[boann]

if you are taking levodopa, how long had it been since onset before you started taking it?

if you aren't taking levodopa, how has it been since onset?

onset for me was 13 years ago and i am not taking levodopa - just trying to get a sense of whether that is unusual.

thanks,
boann

[paula_w]

boann[/quote]Hi boann,

I went 7 yrs after diagnosis and at least 10 from when first motor symptoms appeared. when I finally went on it, there was a hurricane, an evacuation, my neuro would not increase my requip [he was wrong not to i was under therapeutic dose,] and we were meeting mike at spin city in a couple days. then staying for the first unity walk i attended. i had never met a pwp in person before. met mike tbe first time i met anyone.

backing up, i stumbled into the doctor on monday, having survived a very near miss with the storm and on a pathetic dose of 2mg of requip after having diagnosed pd for 7 yrs and symptoms for 3 more. he gave me sinemet, i was sitting in the front row, receiving VIP treatment at Spin Citytaping two days later with brenda and Nan and breezed thru the walk, i have lots of good stories, perhaps will review them for use in the book.

anyway these authors have nailed it:ten years later -i am in paradise lost.

Melamed, Vol. 22, Suppl. 17, 2007, pp. S379–S384 © 2007 Movement Disorder Society

Management of Motor Complications in Advanced Parkinson’s Disease
(excerpt)


FEATURES OF MOTOR FLUCTUATIONS

Levodopa Honeymoon long over~

Paradise Lost

Daily motor activity and functional capability is now characterized and governed by remarkable shifts or fluctuations between “off” and “on” states. “Off” phases are defined as the states when the basic parkinsonian symptomatology takes over, sometimes in the form of a real crisis with severe slowness, rigidity, and tremor, leaving patients immobile and incapacitated. “On” periods are characterized by a beneficial effect of levodopa taking over with release from the parkinsonian signs, when patients can more or less perform. There are several commonly encountered subtypes of response fluctuations. (1) The “wearing off” phenonemon—this signifies shortening of the duration of clinical relief induced by the individual doses of levodopa. If at the initial phase following the termination of the “honeymoon” each dose may work for several3-5 hours later, there is a gradual and progressive shrinkage to 1 to 2 hours lasting benefit. (2) The “delayed on” phenomenon—this signifies increased latency periods from intake of an oral dose of levodopa to start up of a clinical benefit.8 If, initially when the patient first becomes a fluctuator, such latency may have been brief and ranged from 5 to 20 min, there is now a gradual and progressive increase in its duration. Patients may sometimes have to wait for as long as 30 min to 11⁄2 hours for an onset of an “on” phase and clinical relief. (3) The “no-on” phenomenon—this signifies occasional total failure of an oral dose of levodopa to induce an “on.”9 Such episodic unresponsiveness is often described by the patients as if the unsuccessful dose of levodopa has not been taken at all. It is more common after food and in the afternoon. (4) The “on-off” phenomenon—although initially this term was used to generally describe all the subtypes of motor fluctuations, it currently refers particularly to abrupt and mostly random and unpredictable loss of benefit, which occurs during a successful “on” phase. This may be characterized by a severe parkinsonian crisis associated with sympathetic overactivity, e.g., palpitations, hot flushes, sweating, and panic. Such an attack may last from minutes to hours and may subside spontaneously or only after intake of an additional dose of levodopa. [part of the state of being that sends me to the bad place - very familiar with little autonomic hell] performance of the patients is now dominated by swings between various “off” and “on” phases and response pattern may become completely chaotic and out of control. The effect of single doses of levodopa may vary from one dose to the other and from day to day. In most patients, the response to morning doses are somewhat better than to those taken in the second half of the day and particularly in the afternoons.

full article is on
http://www.movementdisordersjournal.com/
Melamed, Vol. 22, Suppl. 17, 2007, pp. S379–S384 © 2007 Movement Disorder Society

paula

[jeanb]

Boann,

I started on levodopa after about a year after dx - earlier than I'd wanted ... but requip made me nauseous, mirapex made me obsessive compulsive, there was no azilect at the time... so I started on Stalevo.

My most troubling symptom at the time was neuropathic pain -- I just wanted it to STOP. (and it did)

jean

[Deep Brain Diarist]

I was diagnosed in 2000 and started on Mirapex. But all that did was make me sleepy, so my neuro put me on lower doses of Sinemet later that year. I went off for several years when I started having minor dyskinesias and the actual PD symptoms didn't seem so bad that I wanted to endure the dks. Went back on in 2007, had DBS later that year.