Parkinson's Progression 10 years in & Mental Health Tips
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- Опубликовано: 29 сен 2024
- As Parkinson's has progressed over the last 10 years I have found myself having more Parkinson's moments. These bigger moments let's call them happen now more frequently than they have in the past but don't happen all the time either. In this video I share some stories of my struggles as Parkinson's has progressed along with some mental health tips and strategies to help me get through those moments and what I do to trying to live my best life with this very physically and emotionally challenging disease.
Parkinson's Disease Progression. YOPD Years After My Diagnosis.
• Parkinson's Disease Pr...
/ jennifer___sullivan
www.thewiggles...
Love your stories and insights ❤ my anxieties stem from the fact that my hands and strength is not as it once was. But I count my blessings that I can still drive and go to work.. thanks again..
Thank you Charles! ❤️ I’m with you on counting our blessings, especially with driving !! Still have so much to be thankful for ☺️
Hey Jennifer 👋🤗👋
Your perspectives always lifts my heart
My anxiety modes is where my panic moments seem to be
Parkinson's anxiety is the worst for me but having the right tools in my tool box is what I have found to cope such as medication,avoiding any triggers, I have an emotional therapy Reborn doll that I absolutely love and it helps with chronic pain as well 😊
Thank you for your comment and sharing what works for you!! And yes to staying clear of triggers is a great idea as well 🥰
Thanks again for the video(s) - I was diagnosed in June, 2023. So far I only have mild physical symptoms. In watching your videos and the videos of others in the community, I feel like I've got a version of "survivor's guilt". 90% of the time I don't even notice my physical symptoms. I see others that are struggling to get out of bed and in such pain and it makes me feel like I should never complain when others are dealing with so much more than I am even though we technically have the same condition.
I do notice the cognitive effects more. I get very anxious when dealing with processes being explained to me. Like if someone is trying to give me step by step instructions, I get lost two steps in and I get very frustrated and scared because this is far removed from normal for me. I frequently forget what I was talking about in mid sentence. Most of the time I ask the person I'm talking to if they can repeat the last thing they said and 9 out of 10 times this get's me unstuck and back on track. Stress is the most common trigger.
The thing I get most anxious about is wondering how/when my progression will . . . . progress. Not knowing that is what I find most difficult to deal with. I see some advance quickly and others far more slowly. I see others that don't seem to have much progression at all. I hope I'm one of the lucky ones that progresses very slowly or not at all but there is no way of knowing and that's frustrating when trying to plan for the future. Wondering if I'll still be able to get around OK for our vacation next year. Constantly questioning my understanding of things being said and heard and fearful of a day when I don't second guess and take the misleading interpretations as accurate. But most of the time - I'm doing pretty good for the shape I'm in :)
Thanks again - I really appreciate your videos. Day by day - This is the way.
Thank you so much for your comment!! Day by day is indeed the way!! I so agree with that and find if I look too far ahead it's way scary, and this does no good because I none of us knows how things will be for certain. Stress is a silent killer is the saying, and not good for our brain. You can absolutely be one of the lucky ones with slow progression, and I believe to some extent we can create that reality for ourselves even if just a little bit I will take it! I am thankful for my cognitive abilities though my mind races and my mouth can't keep up with what I am trying to say sometimes 🥰 No one wants to be diagnosed with this disease but the one thing that has been good about it is the amazing people I have met in this community! We are here for you!
I love the comparison between your childhood story and how it relates to the anxiety and panic that comes with having Parkinson’s. And I love the locations that you record your videos in! Well done!🥰
Thank you Jeremy! I am so lucky location wise ♥and having friends like you!
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The anxiety associated with Parkinson’s is no joke. I sometimes feel it creeping in at odd times when I don’t even feel particularly stressed about anything. I give myself space, do deep breathing and sometimes distract myself with a game, a walk, or reading. I believe focusing on what I am grateful for is so important. I am fortunate to have a loving husband who is a wonderful care partner to me. I began to have anxiety issues before I ever had motor symptoms and it really confused me because I couldn’t understand why it was happening. Now I know it’s just the PD and I remind myself: I feel my feelings but I am NOT my feelings. I think these thoughts but I am NOT these thoughts. I remember who I am in my heart and soul, and know this too shall pass. Thanks for continuing to share on this forum. Blessings ❤
Thank you so much for the wonderful and helpful suggestions!! 🥰
Thank you so much for that encouraging message. Needed those words!
Thank you@@denajessup6675 ♥
just recently came upon your channel, loved your story tonight. I was diagnosed in October of 2017, at the Agee of 58. So it's been a little over six years now. I can tell you my # ! tip for getting through the bad days - You've got to have a sense of humor! My friends ask me frequently how I can make jokes and laugh about it. I tell them ,"If I don't laugh, then I will cry and I seriously try to find humor in everything during those times. In fact, you want to hear something funny? We have a lot in common, you see, a month ago my husband and I were at a concert (it was an Eagles tribute band) and we were having a great time singing along and dancing... and I had a couple of glasses of wine... but I ate too, just like you. but for some reason the wine went straight to my head this time and I was loopy!! My best friend had shown up with her new boyfriend (a great dancer) and we were having a blast. Suddenly I had to pee so bad I didn't think I would make it to the bathroom. I have just recently started having incontinence issues. Well I made it to the bathroom, made it in the stall. could not for the life of me get my belt undone, and you guessed it, I peed my pants!! and it wasn't just a little pee, it went on and on and on!! I called my husband and told him to go get the car quickly. then I called my friend and told her what had happened and she came running to help. Meanwhile the show had let out and the bathroom was packed and the two of us are standing in the stall in a puddle of my urine. at first I panicked and we both started crying. and just as quickly we both started laughing hysterically!!, trying to figure out how to get out of the venue without the crowd seeing my wet (soaked) jeans!!I told my friend that we were going to hold our heads high and find the nearest exit and get the hell out of Dodge!! and that's exactly what we did. and this time our tears were tears of laughter . Later at home, I went to get undressed and realized the reason I couldn't get my belt off was because I was wearing my 10 year old grandsons belt!! and was thrilled that I was able to fit in it!! So it wasn't the Parkinsons, it was the belt!! All was good!!🤣🤣🤣
LOL!!! I love that you shared your story and that you can laugh and cry!!! It sounds like you have wonderful friends and a sweet hubby 🥰 and your night dancing listening to music sounds great to me! A sense of humor and being ok with the PD adventure we are on is essential! I peed my pants once at the end of our long country road driveway. I couldn't make it to the house, pulled over and it's pitch black....but my jeans were tight and non stretch so I was unable to unbutton cuz my meds were fading too I stood there with my pants on a let my pee go free 🙃 Thank goodness I have towels laying in back of the car for me dog and laid a towel down to keep my seat dry and walked into the house said hi to my hubby and was so happy to get those pants off and be safe and close to the bathroom at home. But yes!! Your story is like mine ❤ thank you so much for the laugh and a great story!!
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Diagnosed October 2022, started meds March 2023, and felt like my 20-year-old self from May-July 2023. Apparently, according to the symptoms that the meds have relieved I have had PD for OVER 24 YEARS!!! I've had 1 symptom (chronic cough) for 24+ years, 2 more hit around 12-13 years ago (chronicconstipationand chronic muscle and joint pain). Only in the past 7, one after another, did the masked face, emotions disappeared, shuffling, tremor, dystonia, horrible memory, sleep problems, depression, anxiety, stooping forward, etc., start happening. I havent been on the meds a year yet and DBS is marked for 2024 and im just NOT READY! Mentally or emotionally. Since October 2023 i have been on a mission to slow the progression and try to get to a place where I mught be able to back off the Carbi-Levodopa.
I have started taking a long list of supplements, completing overhauled my diet, 20/4 intermittent fasting at least 4 times a week, weight training, and in February I am going to go to Costa Rica for a 4 day stem cell therapy. When I return I'm going to continue all the above and continue to do HBOT. At that time , I'll try backing off the Carbi-Levodopa and see what happens. I am literally throwing everything at my body, especially the supplements. I'm going to be working on an Excel spreadsheet of all of them soon. I want to start tracking them and me.
Doing all of this has somewhat kept me distracted to say the least, but my stresses are at there highest when I, 1. forget things, when I don't put things down on the calendar and I forget meeting, appointments, and such.
2. When I'm going 100mph, and I'm on the ball, but still can't accomplish one single chore or activity.
3. I look back my day and wonder where all my time went.
4. It takes forever to do something that should have taken me a fraction of that time.
5. When I let people down in that same way.
I already have a hard time asking for help, accepting help is even harder.
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Hello! I have always been independent and know it can be hard to ask and accept help, but I have opened new doors and can do it. I love helping people so....I imagine others do as well, especially those that love me so, that makes it easier. I know one person who has recently gotten DBS and I am waiting to hear about how it went. I don't think I will ever be ready for it to be honest....I also don't think because my PD is more about gait issues, my understanding is DBS is better for other symptoms. I hope all goes as you hope on your search! Have you checked out Dr.Laura Mischley from Seattle Integrative medicine? I have a number of friends who love her! What kind of stem cell therapy are you doing in Costa Rica if you don't mind sharing? I've come across some research that shows regrowth of dopamine neurons, but I am cautious and skeptical about almost everything 🙃
I stay mentally well by pursuing my faith passionately, by having a community of loving & kind people who lift me up, cover me, pray for me, encourage me and believe in my dreams and healing. I keep stress to a minimum and am very careful what I allow into my eye and ear gates. No negative, ugly, scary.. I pay very close attention to what I am thinking about and flush fear and the like as quickly as possible. I forgive quickly and choose to be understanding instead of offended.. not perfectly. I am developing a very strong belief that I already am healed in the eternal realm and am receiving that reality into my physical realm. I am keeping track of what my body is doing with a diary and I have a list of symptoms that I USED TO HAVE that are now gone!! I fill my life up with testimonies of healing. I sing, cry, dance, love openly and often and pursue gratitude with a fire and passion like never before.. I am thrilled to be a part of these discussions which I deeply appreciate.
Miki
I was almost a music major....I love love love music, singing, and dancing! I will have little dance parties all alone, or with friends, or my hubby....Getting silly and letting go, setting myself free to have fun and marvel in the moment, the music, and the love ❤️
Almost a year in (since Dx, anyhow) and I’ve had some funk - mostly over uncertainties with progression. Things started getting real a few months ago when I noticed the loss of some fine motor skills. Signed up for CBT, joined a support group, and found people like you out there who share their struggles and successes. All of that, along adding in a long walk most days, has helped the headspace. Thanks for what you do!
I had never heard of CBT until I started having symptoms....I am a BIG believer in CBT, because my therapist is truly amazing! Can't imagine not having her! Thank you so much for sharing and your comment 🥰
What you feel is normal for the situation we are in. The uncertainty of the future and day by day challenges. If your tired nap ! If you’re hungry have a protein shake. If you need a distraction , read or watch a movie. CBD gummies help with the panic modes. Pray too. Bottom line distractions help get you through the day. I’m 4 years in with this. Fell a few times so now I have grab handles in tuff areas. Watch the timing of when you take your meds. They can make you unsteady. You can do this. Day by day. 😊
Ģreat post as always, atm I try and take one day at a time. Stay positive. Ďavid.
Thank you so much David! One day is the way I heard someone say 🥰
Hi! Here's what worked for me: (intermittent) fasting, ketosis (cycling in and out), b1, nmn/nr, sauna, cold exposure. improve sleep and digestion.. I rarely go to sleep after 23. I have YOPD, My symptoms started more than 15 years ago (I'm 39 now) and the progression is very slow.. people cannot say I have it and I am not taking any PD meds. Of course everyone is different.. my dad got it at the age of 50. I am running a successful business and I love what I do and I think this also helps! I recommend dr matthew phillips on youtube.. I hope this helps!
Thanks, Jennifer. We probably are more self conscious and worried about being judged by others. I appreciate all of you that share your thoughts and anxieties. Makes me realize how important it is to look out for each other. Thanks again.
Thank you Tom! I appreciate comments like yours, thank you : )
PD sucks. Full stop.
But life doesn’t have to. The sunrise doesn’t. Dancing doesn’t. Ice cream definitely doesn’t. Exercise doesn’t. Hugs absolutely don’t suck. Clouds don’t. The list goes on and on and on.
Thank you Jen for your positivity and stories.
Choose Life.
Thank you so much!! I love your spirit, wisdom, and all that you have said 🥰
@@ParkinsonsWigglesProject I can’t claim the wisdom to be mine exclusively, it’s kinda like a collective wisdom.
I have four brothers and all I can think of is if I got stuck in those stairs as a kid with them around, they would have had a ball laughing and then pulling on my arms and legs. Glad you had a calming influence nearby who taught you a lesson you have held through life.
LOL! Good grief I could only imagine the torture! Being stuck was torture enough, can't believe I was able to squeeze in there in the first place. Thank you Lauren! 🥰
You are so inspiring and authentic. I'm in the early stages and even haven't been officially diagnosed. But, I know it's real. I've had non-motor symptoms for nearly 20 years. The holidays were hard. I've had depression for years, as ell as anxiety. I was usually able to work through it. But depression and anxiety at this stage of Parkinson's is a whole other animal. I had two recent anxiety attacks I need Xanax to get through. I'm trying some self-talk now. I tell myself that I've been here before. I know the signs. This is part of a pattern. I will get through it. Don't focus on it. Don't go down the rabbit hole. But, something came along yesterday to take my mind off Parkinson's. I was told I need a biopsy of my prostate. Oh joy!
Thank you for your comment and sharing with us Jack! I hope your biopsy goes well and there's nothing to worry about 🥰
Love the video and topic. Lately, I've been feeling a slight progression and there have been a few instances where worry or depression starts to creep in my mind. I've been able to train my brain to quickly shift out of those thoughts, focus on the present and not worry about what my body is doing. I focus to other things that help distract my mind. I'm glad you have ways of coping as well. I also don't care what people think when I start walking funny. That really helps as well.
Thank your!! Not caring about what people think is a must when you have PD, it's so helpful! As are having some tricks like you've mentioned to get your mind somewhere else ♥
Deep brain stimulation I got it 9 months ago
This is the first video I watched and wow! I am a therapist working with chronic/serious illness and truly appreciate your honesty, openness, and connection with yourself and others. I know it takes a lot to get to that point and I know everyone has a unique path in acknowledgement, acceptance, adjustment, and action. Thank you for sharing and taking time to provide others with tools and strategies! Rock on!
Oh my goodness, thank you so much for your comment! I like to think I have finally gotten to "that point" which does "take a lot" you are right. I know that the journey is ongoing and am open to it. Thank you for doing the work you do, because my therapist and the questions she asked me, the space she gives without judgement were essential to the place I am. You are doing the same for others and we need more people like you in the world helping people navigate a chronic/serious illness and help them find their path ❤️
yes, moving past shame and embarrassment. acceptance. yes! we can live our dreams.. I am pursuing my masters degree in psychology.
I love psychology! You go girl ~ We still have lot's of life to live 🥰
4 years in I have changed my regime from 1.5 pills ( 100/25 car/levo) three times per day to 4 single pills per day, one every 3 hours plus one at night if I can’t sleep. I also chew my pills and mix with 4/6 ozs water in my mouth this seems to get them going earlier. Many thanks for the videos they make great sleeping pills!
Thank you Geoffrey! Chewing the pills definitely helps and I usually do with water too or bubbly water. I have insomnia pretty bad but I do get some awesome nights of sleep here and there 🥰
Sometimes the only thing that keeps me going is my belief in Jesus Christ and no matter how bad things get (and they have) in the end I am in his hands. I've had Parkinson's for 7 years, first 6 years not too bad with Sinemet, but the 7th year all heck broke loose and I was having terrible off times and for a month became a quadriplegic and had to be helped to get around. Finally I found a Neurologist that knew Parkinson's well and would see me and he gave me Amantadine along with large doses of Rotary and I could walk again, not perfect, but able to walk. God is good.
Thank you for sharing your story and what works for you!! Happy to hear you found a neurologist that knew how to help you and that you were able to walk again! Even if not perfectly...I did a video about the history of walking, I am kind of obsessed with it now 🥰
Hi Jennifer are you on amantidine. I'm on it and it helps that and half doses of levodopa.
HI Andres! I am on Amantadine, I take twice per day, one in the morning and one at 3 pm 🥰
Life is made up of moments, some good, some bad. I try to enjoy the good and try to remember that the bad are just moments.
Soooo good and sooo true! ♥
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Another great video. Thank you for being there and sharing your feelings.
Thank you Mark!! 🥰
So happy to see your new talk, you look way younger than you said you are here in your new talk, and beautiful cat too
Awe thank you! Moji is beautiful and I have a handsome cat named Bandit...he's shy though 🥰
@@ParkinsonsWigglesProject I have 2 cats too.
Mother cat and her girl cat 🐱
Really loving your talks on RUclips also
It’s amazing going through something hard, but going through it, and making talks to help others
So , much respect ✊ to you .
Keep shining just as you are , and your cats too 🐱
@@shauntaylor-lovelightfamily Thank you Shaun! ♥
@@ParkinsonsWigglesProject that’s ok , keep shining
Great video - I love how you don't let PD stop you doing stuff 😊Beautifully edited, I know these things take time but we appreciate it!👍 You mentioned DBS , exercise caution, you don't appear to be at that stage and I know of three people who say that they regretted it...of course we tend to hear only the 'good' outcomes. Keep up the great work, these videos are very inspiring 😊👍. Thank you!
Hello and thank you so much!! I am soooo not ready for DBS and am not sure I ever will be, but I did ask her about the closed loop technology that is supposed to be a big improvement on the current open loop. I know some people who regretted it as well and I have more gait issues, and from what I know DBS is better for dyskinesia, tremor, and dystonia. Have also heard that in people with gait issues it can make it worse in the long run. Don't quote me on that, but I really appreciate your comment and noticing the editing 🥰 filming took a few days then most of the evening editing.
Hi Jennifer thanks for a great video to create discussion. To keep the anxiety and stress away I try and take time for just me, and exercise as much as possible.
Hi David!! Time for yourself....yes! Exercise, yes!! Thank you 🥰
Thank you for sharing. I am following your stories. Yes if I am late on meds my depression gets out of hand quickly and have a hard time calming down. Anxiety takes over. Can’t stop crying. I have learned taking the medication comes first!
Oh I am so sorry to hear! I wish I could give you a hug 🫂Time your meds right for sure and have a way to try and stop the anxiety before it kicks in if possible.
Thanks so much for your perspectives on having PK
I was diagnosed 20 years ago young onset.How often are you putting out these videos?
Keep them coming!
Hi Gary! I average 1 video every two weeks...sometimes once a week. I am trying to get on a once a week schedule but sometimes I am too busy and don't want to force it. Thank you so much for your comment! 🥰
Hi Jennifer. Thanks for this latest video I totally agree with you. I’m only 3 years in but you give me real comfort for the future. You are a beautiful woman inside and out. It’s a very difficult disease but one day at a time and you can live well with it I’m sure. I too had to pee all of a sudden but couldn’t prevent it this time 😅. That’s the way it goes you just have to not let out win keep positive as you are Parkinsons looks very attractive on you, that’s for sure ❤
Awe thank you Nick!! Keep smiling and stay hopeful!!
When I’m in a dark place I watch a super sad/tragic movie cry through it then reset. I call it my emotional purge
Love it!! Can put things into perspective quick... Thank you!! 🥰
Being depressed, I only watch positive videos. So keep on keep it on.
Thank you Lori! Positive perspectives help me too ♥
Keep inspiring us to get in the zone and live a better life. You are incredible Jen! ❤ Thank you for the time and effort you put into this channel
Thank you so much Missy!! You’re incredible too 😘😘😘
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Love the heart with flourishes!!
I like the sound of the river too. Part of my brain understands the flow of life - always moving forward. As much as I'd like it not to be the case, people and evens come and go. The same part of my brain realizes that there's bends and eddies in the river and you never what's coming you way.
I think one of the coping skills that I've stumbled on to is listing to podcasts that deal with the universe, astronomy, planetary discovery, etc. Good science stuff. It fills me with awe and I remember how unique and wonderful we are.
I know it sounds corny but there ya go. Keep up the fine work Jennifer.
I love what you have written, it's like a poem 🥰
Thank you for another great video. I find stoicism a great help as well but I can see how it won't help everyone. I always try to be positive about things especially in forums and dealing with people. I may want to rant and shout about how the disease is progressive, that our medication doesn't treat the underlying problem and that a "cure" is always just around the corner but that will/may only make me feel better for a bit and upset/depress/drive away other people.
Current project investigate dopamine generating cell death is it faster in Parkinson's? Is there any cell replacement occurring? If so at what rate and is that what affects the rate of progression?
Thank you! I think my being stoic is almost like a placebo if that makes sense....I am a big softie at heart. I am way interested in dopamine neuron death and it's rate. Is it a constant rate, or changing all the time? Is it slow in the early years then accelerate in the later years? There's some interesting research with stem cells but I am cautious about getting too excited as well.
@@ParkinsonsWigglesProject Visited the Neuro today and asked the question. The Dopamine generating neurons are dying early and at a rate of 10 times (I assume an averaging is at work ie individual rates will vary) that of a Non-Parkie. Here's the kicker they are not being replaced at all. So something is activating the "kill switch" in the neuron early. Thoughts, does this inversely link to cancer cells not having a kill switch, is the cell early death why it isn't replaced at all
Now that I've had time to have a think. The rate thought is interesting, along with it goes is progression linked directly to the number of cells lost/left or is it stepped to certain amounts of cells lost/left?
What is DBS??
Deep Brain Stimulation 🥰 To be clear I have no plans to go there but was curious about the changes in technology....evolving from an open loop to closed loop signaling and there have been improvements in people being able to program themselves. davisphinneyfoundation.org/deep-brain-stimulation-dbs-resources/
12:11 DBS was a lifesaver for me
I'm still waiting for my DBS to work. I had it done in Nov. 2023. I had 3 adjustments so far.
Wonderful to hear!! Anything that gives someone their life back I am all for ♥