Lou Hevly

I’ve been taking 7-10 grams a day (weight: 160, height 5’11) for about a month. One of my symptoms, cog-wheeling in my left shoulder, and associated discomfort when reaching up and out for something, or when flapping out a sheet when making the bed, seems to be less annoying than usual. I dissolve it in a glass of kombucha; perhaps  if I took it…[Read more]

What Andrew L. said. If your body is producing enough dopamine, then you don’t have PD; if it isn’t, you do and you’ll have symptoms, which can be varying degrees of tolerable. In my case, it’s Restless Leg Symptom, which would be hell without Sinemet and Mirapexin. However, “when you’ve seen one case of PD, you’ve seen one case of PD”: you may be…[Read more]

Hola Argya:
Welcome to the list!
Wow, twenty-one is really young for the onset of Parkinson’s. But everybody’s different and you may be lucky and have minor symptoms for a long time. One thing for sure is that there are no two cases completely alike.

Michael J Fox had relatively early onset, I think in his late twenties, and he still has a very…[Read more]

@frances: Only 200mg? All the suplements I’ve found on Amazon are in the 400-1200mg range.

I take Azilect 1g daily along with Sinemet 3 x daily in the hope that it will delay the need to increase the Sinemet dosis in the future. I haven’t tried leaving off the Azilect to see how much worse it might get because I’m still experimenting to see whether an increase in magnesium intake –via almonds, cashews, peanuts and spinach– will…[Read more]

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.