January 14, 2018.
In the mid nineteen seventies, a long time ago, Jan (then a friend and now my wonderful wife) and I were in college and also worked in a residence with 28 young people who had various degrees of intellectual disabilities and sometimes also sensory impairments and behavioural issues.
One of the people we supported was a young adult with what’s sometimes called a moderate intellectual disability. He also engaged in some non-violent but inappropriate behaviour, scaring some of the other folks. He also was a polarizing presence among the staff. Some thought he was downright charming while others found he couldn’t do anything right. For the purpose of this story, I’ll call him Ben. Interesting to see the interactions between him and the staff but that’s another story.
Somehow he and I got along fine; I wasn’t much older than he. I often worked the midnight shift on weekends and watched hockey games on TV with Ben and a group of young men. I didn’t know much about hockey but I learned. Hey, it also fit in quite well with “doing the laundry”; put a load in-watch hockey-move clothes to dryer-watch hockey-take clothes from dryer-watch hockey- fold clothes-watch hockey and so on. After hockey was done, everyone went to their own rooms, except one fellow and myself. We folded the laundry, did some other chores; by then, it was time to get breakfast ready.
Video games did not exist yet, as far as I know, so Ben and I often chatted together, neither he nor I were that much into this hockey thing. Pretty typical male discussions that eventually turned to cars, driver’s licenses etc. One night he asked me if I could teach him how to drive. Of course I said no, people with intellectual disabilities can’t drive cars and definitely can’t cope with busy traffic, can they?
Through all the conflicts and behaviour problems in his young life, Ben must have learned to be persistent, maybe even stubborn. He kept asking me to teach him to drive. I figured I’d show him how complicated this was for anybody leave alone a person unable to read, so I picked up a booklet with all the information but guess what, it said you could do an oral test, bypassing the reading part.
Even though Ben was unable to read (or write) he seemed quite capable of understanding the road signs and grasping the consequences of a wrong decision on a busy road. I was beginning to admire this fellow’s tenacity and agreed to ask the director of the residence. She had already heard about this from Ben, who covered his bases quite well I learned
She said he couldn’t learn to drive but if he wanted to try the oral test, he could do that. Quite a paternalistic approach but this was very common then (1970s). I know that “they” could not have stopped him because he was not a minor but I don’t know if he knew that. They could have stopped me though, as long I was working for “them”. No harm done except to his ego when he failed. Success was not even considered. I was beginning to wonder if it would be possible. Ok, here we went. I instantly became a learning coach, Ben learned the material through discussions, independent learning, pictures, etc. All the energy came from him, I just followed along. Interestingly enough, his behaviour issues disappeared.Eventually he told me he was ready and could I please make an appointment for him to “sit” his oral test. Of course I was not that dense, so I took him to the driver’s license bureau and let him make his own appointment. The scheduled day arrived, Ben got up early, did his test and of course he passed with flying colours.
Now what; the director and some of the other staff were very surprised but Jan, myself and a few others were not surprised at all by that time because we had seen the determination and effort and yes, skill, Ben displayed for months and months. We were prepared to argue that it would not be fair to deny him the opportunity to try to actually learn to drive. Some staff were alarmed that a person “like that” would even be on the road and jeopardize everyone’s life and safety. The director gave permission because of fairness and asked me to take him out to the back of the building and see if I thought he could manage that. If he did, she would leave it up to me to proceed with caution, hoping that he would not get too far.
In Ontario any willing person with a valid driver’s license can teach someone else to drive. I don’t believe we had graduated driver’s licenses yet. Anyhow, I became an instant driving instructor in my own car. You can probably foresee the next part but make sure you read the last part.
Of course Ben gave it his all and half a year later I could do nothing less then recommend that he should try for his actual driver’s license. Was I sure that he would not displayed for months and months. We were prepared to argue that it would not be fair to deny him the opportunity to try to actually learn to drive. Some staff were alarmed that a person like that would even be on the road and jeopardize everyone’s life and safety. The director gave permission because of fairness and asked me to take him out in the back of the building and see if I thought he could manage that. If he did, she would leave it up to me to proceed with caution, hoping that he would not get too far. Of course he passed that little prerequisite.
In Ontario any willing person with a valid driver’s license can teach someone else to drive. I don’t believe we had graduated driver’s licenses yet. Anyhow, I became an instant driving instructor in my own car. You can probably foresee the next part but make sure you read the last part.
Of course Ben gave it his all and half a year later I could do nothing less then recommend that he should try for his actual driver’s license. Was I sure that he would not create an accident? At least could I guarantee that Ben would not kill anyone? How could I know that? I can’t even say this about myself. There are few guarantees in life. No way to stop him now. He passed with flying colours again. First time out. I needed 2 tries a few years before; this confirmed my suspicion that he would be a better driver than I. All the staff congratulated him. A few weeks later he obtained a job with a local moving company, a job that suited him just fine; he was very strong and now that he could legally drive, I’m sure he made for a great employee.
I completed my college diploma and moved to a different part of the province to take on a different position. A year or so later I went back for a visit. I was told that Ben had been in a truck accident with the moving company. He was paralyzed from the neck down. What a shock and how sad, after all the effort he ended up not being able to do anything and had to be cared for by paid staff.
What does this have to do with Parkinson’s Disease? Absolutely nothing or absolutely everything. My intend of this blog post was to focus on risks, since we all make decisions based on our assessment of how much risk there is and how much we are willing to take. Our investment advisors ask about that before they invest our first dime. In my next blog I will relate this to some risks associated with Parkinson’s.
For now, I will look at some risks in the story. I might phrase it as a question: Who took what risks?
First, I think Ben took a risk talking to me and insisting I teach him to drive. I might have made him feel real dumb and inadequate by putting him down for not being able to learn or even read.
Second, I took a risk taking this issue to the director. As a very young and inexperienced staff member she could have made me feel real dumb and inadequate by putting me down for my lack of experience and skill. I also took the risk that Ben would cause a potentially fatal accident.
Third, the director took a risk, perhaps an ongoing risk, by allowing the process to begin and later on to continue. The other staff might have blamed her if Ben had been in an accident. If another person had been injured or killed there may have been not only blame but perhaps even a legal liability. In retrospect, perhaps she took the biggest risk. She may have lost her job and career.
Fourth, the board of directors and perhaps their insurance company took a liability risk, although I don’t know if they knew anything about this.
Fifth, Society as a whole took a risk, although they it takes the same risks for all of us.
I could go on but my point for now really is only that risks of various consequences are part of our daily experiences.
Now I’ll tell you the rest of the story. Ben was not driving at all. He was sitting in the passenger’s seat of the moving truck; the truck was parked properly but got hit by another truck whose driver lost control. Ben was not driving at all. The other truck’s insurance paid out millions of dollars to build Ben a totally accessible home and around the clock care as well as rehabilitation. Still a very sad story but the risks certainly came out in a very different way.
I hope you enjoyed this story. I’m not sure what happened to Ben; the residence closed and everyone moved to smaller living quarters; making it harder to track anybody. I got a very busy job in Sarnia, Jan and I got married. Unfortunately, we lost track of Ben, he will be a senior by now just like us, if he is still with us.
I heard some of you received 16 emails or articles from this blog. I did not know that was going to happen when I got someone to help me set up a better blog site. There may also be blogs from a lady about food, trips, etc. None of this relates to me but is part of the package to improve. Sorry, I hope to make this better. Casey
November 22, 2017
Who needs it.
Actually, I am dreading writing this post, but it’s at the heart of adaptation. Until this last year or so, I didn’t think I thought much about it, I know lots of people who are not as independent as we have been. Some from birth, some due to illness or accident, many of them older like Jan and I. Then I realized that I had identified that I had to learn to become dependent on God and my fellow human beings on our church’s website when I became a “pastoral support” person. This was about 6 years ago. Parkinson’s had been my unwelcome companion for 5 or 6 years, but I was still quite independent. I also did a half sermon (yes there is such a thing, at least it is now) and guess what topic I picked? You got it, being dependent. I must have just stuck my fears in a part of my brain where there is no light. Now before I go off in a rant, I want to acknowledge all the wonderful people on whom I have become dependent, without whom our lives would be so much less.
Just a rant
Losing one’s independence is not a straight path, especially for a Parki. If you ask me if you can carry my luggage upstairs, say at 9.00 p.m. I will gratefully accept that. If you ask me to carry it down the next day at 9.00 a.m. I may refuse, saying “I can do it”. If you insist, I may actually get a little huffy about that. You probably think I’m just an ungrateful old goat but in reality it’s my medication that does not work about an hour after supper and will probably work quite well in the morning, depending on what I had for breakfast . Some times I need my cane, sometimes I don’t, please don’t insist. People say each day may be different; true but each hour may be different too. Some things are unpredictable and I have to accommodate these. Some things may be impossible all the time, for example, I am unable to drive at the moment. I still hold out hope that some day, perhaps with the aid of Deep Brain Stimulation, I can get behind the wheel and go wherever I want too once again but for safety’s sake this is not the time. Stuff can add up too; I believe this is called the “cumulative effect” of various things ganging up on one person, couple or family. In our case Jan lost her license after a small stroke, so we are completely dependent on others to go anywhere. That knocks out a lot of opportunities and as someone said not too long ago, it deprives us of many spontaneous outings or experiences. Loss of personal abilities, once taken for granted, now require “coordination”, ‘foresight” or you just skip it. Often times I go barefoot at home, just so I don’t have to fight with my socks or get someone else to help me. Rolling over in bed becomes a major hassle. Remember this is just a rant about feeling you’re losing too much; I don’t mean to whine and I’ll be more balanced again pretty soon, I promise. But right now I just want to say in scientific terms “this just sucks, I hate it, why are you doing this to me, enough already, let me go”. I can cope with the symptoms of Parkinson’s but I can’t always cope with not being able to do things. For a long time, when people asked me if I would like to go back to work, I’d say yes. Eventually I realized that it was the “ability to go back”, rather than the deed itself that I wished I had.
Coping with disability
Some people just hole up, but to me that is like crying “defeat”. I don’t want to go into hiding, that would make for a very small world indeed. Of course railing against becoming dependent is like kicking a huge rock, the rock does not hurt or move or change but your feet will surely hurt a lot, probably for a long time. Rather than having a pity party I have learned to look around me and make some sense of this. There are millions of people who have fled their own country, leaving everything behind. Millions more experience famine, untold thousands of people lose their children every day. Compared with those horrible things, I have nothing to complain about. So what I have Parkinson’s, a few wild hernias, and bits of cancer. Instead of feeling sorry for myself, I listen and look for other people’s examples.
Good examples to follow
The first individual person that comes to mind is the late Judith Snow, a person who would be entitled to an ongoing pity party for years to come. She had paraplegia at birth and suffered from a condition that eventually denied her all movement below the neck. She was in an electric wheelchair and was almost totally dependent on others, including the very intimate parts of her life. However, she carried on a full life as a writer, actor, nature enthusiast, communist and an internationally renowned champion for inclusion. The above information taken from an article by James Cullingham of the Globe and Mail June 30, 2015. Ms. Snow spoke a lot about various gifts; the one I remember quite clearly goes like this: “ to be able to walk is a gift, to not be able to walk is also a gift, to be able to talk is a gift, to not be able to talk is also a gift”. How is that possible? I belief the answer is that if I can walk, I can serve (help/assist) someone else but that person also provides an opportunity for me to serve. Same with talking. Perhaps here multiple opportunities exist, for this person will need a speech therapist as well as a communication specialist and possibly an electronics person and a day-to-day assistant. In a different context I have heard Pastor Doug express the same sentiment in a Christian environment. .We don’t have to feel upset because we need help; we are creating an opportunity for others to serve. We can go a step further and see all of us not as independent or dependent beings, that would create a 2 class society, but rather an interdependent carrying on, as my colleague and good friend Norma so eloquently reminds me of from time to time. Who sells my bread, that was brought by a truck driver, stored in a warehouse, grown by a farmer from seed developed by a university professor via a corporation? Who sells me milk, clothes, etc?. Since we all have certain gifts, we are all takers and givers, perhaps at different times but likely at the same time. Ultimately everything comes from nature or God if you will. It all fits, I’m happy again. Once again I’ll thank all of our supporters for the marvellous work they do. If I’m occasionally a bit grumpy, don’t take it personally, just be cheerful. It’s my problem and guess what: I’ll get over it. Have a gr8 day. Casey
Things we use 3.
‘What, more things we use; when are we getting to the juicy stuff?” Some readers may ask. I’ve been thinking about dependence, but that may be too much. Do you have any thoughts about that? I’m slowly discovering that I have very strong feelings about that.
Hello all: carrying on my blog. I thought I would spend one more blog talking about things that can make our lives easier and sometimes possible.. Before I do that, I just want to give a shout-out to Jennifer Robinson’s website that includes so many devices, it makes your head spin. All nicely broken down into categories such as bath, bed, recreation, etc. I hope you can just click on the address and go there. www.helpmedevices.com
Today 4 small items and 3 not so small ones.
First off an actual electronic item: an iPhone. I’m sure androids and other platforms will work just as well. Of course these smart phones and their apps can do all kinds of different things including surfing the Internet, keeping your health information and finding your way to unfamiliar places. For my Parkinson’s I rely on my iPhone to tell me when to take my levodopa. At the moment 2 hours apart, at least during the day. Without the phone alarm, I would more often get into unnecessary off periods. The better I feel, the more likely I am to wait too long but the phone has no mercy and will tell you to take your medicine. Of course you can override this but why bother.
With diminished fine motor control I found it increasingly difficult to open the childproof bottles and guess what, we have no children, especially little children, at home. So the pharmacist started giving us the easy-open bottles. Nice and easy until the day I put several in a travel case and by the time we reached our destination, my pills were thoroughly mixed, quite a party. Lol. For those times a screw-top is wonderful and I’m sure your pharmacy would gladly accommodate you, or perhaps you have some “empties” laying around.Just think ahead, not always an easy task for a parky.
I am just putting this on the list to represent the many items available for all of us. Getting the long shoehorn works a lot better than the short one, once you can’t get down to shoe level.
I was going to skip this, it is rather personal but then, someone might be able to use this information. Actually I don’t belief I need this for my Parkinson’s but rather for a pair of hernias I entertained for a while. It also may be more relevant for those like myself who are over 6 feet (180 cm) tall.The best part of this are the 2 sidebars you can use to get up. I don’t think I have to mention cleanliness or to pick your bathroom because not everyone needs to see it. Not that there is any shame in it; it’s just another piece of mostly plastic which functions as an assistive device.
Electric lights (no picture)
It’s not too long ago in history that nobody had electricity; I can only imagine what life was like then. I’m putting it on my list because it seems to me that with enough light I’m just incrementally more mobile than in complete or almost complete darkness. We always use a night light. Of course the sleep hygiene experts tell us no bright lights during sleep but a little bit of light is a good thing. Every bit of mobility, especially at night when I take much less levodopa, is welcome and increases safety. Sorry, no picture because there is such a wide variety available.
Ledge underneath tables
Once I began having trouble getting up from a chair, I automatically, because our bodies look for ways to adapt, reached out to the nearest table, grabbed it and discovered a ledge underneath. I would not be surprised if most people know this but somehow I missed seeing it before. It greatly helped, and still helps,
me to get up. It does not look very elegant but it works. I since discovered that most tables have such a ledge. One caution though, if you are strong, you want to be careful not to pull too hard or you might pull it over. I’m sometimes afraid I’ll rip our table from the wall to which is is fastened. I would encourage you to look under your table, if this would improve your life. Sorry, the picture is a bit dark but I’m sure you get the idea.
Man purse, also called Murse
As my fine motor skills deteriorated, I was starting to have difficulty with my wallet. Often credit and debit cards as well as coins and paper money landed on the floor. Usually some kind person picked it up for me, often total strangers. I got rid of the wallet and got a bag with 2 compartments, one zippered up and one open. It has straps so I can hang it on my shoulder, or better yet, hang it around my neck. Now I can get my hand in the bag and manipulate the contents without dropping anything. To be more precise, I still drop them but now they remain in my own murse and I can try again. The only two problems are forgetting the thing and keeping the contents organized and pruned down. It is really easy to let it fill up, and loose part of the benefits. I stand in awe of the ladies who carry purses with umpteen compartments but they know where everything is. What school did they go to to learn that? It was not the Parkinson’s Academy, I know that much. Anyhow, the murse is a big improvement. Mine came from Jamaica, but I’m sure you can find one in any town or city.
Final word about “things” for now.
I have only scratched the surface of things that can help us; just a small sample of what’s available. More and more things are developed or adapted. Keep your eyes open, the simplest and cheapest items are often the most useful.
Until next time, goodbye
September 24, 2017
Sorry I have not posted for quite a while. Strangely enough, I’ve been very busy for someone who has nothing but time. A lot of appointments, scans en tests between Jan and I, illness in the family, lack of discipline, Parkinson’s.
Before we go on, I just want to mention one more thing about that big chair I discussed in my last blog. It “eats” your blanket or anything it can get it’s “paws?” on. To get the item back you need to lift or recline the chair and then pull it away. Now on to other things. Who knew!
This blog (as well as the previous one and maybe the next one, is about adapting to PD with the use of “things”. Equally useful for people with other disabilities like COPD, Arthritis, or people that are aging.
I have 4 great friends that help me get from the TV room to the kitchen. There are 3 steps to take, usually not a problem but when I am at my darkest off time, usually about mid-evening, beginning about an hour after supper, lasting until bedtime when my Sinimet CR (controlled release) kicks in. Meanwhile I use a small walker (a.k.a. Rolator) to get to the steps, then 2 grab bars are there to help me up, then my cane to carry on. Pretty spiffy! Took some time to figure out but now I don’t have to bring any equipment up or down the stairs. On a good day, I can even carry a cup of something without spilling (most of the time). I’m not sure you can see all of them clearly but they are there. When the grab bar installer was finished, he said it would all be fine as long as there were no monkeys hanging on it. A joke, right? After 4 or 5 years I see now that he was serious; the bars need to be inspected from time to time and repaired as required. Ours take a lot of use; I am the worst offender, putting too much stress on the fasteners in the wall. I invested $ 50.00 in a so called Hurricane, which can stand by itself on a flat hard surface and can be collapsed for easier storage, for example in a car.
My bed friend
I’ll try to explain this thing we call our parrot. It’s a metal thing to hang on to when getting in and out of bed. There are 4 horizontal bars all in a nice framework, but what makes it work are the long bars at a 90 degree angle that go under your mattress. This gives a lot of strength. Why is it called a parrot? I have no idea, if you know a diffent name, let me know. I first heard the word in the Netherlands and thought it was just a European word, but some friends in Canada also said it was a “parrot”. Here’s a picture.
This is a very useful tool I use to retrieve items I’m unable to reach, at the moment because of various pains, but generally for anyone who wants to pick up items that slipped away. Works great in combo with that “big chair” from my previous post. I even use it to pick laundry out of the dryer (not so good out of the washing machine or dishwasher. It works so well, I’m looking for an other one to use outside. In the picture I’m picking up a lobster. Not. It’s a neck pillow, in itself a neat adaptation for many people.
August 14, 2017
As Parkinson’s disease chews away at our abilities, we learn to adapt, adjust and change to the new realities. One of the ways we do that is by using “things” To make our lives easier, better and in same cases possible. For example, without the 2 grab bars to help us up and down the 4 step stairs between our kitchen and the T.V. room, I know neither Jan nor I (at least during an “off” period) would be able to use both sides of the house. Basically, half the house would be inaccessible. Since both sides have access to some other rooms and functions, that would make our house pretty much impossible to live in.
When I first thought about including “things” in my blog, I envisioned the things to be mostly electronic equipment, apps and devices, stuff that only a few generations have access to. By the time I listed the items I realized that most adaptive aids had been around for quite a while, invented, I’m sure, by people with similar needs and interests. I also realized that all these things are used by people with many other conditions, chronic as well as acute. I’ll just describe the items and make a few comments about them. This will probably take 2 or 3 blogs. I also have a few pictures to illustrate, hope you enjoy this.
I’ll start with the biggest item, a lift chair. I’m only familiar with this one, others may be different. I suspect most people with Parkinson’s may not need this kind chair. I have some other issues that made this necessary for me. There are 2 motors that position the chair for your comfort. The purpose is to allow you to get out of the chair with ease, by lifting the seat so when I was unable to get out of my original “easy” chair, this lift chair became a welcome addition to our home. It works great, it allows me to get out of the chair without too much effort, it has a remote control with an attached cord. The remote has four programmable settings as well as controls to put the back and/or the foot rest in preferred positions. It does all that effortlessly and without complaining, it even lets me sleep quite comfortably but there are a few things to consider.
Lift chair issues
The first issue is size. As you can see in the pictures, it is high. Look at the greenish one next to it. Not a slouch either, but it dwarfs compared with the lift chair. One of the results is that it is difficult to talk with your neighbour. The chair does not pivot to accommodate eye to eye contact. Issue # 2 is that once I am are back far enough to be comfortable, I feel like I’m stuck, I’m in prison, the chair is now the boss. The 3rd, but related issue is that getting out is difficult and slow. You have to push and hold the lift button and it slowly takes you back to the front. If you try to get out earlier you have to fight gravity. Now I am usually pretty slow myself but occasionally I want/need to get out more quickly. Telephone and bathroom are obvious examples. Answering the door is another. I’m sure nobody minds waiting but it just does not feel right.
To buy or not to buy
All in all, a chair worth having, though not cheap, if you really have a use for it. Don’t get it just in case. Wow, I didn’t know I could spend 600 words on a chair, but here it is. Until next time. Casey
August 10, 2017
Somehow I couldn’t get my head around writing a new blog last week or this week. Too many medical things going on, none related to Parkinson’s, as far as I know. However I managed to get permission to link to an interesting article about the language of Parkinson’s disease. It was written by Alison Smith a.k.a. Perky Parkie, one of my fellow parkies. You can find it under, what else, Perky Parkie. Enjoy. Casey
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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