Parkinson’s “Off” Time: What It Looks Like, and How to Manage It - MJFF

What does it mean when we say that Parkinson’s can go from “off” to “on” and then back to “off” again? Listen to this Michael J. Fox Foundation podcast as experts discuss these “off” periods — those times when medication can wear off between doses, or are not working optimally, and symptoms can return. This episode will share steps you can take to manage “off” time, including how you can communicate with doctors and care partners about what you’re experiencing and ongoing research to decrease or treat these episodes. 

Host and person with Parkinson's Larry Gifford leads a discussion with:

• Ashley Rawls, MD, movement disorder specialist at the University of Florida Norman Fixel Institute for Neurological Diseases 
• Soania Mathur, MD, co-chair of MJFF’s Patient Council 
• Rick Schwartz, person with Parkinson’s and former professional baseball player 

Listen to the panel discussion at The Michael J. Fox Foundation 

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GOCOVRI update 1

 It's been a few weekson GOCOVRI, I'd say early results are reduced off times and reduced dyskinesia.  

I don't remember the medication I took prior, too many doctors each with their favorite combination of pills.  GOCOVRI isn't adding C/L but is time released Amantadine, so not hitting me with a double dose of C/L first thing in the morning. Not perfect but the best in a long time.

8/26/2024 Off times reduced and foot dyskinesia slowed down.

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Any GOCOVRI success stories?

The last two visits to my movement disorder specialist (MDS) each had a new doctor. Each doctor stopped previous med and started another.  Meds not optimized. Major off times.  

8/12/2024 — The latest doctor thinks a new medication GOCOVRI will help with the off times and dyskinesia. I'm concerned of constipation being a side effect. I’ve already been to the ER with constipation once before and it was no fun.  

8/13/2024 — Feeling pretty good so far after first night of gocovri. Giving it a week before doctor said to double dosage. Overall feeling somewhat better. Still getting two major off times with freezing around 10:30am and 5pm and other minor off times which last 15-30 minutes.

I’m thinking it is related to food in my gut conflicting with the absorption of levodopa. Hard to work around this when I take C/L every two hours.  Not giving up hope, I think back to last time I saw the original doctor I saw at this neurology office who reassured me there are many things to try and new treatments awaiting FDA approval.

8/21/2024 I started to take two GOCOVRI pills a night last night. So far I have a headache, but nothing else.

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Wake Up Brain, Wake Up

Sometimes it feels like a part of my brain is asleep. It isn't talking or listening to me. The meds didn't kick in properly or sometimes at all.  

I want to move an arm or leg or my hand to get leverage to pull myself up. Nothing, not even in my finger. 

I break a sweat wrestling with this invisible assailant called PD. Struggling in my mind to make movement. Then, after almost 2 hours, the meds kick in. I move my fingers, wrists. My neurons are medicated and with a sense of innocence, as if nothing is wrong, I stand up and cherish the 'on time'.

Off times are when my meds not working. On time refers to when my medications are on, or working. 

After a good night of sleep I may wake up fully charged, little or no stiffness for an hour or two. Regardless, I take the meds as scheduled.

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Congress Passed the National Plan to End Parkinson's Act

Big news just in from Michael J. Fox foundation

The U.S. Senate today unanimously passed the National Plan to End Parkinson’s Act, the first-ever federal legislation dedicated to ending Parkinson’s disease, sending the bill to President Biden’s desk to be signed into law. The bill passed with overwhelming bipartisan support in the U.S. House of Representatives last December. 

Senate Majority Leader Chuck Schumer (D-NY) announces the passage of the National Plan to End Parkinson's Act in the Senate.

On behalf of the 1 million people living with Parkinson’s disease in the U.S. and their families, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) applauds Congress for this historic step forward in search of improved treatments, and ultimately, a cure for every patient impacted by this disease today and in the future.  

The Parkinson’s community — including tens of thousands of Parkinson’s policy advocates, partner organizations and champions in Congress — rallied together to help policymakers understand just how critical this legislation is. From adding your names to MJFF’s petition, calling and writing representatives and senators, pitching op-eds and sharing your stories on social media — advocates in all 50 states sent more than 70,000 messages to Congress urging their support. And nearly 1,000 advocates joined MJFF to meet directly with their members of Congress.  

We’re especially grateful to the bill’s lead sponsors, Senators Shelley Moore Capito (R-WV) and Chris Murphy (D-CT) and Representatives Gus Bilirakis (R-FL) and Paul Tonko (D-NY) for their exceptional bipartisan leadership in getting this bill passed. We also extend our deepest thanks to Senate Majority Leader Chuck Schumer (D-NY), Representative Jennifer Wexton (D-VA), Senator Bernie Sanders (I-VT), Senator Bill Cassidy (R-LA), House Majority Leader Steve Scalise (R-LA), House Minority Leader Hakeem Jeffries (D-NY), Representative Cathy McMorris Rodgers (R-WA), Representative Frank Pallone (D-NJ) and the many cosponsors from around the country for helping to get this bipartisan bill passed.   

A cross-country strategy to end Parkinson’s has the potential to: 

Dramatically increase federal research funding; 

Develop more effective pathways for treatments and cures; 

Improve early diagnosis; 

Spark new and improved models for patient care; 

Create standards and measures to prevent Parkinson’s disease; 

Address health disparities in diagnosis, treatment and clinical trial participation and 

Enhance public awareness of the disease. 

As the bill heads to the president’s desk, we look forward to continuing our work with policymakers to establish the advisory council and bring the National Plan to fruition for every patient and family impacted by this disease. 

Please join us in thanking the 215 representatives and senators who supported this bill in Congress and read the Foundation's press release to find out more about this historic bill.

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Help me change a light bulb?

So I could blame a lot of things for the nearly impossible task of changing a light bulb, but I'm pretty sure it's 75% shitty product design and 25% user fault, meaning my diminishing fine motor skills related to Parkinson's.

About 5 years ago a light bulb burnt out in the hallway. No big deal I thought. I dragged out the ladder and stared at the cheap made in China fixture.  No way could this be as complicated as I'm making it. Yes, it was that complicated.  I posted a photo of the fixture with a plea for help to a few message boards. Someone who went through the demoralizing hell I'm going through replied.  Sent me a PDF with step-by-step directions how to change a light bulb in this fixture. Over the years I've experienced other poor product designs from computers to television remotes to poor user design on software. 

Oh sorry, I was drifting. Changing a light bulb. Yes that is what I'm doing today. The meds kicked in so I'm changing burnt out bulbs. Two bulbs broken and $18 down the drain. A few hours pass, off time, next dosage of meds. I've tried every method posted on YouTube an the bulb won't twist into the socket.

I had five new bulbs, broke two. Not able to get bulbs to stay in the cheap track lighting fixtures.  The reason I mentioned the bad product design is for my own sanity.  Knowing what passes as acceptable quality products, I'm fairly confident the sockets in the track lighting are cheap not designed to last a "simple" light bulb change. I refuse to blame my inability to change a bulb on PD. $40 on light bulbs and kitchen is dark. At least I didn't fall off the ladder and bust my ass.  Time to find a handyman and pay him some large amount to change 5 bulbs. 

PD sucks but things could be worse.

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New C/L Delivery System Sounds Promising

My gut has issues absorbing medications. Sometimes it doesn't seem to get absorbed, other times it can take hours then suddenly the medicine works. 

My doctor has been telling me about a new deivery system for carbidopa/levadopa that works like diabetes meds, with a tiny prick into fatty tissue, not only bypassing the gut but instead of spikes of medication every time I take a pill, this should have a steady flow.

Two subcutaneous preparations, ND0612 and ABBV-951, have been shown to improve OFF time/motor activity or dyskinesis in advanced Parkinson's disease. One advantage of ABBV-951, over ND061, is that it can be used alone as l-dopa therapy, whereas ND061 must be used with oral l-dopa.

Awaiting FDA approval.

I'm not giving medical advice. Everyone's PD is different and responds differently to the medications. Work with your movement disorder specialist to figure out what's best for you.

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Meds Adjusted and actually feeling a bit better, for now

A few meds changed or added seem to be helping me. 

Never follow my medical scribblings, consult your doctor before changing or stopping any medications.

Changed first dosage of the day of carbidopa/levodopa (C/L), here's what I'm doing... instead of one and a half pills at 9am, I ramp up with 1/2 a pill at 8:45am and half at 9:15. My analogy of taking 1 1/2 pills at once is a tsunami pulls the tide out (stiffness and freezing) then the wave hits me (a brief on time) before receding back into the sea (wearing off).  Splitting the dose is more subtle of a wake up for my brain-like the tides.

Yes my meds are still wearing off and I still get dose failures but somehow they seem a little less intense.

Last night I met up with one of my friends from Miami for dinner, then to go hear music! Dose failure and I'm sure it was totally due to taking C/L during my protein filled meal (hard to time this right). So nobody got to see my signature bad dancing at the show–but my next dosage worked and after the show, besides feeling exhausted, I felt good! Keeping my fingers X'ed. 

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DBS? Scared out of my mind

 I'm almost 10 years since my diagnosis with Parkinson's Disease.  At first Sinemet was the magic fix. One tablet 25/100 brought me back. Then mixing, matching, optimizing meds for the next 10+ years, like playing a carnival game. Where's the neuron. Transmitter or Receptor? Guess the med, win a prize.

Failed doses and off times are my norm. My "on times" are rare and brief. Stiffness, slowness, freezing all the time. Quality of life sucks. This illness and I destroyed my spouse, which hurts me most.

DBS. Deep Brain Stimulation.   Is this the final solution? Freakin' drill holes in my skull and poke some leads into my brain. Twice. Then a third surgery for batteries. Flip switch and, who knows. Surgeries every few years for new batteries. Praying to die instead of this modern twist on a medieval technique. Sure it's been fine tuned with super high resolution cameras and imaging but it's still probing around and see how the patient responds. It's brain surgery, folks.  Does DBS even help stiffness and slowness or just the shaking?  And what about personality changes.  Before PD ravaged me, I had a pretty good personality, liked by many (I would like to think) and very quick with humor.  I'm taking a ton of pills now, will that change? Less or more?  What is long term expectations with DBS. It doesn't stop PD progression, will it slow down?  

I'm the first to admit that I live in a fantasy world. Where is the nano virus that destroys what is killing my dopamine transmitters and receptors, fix everyone affected by PD. Where are the stem cells that regrow damaged and destroyed areas of the brain, and gut. Something. We have such high tech, the Parkinson's meds all revolved around Sinemet in one form or another.  

It's almost high noon, time for a radical breakthrough solution or face the reaper. I'm just about out of time. Science I believe in you! Don't disappoint. You must think outside the box. 

So scared. Wolves are circling.  Save me. Not much time left. 

I NEED A MIRACLE! Save my loving spouse. Please.

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PD Medication - Optimizing Gone Wild

 The battle of medications, dosages, frequencies versus PD is an ongoing battle.  My meds and off times went in a spiral in March 2021 right about the time I got the vaccine for COVID-19 (see PD and COVID-19 Vaccine). A coincidence? Maybe. Whatever the cause, I've been like a newborn horse trying to stand and walk, on a sheet of ice.  

My team of neurologists and their staff have been helping. Changing meds, doses and yesterday (June 30th) was the first day I didn't go to a 4 or 5, the red zone. 

I rank the PD symptoms on a scale 1=good to 5=bad,bad,bad and symptoms were not over a 3 for two days. A couple more days and I'd say we made progress! Whatever spun my meds, vaccine or random, I hope they're getting back in control now.

Anybody else have medication struggles after getting a vaccine?

UPDATE:  There were 2 good days but back to mostly off times. Meds not optimized yet. 

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Psych issues years before Movement Disorder issues?

My PD history is unlike any I've read. I started having psych issues: Anger/rage, paranoia, obsessing. My family and close friends thought I was crazy. This started about 8 years before an official diagnosis of Young Onset Parkinson's Disease (YOPD because diagnosed under 50 years old).  

The day I started Sinemet in May 2012, I felt euphoric. The Sinemet helped all non-motor issues (listed above), as well as gait, choking, arm swing, facial masking, etc.

I have one big favor to ask here, PLEASE tell me I am not the only person where weird psych behavior preceded the motor symptoms (like gait, arm swing, etc), and by so much time.   THANK YOU.

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Amantadine 100mg Capsules ?

 Anything good or bad to share about Amantadine? 

Besides Rytary's price and failing to last more than 2 hours in my system,  I've been having off-times and dosage failures with Rytary.  So I switched back to Sinemet and the MDS added Amantadine which seems to be creating anxiety, not sure if it's actually the new med or something else. 

UPDATE: After a week taking Amantadine anxiety settled a bit but on/off times still an issue 😿

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PD and COVID-19 Vaccine

I have to start with, "I'm not a doctor and any mention of medical or science is my opinion"

About 4 weeks ago I received the second COVID-19 vaccination. My memory of events may be a bit hazy, but it seems like the effectiveness of my Parkinson's medications changed shortly after the vaccine.  

This is my personal opinion and others will confirm I have been complaining about off times and dose failures for a long time. Can you tell I am emphasizing this is a personal opinion of a lay person, not the results of medical science.

Pfizer 💉💉

First shot -

2:00 PM - First dose of the vaccine had.a brief warm/burning sensation.

7:00 PM - The arm which got the vaccine was very week a few hours after the vaccination. 

Day 2 - 9:00 AM - The next day I could barely lift the arm.  This only lasted about a day and a half. 

Day 2 - 2:00 PM - 24 hours after injection, I felt slightly sick, like a mild flu.

Pfizer 💉💉

2nd shot - 

4:00 PM - 2 hours after fell asleep sitting upright for a few hours.

Day 2 - 7 PM - 27 hours after had a throbbing headache followed by aching legs and arms

Day 2 - 10 PM - 30 hours in, fluish. Funny he doesn’t look fluish. 

Day 2 - 11 PM - After a brief battle headache and flu stopped. 

Day 2 - 11 PM - Arm pain. This may just be my regular day to day pain. 

Day 3 - 1 PM - approaching the 48 hour mark and eyelids feel very heavy. 

Strength in arm is okay with 2nd.  No extreme weakness like first dose.

A day after the vaccine I was definitely falling asleep during the daytime more frequently.  The off times were more pronounced, 30 to 60 minutes after taking PD med, it hit me like a boomerang. The stiffness and freezing was extreme. I tried reducing the medication and it seems to have helped the extreme off times for a while.  

Since my experience, I have read stories of others with a similar response to the vaccine. Any PD experts tracking this data to see if there are side effects from COVID-19 vaccine that changes effectiveness of levadopa/carbadopa?  It would be a nice project for a medical professional to start.

Since March, when I got the vaccine, I've also been having extreme anxiety, mostly when I wake up but also associated with the mediation off times and my vision is blurred.

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Medication Off Times

I'm told I am lucky to respond to Sinemet and have been taking it since 2012.  The bad part is the medicine is only effective for 3 hours, and then it wears off pretty quickly. I've tried extended release and am currently taking Rytary which is supposedly longer lasting with a mellow wear off but it only lasts 3 hours and wears off quickly too.

---

The time while meds aren't working is called the "Off Time." For me this involves stiffness, neck and shoulder pain, lower back pain and a bit of anxiety.  I've described my "off time" as walking in a swimming pool, when I try to move my legs or arms there is a lot of resistance. Oh, it's not relaxing like lounging in a pool.

Tell your movement disorder specialist if you're having off times. Keep a log of when they occur and for how long. 

Your doctor may change doesages or the timing.

There are other options too. Injections, pumps and brain surgery. My doctor thinks I'd be a good candidates for deep brain stimulation (DBS). DBS is a type of surgery in which a device is implanted in the brain to deliver electrical pulses and decrease the motor symptoms of PD.
Everyone responds differently to the various PD treatments. There is no one solution that works for everyone. As PD progresses, your doctor will adjust meds and treatment options.

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Traveling with PD

My wife planned a great trip which involved three countries, trains and planes. She built in down time for my rest. So now it's the big day, we're off to the airport. I've got this. I can do it.
So away we go. Trip of a lifetime. Planning for months.

On the first night of our 3 week trip I have a meltdown and ruined the trip. After the fact I realized I was feeling like felt prior to beginning the PD medication. Angry, screaming and obsessing. I also appeard to be disinterested (masking) in things.

I remained this way for the first 10 days (through two countries) and when I got off the train in country #3, I felt my meds suddenly kicked in. Releasing an unrealized grip on me. 

Whatever was going on had stopped and I felt okay again. Two weeks to adjust after a 7 hour flight? Jetlag was the official diagnosis.

So here are some recommendations to help reduce your own travel stress:

• Take direct flights if possible
  • Less stress, quicker, better to sleep on the flight
• Get an aisle seat on the plan for those urgency times
  • Be sure to drink fluids and walk around while on the plane - yes it will make you pee that's why an aisle seat is good.
• Keep at least one day's dosage of medication in your pocket or purse.
• Carry all of your medications with you while traveling, just incase your luggage is lost or delayed.
• Pack enough medications to last the entire trip plus enough for an extra week, just in case.
• I switch my medication times to local times but check with your doctor for professional advice.
• Make sure all medications are labeled and in their original labeled containers.
• Write down the names of your doctors, insurance company (better yet copy your insurance card, front and back), emergency contact, and medications. Keep with your passport, in your wallet or purse.
• Get a doctor's note explaining your diagnosis and the medications traveling with you.
  • Just in the event you get questioned about all those meds
• Carry identification stating that you have Parkinson's disease.
• Use a "fanny" pack or backpack so that you have your hands free to balance as you walk, especially if walking any distance.
• Pack snacks and carry a water bottle to take medications.
• Plan to do nothing your first day
  • Going out the day you arrive in a crowded, strange city that speaks a foreign language can turn a "simple" task into a stressful ordeal, leaving you exhausted, dehydrated and starving.
• Plan downtime during the trip too. Relax and do nothing. Even little things can become a big thing in a foreign land. This may be hard for the "Type A" traveler.

Medications in pill or other solid form must undergo security screening. It is recommended that medication be clearly labeled to facilitate the screening process. Check with state and country laws regarding prescription medication labels.

You are responsible for displaying, handling, and repacking the medication when screening is required. Medication can undergo a visual or X-ray screening and may be tested for traces of explosives.

The Transportation Security Administration (TSA) set up the TSA Cares helpline to provide travelers with disabilities, medical conditions and other special circumstances additional assistance during the security screening process. Call 72 hours prior to traveling with questions about screening policies, procedures and what to expect at the security checkpoint.
Go and enjoy!

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Getting the diagnosis

Years before the movement issues, my symptoms started before anyone would think I might have Parkinson’s Disease (PD). One non-motor symptom at a time. Never connecting the dots. Loss of smell. Constipation. Paranoia. Disproportionate Anger (rage). Choking. 

Then suddenly I went from easy going, "ready to go anywhere" to having anxiety over the weirdest things. It's when acorns started piling up on my front walk that several people told me I was nuts. I saw a few psychiatrists and therapists. These specialists have a well earned stereotype of attracting the crazy people into the field of psychiatry and psychology. My favorite treatment was from a therapist who moaned on in my sessions that she had to get over issues too, she was too short to be a super model. And her solution to my panic attacks was to snap a rubber band on my wrist. That's all. If I get a panic attack, just snap the rubber band and like shout the preacher in Alabama, "anxiety be gone!" By the way the rubber band idea didn't work. The anxiety was connected to a lack of dopamine. There really is a long list of common symptoms for PD each on their own could be many things. 

If you’re new to the PD world, here are just a few non-motor symptoms associated with PD:

• Mood disorders (depression, anxiety and irritability)
• Cognitive changes (problems with focused attention and planning, slowing of thought, language and memory difficulties, personality changes, dementia)
• Hallucinations and delusions 
• Orthostatic hypotension (a drop in blood pressure when standing, light-headedness) 
• Sleep disorders (insomnia, excessive daytime sleepiness, vivid dreams, talking and moving during sleep, restless legs syndrome) 
• Constipation 
• Pain 
• Fatigue 
• Vision problems 
• Excessive sweating 
• Dandruff (seborrhea dermatitis) or oily skin 
• Urinary urgency (frequency and incontinence) 
• Loss of sense of smell 
• Sexual problems 
• Weight (loss or gain) 
• Impulsive control disorders (binge eating, excessive shopping or gambling) 
• Soft voice 
• Masking (no facial expression) 
• Drooling or excessive saliva 
• Speech 
• Small handwriting
• Choking 
• Swallowing problems

The non-motor symptoms have a long lead in time, at least a decade before classic motor related symptoms appear.

In 2012 things got really bad. The motor symptoms began. I was shuffling my feet. I had extreme stiffness in my neck and shoulders. I couldn't walk two blocks without stopping to rest my back.

My wonderful wife and my primary care doctor did the detective work.  They put everything together, all the symptoms and insist I see a neurologist.  By the way, my wife also found the primary care doc! I am lucky, she not so lucky. A PD caregiver's life is no picnic.

The neurologist ran some motor tests but the real test was when the doctor prescribed a trial of Sinemet (Carbidopa-Levodopa), my symptoms were better right after taking this med, the neurologist diagnosed it as Parkinson’s.

PD or Young Onset Parkinson’s Disease (YOPD) which is the label I was given because the diagnosis was before 50 years old, affects everyone differently. You may or may not get tremors. You may or may not have a slow gait. Etc. It’s all so variable. 

Find a movement disorder specialist (a neurologist who has a specialty in treating PD) that you like, don’t worry about switching doctors. My first movement specialist wasn't the greatest match, the second guy was great and stuck with him for a few years. At a seminar on PD treatment options I met a cool young doctor and made an appointment to see him. I am glad I checked out my options because he's great and I feel very comfortable with him. 

Note that it’s not uncommon to change your PD doctor a few times.

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