Quick Parkinson's Message from Jessica

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  • เผยแพร่เมื่อ 23 ธ.ค. 2024

ความคิดเห็น • 95

  • @StephenKless
    @StephenKless 2 หลายเดือนก่อน +8

    Absolutely agree. Nothing can be taken for granted - sleep, food, activity, stress level all seem to combine unpredictably. And it never fails, the dose 30 minutes before a presentation, but only 1 hour after a meal is not taking affect as I'd hoped and someone is openly staring at my lack of coordination with notes on paper. Or, the 2 cl I took 45 min ago are too much and I seem to be a muppet on speed with tics and grimaces that cause overt stares. Thanks for being open and brave! I empathize completely. And I can't keep dis- dysk- straight in my head for more than 10 seconds. Regards all.

  • @lidaschoeman1528
    @lidaschoeman1528 2 หลายเดือนก่อน +9

    You must relax Jessica.
    take it day by day may be hour by hour! DBS is wonderfull!1 I have it five years ago and I was diagnosed 18 years ago. I am now 67 and still go on Well a little bit slower but who cares. Stay as sweet as you are and don't worry!! be positive as you are. Thanks for your humbleness and honesty. We love you!!

  • @bengrahamart
    @bengrahamart 2 หลายเดือนก่อน +3

    I’m so glad I found you. I really needed to hear somebody else’s symptoms and understand that I wasn’t alone.

    • @Cailus3542
      @Cailus3542 2 หลายเดือนก่อน +2

      Thank heavens that we live in an age where we can have this.

    • @Lalaland-q2z
      @Lalaland-q2z หลายเดือนก่อน

      @@Cailus3542 Say that again..since the covid epidembic many in person PD support groups ended .

  • @sandysullivan8707
    @sandysullivan8707 2 หลายเดือนก่อน +13

    Jessica, you are such a strong woman with a pleasant nature. I am 2 years into my diagnosis and your podcast is the most helpful and encouraging to me. Keep shining and give yourself lots of grace. God does!😊😊

  • @josephdamiano4213
    @josephdamiano4213 2 หลายเดือนก่อน +3

    I can totally empathize with you on this issue!! I was diagnosed in 2017 and I’m currently taking “ Rytary” ( time released ) at the same time intervals as yourself. I also have a longer time released Carbadopa/levadopa that I will take as needed at night. I have some Dystonia in my hand and I have some Dyskinesia when I am “on “ and sometimes when I get excited or upset or stressed. Thank you so much for sharing.

  • @xjet
    @xjet 2 หลายเดือนก่อน +4

    I have no problem with diskinesia -- probably because I've stayed away from the dopamine agonists but the dystonia can be a real problem, especially in my hands. Bradykinesia is also a problem in the mornings but I have management strategies that are working well enough that I'm still largely medication-free right now and my quality of life is realitively unaffected. Now coming on five years since diagnosis and I've spent a huge amount of time experimenting with mitigation strategies with good success.

    • @gwynne127
      @gwynne127 2 หลายเดือนก่อน +2

      what have you done?

    • @xjet
      @xjet 2 หลายเดือนก่อน

      @@gwynne127 A lot of exercise (walking and resistance training) because the endorphins released go on to stimulate dopamine production. I'm also taking creatine monohydrate as a supplement because there are some studies that indicate positive effects on Parkinson's. I'm also now trying beta alanine as a supplement because there are indications that it has a synergistic effect with the creatine and can act as a dopamine modulator.
      Another greatly overlooked substance is coffee. The phenols in coffee are health-promoting and caffeine itself has a useful effect in stimulating and controlling dopamine production. I bought an espresso machine and have 2-3 cups a day at strategic times.
      My diet is now heavily based on protein and healthy fats with very little in the way of carbohydrates and zero refined sugars. That seems to give me much more consistent energy levels throughout the day and helps with mood also.
      I've worked hard on developing other coping strategies for the anxiety, sleep distruptions and other symptoms associated with Parkinson's -- I'll probably write a blog on what I'm doing and how I worked out the best way to manage those issues.
      These things work for me but they may not work for every one because, as we know, everyone's Parkinson's journey is slightly different.

    • @kitkat20221
      @kitkat20221 2 หลายเดือนก่อน

      I am curious about what has helped you?

  • @anthonylawlor2904
    @anthonylawlor2904 2 หลายเดือนก่อน +2

    Jessica, Thank you for your courage in facing Parkinson's and searching for what works for you. You inspire me to do the same. In that, my life is improved.

    • @thesecretlifeofparkinsons
      @thesecretlifeofparkinsons  2 หลายเดือนก่อน

      Wow, thank you for those kind words! What works one day might not the next, so never give up!

  • @mitchellwood693
    @mitchellwood693 หลายเดือนก่อน

    1st time seeing her.. eye opening and can certainly empathize she is so young .. was diagnosed 2 yrs ago and like she said everyday can be challenging and unpredictable

  • @Cailus3542
    @Cailus3542 2 หลายเดือนก่อน +2

    I haven't been officially diagnosed with Parkinson's yet (the neurologists are being very careful, given that I'm 32 and have some anomalies), but my body is weirdly convenient. In my OFF time, it's severe cervical dystonia (the neck), plain and simple. If it's my left arm or leg, it's dyskenesia. Thankfully, after two weeks in hospital, the doctor managed to find the right balance of medication to avoid the worst of either, although only until midnight, more or less. Apomorphine infusion is working wonderfully to almost entirely eliminate my OFF periods as well, plus I can lie to myself and say that the pump looks stylish. It doesn't, but a man can dream.

  • @robertdmeyers
    @robertdmeyers 2 หลายเดือนก่อน +12

    Hi Jess and Brian, I am 68, having been diagnosed with PD at age 60. Earlier this month my wife and I walked about 110 kilometers over six days on the Camino de Santiago. The terrain was difficult and it rained every day,but we made it. One of the lesson I learned was that you can do what might seem impossible if you only try. To my fellow PD’ers,keep trying.

  • @marlenek3412
    @marlenek3412 หลายเดือนก่อน +1

    I'm praying for your healing.

  • @natelinn6204
    @natelinn6204 2 หลายเดือนก่อน +1

    Hi Jessica. Thank you so much for being transparent and being such an encouragement to us. You are awesome!

  • @lanam3348
    @lanam3348 2 หลายเดือนก่อน +2

    Also, you might find this helpful to remember/ recall dystonia vs dyskinesia:
    dysTOEnia (think of toe cramp)
    dysk”I”nesia (think of your body/self in writhing movement)

  • @angeliarhodes
    @angeliarhodes 2 หลายเดือนก่อน +1

    Jess!!! I swear we are having the exact same experience right now!! I'm struggling as well. I take C/L IR with Rytary 4 times a day with Amatadine 3 times and Rasagiline 1 time a day.. my biggest symptoms are stiffness/soreness,rigidity of my right side and bad dystonia to my right foot...I'm lucky to get 5 hrs between doses and add stress, exercise....it's even less..So frustrating trying to get to a proper dose..😢

  • @DemetrioFigueredo-z7p
    @DemetrioFigueredo-z7p 2 หลายเดือนก่อน +2

    Hello Jessica,
    i am 8 years diagnosed. you are absolutely right no two days are alike. Its getting harder and harder especially with the lower back pains that i have had this past year 4 epidurals and a couple of other injections, it just keeps on coming.........when will it stop

  • @dep7361
    @dep7361 2 หลายเดือนก่อน +2

    I highly recommend any qualified person to have a DBS for a more controlled life style. My wife had her implant in 2019 at OSU Wexner Medical Center. Last week, Dr. Patel tweaked the DBS for her right leg to move and step out stronger. Amazing results!

  • @Lalaland-q2z
    @Lalaland-q2z หลายเดือนก่อน

    My wife died from Parkinson's after Dx of 22 years, she had the type of Parkinson's with no dyskinesia ,but apparently more frequent falling and freezing of movement then those PD patients who have uncontrolable movement...every patient is different we were both fortunate pre Covid pandemic to
    have 3 hospitals in our large city that had PD support groups for pateints or just caregivers ,sadly speaking those groups post pandemic closures never were reinstated.
    I can't state enough how helpful those in person groups were with many PD folks who would share their lives with us, as well as family caregivers.

  • @JohnMcCreery
    @JohnMcCreery 2 หลายเดือนก่อน +2

    Can’t speak for God, but this 80 year old man diagnosed with PD in June 2023 agrees with everything else in the previous comment. Jessica, you are an inspiration to OFPD (Old Fogies with PD) as well as YOPD.

  • @lanam3348
    @lanam3348 2 หลายเดือนก่อน +5

    Jess, thanks for your honesty. This disease is like Whack-A-Mole… it’s always changing. Here are a few things I’ve learned:
    I’m 2.5 years past diagnosis, 53, and now on full time disability from a professional job.
    I’m doing life with Christ, not life with Parkinson’s. I’ve cut back to bare minimum Levocarb because I got addicted to it… intense anxiety when I hit OFF times, especially when working.
    Trauma from the tremor was difficult, but I was counselled to deal with it head on.
    Minimal Levocarb means more tremor and bradykinesia, but less dramatic ON/OFF phenomena. I made an intentional choice to get off the hamster wheel.
    My big issue is now cognitive changes.
    It’s okay to take time for yourself to figure out what is right for you. Having a demanding day CAN greatly affect your next day, causing the big fluctuations. I’ve learned to build in rest days especially after pushing myself. Social times need a buffer after too. Take a “stimulus break” after a meeting, for example, where you go to a quiet, darkened space. You don’t need to know all the answers, just the One who IS the answer.
    Praying for you 🙏❤️

    • @lanam3348
      @lanam3348 2 หลายเดือนก่อน +2

      Also, you might find this helpful to remember/ recall dystonia vs dyskinesia:
      dysTOEnia (think of toe cramp)
      dysk”I”nesia (think of your body/self in writhing movement)

  • @normanrubenzer
    @normanrubenzer 2 หลายเดือนก่อน +2

    thank you for being honest, you provide help for people going through the same things keep up the good videos, how many years has it been for brian since his dbs? can dbs help advanced parkinson like delusions and halluciations in the later stages?

    • @thesecretlifeofparkinsons
      @thesecretlifeofparkinsons  2 หลายเดือนก่อน +1

      Brian had his DBS 2 years ago. He's just now starting to take a small amount of C/L again. He said he wouldn't change anything (happy he had it). I don't think it helps with hallucinations due to Parkinson's, but I would have to guess it could help if you have hallucinations due to a side effect of medications. But that's a question for Dr. Patel. I'm not a medical expert ;)

  • @johj1344
    @johj1344 2 หลายเดือนก่อน

    Thank you for sharing this message. How long after commencing Sinemet does Dyskinesia occur? I am still considering taking the meds. A little apprehensive to be honest. I enjoy your input. Kind regards John

  • @panner0467
    @panner0467 หลายเดือนก่อน

    My sister has early Parkinson’s disease and she takes no Medications. Her treatment is meditation and alternative meditation. Our father is a medical doctors so it has been a struggle for us. She appears to beginning a lot better through meditation i.e Joe Dispenza, and all of the alternative meditations. But she really is getting better. How do you feel about that?

    • @Lalaland-q2z
      @Lalaland-q2z หลายเดือนก่อน

      My feeling as a past caregiver for several PD patients is that her present situation will not last and she will require medicine for sympton relief.
      However the mind is amazing and unique to each and everyone of us the New York City based neurologist Dr Stanley Fahn who along with the late Physician in the UK Dr. Marsden created the distinct and focused speaciality of PD as a Movement Disorder often gave examples at lectures
      how one treatment or self created advice in PD may work with one patient and not another. We have a lot to learn.

  • @newworld6474
    @newworld6474 2 หลายเดือนก่อน +1

    i am 5 years in tremor dominate and going through somewhat similar confusing symptoms and meds

    • @thesecretlifeofparkinsons
      @thesecretlifeofparkinsons  2 หลายเดือนก่อน

      Tremor dominate...have you considered DBS? I know it does wonders for people who are tremor or dystonia dominate.

  • @bobroyes589
    @bobroyes589 2 หลายเดือนก่อน

    Just found your site, your right every day can be different, with the meds, of times and such. About a year ago I started taking Inbrija an inhaler with levadopa in powder form, it helped in the off times. But one of the possible side affects is increased pressure in the eyes [glaucoma] now I'm being treated for that. The Inbrija worked well for me, but I stopped using it for the side effects. Every day an adventure.

    • @thesecretlifeofparkinsons
      @thesecretlifeofparkinsons  2 หลายเดือนก่อน

      I'm sorry to hear that. I hope you can find symptom relief in a different form.

    • @bobroyes589
      @bobroyes589 2 หลายเดือนก่อน

      @@thesecretlifeofparkinsons I went back to supplementing with the regular corboleva, I just wanted to pass on that the inhaler works fine [unless you get the side effects] .

  • @joshuabriggs7114
    @joshuabriggs7114 2 หลายเดือนก่อน +1

    Thanks for sharing. Reminds me i need to keep a journal.

  • @kalliroik.8456
    @kalliroik.8456 2 หลายเดือนก่อน

    Thank you Jessica for sharing about this 🎉😊

  • @anitajugwanth9524
    @anitajugwanth9524 2 หลายเดือนก่อน +1

    Acupuncture and Macuna powder helps

  • @robster021
    @robster021 2 หลายเดือนก่อน

    Yeah with you 100%! Trying to balance the meds for PD vs the meds for the side effects of the meds. Crazy times and with YOPD I've tried to minimize the amount of meds especially since I've been rejected for DBS. But I find the more PD meds I take the worse the D&D is.

    • @thesecretlifeofparkinsons
      @thesecretlifeofparkinsons  2 หลายเดือนก่อน

      Curiuos...why were you rejected for DBS? I go in for testing next month.

    • @robster021
      @robster021 2 หลายเดือนก่อน

      @@thesecretlifeofparkinsons because I was so far gone with cognitive and speech that they were worried I could totally lose memory and speech.

    • @robster021
      @robster021 2 หลายเดือนก่อน

      @@thesecretlifeofparkinsons and good luck. it's a life changer if you can get it done.

    • @thesecretlifeofparkinsons
      @thesecretlifeofparkinsons  2 หลายเดือนก่อน +1

      Thank you. We shall see!

  • @maryheffernan3420
    @maryheffernan3420 หลายเดือนก่อน

    I have a question which id be interested in peoples opinion..my husband is 65 and was diagnosed with PD over 2 years ago. Obvious tremor in one hand for a good few years. He was prescribed sinemet from the get go but has not ever started on any meds. Works well at exercises. However he is definitely a bit stooped and slower in movements and voice, despite the exercises diet and self care. He has always been worried about side effects of meds and is happy enough with the way he is getting along. He is being advised by everyone to go with the flow and start on meds. Have ye any thoughts? Will Sinemet make a big difference? We know everyone is different and that no one but a Dr can advise him.. so please just share your thoughts and opinions freely He feels he is happy to go on as he is for the moment. Eventually will have to take meds. But is he missing out on a better quality of life is a question we reflect on. Thanks in advance

    • @thesecretlifeofparkinsons
      @thesecretlifeofparkinsons  หลายเดือนก่อน

      Just my opionion, but take the meds. They work the best in the beginning because they are only so strong. The worse we get, the less the meds work. I compare it to migraines and advil. I can take advil for a regular headache and be fine. If I told my friend who gets migraines to take advil she would laugh at me because it's not at all strong enough to have any affect on her migraine. Same thing with PD meds. They are only so strong. We get worse over time and there is not much we can do later. So enjoy the now. The advice I wish I received in the beginning: Just because you try the meds doesn't meant you can't get off. If you have negative side effects that outweigh the benefit, then tell your doctor to take you off the meds. Simple! Good luck! (Just my opionion...I'm not a doctor, just a fellow patient ;)

    • @maryheffernan3420
      @maryheffernan3420 หลายเดือนก่อน

      @thesecretlifeofparkinsons Thank you so much for your reply! It has been very helpful. We do appreciate it and are reflecting seriously about starting meds. You take care and God bless you

  • @kareno1114
    @kareno1114 2 หลายเดือนก่อน

    Thank you for being so real & so honest!! We completely get it - especially when there are no accurate words to describe things. So grateful for you!! God bless you, Jessica, for your gift of self that you share so freely ❤!!

  • @shuligreenstein7693
    @shuligreenstein7693 2 หลายเดือนก่อน +1

    Dear Jessica, the difference between dykinesia and dystonia is very simple: dyskinesia is when you have involuntary muscle movement opposed to dystonia where you have repetitive muscle contractions occur involuntarily, resulting in twisting and repetitive movements or abnormal fixed postures

    • @shuligreenstein7693
      @shuligreenstein7693 2 หลายเดือนก่อน

      And yes, it's about time to consider DBS.

    • @thesecretlifeofparkinsons
      @thesecretlifeofparkinsons  2 หลายเดือนก่อน

      Yes, I agree. I'm going in for testing next month to see if I'm a candidate. I would be shocked if i wasn't.

    • @shuligreenstein7693
      @shuligreenstein7693 2 หลายเดือนก่อน

      @@thesecretlifeofparkinsons how long have you been diagnosed?

    • @shuligreenstein7693
      @shuligreenstein7693 2 หลายเดือนก่อน

      @@thesecretlifeofparkinsons I'm sure you'll fit 🐱

    • @thesecretlifeofparkinsons
      @thesecretlifeofparkinsons  2 หลายเดือนก่อน +1

      I was diagnosed a little over 5 years ago.

  • @melissamcnamee1702
    @melissamcnamee1702 2 หลายเดือนก่อน

    I have been where you are 10 years ago. Rytary is way more steady. I look back on video of me compared to now, I wish Rytary was around back then. I had so much more dyskenisia.

  • @lisaclyburn1501
    @lisaclyburn1501 2 หลายเดือนก่อน

    Thank you Jessica!

  • @arupdebbarma4420
    @arupdebbarma4420 2 หลายเดือนก่อน +1

    These are related all vagus nerve about😢😢😢😢
    I had vagotomy after i got Parkinson disease

  • @pault6940
    @pault6940 2 หลายเดือนก่อน

    Has anyone tried the new med called Crexont? It’s supposed to be like Rytary with both IR and CR levodopa in one.

    • @annb5610
      @annb5610 2 หลายเดือนก่อน

      Can not afford it

    • @thesecretlifeofparkinsons
      @thesecretlifeofparkinsons  2 หลายเดือนก่อน +1

      From what I know, it's just like Rytary but with something that helps with absorption so the medication lasts longer in the body.

  • @ginasurber5960
    @ginasurber5960 2 หลายเดือนก่อน +3

    The Dystonia is really painful, i had toes dystonia for a couple years, and stayed 30 mins or more until the medication kick in, thats the time it stop , and dyskinesia is just your body move around, specially when you talk, sometimes make you dizzy, so I decided to installed dbs, just recently, 4 weeks ago, so far the dbs work, as of now i don't have dystonia, dyskinesia and tremor, I have relief, don't know for how long.

  • @jennebeattie3168
    @jennebeattie3168 2 หลายเดือนก่อน

    Super helpful and encouraging ❤

  • @chaseme9860
    @chaseme9860 2 หลายเดือนก่อน

    Its been my experience with any medication, less is better. You are better off not getting the comlpete full dosage benefit and struggling a little bit than the alternative. Its far worse when a medication stops working because of built up tolerance. Just take enough to " take the edge off" not to eliminate or cure a symptom. Don't get yourself into the chasing game of higher and higher dosages.

  • @HeatherChaney-z9i
    @HeatherChaney-z9i 2 หลายเดือนก่อน

    So helpful!!💞

  • @racheldimayuga4636
    @racheldimayuga4636 2 หลายเดือนก่อน

    Thanks for sharing..

  • @kfulcraft
    @kfulcraft 2 หลายเดือนก่อน

  • @ClipsBitsAndMore
    @ClipsBitsAndMore 2 หลายเดือนก่อน

    DBS was my choice just completed stage 1 surgery was on 29.09.2024.
    Staples out 14.10.2024, program kicks off official 22.10.2024. Mine was do in Ireland beaumont. Medtronic stn placement.

    • @thesecretlifeofparkinsons
      @thesecretlifeofparkinsons  2 หลายเดือนก่อน

      How was stage 1? Did it hurt to get the staples out?

    • @ClipsBitsAndMore
      @ClipsBitsAndMore 2 หลายเดือนก่อน

      All said so far it went well. No post surgery complications.
      I had around 78 staples. Removal is painful but you manage.
      While not a requirement. I shaved my head to make it easier on the surgeon. Plus post op, it will limit the rise of infection.
      Since you will not be washing your hair much and so on.
      Now I just need to capture my events prior to my first programming.

  • @clausdnk5163
    @clausdnk5163 2 หลายเดือนก่อน

    I listened your podcast in my car and love it! Hugs to you. Hope you find your sweet spot. PS this sucks

  • @JeremyMcdonald
    @JeremyMcdonald 2 หลายเดือนก่อน

    Thx for the video! I would love to chat sometime!

  • @Dennis-c6u
    @Dennis-c6u 2 หลายเดือนก่อน

    cutie

  • @j6453
    @j6453 2 หลายเดือนก่อน

    I sent a message to you. I hope you received it. Can you check your junk mail for the last two weeks? Sent with best wishes, I hope I'm not a bother!

  • @arupdebbarma4420
    @arupdebbarma4420 2 หลายเดือนก่อน

    Sister are you Parkinson disease