I need some advise
 

I have another question. I have been diagnosed for about 4 years and my symptons are beginning to progress. Recently when getting up to walk, I feel like my legs won't bend at the knee and I feel like I am walking flat footed, stiff legged and fast. It doesn't happen every time , but is happening more frequently. Does this happen to anyone else?

MaryC
 

I have been diagnosed for 7 years, but my PD symptoms are still pretty mild. One of the things I do experience when my meds are running low (about the closest thing I have to an "off") is what I call my "shuffle step", more correctly, festination. This is most likely to happen early in the morning before meds take hold, or late in the afternoon when I forget my p.m. meds. It always responds to sinemet meds.
I take one-half a 25/100 sinemet generic at the same time as a 50/200 CR sinemet generic twice a day. If I am attentive to when I take them; first dose upon rising, second dose at 4-5 p.m.; I can usually avoid "Mr. Shuffles".
I also take 100mg amantadine in the a.m., and 300 mg CoQ10 three times a day (with meals). I am also a strong believer in dextromethorphan, of which I take 4-5 mg every night at bedtime. This is in the form of a pediatric over-the-counter cough medicine, Pedia Care, which contains 7.5 mg of the drug per 5 cc (one teaspoon). I take between one-half to two-thirds of a teaspoon of the cough syrup each night. I think it has something to do with the very slow progression (if any) that I am experiencing. It may be providing significant neuroprotection. I know others on this forum who are also taking either dextromethorphan at this low dose, or naltrexone, a similar drug. I am not recommending that anyone take either one, since it is my (our) own "white rat" adventure.
Can you share what meds, if any, you presently take?
Robert

I take 7 1/2 of .50 Mirapex daily and provigil to keep me awake during the day. My symptons have been fairly mild and my neurologist has been increasing my medicine very slowly. Do you think this is under medication? I'm due to see her in two weeks again. I see her every 3 months.

Have you tried Sinemet yet Mary?

Recognizing that my whole situation is not easily comparable to yours:
1. I was 63 when diagnosed, and from day 1 was prescribed sinemet by my neurologist to alleviate PD symptoms. At that time he also gave me the option of trying one of the dopamine analogs, but I chose to stay with sinemet because of its effectiveness in releiving both the motor and depressive symptoms I was dealing with.
2. I am being followed in an academic medical center by the head of the neurology department, who is very tolerant, even supportive of my experimental approaches to PD treatment.

Although the approach to initiating treatment in younger patients often emphasizes starting with agonists like Mirapex or Requip, the reason for this, that they may have neuroprotective effects Sinemet does not have, is not supported by current data. The goal of avoiding Sinemet as long as possible to stave off its eventual production of dyskinetic side effects may also be less valid than previously thought. If Sinemet treatment is carefully managed, some patients have successfully taken it for 10-20 years without developing significant diskinesia.

I have just turned 60 and yes, that is her reason for giving me Mirapex. She said when I reach the max on Mirapex, she will start adding other meds.

Like Robert, I get the same way when I'm going "off" and early in the morning. I feel like I have suction cups on me feet, and my right leg drags a little bit until I get going. I also have rather poor balance and my arms are really sore and tight. Once I've had my morning dose of Sinemet in me, my movements are pretty good. In fact I feel so good right now, that I have to keep reminding myself to take the mediation.

My neurologist put me on the Sinemet immediately, and we have finally worked up to my current levels. We tried Mirapex but it made me feel awful and didn't do a whole lot for me. At this point, I am on 6 Sinemet 25/100 regular, 1 Sinemet CR at night, along with 3 100 Mg Amantadine, and 1 Celexa daily.

Since I've started the CR, I've been sleeping pretty well, and my movement has been really great. I rarely have the tremors, and I'm back playing the piano again. It's like a nasty chapter has been closed in my life; almost like it never happened. I know this isn't going to last, but I'll sure enjoy this as long as it lasts.

I'll be 47 in May, by the way. I was diagnosed in November 2006 officially.

John