3 ways I respond to Parkinson’s ‘off periods’
My strategy is to hydrate, medicate, and meditate
One common but frustrating symptom of Parkinson’s disease is what’s known as “off periods.” These happen when medication, such as Sinemet (carbidopa and levodopa), wear off — sometimes suddenly — and other Parkinson’s symptoms that had been under control show up again or get worse. During off periods, you may notice that your tremors worsen, your speech becomes slurred, or your gait may be off-kilter.
Off periods can occur when, over time, your body grows accustomed to the medication you are taking and stops responding to it effectively. They can also happen randomly and with little rhyme or reason, making them difficult to respond to. When these off periods happen to me, I go through my off period strategy checklist, which is to hydrate, medicate, and meditate, or “HMM” for short.
Hydrate
Hydration is key for Parkinson’s patients. It keeps medication flowing through the system, keeps joints moving, flushes toxins out of the body, and helps to reduce drug side effects like swollen feet. I’ve always been a fan of hydration, but I find it particularly important in helping me to control my Parkinson’s.
The other day, I was folding some laundry and felt an off period coming on. My hands were getting shaky and my body felt stiff. My mind was a little cloudy. The first thing I did was think about what I drank that morning. I realized that after the 8 ounces of water I drank with my morning pills, all I’d had was a cup of coffee. It was 11 a.m., and I knew my first line of defense was to drink some water. Sixteen ounces later, I was already perking up.
Medicate
Sometimes, when I feel an off period coming on, I realize it’s because I missed a dose of medication. Nearly 12 years after my diagnosis, I’ve gotten pretty good about remembering my meds, but it still happens. So, after I check my hydration, I make sure I’m on schedule with my meds. Phone alarms and apps can help. Keeping up your medication schedule is critical to holding symptoms at bay.
I’ve also spoken to my doctor, who has permitted me to take a small, as-needed dose when I have an off period and my scheduled meds aren’t taking care of it. You can discuss this option with your own doctor. Many researchers and clinical trials are also looking at multiple drugs and other therapies for Parkinson’s disease, including what’s known as “rescue” drugs, which are fast-acting oral or nasal medications that can help quickly turn a bad off period back on.
Meditate
I’m not a meditation coach or yoga guru, and I’m sure I meditate wrong. But I’ve found something simple that works for me: I find a quiet space where I can lie down or sit comfortably with my feet flat on the floor. I rest my hands on my lap and count slowly to 100, trying to focus on each number. I acknowledge when a thought breaks in and let it go.
I try to breathe deeply and calmly and quiet my mind. There are many classes, apps, books, and experts on meditation out there. But if you can find a method to calm your mind and let the hydration and medication settle in, you may feel much better. It might not cure an off period, but I find that calming myself can help get me through it.
Parkinson’s is a tricky opponent. It changes tactics and doesn’t follow rules. Off periods, which can be incredibly frustrating for both patients and caregivers, are part of the journey. I know they are for me. Hopefully, some of my strategies for dealing with off periods can help you, too.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Ana Maria Tamayo
Dear Mollie, Thanks so much for you note. Ray my partner is living with pd since 2011 and now he is experiencing off periods very frecuently. I will print your note and read it together and share it with our support group for people with pd and loved ones, here in Perú.
Rob Mottram
Couldn't be more timely! As I write, I'm having possibly the worst 'off' day so far on my 12-year PD journey. Mollie's post couldn't be more timely as a reminder of... well, things I know to do but somehow forget to do. Simple but hugely effective. Thank you, Mollie!
Vickie Lynn Gates
Welcome
Marilyn Kay Kopp
Thank you so much for the info on Off Periods of Parkinsons. This will allow me to share this info with my husband who has had Parkinsons for years however not diagnosed until 2022. The hydration and meditation tools had not been something that was discussed with us before. This will now be a BIG part of our coping and understanding what Off Periods are. THANK YOU!
Colleen K. McGuire
Thank you for these ideas! I am terrible about remembering my meds. which frustrates my doctor (and me) because then I pay dearly!
Ted Stumpp
Great article - I have also identified the reason for my off periods by keeping a detailed daily journal including sleep hours, quality of sleep, pain levels when awakening in the morning, and throughout the day, foods consumed, caffeine intake, hours of exercise, type of exercise, naps, BM, etc and I was able to identify patterns to help reduce the amount and frequency of my off times and pain.
John V. Waltz
Ms. Lombardi
I have been diagnosed with MSA & read this page whenever it pops up on my computer.
While I appreciate your comments I Must fall back on what I believe & that is that Yahweh/Jehovah/God is in control & Any human given advice e.g. should be discounted-discouraged. Meditate, focus on our LORD - ONLY.
John V. Waltz
John Ellwood
Hi Mollie,
Tell me about DBS, I have never heard of that?
Thanks,
John
Joanne Eckert
I never hear anything about parents caring for a child with Parkinson’s. My son was married and he & his wife have 5 children together. My son, Jonathan, was diagnosed with Parkinson’s about 9 years ago at the age of 41. His wife told me she was divorcing him because ‘she wants to have a happy life.” I told her I also want her to have a happy life, but WITH my son”. so my husband and I took my son down here to NY to be with us. I am 74 and my wonderful husband is 83. It’s the most scariest & loving job at the same time. We rely on God to help us every day to get through our own health issues but my son needs friends his age to visit him. As for us, we need rest and a small social life. Right now my husband & I both have colds, which makes it even more difficult., It’s a lot pulling him up from the bed, couch and also from the bathroom. Sometimes this goes on 4 to 9 times a night. We are so very worn out. Any suggestions?
Jana S Owen
Our 3 things we do to help my husband through his off periods include:
1. Taking Mucuna to supplement his C/L. It stretches it out longer as it is natural C/L. As it is a food, you are not limited as to how much can be taken however, he only needs 1.[er med time and he takes one over night too.
2. He uses B! Therapy. Book by Daphine Bryan PhD. This has been a GODSend. It has lessened his symptoms considerably. Huge improvement.
3. He began using Balance of Nature. No more staying more in the bed than out. He has energy he did not have before. Able to have a regular day.
Kathleen Karafonda
well written paper!!!!