Lou Hevly

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.

When anyone tells me I’m “looking good” I respond, “That’s cause I’ve got my clothes on”.

Hi Jean, I’m doing all right, and I sure hope you can say the same. I had polymyalgia for two years in 2011-2012 and still have a little neck and shoulder stiffness. I thought these were hangovers from the PMR, but maybe they’re another Parkinson contribution to my “well-being”.

Anosmie (lack of sense of smell), 12 years ago. Mild kinetic tremor (tremor when lifting or manipulating something) 6 years ago.

I mention it because I sometimes get a spaced out look during class and I didn’t want my students thinking I was getting bored!

Yes, but I don’t connect PD with it yet. It’s more like philosophic speculation, especially the question of whether anything we do has any bearing on what, if anything, comes next.

Can’t complain, or I’m fine.

I see my neurologist twice a year. But at the moment my symptoms are stable, so there really isn’t much reason to see him. Also, once when I wanted to change my meds, I carefully explained why in an email and he made the prescription change for me.

😉
I was taught never to talk with my mouth full, but if I want to get a word in edgewise in this country (Catalonia) I have to grab any opportunity. So I used to be pretty good at it, but now with PD I’ve had to give it up.

Yes, I drool. And my mouth hangs open when I observe anything interesting for very long.

Hi Avril, what you’re experiencing with the effectiveness of Parkinson medications is normal. Every case is different and even the best doctors can only prescribe for patients on a trial and error basis.

Sinemet is the “gold standard” of Parkinson’s treatment. The normal beginning dosage is a tablet (25/100) 3 times a day. What are the main…[Read more]