Sinnemet and protein

Today, for the first time, I experienced the effects of protein interference with L Dopa absorption. I usually make an effort to refrain from eating protein at least 30-45 minutes before or after I've taken Stalevo (L Dopa and carbidopa + entacapone), but today I was out and didn't pay attention to the timing. I ate an egg and then took my medication a few minutes later. About a half hour later I was shopping in the local bead store, holding a small basket in my right hand and became aware that my tremor was acting up and the basket was shaking in a very distracting way. I realized that it had been weeks since my tremor had been noticeable and wondered why it was a problem today, but I didn't put two and two together until a little later. I realized that I had not waited the requisite interval between eating protein and taking my medication. In the past I had been skeptical about the reports that protein was truly a problem, but here very clearly was the confirmation that in fact it was.

For those who don't know, Stalevo is a fairly new medication that is equivalent to Sinnemet (L Dopa and carbidopa) plus a 3rd ingredient called entacapone which is supposed to even out the on/off periods and make them less noticeable and problematic. "Entacapone is an inhibitor of catechol-O-methyltransferase (COMT). It is used in combination with levodopa and carbidopa (Sinemet) to treat the end-of-dose 'wearing-off' symptoms of Parkinson's disease. Entacapone helps the levodopa and carbidopa work better by allowing more of it to reach the brain..."

Stalevo is more expensive than Sinnemet and many doctors do not believe that the cost differential is worth the benefits to PD patients. I cannot give an opinion on the difference because I have never taken Sinnemet so have no comparison. Stalevo was recommended by the PD specialist, a neurologist, at NIH and by my own local neurologist. If I take it regularly it seems to work well and I have few on/off symptoms.

PD and me

So this is how my PD behaves.

Like an ambivalent friend or lover, it is unpredictable, unreliable and manipulative. Some days I cannot finish cooking dinner, standing at the sink or stove for more than a few minutes brings on excruciating back pain. And, sometimes, for an entire day or for only an hour, I feel as though I've run a marathon and "hit the wall". When that happens I am sometimes so exhausted that I feel as though the effort of pressing the gas pedal in the car during the drive home from work is an impossibility. One day I had to call my son to pick me up, I had gone for a walk and couldn't make it the last block to my front door. I sat down in the road to wait for him and cried. I had only walked to the post office, 3 blocks away.

And then there are days like today. The sun is shining on the remains of a record breaking snowfall and it is relatively warm at 45 degrees or so as I head out the front door for a walk. I remember to pocket my cell phone and let my son (different son) know that I might need him to come after me with the car. He laughs as though I've made a joke, but what he doesn't realize is that I wouldn't go for a walk without a backup plan. Today I don't need him, in fact my step is light and my arm swings freely (when I remind it to) and I even jog for short stretches of the route. I listen to Prairie Home Companion on my mp3 player and then a mix of my favorite tunes and by the time I round the last corner I'm practically dancing in the street to Aretha Franklin. Go figure! But, that's how my PD behaves and I don't like it but I've come to expect it. It helps, I've discovered the hard way, to take my medications absolutely on time or a bit early if I feel I'm in danger of forgetting altogether if I wait. I resisted hard and long taking L dopa until I felt that I couldn't wait any longer, walking into the office from the parking lot was difficult and I was getting a lot of questions about why I was limping, etc. I was in pain all the time. I am taking Stalevo now, with a little bit of Mirapex too, and I do feel much better. IF I take the doses on time, if I don't I will suffer.

Welcome to my world

When I was feeling more ambitious I designed a web site for women with Parkinson's Disease but it's been about a year and I still haven't published the site. Recently I decided that a blog was more manageable. Though I hate the idea of "what are you doing now?". As I am fond of opining, "don't people have better things to do?!". But, cynicism aside, I do think that people who share similar problems need to communicate with each other, or at least I feel that need. And why women?

Because ….When you’ve spent 16+ years out of the work force raising children and finally get back on a career track, and shortly thereafter find out you’ve got PD….you want to talk to other women.

Because …When you have children and can no longer do the fun things you used to do, the hiking, biking, running around, because your PD exhausts you and leaves you in pain all the time, how do you make them understand? You need a woman to talk to…

Because ….When you finally get the nerve to leave your unhappy marriage and find a new relationship, only to get a PD diagnosis one year later….you want a woman to cry with you.

Because ….When you have to give away your favorite shoes because your right foot drags and you trip over heels and walk out of slides and can’t find anything that will meet your physical as well as fashion needs, only a woman will understand.

Because ….When you’ve waited years to please yourself, your children came first, and finally the time arrives when you have some freedom, and you are handed a PD diagnosis…you want to talk to other women.

Because …..It’s hard enough to cope with natural aging changes, menopause, wrinkles, sagging, loss of ability…but add the symptoms of PD and it’s doubly hard to feel attractive and comfortable with your new self. Only a woman will understand how you feel.

Because…. in times of emotional pain we need to talk, or cry, or rant, or commiserate with our sisters.

Because….as important as a good cry is a good laugh, and who else but the company of women can deliver those goods?

So I hope not to bore you with too many unnecessary and uninteresting details. I would love to hear your story.

Until next time.