Parkinson's Off Time - Then Med's Kick In

To experience off time with Parkinson's disease is no fun, but we must do our best during these times. It is truly extraordinary when the medicine taken to treat Parkinson's disease kicks in. This video captures the moment from being off, shuffling feet, slowness, stiffness, and then, all is good again.
#YoungOnsetParkinsons #YOPD #WigglesProject
This is such a great video from Jeremy Mcdonald :)
• Ep. 7 Parkinson's Dise...

[@davidhughes5998]

I think it's very brave filming. And helpful.

[@ParkinsonsWigglesProject]

Thank you! I sincerely hope it's helpful!! I totally understand what you mean by brave...but it's me and my experience. No one should need to brave to be who they are, ideally :) So let's do what we can to create that world!!

[@isabelanton7186]

THANK YOU VERY MUCH.....FOR BEING ....SO BRAVE !

[@wandachase3831]

Great video, Jennifer, thanks for sharing!

[@ParkinsonsWigglesProject]

You're welcome & Thank you for watching!

[@nickmaffei5123]

Keep filming. It is helpful to me and many others.

[@ParkinsonsWigglesProject]

Thank you Nick!! I will 🤗 and you keep commenting please.

[@davidhughes5998]

Thanks for sharing.

[@ParkinsonsWigglesProject]

Thanks for watching 🥰

[@user-mw5sg2ts8z]

Perfect I have that to

[@evabeaver3452]

Thank you

[@ParkinsonsWigglesProject]

Thank you! 🥰

[@petercooper7711]

Just found you! Enjoyed your videos and very helpful!

[@ParkinsonsWigglesProject]

Thank you Peter!

[@James-ws6du]

Thanks for your video looks like my off times

[@ParkinsonsWigglesProject]

Thanks for watching! 🥰

[@timhynd5392]

I’m 44 years old I was diagnosed with Parkinson’s two years ago. Over the last few months, my symptoms have rapidly progressed to where some days it takes me an hour of lying on the floor, meditating because my body is so locked up. I can hardly move once this breaks and the meds kick in. I am OK but not great for a couple hours The rest of my day I take levodopa every three hours, including throughout the night, some days the on periods are OK, but not great other days the on periods feel more like mild off periods, and some days I will go into extreme off. Even an hour after I have taken the meds these off periods have lasted up to 10 hours of violent shaking, but being so locked up. I’m stiff as a board and can barely move. I’ve seen two different doctors in the past few weeks letting them know my current situation, but it’s only getting worse if anyone has any information that could help honestly, beyond appreciation at this point, I think you could save my life!

[@ParkinsonsWigglesProject]

Hello Tim, I am very sorry to hear about your struggle to feel on or as normal as you can! Only your doctor can help you find the right mix of medications, and hopefully one of the two you have recently seen are offering you options. There are new treatments in the pipeline, but all we have now are medications and DBS right now. When I was diagnosed at 38 I owned a pub and it didn't take too long before I needed more C/L, the demands of the business were intense physically and mentally. I have been taking C/L every two hours, sometimes every 1.5 hours, for about 6 years now and like you also take it throughout the night, when I wake up. There are tricks I discovered to help it kick in faster, like drinking carbonated beverages, I drink ginger ale, and acidic drinks like orange juice. These totally help! I have my rescue medicine when needed, Inbrijia, and also take 1 rasagiline, and 2 amantadine. We are all different in our needs but what we all need are doctors who are willing to prescribe/offer options for us to find the right mix of medications. Have you seen a MDS (Movement Disorder Specialist)? If you haven't you should! This has been my meds mix for a while now, along with exercise which is super important!! If you haven't found a YOPD support group you should look for one as well, talking with others with YOPD has been a game changer for me, I've learned so much! Hang in there and know that you have options it sounds like you haven't explored yet!

[@gregb8571]

It is important to take your meds at least one hour before a meal or 2 hours after. Drink plenty of water so the pills get to the part of the intestine that absorbs them. If the medication doesn't work try another drink of water. Certain foods will prevent the medicine from working. Avoid pastries and milk or food high in protein like meat. It is better just to eat fruit and vegetables. My doctor prescribed me Entacapone to make the levodopa work longer. Also, avoid stress which prevents the medication from working. Do stretching exercises such as touching your toes to help improve mobility.

[@hazelredfern]

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[@hazelredfern]

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[@hazelredfern]

​ 6:23 @@ParkinsonsWigglesProject

[@ivankos3305]

Cue1............Dr Peter Tass & Parkinson's glove

[@goodvibrations528]

You just describe my life to a Tee! I can never understand why one day I'm great well a parkinsons great then the next day, despite having same meds I'll be off all day. Like you I go through..what did I eat, what did I do....Its a very strange disease that makes you question everything. But thank you for your description and video xx

[@ParkinsonsWigglesProject]

It is surreal! To go from normal to not normal back and forth throughout the day everyday! Thank you for watching, sharing, and your comment 🥰

[@isabelanton7186]

YOUR VIDEOS...AND YOUR COURAGE.... MAKE US ALL MORE BRAVE IN THE UNDERSTANDING OF THIS CRUEL DESEASE.. OF YOU LET IT BE CRUEL... IT IS A BATTLE OF EVE RY HOUR OF THE DAY

[@isabelanton7186]

THANK YOU......❤❤❤❤❤❤❤❤

[@anthonylowe4370]

I'm 55 and I was diagnosed with parkinsons at the age of 49 and I've noticed that my parkinsonism has progressed over the last 2 years

[@ParkinsonsWigglesProject]

Parkinson's progression sneaks up on us little by little. Hopefully you are staying physically and socially active, that is one thing that helps BIG time :) Thank you for your comment Anthony!

[@Mike-mo6jm]

True story. ,

[@JeremyMcdonald]

Thx for the shout out!

[@ParkinsonsWigglesProject]

Thank you for your videos!!!

[@LifewithParkinsons]

Yes more video’s Jeremy!

[@JeremyMcdonald]

@@LifewithParkinsons Very soon!

[@kimaegaii]

Hey, how long does the levodopa kazoo last for you before you need another hit? One of my biggest issues is fatigue, and cognition/doing tasks. Does it help you with that as well? Love these videos that show the real deal of what's actually happening. Thanks.

[@ParkinsonsWigglesProject]

LOL! The thing I call the kazoo is a medicine called Inbrija and it's an emergency levodopa that is truly awesome!! I only take it as needed which means some days not at all, other days 1-2x's. I am a prolific napper, but only 30 minutes or less and I am militant on that and so is my internal clock because I automatically wake up in 30 or less. So when I get tired I take a nap. Sometimes I will get tired after my daily hike with my dog which is strange because exercise usually invigorates?! There's a lecture that I just saw somewhere on social media from the PMD Alliance about cognitive tips....they are a great resource if you don't know about them...I will look for it and comment again for you with the link when I find it :)

[@ParkinsonsWigglesProject]

kzbin.info/www/bejne/e5CVgYmLbsaHosU

[@nicholasfuller6358]

I just found your page yesterday and I’m loving your content. I am newly diagnosed with Parkinson’s. I was diagnosed on 3-28-2023. I’m just looking to become part of the Parkinson’s community.

[@ParkinsonsWigglesProject]

Thank you Nicholas!! Looking back I wish that I had reached out sooner to the Parkinson's community, it took me years, so you are doing a great thing because I have learned so much from people with Parkinson's!! There are smart, positive, and beyond helpful support groups out there and lot's of resources. We are here for each other on our journey with this disease 🤗

[@MikeMercury]

like what you do sharing with us merci dear

[@ParkinsonsWigglesProject]

Thank you Mike!!

[@LifewithParkinsons]

Never seen the kazoo med. could you spell it out for me?

[@ParkinsonsWigglesProject]

LOL! It's Inbrija and I know someone in Canada who said it's not available up there, but he's in Toronto, not sure if it would be in BC?! I call it the nickname because it makes a sound when you inhale...it's a dry levodopa powder delivered as the pill spins inside the blue thing...It really works (for me)! And I am so thankful my insurance covers it!! Hope it stays that way!!

[@jackienolan9859]

Thank you so much for taking the time to share your plight. . .I have been recently diagnosed but find I can only google/research in small doses as I still find it too overwhelming to fully take in. Too many 'what if's' Although I am technically not YOPD at 56, I find that group more relatable given I have always been physically active and in excellent health. It is rare that I even get a cold so going from that to learning I have PD is a bit mind-blowing. So far symptoms are fully relieved on 3 doses of carbidopa/levodpa but I realize progression of the disease looms. Question: It's been a couple of months since my diagnosis but I have not disclosed to family and friends. There are a few people who know but do you have tips for sharing in a way that does not cause too much alarm? I'm thinking that maybe even my willingness to comment here is the start of my ability to disclose (to strangers anyway) but tips appreciated for relaying the news to loved ones appreciated. . .Thank you again for this very helpful channel :)

[@ParkinsonsWigglesProject]

Hi Jackie! The information about Parkinson's can be totally overwhelming, even after all this time small doses for me too, because there is soooo much to learn and think about. What works for me in terms of uncertainty is knowing that life, even without PD is uncertain, we never really know. I do my best to not think about how the disease will progress, especially years from now, because there's no answer and do all I can live my best today. I can't stress enough how helpful exercise and physical activity are, along with a healthy diet, having state of mind/finding peace with having PD because it's not the end, to help manage symptoms and slow progression. Regarding relaying the news to loved ones...while everyone is different there's no one I know with PD who wished they had kept it to themselves or waited longer to tell people. I personally believe the sooner the better, and told those closest to me right away but didn't discuss with it people that were in the periphery until recently. Even though my response is long I believe in short and sweet :) In order to try and not worry people I find it most helpful to not tell them in a worried/doom tone, saying something like....I've been diagnosed with Parkinson's and yes while no one wants to hear those words and as crazy as this may sound there are people who live happy lives for many years and this is what I plan to do. You will find some want to know more but most people are respectful, kind, and supportive. If you yourself are positive about it others will find it easier to be positive themselves : ) Thank you so much for taking the step to reach out to share with me, and stay in touch!!

[@jackienolan9859]

@@ParkinsonsWigglesProject That's great advice. . .I will likely begin sharing soon - just still digesting it all as you may remember the initial shock and all the thoughts that go along with it. I need to be in a good place so I can relay it without overt fear coming across. . .Looking forward to staying in touch!

[@ParkinsonsWigglesProject]

@@jackienolan9859 The initial shock is real and I get it. As are all the thoughts, fear, all of it, I totally understand. Talk soon and until then take care of your wonderful self!

[@jackienolan9859]

@@ParkinsonsWigglesProject Hi Jennifer - another question if I may. . .I've read on the internet in a couple of places that the 'Tremor Dominant' type of PD is the the more benign type of PD compared to the 'Non-tremor Dominant' type which involves a faster rate of progression as well as more debilitating symptoms (i.e. earlier dementia and other challenges). I mentioned this to my neurologist who seemed to dispute this was true. I respect my well regarded Neurologist from Mass General/Harvard Prof but I just wonder if maybe you've heard the same thing? So far in (diagnosed 3 months ago), I don't have much of a tremor. I have gait issues and bradykinesia. The Cardidopa/Levodopa working perfectly for me sort of sealed the diagnosis. So just interested if you heard about the differences between the two types? Thanks Jennifer! Much appreciated - Jackie

[@ParkinsonsWigglesProject]

@@jackienolan9859 Hi : ) From a patient's perspective, I agree with your Neurologist. While I am not a doctor, the truth is no doctor is going to be able to tell you exactly how the disease will progress period. Whether you have more of a tremor or gait issues from my understanding will not give a doctor this answer. It is different for all of us and this is one of the many but I'd say more challenging aspects to having Parkinson's. You can be proactive and do what is good for the brain and body, exercise, eat a good diet, be social and with friends, and live your life the best you can! II did a video on my progression if you haven't seen it...this December it will be 9 years since my diagnosis and I am still going strong, and while I have my off moments I still love and live for every day!!

[@loriwong3]

Does CoQ10 work for you? Do you see a difference?

[@ParkinsonsWigglesProject]

Not for my Parkinson's symptoms. I take hoping to make my heart happy :)

[@ricksuvanto5009]

Thanks for sharing your video when you're off. We all need to see a bit more of these kind of videos. Just a question, do you not use a pill organizer? I find it helps me keep track of whether I'm taking pills or not

[@ParkinsonsWigglesProject]

I don't use one and know I should!! Even using an empty pill bottle and just putting my days meds in it would be just fine but...An inside joke I have is that I sometimes like to make life as difficult as possible for myself : ) Thank you Rick!!

[@misssabaitip]

That was great video. By the way are you living alone with dog 🐶 and cat 🐈‍⬛. You’re so brave.

[@ParkinsonsWigglesProject]

Thank you! Two cats and one woofer : ) Don't live alone, but have most of my adult life, and as an only child have always loved my own space. Live with my hubby and the monsters as we call our loved furry friends 🥰

[@misssabaitip]

@@ParkinsonsWigglesProject oh my Dr recommends that I get DBS. Did you have DBS done yet?

[@BobRoussel]

What was that you inhaled?

[@ParkinsonsWigglesProject]

It's a rescue medication called Inbrijia :)

[@etheltough8924]

My husband has just been diagnosed with Vascular Parkinsons has to wait 3months to see a consultant,at the moment he takes d3 and b1 supplements and attends Occupational therapy 🎉

[@ParkinsonsWigglesProject]

Thank you for your comment...I hope the appointment with a consultant goes good and helps your husband!

[@etheltough8924]

@ParkinsonsWigglesProject yes he got on well ,he will b given a bone scan in the next 6 months .He applied for a blue badge about 4months ago ,he has been refused ,his Consultant asked him if he had one ,he was surprised when he said I don't meet the criteria.His consultant offered to do a letter for him so hopefully he will get one

[@toryberch]

Hi, I am getting close to my diagnosis of Parkinson's My first symptoms were occasional finger and eye twitches along with constipation. I am on Carbodopa levodopa and notice my med won't fully work if I'm not going regularly. Constipation for me feels like a stone wall It's hard to budge. Could that be an issue 🤔 for you maybe?

[@ParkinsonsWigglesProject]

Yes it’s possible! Another big issue for me is right before I get my period…about one week before my symptoms are at their worst and my meds don’t always want work. But staying regular is key! I put olive oil along with maple syrup in my oatmeal in the morning… used to use coconut oil but then worried about saturated fats but they’re both delicious , and I take magnesium both have been super helpful! 💕

[@toryberch]

@@ParkinsonsWigglesProject 😊 thanks for the info. I'm gratefully past my ladies days... I will add the olive oil and syrup next time I have oatmeal. I do have to take lactulose to keep me moving 😉💕

[@ParkinsonsWigglesProject]

@@toryberch thank you for sharing your experience as well! I’ve learned so much from others with PD and am grateful that we have each other! 🤗

[@toryberch]

@@ParkinsonsWigglesProject Darlene McPhate my life with Parkinson's please check her out. She's such a warm kind person. I've learned alot from her. I agree, we need to put so many pieces together in learning about this disease P.s she tells funny stories at the end of her videos 😄😊

[@Here---Now]

@@ParkinsonsWigglesProjectOatmeal is very high in glyphosate, not good for you.

[@LP-fz3ew]

What medication did you start with?

[@ParkinsonsWigglesProject]

Carbidopa Levodopa :)

[@LP-fz3ew]

I was just diagnosed at 48 in October of 2021. I’m torn as to which route of medications to start with. I go see the Doctor on march 21st.

[@ParkinsonsWigglesProject]

​@@LP-fz3ew It's a very difficult decision because you want to make the right choice and there are many options. I feel lucky for my situation that I was given the sinemet test as part of my diagnosis and that it (carbidopa levodopa) gave me my life back instantly. I didn't have any side effects from it...some people I know had trouble in the beginning with nausea but not me. Also at the time I owned a restaurant and needed to be on my A game and once I tried it, there was no way I was going to try anything less effective, it's the gold standard in treatment. But this is not the case for everyone with PD and this goes back to the importance of the decision. My advice is to do your research on your options and determine what you think may be best for you based on your research and discuss with your doctor. For example, because I love to shop, spend money, and I also play poker, I knew from my research that dopamine agonists was a direction NOT for me and I absolutely wouldn't consider taking them. Potential side effects from agonists are clear thankfully so this helped me make the best decision for me. Hopefully you have a doctor that you can talk to about your concerns, goals, and needs. Don't be afraid to advocate for yourself as well, if after your research if you believe one course of action seems to sound like the best discuss with your doctor and your reasons why. The Michael J Fox Foundation is a great resource for reliable information about treatment options. Other friends of mine love Dr Laurie Mischley with Seattle Integrative Medicine. There is a lot to learn, and I am still learning, so arm yourself with the best information and a great care team and reach out to others with PD like me, we are all here for you and want you to know there is hope!! : )

[@hasnaelahrichi6464]

@@ParkinsonsWigglesProject m

[@user-yy7ys8vr8c]

Very courageous and helpful. thank you. I’m 73 and last year was diagnosed with LBD. Before meds, I was to the point to where I would freeze and not be able to move it all now I’m walking 3 miles every day.

[@user-mw5sg2ts8z]

I always take a nutrgr lnbar after

[@pamelakumar7153]

I’m having Parkinson’s disease

[@ParkinsonsWigglesProject]

It can be managed…hope you are well!