What is adaptation anyway?
Without using the word, 2 of our last posts were about adapting to Parkinson’s. Welcome to Holland is about trying to see Parkinson’s as just another destination, an adaptation of perception and perhaps attitude. Parkinson and protein is about adapting to our medication and it’s relation to protein. In turn this requires an adaptation of not only meals themselves but also of those around us, including spouses, partners, children, friends, coworkers, etc.
When I tried to find a smooth definition of adapting I came across this one: Adaptation is the action or process of adapting or being adapted. Hope you like this; I don’t. I would call this a circular definition. Perhaps it might be easier to find a synonym! Some that come to mind are alteration, modification, change and adjustment. Personally I prefer adapt over adjust, it just seems more active and more alive. In my mind, the more control I have, the better it is, keeping in mind that us Parkies are continually changing and adapting our “doing” and our “being”. Of course everyone else is busy adapting as well, it’s not limited to people with Parkinson’s or even people with disabilities. If I write as if Parkinson’s is the only group to experience certain things, just forgive me be, if I do it periodically please let me know because that’s exactly what I don’t want to do. Of course a lot of adaptation happens “automatically” by our brain and body. For example when I’m in an off period, my feet change the way I walk. I have a pronounced “shuffle” and it feels like I’m dragging my leg. I can only override that, perhaps by making larger steps, to a point. On the other hand we can choose some adaptations that will make our lives better, easier, more satisfying or healthier.
Plan for next few weeks.
Over the next few weeks I hope to think a bit about “things” that help us adapt, how our own body adapts, social adaptation, work related adaptation. and perhaps some other ones as well.
I have been a fan of the human ability to adapt for a long time. There is a lot of extra capacity in our very bodies, and especially our brain. I believe this is sometimes called redundancy. For example, the dopamine producing brain cells that are 70% gone before symptoms are noticed. We must have had millions or billions of these cells; extra,extra. Same with blood and oxygen, we can lose a certain amount of blood and still function; we can have less oxygen and still carry on our daily lives. Of course there is a limit, after which we better get some help. Hopefully researchers can use this kind of information in their work to cure or prevent Parkinson’s disease and the many other diseases and conditions that plague us. I just know there is much capacity in our bodies and various bodily systems. We can bring this to bear on carrying on a normal or near-normal life even if we are unable to do certain things. All I’m trying to say is don’t give up, keep going, there is a lot of gas left in the tank. We have been given hidden treasures. This is not to say it’s always easy.
This afternoon I was going to put up some flycatchers by our back door. One thumbnail sticks them to the wooden ceiling. I’ve been doing this for over 30 years. Today I got the step stool out (2 steps, big horizontal platform-safe as can be), stood on it with the flycatcher in my hand. I couldn’t get it put into place. Between my eyes and poor eye-hand coordination it just didn’t want to work. Tried a different one. No luck. Frustrating. Eventually I figured it was not so important, instead of adapting the task I guess I adapted the way I perceived it. Just to close with an adaptation of an old joke: how many counsellors (disclosure: that includes me) does it take to put up a fly catcher? Just 1 as long as the flycatcher wants to be put up. Today it did not want to. Tomorrow is another day, I’m sure someone will come around to put up those flycatchers. Don’t sweat the small stuff. Casey
July 5, 2017.
Parkinson’s and Protein.
This article might be a bit technical; the gist of it is “don’t eat much protein if you want your meds to work”.
Dopamine, o dopamine, you used to be my friend!
Dopamine makes it possible for all of us to walk. This brain chemical is mainly manufactured by brain cells in the part of the brain called substantia nigra. For us parkies, many of these cells have died but we don’t know how or why. Apparently, 70% or so of these production cells are gone by the time we notice the first symptoms of Parkinson’s disease. Most people with Parkinson’s take a medication based on levadopa or l-dopa which replaces the dopamine. It also sometimes causes very annoying dyskinesia but that’s another story.
Dopamine, I’m sure many of you know that dopamine is also part, and maybe the leading part, of how we experience pleasure and feeling good about what we do. Might this knowledge help us to understand why many people with Parkinson’s are depressed and many have problems with motivation and initiative. Wow. It’s like Parkinson’s Disease is an iceberg, most of it is not visible. Sorry for the tangent.
Levadopa in it’s various forms (sometimes called Sinemet or Sinemet CR (controlled release), also comes as Staleva and several other brand names. A powerful drug combination that provides increased mobility for many people with Parkinson’s disease. Often, carbidopa is also included to prevent stomach upsets. The combination is referred to as Levocarb. L-dopa is usually taken orally several times or even many times a day.
My Parkinson’s was diagnosed Christmas of 2006. I am not a doctor nor a brain scientist, so I wrote the following information strictly from my own perspective (66 year old male, about 180 pounds, 6’1”). I assume each person is different. Also, this is not about a low protein diet.
I used to take my Levadopa/Carbidopa (I believe this is called Levocarb in Canada and Sinimet in the U.S.A. And Europe.) orally; it is a yellow tablet with a 2 pointed shape that is scored so that you could take 1/2 tablet. Now I’m mostly on Stalevo with a couple of Sinimet CR for stability and 2 levodopa/carbidopa to fill obvious holes, especially at night. Our pharmacist has been very helpful to set up an effective sequence.
My experiences with L-Dopa
For me the l-dopa and Stalevo take about 50 minutes to an hour to take effect; the chemicals need time to travel to the brain, pass through the blood/brain barrier and change into dopamine once in the brain. The Sinimet CR is less predictable but is supposed to last longer. Once the dopamine (a neurotransmitter) arrives, it is then used by the brain to communicate with the rest of the body and improve mobility. It works pretty well for me; in fact it makes me sort of normal for about 8 hours a day. Sometimes the medication does not work for a while and then starts working again. I believe this is called the on/off effect.
How does protein fit in?
Here comes the purpose of this blog: Certain kinds of protein use the same brain infrastructure as L-dopa. Somehow they go into the blood stream first and my poor brain chemicals get lost in the shuffle and come to a watery end if you catch my drift. Down there they can do no good and might actually do harm out in the rivers or lakes if they do not get caught by the cleaners.
If there is too much protein in the stomach (or the digestive tract), the levodopa/carbidopa does not get to the brain and is eliminated from the body. I sometimes visualize this as a ferry boat crossing the water. The protein takes all the seats and the medication is thrown overboard. Apparently not all Of us receive that information, which to me seems so necessary for a decent quality of life.
The best advice
The best advice seems to be to eat less protein during the day and have more protein in the evening. This makes sense but the actual details do not seem available in the literature or on-line. It also is rather difficult to explain to others what this is all about. That’s why I’m writing this article, hoping that it might assist others. Again, this is my own experience and yours may be quite different. Avoiding too much protein during the day requires a shift in eating patterns and can be a nuisance to both patient and caregiver. We need protein to sustain our bodies and especially our muscles. So we can’t avoid it altogether. A complicating factor is that the “off” period does not occur immediately but later when any medication already on it’s way to the brain runs out. Try to explain that to your family and friends.
The medication needs a 15 minutes or so head start before eating the protein. After the protein, it takes 1-2 hours (depending on how much protein you ingest) before the Staleva or levadopa/carbidopa can be effective again but keep in mind it takes an hour or so to become effective.
My current prescription is for 1 Sinimet CR 7.00 a.m., then 1 Staleva every 2 hours (6 total), with the last one just before supper. Then one more Sinimet CR about half hour before bed.
I eat a lot of fruit, along with some cereal for breakfast. I try not to eat too much for lunch. Supper is a normal dinner, making sure it includes lots of protein. As you noticed, I don’t take any medication between supper and close to bedtime, although occasionally I take a Levocarb just to keep some symptoms down. Just for the record, this is all approved by the neurologist and worked through with the pharmacist.
What if I don’t want to have a low protein lunch. Of course I’m in control of the exact timing (actually my iPhone is but don’t tell anybody) and sometimes it’s worth it not to follow the regime but to enjoy something different. For example, last week we had a scrumptious lunch, I had smoked salmon and all kinds of other stuff. 2 hours later I paid for it in “ off time” I could barely walk but it was worth it. Don’t do this if you have to drive though. No use taking the Stalevo, it wouldn’t get on the ferry with all those protein guests. You’ll save your insurance company a few dollars. Perhaps in a future blog, I’ll talk some more about breakfast, working out details of protein’s effect on l-dopa absorption and also about the psychological implications of these daily decisions, which taken together can sometimes feel like a day job.
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July 1, 2017. Happy Canada 150+ day.
This is the long way to talk about how to deal with a diagnosis of Parkinson’s disease or any other chronic and/or debilitating illness. Please bear with me. Once upon a time I was a teacher of a college program called “Developmental Services”. Once a year we invited a group of parents to come and talk about their children but especially their child who was diagnosed with a severe developmental or learning disability. Student feedback told us this was the most profound day of the school year when cliches and stereotypes tumbled down and were replaced with more real and helpful attitudes. Many a tear was shed and not only by the students. I and the other teachers had so much respect and admiration for those parents, mostly moms, whose lives had been shattered, we thought, by the arrival of a child with so many disabilities, it would change the families forever.
The parents spoke very candidly about their experiences and struggles, especially to obtain an accurate diagnosis and appropriate professional and personal support. One of the parents brought an article called “welcome to Holland”; it was written circa 1987 by Emily Perl Kingsley, also a mother of a child with disabilities. It can be found on the internet but I have not learned to incorporate those kind of links yet. Being a Dutchman by birth, I was intrigued by the title. Of course this was just a metaphor to describe the process of accepting a child with numerous limitations.
The gist of the story is that expecting parents are looking forward to a child who will develop normally, behave well, fit in with other children. Of course we want our children to be happy and responsible. We dream of them being successful and surrounded by loving people both as children and as adults.
Here is the metaphor: we want to go to Italy to experience the sunshine, the culture, the food and wine, the buildings build in antiquity, the beautiful artwork, frescoes and history. What is not to like? The day comes and we are pumped and ready. Passport- check, Euros-check, plane tickets- check, reservations-check. You get the idea. We’re on the plane, sleep a bit, have some mediocre food and we land. The captain says “welcome to Holland”. ‘What?’ We are supposed to be in Italy, there must be some mistake. No ma’am, no sir, you’re in Holland and you’re here to stay. Eventually you realize that you’re not in a terrible, filthy, dangerous place. You even come to appreciate Holland. It has tulips and windmills, beautiful flowers, ancient buildings, lots of museums, Rembrandt, wonderful food, great beaches. It’s not Italy but it’s not so bad. We may still occasionally yearn for Italy but are thankful for Holland. We have unique and positive experiences we would have missed if we had gone to Italy. End of metaphor.
It’s just a metaphor, so it only reflects part of the experience. Perhaps we only experience this acceptance when we come up for air from the intense feelings we have about being diagnosed with Parkinson’s or another illness. Perhaps Parkinson’s is different because it is a progressive (what a funny way to describe PD) illness that at best we can slow down but which will relentlessly take away our lives.
To go back to the metaphor, perhaps it goes something like this: We go to Italy but only get to stay a while, then we move to Switzerland and learn to appreciate the mountains, the cheese and yodelling. This time our family and friends come along. We may even make new friends. Again we and our “entourage move, this time to France. Tour de France, Paintings and statues, wine, beaches, trains, Paris. We can get used to that. Next is Belgium with it’s beautiful old cities, Vibrant Brussels, Northsea coast and hill country. Perhaps our last stop is Holland (properly called the Netherlands). We’ve already looked at that. All together quite a trip, lots of challenges, great scenery, good company. End of metaphor (again) .
as one of my colleagues often said, life is a series of choices, we can accept the challenge, engage with it, learn about it, adapt to it, enjoy the enjoyable parts, even dance with it. Or we can run from the challenge, hide from it, let it have it’s way with us. I know which choice I made, bring it on.