Good video thank you but as a retried nurse/nurse prescribers and now learning all about Parkinson's it's not logical to me. they put a huge list of symptoms under a 'Parkinson's disease' then treat all those symptoms with the same medication! My PWP has mainly non- motor symptoms even now 6 years on. many others I see Motor dominant symptoms so why treat all with LD! They say no Parkinson's patient is the same- hence they should not be the same. We have had a horrendous journey with LD- did. nothing but now dealing with the consequence of side effects.

@ParkinsonsWigglesProject

Жыл бұрын

Hi Janet....Thank you so much for your comment! I would love more than anything for there to be more treatment options for us people with Parkinson's!! And yes because so many of us have different sets of symptoms it would be AMAZING to have options....for example my main issue I would say is gait and my intention tremor is beautifully managed with C/L, and when the meds stop working my walking is the first thing that is impacted, the tremor doesn't really reappear. I am sorry to hear that C/L hasn't helped your person with Parkinson's and that the side effects have been more detrimental than helpful! If I may ask what were the motor symptoms that your person first developed to indicated PD and what side effects have they been dealing with? This is where our doctors come in, to help us find the best medicines, and diet, exercise, lifestyle, to give us the best possible symptom management. Sadly there are limits to what even all of these can do, it's is a brutal disease that sooner or later progresses. I wish I had the definitive answer but it seems to mean that they treat with C/L because overall it is the medicine that offers the most symptomatic relief to most people with Parkinson's. And nothing else has been developed that offers more relief. Thanks again for your comment! ♥

@ParkinsonsWigglesProject

Жыл бұрын

I've actually wanted to do a video about this research for a while now....I find it fascinating but in terms of what you are asking I find relevant. kzread.info/dash/bejne/g6uam5uQebOacdY.html

You are so right! My road to diagnosis was full of dead ends and doctors scratching their heads. In a way, it was a relief to hear what I had suspected for quite some time. Thx, Jenn for all you do and share with the Parkinson’s community!

@ParkinsonsWigglesProject

Жыл бұрын

Indeed a relief! By the time I met with the MDS at Stanford I knew it and the meds were working…she agreed with the first neurologist. Thank you Jeremy for all that you do for the Parkinson’s community!! 🥰

I had similar symptoms to you, small handwriting and intentional tremor. I am 4 years in now with my battle with pd. Thank you for your channel and sharing your story. God bless

@ParkinsonsWigglesProject

Жыл бұрын

Thank you for sharing your story and for your comment!! 🥰

The joys of doctor hopping. The Sinimet worked right away for me too. Congrats on the upcoming interview! I’m looking forward to it.

@ParkinsonsWigglesProject

Жыл бұрын

Thank you Michele! I am looking forward to living vicariously through you on your travels 🥰

Hi Jennifer 🙋😃🌻 Congratulations on your upcoming interview on the Davis Phinney Channel I will put you on my calendar 🗓️📆 your so right about the way we all carry Parkinson's differently. It takes patience and time to get to the diagnosis

@ParkinsonsWigglesProject

Жыл бұрын

Thank you so much Tory!! 🥰🌺🦋

I love your videos, they are literal life savers. So comforting and more importantly informative. Please never stop doing the good work

@ParkinsonsWigglesProject

Жыл бұрын

Thank you!! Thank you!! Thank you for the comments 🥰 They are the reason why I make videos 💕

@lalittl

Жыл бұрын

@@ParkinsonsWigglesProject quick question, when you were first getting symptoms did they ever subside or come and go in waves? I’m still getting diagnosed and it’s definitely something neurological but some of my symptoms disappear for months. Did you you have that experience?

@ParkinsonsWigglesProject

Жыл бұрын

@@lalittl there was good days and bad days for sure but I can't say that they would disappear for months. Perhaps when my symptoms weren't so obvious that might have been the case. Occasionally acupuncture would improve my tremor but once the symptoms became clear they were pretty much always with me.

Great information. Thank you very much!

@ParkinsonsWigglesProject

Жыл бұрын

Thank you Michael!!

Good information. Thank you.

@ParkinsonsWigglesProject

Жыл бұрын

Thank you Sharon! 🥰

Another great vid! Thank you for your time and effort in putting this stuff together. Aaahhhh hand writing…. One of my continuing frustrations with my 11 year journey with PD. Despite being able draw, my writing is a dog’s breakfast!

@ParkinsonsWigglesProject

Жыл бұрын

Thank you Shaky!! 🌺🥰 I get time still when my handwriting is close to normal. You've got all kinds of artistic talents and now I can add drawing to the long list! :)

Love your videos. I hope to catch your video with the DP folks.

@ParkinsonsWigglesProject

Жыл бұрын

Thank you! so much!! 🥰

Wonderful place you film/live in . My handwriting is also changeable and very small and untidy at times. I first noticed my fingers being erratic on the keyboard. Thanks for another helpful film. David

@ParkinsonsWigglesProject

Жыл бұрын

Thank you David!! I try to mix up filming either outside or inside and since we've had so much rain, which was so badly needed, and finally the sun is starting to shine I have been filming more outdoors. When I am on I can still write and type thank goodness!! But it's another story when I am off :)

merci for your help

@ParkinsonsWigglesProject

Жыл бұрын

Thank you Mike!!

Indeed the Davis Phinney site is a valuable resource. I find that for me , your page has more that relates to what I’m experiencing. My handwriting is like a 45 degree angle in that the first letter is pretty well formed and then it’s down hill all the way to the pin point at the end. And that’s just writing my name. I look very much forward to what you post and how it applies to my experience. Thank you so much for documenting you journey. ❤❤

@ParkinsonsWigglesProject

Жыл бұрын

Thank you so much for your comment Jeff and for sharing what you are going through as well!! Is writing like that for you always? Or do you have moments like I do where it's normal again?

@jeffvickers9390

Жыл бұрын

@@ParkinsonsWigglesProject No, no more “normal” anything for me. If I concentrate on it I can get thru a few more letters but then it’s back to chicken scratching. After just two years since diagnosis my gait is pretty much limited to baby steps and if I try to even walk fast I risk face planting. But thru it all I just laugh and say Parkinson’s isn’t going to own me.

@ParkinsonsWigglesProject

Жыл бұрын

@@jeffvickers9390 Sorry to hear that only two years in you're having gait issues like that! I have them too but I can still command my leg to my move by saying, "Step! Step! Step!" It takes a second or two or three sometimes but it works. Through it all I too find a way to laugh and smile, and make the most of all the "normal" I have left 🥰Thanks again for your comments!

In a way I'm lucky I self diagnosed before seeing the Neurologist, but still it took a long time to accept what it was and many glasses of bravery to begin searching for answers. Lack of arm swing, loss of a sense of smell and a change in gait (my shoes wore differently) were pretty definitive symptoms.

@alittlebitshaky

Жыл бұрын

Yes, yes… that was exactly my experience. I had researched my symptoms and then convinced my GP, so my neurologist’s job was easy.

@ricksuvanto5009

Жыл бұрын

Same self-diagnosis just add seborrheic dermatitis and couldn't do air quotes

@ParkinsonsWigglesProject

Жыл бұрын

Thank you Don! I too had a reduced arm swing but forgot to mention it, ugh!! I know some others like you who knew/self-diagnosed. A couple of them had parents with PD that they cared for, so it was clear to them. I love the wording glasses of bravery! Me too and some cans of bravery as well 🥰

@donindusted

Жыл бұрын

@@ParkinsonsWigglesProject When you have the answer the clues shine brightly. No family history of PD. Nothing wrong with a coping mechanism, says he at 2.30AM

@ParkinsonsWigglesProject

Жыл бұрын

@@donindusted Once you have the answer, in hindsight, is so true!

Thanks Jennifer. It's so confusing when you have to go back and forth between doctors.

@ParkinsonsWigglesProject

Жыл бұрын

It sure is! And expensive, stressful, and time consuming.

good video

@ParkinsonsWigglesProject

11 ай бұрын

Thank you! 🥰

I like Ban Gar and A Little Bit Shaky self diagnosed. For me. I found this easier because there really was no denial. I'm the one who told myself I had it. This helped me right out of the starting gate

@ParkinsonsWigglesProject

Жыл бұрын

Yeah the denial part is tough...I just didn't want it to be true and clung to the less likely statistics of, being under 50, a female, a smoker, and coffee drinker. It's brave of you to face it right from the start. It's a reality that is hard to process, especially in the beginning. Thank you Rick!! 🥰

Interesting - my neurosurgeon (back issues) referred me to an ALS specialist who diagnosed my PD. This was my second neurologist but the first diagnosed me with pinched nerves. A second visit to my neurosurgeon was interesting in that he said his referrals sometimes result in such diagnoses.

@ParkinsonsWigglesProject

9 ай бұрын

For some the path to diagnosis is long complicated and for others quick and easy. Thank you for your comment!! 🥰

I have essential tremors, so I thought for a long time those tremors were just getting worse, but there were a couple of new kinds of tremors, and that wasn't all. ET wasn't a disabling problem for me, but these changes aren't the same. I can tell the difference now. I sort of knew by the time my neuro confirmed it. It was still another thing to actually hear it from her.

@ParkinsonsWigglesProject

Жыл бұрын

I hope you get it worked out. My tremor has been managed by my meds, but when they fade it comes back out and depending on how much sleep I have had, et some days are worse than others.

@lehon481

Жыл бұрын

Can I ask you to describe the changes you saw in your tremors? I'm researing this!

@ParkinsonsWigglesProject

Жыл бұрын

@@lehon481 If I understand your question correctly.... My tremor began as a barely noticeable twitch in my left ring finger. It was only when I stretched my fingers apart doing a morning stretch. It evolved into an intention tremor in 2012, not a resting tremor. So my tremor was only when my hand was reaching for something or on it's way to being used. I hope that answers your question and thank you 🥰

@lehon481

Жыл бұрын

@ParkinsonsWigglesProject Yes, thank you for your very precise answer! Did you notice it if you were trying to hold onto something out in front of you once it became an intention tremor?

@ParkinsonsWigglesProject

Жыл бұрын

@@lehon481 I remember once having a grasp or hold of something the tremor was completely gone. It also wasn't always present, it would come and go. Which maybe had something to do if I stayed up too late, drank too much, worked too hard ect🥰

Parkinsons is deficiency in dopamine/serotonin production, all functions that rely on them are affected. Ussualy, the brain cell that produce dopamine/serotonin die off for some reason, the key is to prevent further die off and regenerate new cells. Doctors attribute the die off to stress, but it's unclear what the stressor is, often some kind of chemical exposure like pesticide, mercury, or methamphetamine use. Lifestyle stress would be extreme situations like trench warfare, drug addiction, or people who are not sleeping enough and overworked drinking diet colas

@ParkinsonsWigglesProject

3 ай бұрын

I did a video about heartbreak...there's not just environmental stressors but emotional ones too....and with stress you get inflammation and if it becomes chronic it's especially bad for the brain! Thank you for your comment!

Canada

I have the resting tremors along with some other PD symptoms, no dystonia or Bradykinesia yet. My neurologist scheduled me for a DaTscan, I'm learning there's Parkinson's and also Parkinsonism. From what I read Parkinson's will usually show low dopamine levels on the DaTscan and Parkinsonism will show normal dopamine levels. I'm also considering joining the Michael J Foxx PPMI study at UCSF.

@ParkinsonsWigglesProject

Жыл бұрын

That is my understanding of the difference you will see between PD and Parkinsonism with the DaTscan. Also people with Parkinsonism won't respond to C/L, as well again from what I have read?! But what is clear is how complicated diagnosing PD can be for some of us. You're in the Bay Area?

@bozerbrett7867

Жыл бұрын

@@ParkinsonsWigglesProject I’m in the Central Valley, about an hour away from UCSF. I’m hoping to gain knowledge about PD by joining the PPMI study and I’ll be helping with research at the same time. It’s a win win.

@ParkinsonsWigglesProject

Жыл бұрын

@@bozerbrett7867 That's great! Win Win indeed and so much to learn too!

😊

Thank you for your report. Could you please tell me if there was muscle twitching before your temor showed up? Such as lying in bed and feeling some muscle starting to twitch? And if, which part of your body had twitching? Thank you!

@ParkinsonsWigglesProject

Жыл бұрын

Hello Klaus! Maybe it was like a twitching but my ring finger would shake or twitch when I would stretch my fingers apart or stretch in the morning with my hands reaching above my head. Thank you for your question! 🥰

I have several significant symptoms of Parkinson's but my neurologists do the emg and although they see something they decline to consider my several other symptoms that they have witnessed saying I don't have Parkinson's or als but and claim they THINK a muscle biopsy is too INVASIVE but upon my reqest to do it anyway the decline to, none have ever done one for me. I've never been able to see a neurologist that specializes in movement disorders. Despite witnessing my other symptoms, they also make no notes of them in my record. The last neurologist I saw initially said yes he could try the leva dopamine test for me but on my return visit reneged saying it couldn't be done because it could kill me and focused the entire visit on how much money all of it would cost despite I reminded him I had already asked my Medicaid about the expense coverage and they'd told me they cover everything, every bit. Every visit after those first two he heavily Gas Lighted me almost yelling at me and only questioning me hostily about my mental health which the depression and anxiety that had come on suddenly I was defensive about due to his histility that he carried on even in front of his co-doctor. On a video visit I set up a camera and recorded his hosile gaslighting, questioned him about why he wasn't willing to consider my several symptoms or note them in my recods to which he responded with his gas lighting that I aimed to capture in the recording and when I addressed his unprofessional and unwarranted hostility he visibly struggled to restrain himself and I concluded it that I was uncomfortable seeing him any further to to his behavior. After that visit he began harassing me, made appointments for me on days and times that I had at the first visit made clear I was not able to make appointments on . I'd get notified 1 hour before the appointment time and written as a No Show for not giving 48 hour notice which he knew very well could affect my Medicaid. He has his nurse and secretary calling me multiple times a day throughout the weeks untill I told him that I was reporting him to the hospital and I immediately began receiving a barrage of spam calls and texts, some with links I never clicked, I think he was trying to spyware my phone to see whether I contacted the hospital about him. Anyway, for the sake of storage space on my phone, I uploaded my video of him on KZread as a unlisted video so nothing could cause me to lose it and this was I could share it with the hospital easily in email and have further documentation of my reporting him. My right hand now has subtle resting tremor added to my several other symptoms but still no official diagnosis. My adult daughter now in her mid 30s has Parkinson's. She had REM sleep disorder and anxiety that we noticed at 11 years old but we never knew it was a Parkinson's symptom or that she would ever get Parkinson's. My son is almost 40 and he has so sense of smell since he was about 12 years old but so far no further symptoms. My other 2 children have no Parkinson's symptoms so far.

@ParkinsonsWigglesProject

3 ай бұрын

So sorry....Sounds like a nightmare!

I’ve been diagnosed about a month ago and my initial symptoms sound rather similar. First thing I noticed about 2 years ago was inability to use my left hand properly - especially typing. This spread to the rest of the arm with increased numbness in my hand and eventually the inability to wiggle my fingers. This made walking feel awkward as the left arm didn’t swing normally. Then that feeling of my left leg dragging started. I race motocross (in the slow old guy class) and started noticing that I was getting beat badly by guys that were close competitors for me. That started in 2019, 2 years before I noticed any symptoms at all and just got worse. I’m hoping I can still casually ride, even if I don’t race. Just took my first dose of levodopa yesterday. I think it’s helping but I’m guessing it’ll take some physiotherapy to get my hand and arm working better after several years of barely using it (my wrist has gotten really stiff and crackles and pops a bit when I stretch it). I also have no resting tremor but my left arm and hand sometimes shake when I’m tense or doing certain things. Thanks for the video - it really helps to hear other people’s stories!

@ParkinsonsWigglesProject

9 ай бұрын

Hi Mark, thank you for sharing your story, it really does help to hear other people stories! I've seen a physical therapist for walking issues and she was super helpful, so I am sure your arm and wrist would benefit. When I was diagnosed I needed to find another restaurant owner with Parkinson's because I owned a restaurant at the time, and I found one. We talked and even though I knew I could do it, there was uncertainty so it was great to talk with another restaurant owner. You should find someone who still rides a motorcycle and has PD. My guess is that they are out there and hopefully being safe. I don't ride but I drive a car and just went through a DMV assessment to make sure I can drive safely with PD, which I can :) I am ten years in and still good so I think you hoping to ride casually is reasonable. So long as you ride safe 🥰

@markc5015

9 ай бұрын

@@ParkinsonsWigglesProject I’ll see if I can find some kindred spirits who love riding and have PD. I have a colleague at work who has MS. Not the same condition but we have some similar struggles. I’m in accounting - I’m just lucky my right hand is okay because if I couldn’t use a number pad I don’t see how I could do my job. It’s tough enough typing with one hand.

@ParkinsonsWigglesProject

9 ай бұрын

I am right handed and it's my left side that is impacted. I am with you on the thank goodness I can still use a computer and type. I am not a professional accountant but since I did my own bookkeeping at my restaurant I have some skills and have one client I do books for...I know all about the number pad 🥰@@markc5015

I'm curious; I know you're not a doctor but if you have any insight that'd be nice! I got diagnosed with YOPD in April of this year and had been displaying symptoms as of 2021. I mainly suffer from tremors and mild distonia in my shoulder and ankle/wrist. I'm on 25/100 C/L right now and am seeing minimal improvement. How long did it take you to dial in the right "dose?"

@ParkinsonsWigglesProject

28 күн бұрын

I started with C/L only and responded to it right away. It was miraculous and made me feel like myself again. Over the next few years I added 1 Rasagiline in the morning, then Inbrijia (a rescue levodopa inhaler), and then 2 Amantadine. It was a slow process but I feel around years 4 and 5 I felt like I was dialed in and this is where I have been since. I have been active and working the whole time. I know a few people who didn't respond to C/L in the beginning but years later tried again. One of them went to a nutritionist and it turned out something in their diet inhibited C/L's benefits....but I can't remember what it was. I should ask him and do a video or interview with him.

Beautiful woman❤

@ParkinsonsWigglesProject

9 ай бұрын

Awe 🥰 Thank you!

I'm from Montreal canada

@ricksuvanto5009

Жыл бұрын

Bonjour fellow Canadian from Toronto!

@ParkinsonsWigglesProject

Жыл бұрын

My grandmother was French Canadian :) Her family moved to Massachusetts though when she was young.

@MikeMercury

Жыл бұрын

a lot of french canadians moved to ma me nh because jobs were scarce in the 40´s

@MikeMercury

Жыл бұрын

youre sooooo young to be stucked with parkinson I'm 74 ........ I still go to the gyn three times a week actually my hands and my balance are my problems wish you the best and take care

@MikeMercury

Жыл бұрын

@@ParkinsonsWigglesProject what was her family name

I have shaky hands, head, feet and torso. Doctors did the bibinski test and my toes flared put instead of curling inward. They could not tell me what is going on.

@ParkinsonsWigglesProject

Жыл бұрын

Hi Matthew! I’m not familiar with that test but sadly and frustratingly some answers about what’s going isn’t always easy. Being patient and persistent is the way to go. I hope an answer comes to you soon!! 🥰

I dont have precision in my hands anymore.....eating soup is kind of a mess

@ParkinsonsWigglesProject

Жыл бұрын

I am lucky to have the time that I have when I consider myself still normal. Even drinking a glass of water sometimes is splashy.

Parkinson disease is a very terrible illness, my Dad suffered from it for 19 years until we finally got a help and a medicine that truly works that helped treat, cure and reversed all his symptoms••My Dad is completely okay and healthy now💪🏼…

@RobdeKlerk-qg6lc

7 ай бұрын

Serious

Good Lord. Calm down. You have Parkinson's and so do I. Just stay calm. Sinemet works well for me.

have you tried medical marijuana

@ParkinsonsWigglesProject

Жыл бұрын

Most definitely and it makes me more dyskinetic typically, so I mostly don't. I've tried CBD's as well. Have you tried with better results?

@MikeMercury

Жыл бұрын

@@ParkinsonsWigglesProject I use canabis oil because I dont smoke

Do you smoke ?

@ParkinsonsWigglesProject

11 ай бұрын

Yes.

@The_Singing_Cricketer

11 ай бұрын

@@ParkinsonsWigglesProject Has it helped you in managing this disease ?