Parkinson's Off Time & Fighting Depression

Beware! This is me unscripted and unedited (except for when I get rid of my chewing gum :) I have always wanted to do a video without edits, without cutting the goofy parts that we don't want anyone to see. This is me with Parkinson's during an off episode. Since my MacBook pro needs to be sent in for help this was the perfect time to do this video I thought, since I have none of my usual tools. Hope you enjoy!

[@evabeaver3452]

2018 I was diagnosed with early onset Parkinson’s at the age of 60, since 2021 I’ve been diagnosed benign tremor Parkinsonism, now back to Parkinson’s. I love “real” ! You are real.

[@ParkinsonsWigglesProject]

Eva thank you so much for your comment and great compliment!! Authenticity and being real is what is all about in my book...sorry to hear about the back and forth diagnosis but it sounds like it was finally settled. Take care and thanks again 🥰

[@JeremyMcdonald]

Another amazing video! Thank you so much for your honesty and vulnerability with your struggles. You are an inspiration to so many!😊

[@ParkinsonsWigglesProject]

Thank you Jeremy!! You’re inspiration as well with your sense of humor…we all love and need to laugh and you bring laughs and smiles!! 🤗

[@katiej4755]

Hi Jeremy-fellow St. Louisin here! I just wanted to thank you both- I subscribe to both of your channels and I love your content. It’s really relatable and honest. Thanks for putting it all out there!

[@JeremyMcdonald]

@@katiej4755 Thanks, Katie!

[@tabuleirocmd]

I liked very much your positive attitude in this video and want to ask if you have ever considered using the acupuncture technique employing the permanent needle? I´m not saying it cured everibody but brought better life quality to many. Please don´t be upset for me suggesting it. I don´t earn any commision doing this, be assured! @@ParkinsonsWigglesProject

[@joshuabriggs7114]

Thank you! I needed this! I was Diagnosed 6 weeks ago at age 54 and am really struggling with finding acceptance in my new identity. PD really sucks! It helps to see you still coping and being creative and positive with your reality. :)

[@ParkinsonsWigglesProject]

Hi Josh! No one wants to be in the PD club but here we are 🤗 It's not easy but I can't stress enough about how important it is to find acceptance. I needed professional help doing it and it was THE best decision I made after my diagnosis. My therapist is part of my health care team and if I get overwhelmed by something, that I am unable to process on my own I call her up for an appointment. In the beginning it's so scary because so much is unknown....be patient with yourself learning about Parkinson's and your Parkinson's body...it took me time but I found mine and am still living a great life. It's not the end, and there are medicines out there that can manage your symptoms, we all just need to find what works for us. Thank you for your comment! I really hope my content is helpful and it means so much to hear from people that it it ❤

[@Ann-sf6od]

I too struggle with depression. Absolute hopelessness. But I came to realize that though I am justified in feeling sorry for myself, it doesn’t get me anywhere. I am exersizing more while struggling to appreciate what I do have which is making huge difference. Thank you so very much for sharing with all of us!! You help us so much!!

[@ParkinsonsWigglesProject]

Thank you Ann!! A question I try and remember to ask when I am feeling really down is how is this state of mind serving me and helping me get where I'd like to be. It's great to hear you have had this realization too!! Thank you so much for your comment 🥰

[@sharoncribbs7516]

Thank you for sharing. I don't think most people understand that having Parkinson's is more than a tremor.

[@ParkinsonsWigglesProject]

Thank you Sharon! 🤗

[@lisaclyburn1501]

Recently diagnosed after suffering with right sided symptoms for 3 years and finally having my fourth neurologist diagnose me with PD. I am so thankful for your candor and your willingness to share it all! I don’t feel as alone!

[@ParkinsonsWigglesProject]

Thank you and you're not alone! Knowing others with PD is essential and I can't tell you how much it helps 🥰

[@haninshuaib7289]

Hey I have right side symptoms and I’m trying to figure out with me ! May I share your symptoms?

[@parkinsons-oc]

Love the way you keep it real Jennifer. And I started backing up my Mac while listening to your video. I think my computer is on its way out also. Thanks for the reminder!

[@ParkinsonsWigglesProject]

Also you can back up bookmarks, I’m going to miss my bookmarks!! All that research, but it can be done 🙃 Thank you and happy to be the back reminder!

[@jerrym1070]

Sorry to hear about your computer , hopefully you can get a new one with new gear soon . Your looking great and hearing you have gotten to a place of acceptance and finding new things in life is encouraging . I am definitely in moments of darkness , still trying to comprehend my MDS visit last Friday .

[@ParkinsonsWigglesProject]

Find your ninja and you will find the answers you are looking for. I know it's not easy and that it takes time but I believe we can find the way to find our way ☺

[@wakajawaka44]

Thank you Jennifer for taking the time to make and upload your videos, they are very informative and supportive at the same time.

[@ParkinsonsWigglesProject]

Thank you so much Waka!! 🥰

[@dunnemiriam15]

Thanks so much. You are an inspiration. I received a gift today from one of my daughters endorsing my abilities to be resilient and strong. The dark moments have pulled the carpet from under me but I manage to shake them off quickly. I am going to take your advice and find a ninja. You have been carrying me through the jungle of words, ideas advice and most importantly the value of honesty. Thus disease has me doing things I should have done years ago. Thanks for you , you are precious. Mimi From My cosy bed in Ireland

[@teeburke5497]

Really feel comfort from your videos. Newly diagnosed and figuring everything out. You inspire me. Take care ❤

[@ParkinsonsWigglesProject]

It's a lot to figure out, and it takes time to do. How we go about doing it for each of us is our own journey. Thank you for your kind words & you take care too ❤

[@rogerokelley]

What a wonderful and encouraging video‼️‼️. I have those same times, but please know you are doing such a positive thing by having this channel. It help so many people. We all have our up days and down days. One day I Will need a cane. Next day a walker. Next day my ultra lite wheelchair. Its all still a blessing and I take day by day. Lewy Body Dementia is similiar to Parkinsons so I understand. Ive had to scoot to other rooms too. My hallucinations at night are so scary but I know its not real. All of it is a terrible disease but we got it. We face it. We stay positive. My prayers are always with you and the entire Parkinsons Disease family. God Bless.

[@ParkinsonsWigglesProject]

Thank you so much Roger! Staying positive always : ) and it's great to hear that you are too!! It makes a HUGE difference in how we feel!!

[@alindaramos-marciano8130]

Watching you was like watching myself! I think of PD as a gift/opportunity for living a mindful life. I, too, am exploring my creative side and am inspired by your choice to do things you have never done before. Thank you for your authenticity and being a guiding light to us all. ❤

[@ParkinsonsWigglesProject]

Thank you so much for your comment!! Keep creating and exploring, we never know what we may find or discover about ourselves 🥰

[@bonnieschwartz8087]

Jennifer, thank you for your bravery & vulnerability that you are willing to share. You get real about PD, and it helps me (and others, I am certain) be more open & honest about what it is like to get through each day... the good and the bad. But like you say, it's good to be alive.

[@ParkinsonsWigglesProject]

Thank you Bonnie!! Been missing our conversations and have to organize a chat soon 🥰

[@Michael-he7xn]

Brilliant honest video. Can you bottle some of your positive karma? Sorry to hear about your confuzer crashing.

[@ParkinsonsWigglesProject]

@@Michael-he7xn Thank you Michael!! My computer is back, whew....the positive is out there, it's a perspective that can be allusive, but it's out there waiting to be found 🥰

[@hoosier74444]

This is the best video you've made. It's very raw, and real, which makes it the best. But I don't know if i'm ready to watch one of my heroes crawl around the bedroom. I think I'm going to have to get tougher to face the next 10 years. You are an inspiration. Thanks.

[@ParkinsonsWigglesProject]

Thank you so much!! I had been wanting to do an unedited, unscripted, just me, and that was the morning when I said to myself, now is the time. The human spirit amazes me and the next ten years for you my not be that bad...it's a perspective thing truly 🥰

[@anthonylawlor2904]

I'm going through a strong off period at the moment so this post really spoke to me. I'm nine years in and I agree with you about Parkinson's being both a curse and a gift. What I have learned is beyond what I can describe here. The essence of it is, the form of life is less important than hte way I experience the form.... Thanks for everything you're doing. You are a true inspiration.

[@ParkinsonsWigglesProject]

Thank you for your comment!! I am glad to hear that this video spoke to you....and love what you said, "the essence of it is, the form of life is less important than the way I experience the form." So true!

[@nunoa.fernandes6541]

I love your spirit. I feel like you are a kind of medicine for me. I’m grateful for your example. ❤

[@ParkinsonsWigglesProject]

❤️❤️❤️ Thank you! ❤️❤️❤️

[@ScottJWilson420]

This video really helped me understand what I am beginning to go thru. Your description of on/off is great. I have progressed slowly for many years but recent GI issues seem to have accelerated PD and my attempts to treat with just cannabis no longer work. C/L helps but short on times complicated by gastroparisis. Thanks for sharing.

[@ParkinsonsWigglesProject]

I’m so glad to hear it’s a helpful video 🥰 I am from Illinois and a lover of ALL foods but have been contemplating trying a vegan diet for 6 months. It’s so good for the body and brain… I have been resisting but am getting closer and closer to trying it out. It could help your G.I. issues as well 🤗 might be something you might look into.

[@alittlebitshaky]

I think the PD gift in these situations is determination. Crawling until you can shuffle. Shuffling until you can walk. Walking until you are exhausted. Tears, yes. But smiles too. And the knowing, deep down inside that tomorrow, if you need to, you will do it all again. ( hopefully minus the tech issues 😁)

[@ParkinsonsWigglesProject]

I absolutely love your poetry!! "Crawling until you can shuffle. Shuffling until you can walk. Walking until you are exhausted. Tears, yes. But smiles too." Thank you so much!! 🥰

[@alittlebitshaky]

Thank you. That’s my PD strange gift!

[@brionkerlin2687]

Kudos!

[@ricksuvanto5009]

Thanks again for your honesty about your depression. I too have fought depression which I believe is one of my first symptoms of Parkinson's. For me the moment clicked when I decided to go on antidepressants. I tried therapy, exercise, eating right ,meditation, but after a while I just realized I didn't want to continue my life this way so I caved in and took a drug. I tried so hard not to go on medication . I realized I couldn't live my life this way anymore. And in some weird twisted way this is Parkinson's gift to me ,my life back. Without it I would never have taken the medication, but I knew that my time was more limited now and I wanted to enjoy every moment I could .

[@ParkinsonsWigglesProject]

Thank you for sharing Rick!! We all do what we need to do for ourselves and for both of us I am happy that we found a way to feel better. I too believe depression was my first symptom and didn't say it quite right in the video, but I believe that the heartbreak was made sooooo much worse because of a soon to be diagnosed Parkinson's....but I didn't know this at the time.

[@user-ho7cp5fb9q]

I greatly appreciate these videos.

[@ParkinsonsWigglesProject]

Thank you! 🥰

[@davestuart8864]

Sorry to hear about your Mac book pro 😢 exercise has worked wonders for me 14 years into this, glad to hear you go outside and walk with the dog..❤ thank you for sharing..

[@ParkinsonsWigglesProject]

Got my Mac back :) and exercise is key!!! Thank you for you comment :)

[@Rosie_Apple_Delight]

Your vulnerability takes real bravery. Thank you ❤️

[@ParkinsonsWigglesProject]

Thank you Rosie!! 🥰

[@davidhughes5998]

Once again a brave inspiring video. Helping alot of people.

[@ParkinsonsWigglesProject]

Thank you David!! ☺

[@toryberch]

Jennifer, I'm sorry hon you have to endure these swings of highs and lows 🥴 but your chronicling your raw moments helps so many people relate to that exact moment and time. Which in turn helps them to see it's ok , I'm ok someone else does this too!

[@ParkinsonsWigglesProject]

Thank you Tory! I hope so….I’ve been surprised but also not by how many people have yet to meet others with Parkinson’s because you’re right, it’s a helps us knowing we’re not alone 🥰

[@Phil-wt3uf]

Hit it’s phil from ur UVXY channel - woah I have to say amazing!! So glad u gave a great support with ur husband - important stuff u are doing God has a plan for you plain as day!!! Keep it up - perspective for me watching that’s for sure - and I really do mean it God bless you and your family and I’ll be praying for you whether Iu like it or not :)

[@ParkinsonsWigglesProject]

Thank you kindly Phil! I’m all about sending good vibes so thank you for sending them my way 🤗

[@jimcappelli2200]

Thank you for an inspirational, honest video,

[@ParkinsonsWigglesProject]

Thank you Jim!

[@JohnMcCreery]

Wishing you the best, too.

[@ParkinsonsWigglesProject]

Thank you John!!

[@berniehelbling2891]

I was watching this video yesterday morning. I’m exactly in the same situation. (Diagnosed 2013) when I was watching I was not able to answer because I couldn’t type. I was in my “Off” time. My iPad on a pillow with my left hand sliding clumsy over the touch screen.- In a way it Makes me sad to see others suffer like me. But there are people like you who are really inspiring! Thank you so much! I’m still not sure what is worth for me the physical symptoms or the depression. I’m still not sure what came first the physical symptoms or the depression. What causes what? I just know the worst thing with depression is that you’re loosing your friends!😢

[@ParkinsonsWigglesProject]

We lose, well not lose but move on let’s say, friends even when we are happy. I can’t tell you how many friends have gotten married, had kids, relocated, ect. and are no longer in my life every day like they once were. It happens because life happens. But you can meet new people and make new friends, but like all things in life it takes work. Since I’ve been able to manage my feelings of sadness my physical symptoms bother me most…and I do everything I can to not let it get the best of me 🤗 Thank you for your comment!!

[@tombreen804]

That moment around 9min very touching,well said,

[@ParkinsonsWigglesProject]

Thank you Tom!! I am amazed that I was able to hold the tears back 🥰

[@therealkathleenkiddo]

With you! ❤

[@ParkinsonsWigglesProject]

😘❤️

[@justinmariana12]

Thank you for the great video. I have depression, anxiety, bi polar and dealing with Parkinsons. Many people do not understand

[@ParkinsonsWigglesProject]

Hello and thank you for your comment! For a little smile I want to make a light joke and say that's a full plate :) I cannot say enough about how much Cognitive Behavioral therapy helped me...I have quite a few videos where I talk about depression...I had anxiety leading up to my diagnosis and really bad when I fly so I don't fly much anymore. There are ways to manage what you are faced with....it took me too long to find the ways to do it but I found the tools and hope you do to!! ❤

[@ClipsBitsAndMore]

I recommend looking up the mind diet to see if this will help. I face similar issues; I do a light eat early in the morning and my main bulk later in the evening. So I can function. Protein impacts and I do love a good steak. Parkinson’s gives and it takes. I also find timing my meals. I take my meds every 3 ½ hours. 1 hour before my meal I take my meds. That next half hour is my time to eat. Leaves 2 hours for the food to go down. I make sure to drink a full pint of water after the meal and then 45 minutes before my next meds. Hopefully to get the food down enough to not impact my next meds. Keep the good fight it all we can do. Thanks for sharing.

[@ParkinsonsWigglesProject]

Thank you so much for sharing what is working for you! Timing is super important and sometimes I have no problems, other times I do. It’s a lot of trial and error, and my weakness is a cheeseburger and my chili, yum yum! 🥰

[@Here---Now]

the idea of eating protein in the middle of the night is very smart.

[@ParkinsonsWigglesProject]

Lol! But it didn't work :) Worth a try though 🤗

[@LifewithParkinsons]

Hi Jennifer, so sorry your Mac is broken and hoping for a good backup. I crawl around in the mornings also, I've even had breakfast on the kitchen floor. Thanks for the off video and for sharing. I look forward to your videos.

[@ParkinsonsWigglesProject]

I’ve got a Genius Bar date tomorrow and know I will have to send it off but I’m hopeful! Yeah, some mornings are tough, and then others no problem?! Thank you for your comment and I look forward to your videos too!

[@LifewithParkinsons]

@@ParkinsonsWigglesProject Let's keep our fingers crossed for a genius behind the bar. Nope, I crawl every morning now until my right leg unfreezes and becomes useful again. I've turned it into my morning wake up session. I put my tunes on and stretch/exercise drink lots of water until it wakes up. Been meaning to record that, I'll add it to my list.

[@jerrym1070]

Now that is a 1st testimony . Eating breakfast on the floor . Sounds like a horrible start of a day . But you push through .... inspiring

[@SouLightness]

Thank you Jennifer. Its the first time i hear someone talking about relationships affecting Parkinsons. Im just coming out of a very covert emotionally abusive relationship. This, added to the Pd hasnt been pretty. Sill depending on living in his property and very slowly moving out. I wonder how many of us are there, trapped in these situations with very little resources...wonder if someone could make a video about it. Again thank you for your vulnerability and openness.

[@ParkinsonsWigglesProject]

Emotionally abusive relationships can for some be worse than physically abusive ones. I wish that no one had your struggles nor lack of resources...you're not alone. I found today on the Parkinson's Foundation website they have a Helpline 1-800-4PD-INFO (473-4636) which could be worth a call. It's good that you're getting away and moving out! Keep looking ahead and doing what is best for you....be patient, it takes time. Thank you for your vulnerability and openness! ♥

[@SDWP]

Well said!!! Such a great message. It's really all about perspective. I've definitely shifted mine since being diagnosed. I try to focus on the good things in life. BTW, I love your laugh....so adorable. You're so awesome. I hope your computer comes back in tip top shape!

[@ParkinsonsWigglesProject]

Thank you!! So true about focusing on the good things in life and I love your laugh too!! I've got at date today at the genius bar so it will be sent away and I will keep you posted 🥰

[@katiej4755]

I’m so envious of where you live! I’m really starting to think that where I am living currently is bad for my spirit and bad for this disease. I feel a little stuck though. For now anyway. 🤷🏻‍♀️

[@ParkinsonsWigglesProject]

I was a city girl for years and am officially a country bumpkin now. Look up the phrase ‘forest bathing.’ While hard to prove but being amongst the trees for me is so healing! I’ve been stuck too but found my place and wavelength, you will find yours too! 🤗

[@markocean2811]

❤thinking of you

[@ParkinsonsWigglesProject]

Hello!!! I’ve been thinking of you too ❤️ Hope you’re doing good old friend!!

[@JohnMcCreery]

A strange gift? Yes it is.

[@ParkinsonsWigglesProject]

Indeed 🥰

[@Texastentialist-ls9kz]

Have you considered DBS? It helped me tremendously.

[@ParkinsonsWigglesProject]

There are some interesting developments with closed loop vs open loop DBS that makes me more slightly more comfortable with it but to be honest it scares me. Love hearing when it works for people!! 🥰

[@joemancini2988]

Jenn, do you know about Neuralli? It’s a probiotic specifically for PwP. It’s not a cure but it is a treatment. I have been using it for over a year now.

[@ParkinsonsWigglesProject]

I haven't heard about it but love fermented foods like sauerkraut and kimchi 🥰 Thank you!!

[@johnpjf]

I'm new to the group. Diagnosed 5 years ago. Has there been any progress as to the Parkinson's glove study at Stanford? Nice video.

[@ParkinsonsWigglesProject]

Hi John! I am not sure about the gloves but there's a device called the Cue 1 that uses a similar vibration tactile therapy that you put on your chest. I have been waiting and waiting to get my hands on but it hasn't been approved yet. My fingers are crossed! Thank you for watching and for your comment!! 🥰

[@johnpjf]

@@ParkinsonsWigglesProject thanks for that information. There's a video on KZbin about the glove. I recently saw where the study was canceled or postponed. Was not sure why. If you Google glove Parkinson's you can see the video..... Has a guy running a marathon after treatment.

[@GoProGoalieUzi]

I could cry with you right now as well, more so last night.❤❤ I am a little over 5yrs into it, and it sucks. 23-25 sinimet per day, bit the offs are so bad. Can’t walk, shuffling, ridgit.:to the floor I go and stretch (cracking my joints best I can) last night I broke down😢😢😢😢😢..rough night maybe 1hr of sleep, but still got up at 5:50am and exercised then work. I hope your is better today my dear❤❤❤❤🇨🇦

[@ParkinsonsWigglesProject]

I hope your day was better than yesterday & am so sorry to hear of your struggles!! Is your job stressful? Stress destroys me and I do all I can to not have any!! For sleeping there are great teas, and some people I know say Magnesium helps them sleep better. Thank you for sharing what you are going through...we are in it and learning together!! health.clevelandclinic.org/does-magnesium-help-you-sleep/

[@GoProGoalieUzi]

@@ParkinsonsWigglesProject yaaa my job can be very stressful and lots of adrenaline! Catching shoplifters/employee

[@ParkinsonsWigglesProject]

@@GoProGoalieUzi I don't know how you do it!! I play poker and that is where I usually feel lots of adrenaline, and it's crazy but playing live I've gotten the shakes after big hands but I get used to it...but recently I played in a tournament online and it was only a $10 dollar tourney but I shook for almost 30 minutes after I made a big call and WON!! I still was shaking and slightly frozen if that makes sense for 30 minutes after. Is there a stress-free version of your job? Kind of kidding but not....stress just makes my symptoms so much worse!!!

[@GoProGoalieUzi]

@@ParkinsonsWigglesProject well I’ve been doing it for 22 years!! Seen a lot of crazy things..I’m just going to keep battling until …..everyday is a battle ❤️❤️❤️🇨🇦🙏

[@Mr244u]

Could you tell us the medications you are taking?

[@ParkinsonsWigglesProject]

I take C/L 25/100 every 1.5-2 hours, 1 Rasagiline, and 2 Amantadine. I discuss in more detail in my Parkinson's progression video :)

[@user-re4rx3tr1s]

so very pretty naturally

[@ParkinsonsWigglesProject]

Well thank you!

[@jeanninehill6009]

Thank you, Jennifer, for your honesty and vulnerability. Whether on or off, you are a beautiful person with a kind and compassionate heart. May the Lord bless both you and your dear Mom each day.

[@ParkinsonsWigglesProject]

Thank you so much!! 🥰

[@MikeMercury]

I’m having parkinson myself, your videos help me from montreal canada

[@ParkinsonsWigglesProject]

Thank you Mike!! 🥰

[@MikeMercury]

you seem pretty young......I'm 74 so I guess I had it coming but you my dear you're a champion in dealing with it wish you the best

[@ParkinsonsWigglesProject]

@@MikeMercuryThank you Mike!! I was diagnosed when I was 38 and am 47 now. What can you do really...and it could always be worse so...I am making the most of each and every day for as long as I can : ) I wish you the best too!!

[@MikeMercury]

@@ParkinsonsWigglesProject merci dear

[@carolbrenner3121]

I’m trying the new probiotic for Parkinson’s disease

[@ParkinsonsWigglesProject]

Hope it helps you feel better 🤗

[@julieanna8495]

I look at this diagnosis as a gift also. For 65 years, I always had my focus and antenna up for everyone ELSE.🫤. I always put myself dead last. What makes my parents happy, my Sister happy, then what makes my Husband happy, my Sons happy, my In-Laws happy. I never once considered my OWN self. Perhaps that is precisely why I got this PD. 😐. But when I got this diagnosis last month, I finally took my focus off of all of them-and started asking myself-what makes ME happy? It is like PD snapped me out of my people-pleasing trance. 🙌💪🏼. Now I finally realize that I am important too. Now I am treating myself like I would a beloved friend that I care about. I am tired-I go sit down. I am no longer a human DOING.✨🙌. I am becoming a human BEING. ❤️🌹🌸🌿🌱

[@ParkinsonsWigglesProject]

Thank you @julieanna8495 for sharing! Having spent most of my career in the restaurant business I know what it means to be a people pleaser, I am with you. "I am becoming a human BEING." I love this ♥💕♥