OFF Time in Parkinson's: (Your Top 20 Questions Answered)

[@therealkathleenkiddo]

I always come back to watch the Davis Phinney library repeatedly because as a Disease changes a different part of the video will become more relevant

[@vednagarcia2071]

Constipation is a daily concern for me at 84 years old and for my 63 year old son, a Parkinson's patient. We've had some success with having plenty of fruits, especially papaya along with a good balanced diet including many veggies and exercise.

[@davisphinneyfdn]

Thanks for your comment. Keep up the good diet and exercise. Keys to living well with Parkinson's!

[@jagrutidesai8611]

Made my day Thanks a million 🙏

[@GoProGoalieUzi]

Hello, I was diagnosed at 40 in 2018. Started off with 2 sinimet. Now, at 44 I’m taking 12 per day. Sinimet does not last long for me. Basically takes 30-1:15min to kick in. Lasts 1-2hrs then the wearing off comes, slow, stiff, rigid and pain in my arms. Also so stiff at night. Very difficult to move! Now I take 2 more sinimet around 3-4am. Parkinson’s is brutal..I’ve always exercise and mountain bike. I also walk 23-30k steps 5x week for work.

[@PrincessMimi214]

How many milligrams of C/L do you take?

[@GoProGoalieUzi]

@@PrincessMimi214 100/25mg x2..

[@TheAndolino]

I I was diagnosed at 57 in 2017. Started off with 3 sinimet. Now, at 63 I’m taking 13 per day. Sinimet does not last long for me as well. Basically takes 30-1:15min to kick in. Lasts 2-3 hrs then the wearing off comes,

[@m400gts]

I was diagnosed at 48yrs old and Sinimet three times a day and took pramiprexole as well three times a day which worked very well initially but then had to have these 4 times a day and eventually was put on 1 Sinimet and 1 Sinimet plus 4 times a day and 3 pramiprexole a day! In October 22 I was taken off pramiprexole for obsession reasons and have been on the Sinimet and Sinimet plus 4 times a day while my neurologist decides via a ct scan and an mri scan that 54:26 I’m now waiting for before they will reset my medication and this is pure torture as I have no way of knowing how long the dose will take to kick in and how long it will last. Kicking in 30 mins to 2hrs Lasts between 1 hour and 2 hours with occasional 2.5 hours which is causing me to fall and have very bad anxiety, falls and sevèral body aches and restless legs and broken sleep! Any thoughts on this?

[@hunfon3070]

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[@sylviamcdaniel4590]

I was diagnosed with Parkinson's in February of 2014. These videos have helped me TREMENDOUSLY. There are more hidden symptoms than obvious ones, (tremors and a shuffling walk) Anybody who has Parkinson's, whether for several years, or newly diagnosed, càn benifit from these videos. Knowledge is POWER.

[@davisphinneyfdn]

We're so glad you've found value from our videos. We're here for you and for everyone affected by Parkinson's.

[@MohammedBhuiya]

@@davisphinneyfdnI hi hi hi hi hi no hi by B

[@MohammedBhuiya]

@@davisphinneyfdn😅 I I I no CT with 😮😮yyui yh

[@larkshairi5817]

First extremely helpful video on PD that I have watched. Dr. Yasar is a Godsend! Wonderful session! Thank you Davis Phinney Foundation for this very informative video 😊♥️💯🙏

[@therealkathleenkiddo]

Enjoy this so much and I would like to add that we should redo this with just Parkinson’s people who can show the on off within one hour. Mine fluctuates no matter what I do right now I can barely breathe or move but an hour and change ago I was jazz hands

[@davisphinneyfdn]

Are you volunteering:)?

[@therealkathleenkiddo]

@@davisphinneyfdn all I need is one person with me to shoot some footage any day anytime… Off times never fail to show up. Let’s roll!

[@estherdeligny5299]

Very informative! You answered many questions that I had. Thank you.

[@wclogger1]

Great presentation obviously some thing that is close to your heart, which means it is good for us, thanks

[@effathosseini795]

Hi I am suffering from PD taking: levodopa ,carbidopa,entacapone, half sinemet also doing exercises nothing affecting to reduce my constantly tremors is there any hope at all for treatment completely really affecting my socialising. Thanks

[@mushfiqahmad1]

I started losing my balance at age 21. at age 29 I started limping although I had no injury. There was no pain. In the next one and half years my movement became very slow. Then I was barely able to walk. I was 31 when finally a doctor diagnosed that it was Parkinson's but he did not disclose it to me. He prescribed one tablet cinemet in the morning and one at night. My life became normal. I was very happy. I finally came to know that I had parkinson's when I was 33. Now I am 39 and have to take 3 tablets and a half in 24 hours to be able to do what I need to do: Drive children to school Bring them back (I try to avoid driving during off period) Going to my office in late afternoon Coming back home around midnight

[@GoProGoalieUzi]

I was diagnosed at 40 in 2018. No tremors yet, up to 12 sinimet now per day. My off period is really bad, and lasts 1hrs-2hrs…

[@PrincessMimi214]

Did you ever confront your neurologist why he didn't disclose to you that you have Parkinson's in the beginning?

[@kantikhanna563]

My question is : for some months now I have had doses of what feels like pins and needles in various parts of the body. They can last from one minute to 3 or 4 minutes.. This spreads from the sole to the top of the body more on my left side that is the Parkinsonian side. Could this be connected with either of the 2 more recent additions to my list of drugs Opicapone 50mg or Bacolofen 10 mg?

[@davisphinneyfdn]

Hi Kanti - It's so hard to know. I would definitely check in with your prescribing doctor or even your pharmacist as they will have a good picture of all that is going on with your medications and side effects.

[@joyceho4496]

I find that during my off periods l get pins and needles in my feet and what my husband , a doctor describes as nerve pain. . I take Lyrica and it helps me a lot. I also use Neupro Patch which also helps my nerve pain.. .

[@davisphinneyfdn]

Thanks for your comment. You're not alone in finding that Neupro can help with pain. Here is a related trial report: bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-14-42

[@therealkathleenkiddo]

..."if you don't have a 3 year old like me" or "Let's not forget nighttime.." on sleep fragmentation. This interview is worth watching more than once because I glean more each time. Personalities plus useful info make these talks so interesting.

[@justinmariana12]

My off days just pop up, I workout, shower, shave, eat my first meal. After about an hour, I get this overwhelming fatigue. I need a nap.

[@therealkathleenkiddo]

If only someone had a camera on any hour of any day you would see it happening every hour -it is unmistakable to professionals in our field yet the untrained eye has no idea what to make of it. Nor do I. How could it be so crippling and severe within just a few minutes or hours? The unpredictability aspect of this severe change from functional to dysfunctional or disabled is extremely difficult to manage in fact I don’t think it can be controlled even with the best possible care and strictest disciplines… This disease becomes isolating beyond words.

[@stephenavey3416]

Can anyone tell me what can be done about excruciatingly itchy head hair mainly at night?

[@davisphinneyfdn]

HI Stephen - It's sounds like you may be experiencing seborrheic dermatitis, as this is not an uncommon symptom that people with Parkinson's have. Have you spoken to your doctor about it or a dermatologist? Tea tree oil and some dandruff shampoos can be helpful to ease the itching. If not, there are some prescription meds your doctor may be able to prescribe.

[@ziggykoenigseder7327]

rub in apple cider vinegar daily to scalp

[@pattydouglas8012]

How much to rub into ​ and for how long before rinsing@@ziggykoenigseder7327

[@trishkparker]

I just started on off episode. 2 days now. I’m so scared

[@davisphinneyfdn]

We hear you. OFF periods can be scary, even for those who have experienced them often. There are medication modifications that may help, including some newly approved options. Additionally, some lifestyle adjustments may improve medication efficacy. We encourage you to talk with your doctor about your OFF experience and your current treatment plan to see if there are any changes they'd recommend. Here is a blog post that may be helpful with regard to the medication options you and your care team might consider: davisphinneyfoundation.org/four-strategies-for-modifying-your-parkinsons-treatment-plan/ And please don't hesitate to reach out to us at [e-mail] if you have any questions we might help with.

[@rosanegurgel6665]

Eu tomo o óleo de Canabis e me sinto muito bem ! Dr Benedito pode explicar o porque.🎉

[@BennoTheTruth]

Does cannabis oil still work for you?

[@GoProGoalieUzi]

I’ve also tried antacopone to increase the effectiveness of sinimet however for me it delays the kick in for sinimet and I struggle more. So I stopped taking antacopne.

[@steamrollers61]

What is diskynesia?

[@davisphinneyfdn]

Thanks for your question! Dyskinesia can be described as uncontrolled jerking, dance-like, or wriggling movements. Symptoms range from minor tics to full-body movements. It can be a stand-alone condition; however, in people with Parkinson’s, it is most often associated with long-term use of levodopa, a drug that increases levels of dopamine in the brain. This blog post goes into more detail: davisphinneyfoundation.org/what-is-parkinsons-disease-dyskinesia/

[@MLStanleyK]

Just watched it....very informative.......Merci'!

[@karenian5207]

INBRIJA is such an amazing new medication for anyone with Parkinson’s disease. Ty for sharing this info.

[@ricexxjm]

Good job

[@frenchycanada]

Doing exactly that with my pharma....thx

[@geraldnewman9278]

Inbrija

[@awolff1342]

/ ​@@frenchycanada

[@showtrue1]

Even I thought so initially. I tested tens of product samples But majority failed

[@jamesmccabe908]

Does mega dose thiamine help?

[@davisphinneyfdn]

Thanks for your question. There are anecdotal accounts of high dose thiamine being helpful, as well as some open-label research about the subject, but the evidence is not conclusive one way or the other. We recommend you talk with your care team about this question.

[@georgiagalua6251]

Hello I was diagnosed Parkinsob disease last 2019 I have maintenance Levodopa now in 2023 I experienced constant lightheadedness/dizziness, is this cause of my Parkinson?...I am from the Philippines. Thank you

[@jamiecapobres6339]

Could be orthostatic hypotension

[@joyceho4496]

😅

[@nancymcwilliams2925]

L ok 25:41 25:43 25:44

[@rosanegurgel6665]

Levadopa? Never!!!

[@joyceho4496]

.