Lou Hevly

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]

Exercise and movement are, as far as I’ve read, virtually the only thing *everybody* agrees has a positive effect on Parkinson’s symptoms. Which is kind of a “duhhh”, since exercise and movement are good for everybody.

I walk a lot, climb five floors 2 stairs at a time at least three times a day, and do 3 or 4 1/2 hour yoga sessions per week. And…[Read more]

https://www.ncbi.nlm.nih.gov/m/pubmed/29307281spl

Intermittent fasting protects against the deterioration of cognitive function, energy metabolism and dyslipidemia in Alzheimer’s disease-induced estrogen deficient rats

Hi Cathy:

I believe I’ve read that the carbidopa was added to the levodopa in Sinemet precisely to help prevent nausea. Ask your neurologist about this, but instead of 25/100 carbidopa/levodopoa, take an additional carbidopa suplement so it will be, in effect, 50/100 carbidopa/levodopoa. Remember, I’m no neurologist and there might be very good…[Read more]

My GP kids me that I know more about Parkinson’s than she does.

I’ve spent hours researching the three main branches of medication for Parkinson’s: levodopa, agonists and Mao-B inhibitors.

My neurologist answers emails and will change my prescription for me if I give him a rational explanation. An example is I asked him to add Mirapexin to my…[Read more]

Hi Cathy,

If you’re newly diagnosed, you might ask your neurologist about switching from levodopa to either an agonist (p.e., Mirapexin) or Mao-B inhibitor (p.e., Azilect).

Parkinson’s affects everbody differently (“When you’ve seen one case of Parkinson’s, you’ve seen one case of Parkinson’s”) and though it is a shame that your stomach and…[Read more]

It sometimes takes me a little longer than usual to button my left cuff button with my right (PD-impacted) hand. And like Bob, I’d rather do it myself.

In Manresa (50km NW of Barcelona) it stays in the 90s through most of July and August (the price we pay for lovely sunny winters), but it doesn’t have any affect on my main symptom, RLS.

I’ve always had some insomnia, but I think the PD makes it worse. My main problem is that I can’t find a comfortable position, and I think this uneasiness is PD-related, since I also have restless legs syndrome.

I go to bed around 1am and if I can’t get to sleep by 4-5am, I just get up, have breakfast and start my day. Around 7-8am I can…[Read more]

The Barcelona-Seattle time difference is nine hours, and my main idea is to not take a nap even though I’m feeling half groggy; not sleeping in also helps. Melatonin works for some people.

I moved to Catalonia in the late fall of 1981, so it has been a while. If you ever do make it out our way, we’ll be happy to give you some pointers.

Indeed, I have a wonderful caregiver, my wife, who just happens to be a nurse, though this is a two-edged sword, because she deals in her job with many people in the most extreme stages of PD and can’t help thinking I may end up like them. So I’m afraid my PD has upset her more than it has me.

I’ve been “fortunate” (of course, if I were truly…[Read more]

This is complex. First of all there is the trauma of learning you have an incurable, degenerative disease. Then after feeling sorry for yourself –and there’s nothing wrong with railing “Why me?” at the Universe a bit– you must start thinking of how this is going to affect your loved ones, whether spouse, children o close friends. Remember,…[Read more]

My job is teaching English, sitting in a room, 1-4 students at a time, zero stress. I love it and they’ll have to pull be out feet first; I wouldn’t retire if I won the lottery. I live in Catalonia, which has a very good healthcare system and subsidizes to a great extent the cost of prescription drugs. So in my case there has been no financial impact.

>> Does this information surprise you?

Not at all! 😉

I have had absolutely zero sense of smell for 10-12 years, at least 6 years before I was diagnosed with PD. I thought back then it was the result of a horrible cold.

I’m with your impractical side, my wife’s with your practical.