My Parkinson's life is so confusing - this is not easy.

Posted by johnnyvsn @johnnyvsn, Oct 27, 2024

I was officially diagnosed with Parkinson's May of 2019. I have been taking Rytary since diagnosis and can say it really does help me feel "normal", but just for windows of time. Sometimes the windows lasts a very short time, sometimes longer. I am not as sharp minded as I used to be. I just don't understand how my body can feel so bad a lot of the time, then feel normal at other times. Does anyone else struggle with accepting this as just the normal life of a Parkinson's sufferer?

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

lilomen1 | @lilomen1 | Mar 21 8:37am

In reply to @lisalucier "Hi, @lilomen1 - wondering how it's going since you've been off the immediate release carbidopa and..." + (show)

Thank you for asking, Lisa.
I actually, feel like myself again. I will see my doctor next month.

Lisa Lucier, Moderator | @lisalucier | Mar 20 8:45pm

In reply to @lilomen1 "I’ve been taking Rytary for three months and it’s completely changed my mood and sleeping patterns,..." + (show)

Hi, @lilomen1 - wondering how it's going since you've been off the immediate release carbidopa and levodopa (Rytary)?

bruizersmom | @bruizersmom | Mar 20 8:31pm

Parkinson's diagnosed in 2021....symptoms since the 70's. Symptoms have come and gone over the years, with stress being a huge factor in the recurrence of symptoms. When diagnosed, I was put on Carbidopa/Levidopa and got relief from the movement disorders of PD. Now I'm adding Lamictal. At a low dose, it's to smooth out mood swings and thereby lessen stress and anxiety. And I'll be starting medical marijuana in a few weeks for pain, stress, ability to fall asleep faster and deeper, and a lot more. After talking to a Pharmacist at a med. Marijuana dispensary, I'm quite sure it's going to straighten out a bunch of my problems as well.
Definitely talk to your PD neurologist about the Rytary (like do you have 24-hour coverage - my Cd/Ld regimen is very time-specific, and I take a double-strength extended release for my bed-time dose. Does Rytary do that? And if your Doc hedges on a straight answer, it's time for a new doctor!

adrienne625 | @adrienne625 | Mar 17 8:44am

In reply to @hopeful33250 "Hello @lilomen1 and welcome to the Parkinson's support group on Mayo Connect. Is Parkinson's a new..." + (show)

I’m so sorry your mood and ability to sleep well have been affected by your current prescription. I was just diagnosed 2 weeks ago. My doctor gave me Cardidopa-Levodopa. It has brightened my mood and I sleep well. Wishing you well.

Teresa, Volunteer Mentor | @hopeful33250 | Mar 11 7:50pm

In reply to @lilomen1 "I’ve been taking Rytary for three months and it’s completely changed my mood and sleeping patterns,..." + (show)

Hello @lilomen1 and welcome to the Parkinson's support group on Mayo Connect. Is Parkinson's a new diagnosis for you? Did you try other meds before taking Rytary? There are many medications that can be used to treat the symptoms of Parkinson's. Not all have the same side effects that you mentioned. Here is a list from the drugs.com website that lists some of these medications,
https://www.drugs.com/condition/parkinson-s-disease.html
If Rytary is causing side effects, I would encourage you to talk with your doctor about an alternative medication. As it is best not to quit any medication without consulting with your physician, I would encourage you to discuss these side effects with your neurologist as soon as possible.

Please share, as you are comfortable doing so, about the most troubling symptoms you are experiencing with your Parkinson's diagnosis. I look forward to hearing from you again.

Lisa Lucier, Moderator | @lisalucier | Mar 11 4:54pm

In reply to @lilomen1 "I’ve been taking Rytary for three months and it’s completely changed my mood and sleeping patterns,..." + (show)

Hi, @lilomen1 - welcome to Mayo Clinic Connect. Sorry you've had to deal with Rytary affecting your mood and sleep patterns.

Did you get a chance to talk to your prescribing doctor about your side effects or perhaps changing to a different medication? If so, wondering what the doctor said. Did the doctor suggest a tapering plan for your Rytary?

lilomen1 | @lilomen1 | Mar 11 1:00pm

I’ve been taking Rytary for three months and it’s completely changed my mood and sleeping patterns, which are some of the side effects of the medication.

Yesterday, I stopped taking it on my husband suggestion. Anybody has experienced these issues?

I am not sure if there are other holistic treatments out there.

Lisa Lucier, Moderator | @lisalucier | Jan 29 3:17pm

In reply to @sillyblone "Hello. How are you doing?" + (show)

Hi. @sillyblone - how are you? Wondering if you were asking how @johnnyvsn was doing, or another member in this discussion on PD life being confusing?

sillyblone | @sillyblone | Jan 28 4:19pm

Hello. How are you doing?

Teresa, Volunteer Mentor | @hopeful33250 | Jan 28 6:05am

In reply to @joywin "I was diagnosed with PD in 2012. Managed it OK until last year when it has..." + (show)

I'm sorry to hear that your journey with PD has become more difficult, @joywin. If you are comfortable doing so, please share what symptoms have become most bothersome. Is it tremors, walking, balance, etc.?

Have changes in PD medications been tried? What about physical therapy?

I look forward to hearing from you. Will you post again?