkinsonsWigglesProject]

Thank you for your comment and watching! 🥰

[@MastermindSquare494]

The levodopa test is how I got my diagnosis. Within 30 mins of taking it,my stiffness tremor and slow movement improved.

[@ParkinsonsWigglesProject]

I remember C/L working almost instantly for me too! Thank you for sharing 🥰

[@shauntaylor-lovelightfamily]

My dog and me go big walks, walking is great

[@ParkinsonsWigglesProject]

Walking is the BEST! I love it and so does my dog 🥰

[@shauntaylor-lovelightfamily]

@@ParkinsonsWigglesProject I think my dog is my fitness trainer 🥰

[@emmadwyer3851]

I was referred to Level Eleven Therapy which was fabulous!

[@ParkinsonsWigglesProject]

Yes! I just looked it up.... physical therapy is so helpful and great to have access to ❤

[@toniwickard2115]

Thank you! This is so helpful as the significant of someone that has been diagnosed with PD AND essential tremor. May i ask how much sinemet u take a day and how often? Is there a max?

[@ParkinsonsWigglesProject]

kzbin.info/www/bejne/d32QaWljmb93n5Y

[@ParkinsonsWigglesProject]

Hi Toni! I shared a link to a video I did, my most watched video, where I go deep into my meds and research about amounts. I take 1 25/100 approximately every 1.5 - 2 hours 🥰

[@Anthony99355]

Senate passed the Parkinson’s Act bill. I have faith that we are close to finding something to stop the progression and one day a cure. Many other god news with research, I read doctors are working on DBS that will improve gait not just tremor. I know I’ve only had PD for two years but I have faith.

[@ParkinsonsWigglesProject]

I have faith too! Your DBS comment is great to hear because I have more gait issues than tremor....and this is one of the main reasons I have felt DBS isn't a good fit for me....yet. Thank you for sharing ❤️

[@Anthony99355]

@@ParkinsonsWigglesProjectI know you mentioned you have more issues with your gait than tremor, so do I. Do you get cramps ever on your calf? I have for a week now horrible cramps on my right glute, and calf. It’s hard to walk sometimes if I don’t sit down after walking 5 mins. Just wondering if you get that as well. Thanks

[@AFAblacksheepAFA]

Since you mentioned stanford. Have you heard about the parkinson gloves from Dr. Peter Tass?

[@ParkinsonsWigglesProject]

I have....I think they stopped that research though. Not 100% but I feel like I remember hearing that somewhere. Thank you for the comment!

[@AFAblacksheepAFA]

i wrote a mail to synergic Med, and they said that the Gloves could be available at around 2025

[@Ray-vl2kt]

Has anyone discussed being nauseous taking carbidopa lebadopa? I was given more carbidopa to stop it. It's working so far.

[@ParkinsonsWigglesProject]

Hello! I know someone who really struggled with nausea in the beginning, but they worked it out. Some people are sensitive to it, others aren't, but there are ways to work that out. Thank you for your comment and sharing your story!

[@MIKEPURCELL24]

I like the new glasses 🤓

[@ParkinsonsWigglesProject]

Awe thank you!! 🥰❤️

[@erictaylor6947]

I was just diagnosed. i have had issues for about 10 years. i am in major pain everyday. I take tramadol to help with pain. Super stiff and get leg cramps so severe that i cant walk for a few days without limping. and i still am trying to get meds worked out. I tried C/L and it made me feel like a zombie and i feel sleep. . i am now on mirapex and so far ok try to work my way up to doctors prescribed amount. Mirapex helped so much but still makes me tired on top of normal fatigue. I was told that i have Parkinson's plus but cant get a real explanation on what that is? i believe he means i have some atypical Parkinson's symptoms. I have action tremor as well. i am more interested in meds and how they work. I appreciate your videos. did you ever take Mirapex?

[@ParkinsonsWigglesProject]

Sorry to hear about your pain and fatigue! I never tried mirapex because it's an agonist and I felt vulnerable to compulsive behaviors and I had such good results from C/L. But I know people take Mirapex and it helps and it's great that it's helping you. I added Amantadine which is supposed to give a boost in energy and extend C/L. Are your cramps from dystonia? Exercise seems to help with fatigue but I am a prolific power napper...some days are worse than others.

[@erictaylor6947]

@@ParkinsonsWigglesProject wow thanks for the response! Really appreciate it. I have watched so many of your videos and they have been a source of comfort. keep it up. Yes i believe my cramps are from dystonia. They suck. I have never thought about a pill that would help with energy. It is so weird to me to have such fatigue, up to recently i have been 100 mph working and still doing a lot of physical work. now if and when i do it, it can wipe me out for days. Do you experience with your PD, what i experience - some days i am good other days i am tanked and have pain and fatigue like no other. What i am learning with PD is that everyday is different. learning to be thankful for both good and bad days but boy do i cherished the good

[@staceyconroy1630]

I've heard you say that you responded to C/L right from the start. Did you respond to C/L with the 1st dose? Or did it take several doses before you responded?

[@ParkinsonsWigglesProject]

I remember it working instantly….like the first dat of taking. 95% sure one pill, 99.9% sure day one. I know other people who it took time to work with. So if that’s you don’t give up! ❤️ Also another friend had serious issues with nausea and tried again a year or so later along with the help of a nutritionist and this solved their nausea issues.

[@staceyconroy1630]

@@ParkinsonsWigglesProject of course I've gone to Dr. Google and KZbin, and many things I've seen say C/L may take time to work, weeks or months, but that wasn't what happened. I noticed with the first dose, after 1.5 hours, that I was able to move better and I could turn my neck and my arm swing came back on my right side. I've only been on levodopa for a few days and it relieved symptoms from the 1st dose. I was so relieved that I could move, and then I had a 5 minute meltdown as the meaning of this relief from this medication set in. 🙃 Thank you for sharing your journey it has helped a lot!! This is all new and I'm working through it.🙃 I thought I'd heard you say it worked right away, but I couldn't find that video again. Thx 👍

[@katmouse9974]

Can you add the Support Group Link please? I was diagnosed a year ago with Lewy Body but now have been switched to Parkinson's with dementia. I would love to find a Group for Parkinson's. Thanks.

[@ParkinsonsWigglesProject]

Here's a few www.apdaparkinson.org/community/?gad_source=1&gclid=Cj0KCQjwsaqzBhDdARIsAK2gqndbS8NI02A_NQvyaDkMvskhaRTvrDVVBXqEELIMhnmwLFEBS2BitbcaAhZJEALw_wcB

[@ParkinsonsWigglesProject]

twitchywoman.com/events/

[@ParkinsonsWigglesProject]

davisphinneyfoundation.org/connect/

[@robertstilson2901]

MY NEURO OPINES THAT MY NEUROLICAL DISORDERS ARE "PROBABLY PSYCHOSOMATIC". THAT DIAGNOSIS TEARS AT MY SENSE OF SELF. "HOW CAN I BE TOTALLY OBLIVIOUS TO THE WORKINGS OF MY MIND? AM I INSANE? AM I FAKING?" I ASK MYSELF. I WON'T DETAIL THE EXTENT OF MY NEUROLOGICAL PROBLEMS HERE OTHER THAN TO NOTE THAT WITH EACH PASSING DAY MY SYMPTOMS ARE WORSENING: ATAXIA; PROPIOCEPTION, AND TREMORS MAY NOT BE PARKINSON'S BUT THEY SUFFICE UNTIL PARKINSON'S ARRIVES. I VISIT ANOTHER NEURO IN OCTOBER. MAYBE THEN THE ANSWERS WILL COME. IF THE DIAGNOSIS IS 'PSYCHOSOMATIC', I WILL DEFINITELY SEE A SHRINK BECAUSE, CLEARLY, I AM OUT OF TOUCH WITH REALITY.

[@ParkinsonsWigglesProject]

I am all for getting second opinions and therapy. We all have struggles and many of us have been misdiagnosed....it doesn't mean you are out of touch with reality. But in case you are just a little, I've been there, finding a great therapist that you connect with can be life changing! It was for me 🥰

[@haninshuaib7289]

For how long you been having Parkinson’s?

[@ParkinsonsWigglesProject]

I was diagnosed in December 2013.

[@christileneabrahams6416]

Can you share your daily menu with us please

[@ParkinsonsWigglesProject]

Hi Christine! I have thought about doing a few videos of my favorite easy get your vegetables recipes. Maybe a menu video would be good?! Would you be interested in that? 🥰

[@auroramatera7555]

Hi Jennifer, do you struggle with anxiety ? ❤❤

[@ParkinsonsWigglesProject]

Not really. I have had moments when flying....not a fan of airplanes! And a few moments at concerts but I am good I think at catching my thoughts before they go there if that makes sense? ❤️

[@rosemaryclarke6250]

That's mad. A neurologist can make an accurate diagnosis and why would you think your life is over. More positive thinking needed here Id say.

[@ParkinsonsWigglesProject]

To criticize a persons feelings in general, but especially regarding how someone feels about getting a Parkinson's diagnosis and the path they take to get diagnosed is something I aim to never do! My channel is all about being positive, being honest, and being myself 🥰

[@terrident4360]

I'm sure this helped a lot of people Jennifer. Thank you. Just seeing someone several years in who is young and vital will help people realize they can still lead a good happy life. Granted there will be more challenges now ,ore than some people face but less than others. And I must saw the parkinsonCX-KD9SDM6XLB46QR5W

[@terrident4360]

Sorry finger typing issue. I must say the parkinson's community is supportive, loving and a great resource

[@ParkinsonsWigglesProject]

Thank you Terri!! ❤️

[@ParkinsonsWigglesProject]

No worries! It's funny my typos drive me crazy and I would have sent a correction too 🥰 Even though I know it's no big deal 🙃