Have Medicine, Will Travel *

Part One: Medicine Magic

Even Miracles Need to be Scheduled

This post is the first of three parts. Parts Two and Three will appear in the next few months. In this installment, I discuss my thoughts on, and use of, the miracle Parkinson drug carbidopa-levodopa, the generic name for Sinemet.

Next, in Part Two I will provide detailed examples of how to adjust scheduling carbidopa-levodopa doses when traveling. My discussion will focus on problems I encounter, and my solutions as a Parkinson’s patient undergoing carbidopa-levodopa therapy traveling within and across multiple time zones.

Finally, in Part Three I will cover how to prepare medicine for travel. I take over 20 pills a day, many of which I must take in a specific order and within a specific time interval. This section will be valuable to everyone required to maintain a medication regimen.

I almost titled this series Need Medicine to Travel. Read on to discover why.

 

Carbidopa-Levodopa, the Gold Standard for Treating Parkinson’s Disease

          Carbidopa-levodopa is the generic name for Sinemet. It relieves symptoms of movement-related problems of Parkinson’s Disease, but it does not cure it. It is such a powerful and effective drug that doctors sometimes prescribe it for difficult-to-diagnose patients to see if it helps them. If it does, they have PD. If not, they may have something else.

Most patients in the early stages of PD do not need this drug to walk. As the disease advances, they may require it to walk. Side effects may encourage doctors to delay this therapy if possible. What most frightens me is that as the disease progresses, larger doses are needed, and side effects are more severe. I experience many side effects but focus here on those that are challenging or even dangerous when traveling.

Unintentional movements are an unattractive and disquieting side effect for both the patient and the observer. These motions appear as tremors, jerking, and squirming caused by involuntary muscle movements called dyskinesia. PD patients who take carbidopa-levodopa for long periods increase the probability of “on/off” periods of symptom control, resulting in dyskinesia. It is not a pretty picture, but it beats the known alternatives.

“Wearing off” is annoying but relatively harmless if you are at home or prepared. If it is unpredictable, and you are traveling in a foreign country, the result can be quite dangerous. In addition to the sudden involuntary movements, the “wearing off” can result in “freezing.” You freeze and are unable to move. Such erratic incidents can cause you to fall. If you come to a sudden stop in public, people behind you might run into you and knock you down. Avoid crowds. When I travel in foreign countries, I usually go with a small group of friends who surround me and run interference. Other “off” symptoms are slurred voice and difficulty forming sentences.

This drug therapy can also cause both low blood pressure (hypotension) and high blood pressure (hypertension). I wrestle with low blood pressure. My entire adult life, pre-Parkinson’s, my blood pressure was 115-110/70. In the fifth year of my treatment with carbidopa-levodopa, I started feeling lightheaded, particularly when I stood up after a meal. I fainted, and upon measuring my blood pressure seated and right after standing, I found it to have declined to 90/60 or even lower. Now, I salt everything at meal time, inspiring “healthy” dinner companions to lecture me about the dangers of salt. Upon standing, but before I take a step, I count to ten to permit my blood pressure to return to normal.

For me, the saddest stories come from doctor’s waiting rooms where patients stumble, mumble, and share that their drugs are losing effectiveness. Increased dosages produce no noticeable benefits while the side effects worsen. In recent years, some patients have found relief in a surgical procedure called Deep Brain Stimulation or DBS. I have not reached that point. Today I take twice as much Sinemet as I did when I began the therapy in 2010, and yet I jerk, squirm and freeze.

I suppose I burn calories. I do not recommend it as a weight loss program.

Doctors prescribe larger and more frequent dosages as the disease progresses. I am not convinced this response is always warranted. I kept careful measurements of the time I took each dose and what I had eaten and drank before, with, or after the dose. Then I noted the medication’s effect on my body under these various conditions. By tracking my body’s physical response to each combination of time of dose and foods consumed, I determined that taking the carbidopa-levodopa without food, but with a glass of water, 30 to 60 minutes before a meal works best for me.

Many PD patients take vitamin supplements, and I suggest taking them with the meal to avoid potential adverse Parkinson’s drug interaction. Compared to carbohydrates, protein seems to reduce the effectiveness of Sinemet. Alcohol can increase side effects of unintentional movement. Clinical studies examined many drug/food interactions, but I believe that patients must determine the best timing for themselves.

An accumulation of carbidopa-levodopa in the body during the day can cause dosage confusion. By day’s end, the patient may have a reserve of effectiveness that varies from day to day depending on the previous night’s sleep, a mid-day nap, food intake, the type of food, and the timing of the medicine. Patients must keep these variables in mind at home or traveling.

The example below is based on my personal experience taking carbidopa-levodopa for the last eight years. It is the baseline case, as I discuss only one PD medicine. Most PD patients take more than one drug. This case study illustrates the difficulties that arise in travel when one is dependent on medication requiring specific conditions for effective results.

 

Baseline Case: Carbidopa-Levodopa Therapy

7:00 am Patient takes one 25/100 tablet of carbidopa-levodopa. Stays in bed and starts to feel the drug about 7:15 am. Notes extreme tiredness and a desire to go back to sleep. This sensation does not last long, perhaps only 15 or 20 minutes, but, for me, it happens every day.

8:00 am Patient can take a shower and get dressed but must take care in walking; may need a cane or walker; breakfast is necessary and provides a real energy boost.

8:30 am Half-life point of drug dosage. Patient feels good as the drug reaches maximum effectiveness. Patient can leave house.

9:30 am—10:00 am If patient is attuned to his body, the medicine’s diminishing effect is noticeable; fatigue may set in.

10:00 am Patient takes second 25/100 tablet of carbidopa-levodopa.

10:30 am Another feeling of renewed energy.

11:30 am Medicine’s effectiveness peaks; cumulative effect of earlier doses may push time closer to noon.

12:00—12:30 pm Lunch, essential, even if a small soup; little or no protein if patient has discovered that protein taken with medicine reduces its effectiveness. After much testing, I became convinced that protein taken with the carbidopa-levodopa reduces the drug’s effectiveness. I can confuse low blood sugar with diminishing effectiveness of carbidopa-levodopa.

1:00 pm Patient takes third 25/100 tablet of carbidopa-levodopa.

1:00 pm—2:00 pm Medicine can cause sleepiness and require a 30 to 40-minute nap. Avoid driving a car or operating machinery.

2:00 pm to 4:00 pm Patient feels pretty good from the cumulative effect of the three doses of medicine.

4:00 pm Patient takes fourth 25/100 tablet. Depending on the person, the stress of the day, activities, and other variables, this fourth dose may last for four hours or more, carrying her through dinner until 8 pm.

8:00 pm + If home, and bedtime is around 9:30 pm to 10 pm, it is possible to get by with no additional medicine PROVIDED great care be taken during nocturnal bathroom trips. A bedside urinal may eventually be necessary to preclude falling during bathroom trips in the middle of the night.

10:00 pm—7:00 am Nine hours of interrupted sleep. Some patients take a time–release dose of carbidopa-levodopa to reduce the risk of falling in the middle of the night. I do not, hoping that by giving my brain an overnight rest, I will extend the drug’s effectiveness by several years.

 

The Importance of Keeping to a Precise Schedule

In the example above, I have provided precise times for taking medicine, eating food, and advised when it is safe to move around. While there is some flexibility in meal times, I find it best to take the drug 30 to 60 minutes before eating. There is little room for error in the timing of the medicine because the drug’s half-life is 90 minutes. A delay of even 15 minutes risks destroying my day. I tested the taking of the carbidopa-levodopa 10, 20, and 30 minutes early and late. If I take it early, I do not risk falling, but my end-of-day experience becomes uncertain. If I take it even 15 minutes late, I may never catch up the rest of the day, and I feel tired and risk falling all day.

This baseline case describes an average day and can be thrown out of whack with unusual stress, sickness, allergies, a cold, or the flu. A good night’s sleep can add 30 to 60 productive minutes to your day. In the morning I need to focus on how my body reacts in the first 30 minutes after I take the initial dose of medicine. By this method, I have learned how it feels as the carbidopa-levodopa is entering my brain, the “on” period in the literature. The medicine schedule for the day depends on the timing of the initial dose.

In Part Two, I will build on the baseline case and provide detailed examples of adjusting the carbidopa-levodopa schedule when traveling within and across time zones. I will show why you should not schedule early morning meetings. You will fly with the sun to California and against the sun to Madrid. I suspect you will forever change the way you schedule medicine and travel.

*I do not plan on discussing the merits or demerits of the Parkinson’s medications on the market beyond my experiences with them. I do not have the education or training to comment on either the drugs or the PD research. I am NOT a medical doctor, and I have no medical training. All my university education has been in accounting, finance, statistics, and economics. My 50-plus years of work experience has been in economic analysis, investment management, and related fields. This blog is based on my personal experience as a Parkinson’s Disease patient searching for answers wherever I can find them. Many of these ideas came from my doctors, other PD patients, books, articles, and my relentless desire to change my life for the better or at least slow down the disease.

I welcome comments, suggestions, and stories.