Lou Hevly

I hear you Toni! Very true, all you say. All I can say is hang in there, enjoy to the utmost everything positive in your life.

Hi Toni,
You don’t mention what meds you’re taking, but the agonists (ropinirole, pramipexole, etc.) are famous for provoking compulsive behavior (shopping, gambling, sex, etc.). Even sinemet or its generic equivalents can have this effect. I’m no neurologist, but from what I’ve read, dopamine is a motivational component of reward-motivated…[Read more]

Dear Jean:

First of all, you will be sorely missed, but life goes on and we have to accept that most good things come to an end. I’m glad to hear you’ll be continuing Slow is the New Fast and I still think you should find a publisher for the whole series. It’s the best real, up front and honest description of someone who suffers “hard-core”…[Read more]

Dear Maria,

I think there are people, and then again, there are people (See? I’m a truly profound thinker!). Some are really concerned, especially if they’ve just learned you’ve got PD and others are just going through the motions. And it’s hard to really tell who’s who. But as it is for the shepherd, for us it’s worth trying to separate the…[Read more]

Dr Dale Bredesen, in his book “The End of Alzheimer’s, writes:
«Vitamins B6, B12, and Folate
Keeping your homocysteine optimally low requires sufficient levels of vitamins B6, B9 (folate), and B12, all in their active forms. Pyridoxal-5-phosphate (P5P) is the active form of vitamin B6, methylcobalamin is an active form of vitamin B12, and…[Read more]

Hi Joe,
Welcome to the forum.
I played music semi-professionally until I was in my 40’s and kept it up as a hobby until I got Parkinson’s at around 65 (I’m now 70). The bad news is that I pretty much had to give up playing my instruments, the acoustic guitar and the clarinet, because 1) my coordination was just that little bit off that made…[Read more]

Hi Maria:
I’m 70 and was diagnosed with PD 4 1/2 years ago. Most of my symptoms are mild, but my Restless Legs Syndrome gets really bad if I don’t take meds. I have sporadic periods of insomnia, occasionally staying awake all night. Lately I’ve been sleeping better, perhaps due to a med schedule change. Specifically:
6-8am 1/2mg Sinemet, 0.26mg…[Read more]

I try to do 30 minutes of yoga every day, but generally manage only 3-4 times a week. It’s mostly work on flexibility and balance. I also have a stationary bike and I put the control at the greatest resistance and pedal as hard as I can for as long as I can, usually 2 minutes. It’s great for relieving the symptoms of Restless Legs Syndrome.

The conventional thinking is that the levodopa “competes” with other proteins when penetrating into the bloodstream. Therefore they say to take it at least ten or twenty minutes before ingesting food so it enters the blood more readily. I try to remember to take it before meals, but sometimes I forget and take it after and it doesn’t seem to make…[Read more]

No, but I try to take the sinemet before meals, because its absorption through the intestins can be slowed by the presence of high protein food.

I take meds according to schedule (sinemet at 08’00, 15’00 and 21’00; Azilecte and Mirapexin at 15’00). Sometimes I’m experiencing symptoms at these times and sometimes not, so it’s not really a question of when they kick in.

BTW, I’ve discovered that, at least for me, it’s not good to take Mirapexin (pramipexol) in the evening because it worsens…[Read more]

I’m fortunate in that both my GP and neurologist encourage me to find out as much as I can about the disease and welcome any questions I may have. One example is that I was having trouble with Restless Legs Syndrome and, from what I had read online, it seemed that pramipexol (Mirapexin) might be helpful. I emailed this request to my neurologist…[Read more]

The usual dosage is 3 x daily; my neurologist said that this is to keep the level of dopamine in the blood as constant as possible.

I take 1mg Azilect daily and am not sure if it does any good or not. I’d have to stop taking it to know. I’m hoping it will work to keep the amount of levodopa I need at a low level

The tests that purportedly evaluate its neuro-protective qualities depend on the Unified Parkinson’s Disease Rating Scale (UPDRS), which is a self-reporting survey…[Read more]

Hi Andrew,
A couple days ago a friend recomended 3mg melatonin half an hour before bedtime, then 1 mg Noctamid (Lormetazepam) just before bed. I’ve only tried it once, but I got a good night’s sleep. I don’t want to make it a habit, but the next time a try it I’ll post the results.

Hi Barbara:
RLS is my main symptom and I have found Mirapexin (pramipexole) to be effective, 1 0.26mg tablet per day, though a side effect is mild edema. I’m also taking sinemet 25/100 3 x daily and 1mg Azilecte 1mg daily, but I think the Mirapexin is what gives the most relief. Magnesium also seemed to help but it gives me the runs. This is true…[Read more]

Thanks Jean, I could use them!

I have been on sinemet for about 3 years, 25/100 3 tabs per day. No negative side effects.

Fortuantely I’m happily married and my job consists of climbing up one flight of stairs to my office where very friendly Catalan people come to practice their English. In other words, no stress. However, either the PD itself, or the meds I’m taking or simply my own personal genetic makeup have lately been causing me serious insomnia, and my RLS…[Read more]

Hi again Jean,

Maybe someone’s monitoring this forum; I’ve just received an email from a Neurology Research Assistant at Bastyr University thanking me for my participation in the CAM Care in PD survey and inviting me to do the 24-hour food recall survey, which I just took.