What is the longest you have ever went between your Parkinson's meds and still were able to function normally?

[Darkflower]

I have went over 8 hrs between Rytary dosages and was able to function like I used to before my PD diagnosis. This is a rare occasion but it has happened more than once and I have been diagnosed with PD for almost 17 years. It made me question whether I am diagnosed right or not but my Dr. says it is possible and didn't seem surprised. Has anyone else experienced this?

[aspergerian]

Excellent question!

[Kwinholt]

That’s amazing . I’ve gotten maybe 2 hours out and then dystonia takes over. One occasion I was thinking I was all that and had went to the gym , and had forgotten to replenish my cd/ld in my gym bag , thought I would stop at the store on the way home , I’ll be fine right? My body froze and was stuck on the soup isle . I can laugh now about it but I stood there for a bit and took deep breaths and limped out. I’ve been diagnosed for 5 years. Maybe you don’t need as much meds as previously thought . Awesome . Karen

[Darkflower in reply to Kwinholt]

No my meds are starting to not work as well and I am having more and more difficulties with my tremors and "off" periods. My normal range is about 4 hrs and then I start to shut down. Every so often I can go 7 hrs like normal. I didn't think this was even possible when you have had PD for as long as I have (17 years).

[Darkflower in reply to Kwinholt]

What do u do when you have Dystonia? and what causes your Dystonia? How severe are your episodes? I heard it was a side effect of the PD meds. I ask because I am struggling with what i think is Dystonia and I think my meds and anxiety make it all worse sometimes. I am sorry to hear you have to deal with Dystonia..... it is truly awful. Thanks Kwinholt for your responses.

[Kwinholt in reply to Darkflower]

Hi there, dystonia is not caused by the meds but dyskenisia is. Dystonia is part of the disease , freezing of the muscles and twisting of the muscles . The Cd/ld is what helps the dystonia . As long as I take me meds on schedule I can keep the freezing away. My first symptoms was the dystonia not a tremor. Karen

[Sunnysky]

Hi Darkflower interested in the length of time you've had PD it's been 14 years since I was DX Are you still able to function normally while on meds or are your symtoms and times off getting longer I've been good until a few months ago when Dystonia set in and some freezing scary stuff !

Keep positive Sunnysky

[Darkflower in reply to Sunnysky]

I have been diagnosed 17 years in December. My "off" times and problems have gotten drastically worse this past year.

[johntPM]

I'm 13 years post diagnosis. My daily PD meds are: 5x75mg Stalevo; 1mg rasagiline; 8mg ropinirole CR. I don't take my meds to a fixed schedule. I take them when I feel I'm about a hour away from needing them. If I don't need them, I don't take them. So, if I don't have a social event in the evening, I might take my last pill around about 1700. I get up in the morning feeling good, so I might not take my first pill until 1000. I do a lot of walking. This has been problem free in the past, but now I have dystonia causing poor posture. I have no dyskinesia.

John

[Darkflower]

Everyone mentions Dystonia. What is your definition of what Dystonia is exactly? Because I am sure I have it but may have it confused with other symptoms. My feet curl, I freeze up and my body twists in irregular positions, my head and neck even bend backwards until it starts popping. It is very painful. I have to take more Rytary or a shot of Apokyn to release my frozen muscle state. Is this Dystonia or something else? Any info would be greatly appreciated.

[Hidden in reply to Darkflower]

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[Kwinholt in reply to Hidden]

I don’t think it’s a scam and it has been amazing for some PWP but it didn’t work for me , it made me worse. I am all for alternatives for everyone . But as everyone says all of our journeys are different . Karen

[Kwinholt]

Hi there, yes that is dystonia . I even have where my Parkinson’s side of my face will freeze too. Looks like I’ve had a stroke if I let it get to that point, as soon as I take my meds within 15-20 minutes it relaxes back to normal . Karen

[Parkit]

I have PD (stiff & stinging pain left arm, hand & toes). I have control of these symptoms taking Rytari 95/195 4 capsules @ 7am, 11am, 3pm & 7pm. (8 hours between 8pm & 7am),

but this product is a sustained capsule (less peaks & valleys than regular release or ER products.

Find someone who is raking the same product as you for a better estimate

[Parkit in reply to Parkit]

have PD (stiff & stinging pain left arm, hand & toes). I have control of these symptoms taking Rytari 95/195 4 capsules @ 7am, 11am, 3pm & 7pm. (8 hours between 8pm & 7am),

but this product is a sustained capsule (less peaks & valleys than regular release or ER products.

Find someone who is raking the same product as you for a better estimate

[PamelaLynn in reply to Parkit]

There are 11 hours between 8 pm and 7 am. Is that what you meant to say?

[Parkit]

Also, remember that PD has unpredictable symptomology & I have seen significant

variation, even though I use the Ryari. And the Rytari is very expensive compared to the generic products