Totally get it 🙏

For me, I describe it as an inability to multi-task, combined with overwhelm, with a bit of lack of motivation and sadness mixed in. Those are the days I cannot make even the simplest decisions. I have to be on my guard against negative self-talk. Tackling one single, physical task that makes me move and doesn’t require much thought, like folding laundry, helps. Going for a walk outside helps me the most, even if my legs are heavy and slow, I do what I can and give myself grace. Allowing myself time for a good cry also helps sometimes. When people tell me that I don’t look like I have Parkinson’s, I have learned to reply by asking them to tell me what they think Parkinson’s is supposed to look like.

Diagnosed 13 days ago and I’m having a really hard cognitive day today……well, this entire week! Saturday I’m flying out to visit my daughter and her family for three weeks and feel paralyzed mentally to pack or even make a list!! Thank you for this video!! The accompanying fatigue is real. No naps help. Not on medication at this time as my symptoms are mostly cognitive and I move slowly these days. I identified with you tonight, immediately.❤❤

Thank you for this. It is very timely for me. I have had way too much on my plate as of late and while physically holding up (for the most part), cognitively I’ve been struggling. I work full time providing telephonic coaching/support and I am in the middle of helping my dad sell his home/buy a new one. I have had to take the lead on the house stuff. When talking to our agent, I’ve found myself struggling at times to understand what she’s saying, even though it’s probably pretty straightforward. Also, I have been struggling with my work calls-just not following along very well and not remembering if I’ve already provided the information that I need to provide. It’s all very concerning and upsetting. But there are good days and bad. And there are good moments and bad. The last couple of days have been better. One thing I know for sure, is that I need to set limits and boundaries. Which is something we all need to do, but especially so when you have Parkinson’s.

Thank you. Live is good when authentic feelings are paramount to convey. You got through to me about one of the most difficult to explain experiences that PD impacts on us. You communicate with your heart. Moving and insightful. Please include live and unscripted in your future podcasts. Takes courage and confidence but gets easier in time. And it is more personal and true to emotions. You are wonderful

Can relate %100. I was diagnosed in December 2022. With the value of hindsight I probably had PD for a few years prior. Off days are apparent and frustrating especially since I am a retired attorney who was managing partner of my firm. I am used to being mentally sharp EVERYDAY. Thanks for this video.

Listening to your podcasts over the last few years has been so helpful in understanding what Parkinson’s is for me and even validating how I feel both physically and cognitively. Trust me, I know exactly what the cognitive fog is and how hard it is to explain it to people. We have similar symptoms and hearing you speak to them has been a tremendous help for me. Thanks for all you do for our cause and I am hopeful your walk this weekend is a huge success. I hope you are able to rely on your crew to do more of the heavy lifting so you can relax and enjoy it yourself. My best to you!

You just described exactly my last 2 days. Will show this to my wife.Been so hard for me to make her understand these days. Im 55 diagnosed, 4 years ago. Thank you

Jessica, thank you for sharing this very real, and thus "live" day. I'm 2 1/2 years into PD at 75 yrs old, and I'm so grateful for your confirming voice of what the interior experience of PD is. God bless us one and all--through this.

100% i have a hard time managing throughout my life on all this. I have become a very angry person. Specially if i drop something, or when i feel real weak or the pain, or the cant think on finishing sentences while talking to someone. Or folding clothes & trying to hang them up without falling. Im thinking of using electric toothbrush like you mentioned. Showers are scary & painful. Im bent forward, so when walking or standing its exhausting too. Had it since 45 or earlier, now 50. Take care everyone...i cant tell if its because my hearing is going or if i just dont understand conversations over phones anymore but im so happy for txt. I can still do that thank God.

The concept of off days has been part of my last ten years. The off feeling now includes much more pain and a desire to be in the dark of my man cave. I was up at our Lake Home and the compressor in the AC failed. Everything then started to feel like pushing a cart through mud. I use a large walker to transport clothes to a laundry area. Every trip was excruciating. I sense my wife becoming angry when I am off, as I cannot help with groceries or clean. I feel pain almost all the time, exercise can be very hard. I have had to take a pain killer, sometimes, knowing the effects on constipation.

For me the brain fog is the worst. It is non-stop and I understand how you feel. Some days the fog is worse than others. I pray to God and have been for the past 3 years since my diagnosis. Brain fog was my first symptom. It is relentless so yes, I know how you feel.

Thanks for sharing, I know how you feel. I've had parkinsons for. 5 years, I'm now 63. There are those days that just don't feel that I'm thinking clearly, so I try to get out and do something physical. What happens is my brain fights me every step of the way, telling me not to do it, then every fiber in my body tells me not to do it. If I fight every sense in my body and brain and go and do something physical I normally feel better, if not I hope I will feel better tomorrow. It's quiet a battle.

I'm right there with you Jessica. I have Mild Cognitive Imparement. Before I retired I was a project manager who could handle multiple conversations across a range of topics. Today with MCI I'm lucky to manage through a single topic. The slightest distraction can yank my mind away to a whole different thought process from which I may not be able to return. Because it is so easy for me to be diverted we decided that my wife would drive when we are together. This is so I would not lose my train of thought while driving, especially by having someone in the car ask me a question or open a new topic of discussion. I'm fine driving while I'm alone in the car as there is notbody to distract me. My MCI tends to go in cycles. I may be clear headed for three weeks, then I may have a full week when it is difficult to maintain a single throught process. I have no motor symptoms, but do have to deal with a set of PD symptoms including REM Sleep Disorder, Constipation, MCI, swallowing issues, slight balance issues, apathy, anxiety, and more. Symptoms started in 2013 (lack of taste and smell) but this disease seems to be progressing slowly in my case. Thanks for your podcast.

Awesome video you described how I feel exactly on my bad days thank you so much !

Thanks for explaining how you feel. I think it's like you're on the ouside looking in. A terrible feeling and when it goes away, it's like a weight has been lifted. The worst part is there's no way to make yourself (snap) iut if it Thanks Jessica for all you do. ❤❤❤❤

A high dairy intake day, ending in a big yummy burger, caused perhaps the deepest pit-day in my hubby's 11+ year parkinson journey. Previous pit-days had me moving in front of him, eyeball to eyeball saying,"Stay with me," in a soft, compelling voice. His thoughts would groove into deep, despairing negative thinking. My intent was singular; to divert his thinking, and to enjoy loving presence together with me. It took patience, but I would gradually watch strength return to him, both physically, mentally, psychologically and spiritually as life breathed back into him. This dairy/burger whack-a-doodle TAKE-HIM-OUT day, was deeper yet and I can't even remember what I said or did, but it succeeded in getting him mildly nose-out-of-joint with me, supplying for me the description I was searching for about myself... "Control freak," he offered quietly. "YES," I responded with delight! You know how weakness makes you lose hope? Well, anger is a sign of LIFE! We had nurtured trust between us, and ticking him off just a lovin' wee huggie bit, popped his thinking into a different side of his brain - a side that with a little love and patient presence, made room for him to hope and strengthen again. p.s. Word Search gave me such focussed pleasure during a severely brain-stuck moment in my own life. That's how I learned about POPPING INTO A DIFFERENT PLACE IN MY BRAIN...quickly. This posting really moved me. Thank you for it.

Thanks for posting this. I think it's something that people just can't grasp who don't have Parkinson's. Yes, they experience these feelings but I don't know if they feel them as deeply as we do. For me. I've just gone through a really bad week. It usually doesn't last this long. It's not that I don't want to do anything. I just can't get up. I can't get started and yes all I want to do is take a nap and hope it goes away. As I comment on this. I've been sitting here at home this morning and trying to get up and go out and get a coffee and go to the hardware store. Two things I love doing but I just can't. But as we all know tomorrow is a new day. Just hearing somebody else goes through this makes it feel normal ❤

Hi Jessica. Thanks for making this visible. I think it’s great that you can talk about the tough moments.

I absolutely love every single episode and I appreciate your honesty. I’m 63 and was diagnosed 2 months ago. I can relate to what your saying today. We have a full and blessed life and part of it was inheritance of seven farms. Although we rent out the land we still manage the farms. I used to feel like a whiz with all that was happening from crops to financials. My husband works for the pharmaceutical industry he is a microbiologist and manages the farms in the side. I have recently told him if he passed that my abilities to run such a complex business are very hit and miss. I can only handle one thing at a time confidently. I do not juggle things anymore. I have simplified a lot and enjoy life that way. My mind can go deep but no longer wide. ❤❤❤

No Jes you are not alone. Hard to explain. But you get it...when one of my friends ask how I am doing sometimes I just say l feel like I have PD and we LOL..hugs to you Xo nanci from bullhead CITY, AZ

Thanks for your transparency. You and Brian normally come across as managing your PD well, but you're "only" human. Hang in, and keep up the good fight.

Well done

You described my life on a daily basis since Parkinson's came to me in 2021. I have that brain fog every day. It does not go away. I cry everyday. Today has been especially hard. I'm going to my boxing class within an hour in California and hopefully that'll take me out of my mindset and into a better place. I'm laying on my bed for listening to you talk. I feel your pain. Don't you just hate him when people say you look fine. If only they can see inside my head . Thank you for your honesty. I hope that your day gets better.

Hey There, The "Bad Days" are really tough when they come. For me, (I was diagnosed 11/2023 at 53 yrs. old.) when they start ,it's like instant depression. then brain fog sneaks in. I'll start to review to find where the under lying stress is. Exercise for sure helps. also mind games like Sudoku or even a word find. then a good nap when possible. Just a way to decompress. Luckily, I haven't had a bad day last longer than two days yet. But, Today was one of those days. So I mustered up the energy to jump on the mower for a bit & it helped a little. I just signed on today. I met you guys at the Columbus, OH seminar. this weekend past. You guys were great. very encouraging. Any Hope is good Hope. ( I want to put that on a t-shirt..lol) Thanks for all you are doing. It's already helping me to come out of the Parkinson's closet. It was amazing to be in a room with over 600 people just like me!!! Sincerely, Eddie

It’s such a wacky disease, isn’t it? It’s so difficult to describe what you’re going through on a cognitive off day. I hope you have a better day tomorrow.

Thx for your honesty. I have been enjoying the podcast!

Well done Jessica, for one, being brave to go live, second to be so honest with your feelings. I can fully understand. I have been diagnosed around 18 months and NO two weeks have been the same. The frustration of not being able to string a couple of sentences together is so emotionally painfully and add in my case a voice that is getting progressively quieter so people are constantly asking, ‘ what did you say?’ I think the overriding frustration is that everyday is a new journey. Here in the UK with the medical profession under so much strain it’s hard to report new feelings, basically to check if what I am going through is actually PD. Keep smiling… Brian and yourself are a positive voice in the PD community, thank you. All the best this weekend. Stuart.

Hi Jess. This is a wonderful departure from your regular podcasts. I think most of us can definitely relate to what you shared, and thank you for sharing what most of us feel. I hope tomorrow is a better day for you. I admire you so much for all the work you do in terms of your podcasts and your nonprofit, and continuing to work. You always look so put together and strong, and I really appreciate your sharing your vulnerabilities with us. I so look forward to your podcasts, as they are a great source of information and validation for me.

I was diagnosed 1 1/2 years ago, and even though I have had a left hand tremor for 3 or 4 years which my PCP diagnosed as an Essential Tremor, for 3/4 of a year before being diagnosed correctly I dealt with what you are talking about where I wasn't just 'foggy' with lack of motivation, I would have episodes where I thought I was losing my mind! Now, with 1 1/2 years on Sinemet, those symptoms are way less and don't happen much anymore. FYI - I have seen information regarding that B1 can be very heplful and also I investigated, bought and use a Symbyx Biome Laser hand held device that seems to be very helpful too. Thanks for this video, and yes, most people just think it's tremors and trying to explain the rest is hard. Take care & God Bless.

Thank you for sharing. I know about the cognitive issues. Some days are worse than others. I can't imagine how tough it is when you are still working and raising your family. I was diagnosed after I retired thankfully, but I was already seeing signs of it. I knew something was wrong. Best wishes on your event this weekend.

Jessica, yes! I've felt like this, too. Example; visiting family I'd feel sidelined, not present in conversations. Simply not able to react and carry-on spontaneous conversations. Akin to being in a fishbowl? No, this was not a RX side effect. I'm 64 & 8 years into my PD "safari" (a "journey" is TOO tame) 2 years ago I turned to DBS surgery... voila! Worth the risks, for ME. Thank you for your honest POV!

Thank you for all you do for us

Thanks, these informal talks are great!

For me, those are the days that I cry, and I'm not a cryer. Then I get angry for crying. Those days for me is like I have a heavy wet blanket across my shoulders and back and every muscle feels like I've worked them for hours. Breathing becomes difficult, I get dizzy, and just NOT comfortable in my own skin. Just standing up without being light headed feels like an unsurmountable task and I think " how did I get to this?". I was diagnosed in Oct 2023.

It's tough to have those days, I get them too. Sometimes you push through them, sometimes you don't, but you keep going regardless. Thanks for being open and honest with us, it helps probably for a lot of us to realize were all going through some form of it too...

Thank you for your authenticity in our unseen struggles..

I can find reasons for some of my bad days but most often I can't. Today is one of those unexplained off days. I finally mustered the energy to balance my checkbook which can be a challenge on good days. I think you've got it right, You have to accept that it's one of those days. Like you mentioned, if you can, take a walk or at least step out of the house. Caution, balancing your checkbook may not improve your thinking or your mood. 😅 You and Brian are awesome. Thanks for all the great content you both provide!

Thank you for talking about this. There are days when its impossible for me to organize my thoughts or even answer a question my husband is asking because I am unloading the dishwasher.

We are all here for each other. I am currently visiting with my daughter and her family. It is difficult to explain to them how out of sorts I’m feeling. One time zone and nine hundred miles from home. It took me two days when I used to take only one. Thanks for sharing and letting us all know that we are not unique.

You describe my symptoms, so well, I appreciate you going on live and explaining this and you did such a good articulate job descriptive, I’ve tried to describe what was going on to my family, and it didn’t do a good job of explaining, I’ll send your KZfaq to them. Thanks.

Thank you for sharing this real moment. Those of us with PD can relate to the experience that you are describing. I do find that other people are baffled that at times I seem like I don’t have PD and other times I am disorganized, and struggling to get things done. Best of luck on your journey.

Thank you so much for sharing this I have been recently diagnosed with YOPD it is a very confusing disease, and sometimes you just don’t have the words of how you feel. Yes, I totally agree. I hope you feel better and thanks again for sharing.

Thank you sharing!

Thank you, trying to get comfortable with this too. Diagnosed 1yr ago

Thank you thank you thank you. You’re so brave. I totally totally totally can relate to everything you said. I’m sending it out to all my family because you said it better than I can ever say totally can relate. You did a great job once again thank you so much for putting this up. It’s made a huge difference in my life.

I hear you,Jessica,I am a care giver to my husband who has p.D.take care …brighter day tommorrow…

Thank you for your talk today. Appreciate that it sometimes is so hard to do simple things…not only do I have problems with multi-tasking, but just trying to do one thing can make me frustrated. My husband sometimes knows if I am overwhelmed and he can step in. I am looking forward to taking a good nap this afternoon, and hoping it will help. Take care. So appreciate all you do for all of us.

I had a rough day this week and really threw me off my game - same thing - cognitive issues. Just fuzzy and out-of-sync all day...simple things made me really irritated, etc....Thanks for sharing your story. Its sucks when it happens.

You are awesome

You are brave to speak about this, but it is good information for all people. I will be thinking of you and wishing you the best in what is a very difficult experience. I truly wish you well..

I know it's hard to explain to people who don't understand the disease or haven't experienced it themselves. And it's even harder if you don't have tremors, because that's what people expect you to have if you say you have Parkinson's.The day after New Year's I crashed. The holidays wore me out. Spent the day in sweats and mostly in bed. Didn't brush my teeth till 5 pm. And my biggest pet peeve is when people say, Oh, I have that. Well, I hope you don't have what I have.

Thank you for sharing..,

Good morning from WV!

Yes that happens to me. A couple of days ago, I was talking about food with my wife - normal what to eat type conversation, and I was trying to say that we have lots of parsnips, except the word 'parsnips' would not come, it must have been five minutes before it came into my head.

❤

Thank you for sharing this.

I had one of those days a month ago. I go to breakfast once a week with guys I grew up with (70 some years ago). Driving home things started to fall apart. By the time I got home I couldn't handle anything other than crashing in my recliner. This was the first time this happened and it really bummed me out. Basically sat in the recliner for the next 7-8 hours. napped a few times. Finally got over it but it lrft me washed out.

Jessica, thanks for sharing and being honest. Are you safe to drive during those periods of offense? Keep your head up!

I have that too, it’s so frustrating not being able to find the words, I feel stupid and hate this, I was so witty and could recall so much knowledge not anymore..I don’t engage in a lot of conversations when it’s bad!

I understand. Unfortunately. Hang in there!

Hello Jessica, I'm new to your channel. I'm also new to Parkinson/essential tremor. I have not been diagnosed one or the other, but I have all the symptoms . First off I know exactly how you feel, and I'm sorry. I think everyone that has this problem knows the feeling. I wanted to ask you if you have or plan to talk about the difference between PD an ET. Like I said I haven't officially been diagnosed (waiting on neurologist appointment). I hope you're day gets better soon.

"You don't look like you have Parkinson's." Hear it numerous times. How to answer that... Me - You should see me when I'm off my meds. - Sometimes my tremors are so bad my hand feels like it's going to shake off the end of my arm. Me - Come around between 7 and 8 in the morning. I do 15 to 20 minutes of stretching exercises before I get out of bed. Otherwise I'm doing the Parkinson's shuffle until about 11 AM. Me - So, tell me what Parkinson's looks like so I can recognize it when I see it. OR... Me - You don't look like you are totally clueless... I take my drugs regularly and exercise regularly which is important for Parkinson's. I'm about 3 years in to this and my universal Parkinson's score is 15. I go to class at a Parkinson's clinic 3 days a week for exercise classes.

Very difficult to know what is disease effects and what might be from meds…too much or too little dopamine, too much or too little of other meds like antidepressants or anxiety meds. I am constantly trying to “solve “ the meds affects but it is jumbled up with actual PD . Apathy and loss of executive function is such a reality in this condition.

I have 7 hours

WWBDD - (What Would Beth Dutton Do?) She punch Parkinson's in the mouth! lol love the shirt Know the feeling all to well here too, Jess. Finding words is part of my cognitive. My speech pathologist has taught me a few great things. It all became too real this week, this hits home. He gave me 2 words give him definitions, which I could do but then he said use both in the same sentence, sure no problem I said..I couldn't do it! Was so easy but i couldn't spit it out at the time..I could a little while later but it was very tiring, weird! I see my pathologist a few times a month, keeps teaching me thing to work on. I was apprehensive at the thought of seeing one but glad I did. If anyone has thought a seeing "Speech therapist/pathologist" do it, you wont regret it.

Great things Dr Madida on KZfaq has being doing for mankind, I undergo his Parkinson disease treatment plan for weeks and my Parkinson Disease was completely reversed.....💫💫

The majority of people have no clue what Parkinsons is or what we go through

Sorry to hear about your day. Is it possible you are having side effects from all the medications you take? I pray for you and your family to give you strength to get through these rough days.

What a crock. Try not being able to get out of bed.😮

Hi…Today was a day like that for me so your candidness in this video was spot on. I too went out for a walk and that helped somewhat. I tried to nap but couldn’t so I put my headphones on and listened to quiet environmental music. That helped but not enough. Still struggling a bit. I’m hoping that I’ll get a good night of sleep and feel better in the morning. Thanks for all you do…Peace!!!