• Cover picture Parkinson Journal

Tips on taking medication for Parkinson's disease

a guest contribution by Maria De Leon

Maria DeLeon Maria DeLeon

A guest post by Maria DeLeon 
Maria De Leon practiced as a doctor for many years and has Parkinson's herself.



Most of us who live with a chronic disease like Parkinson's know firsthand how difficult it is to find the right combination of drugs.

It seems that once we find them we are very reluctant to try new things, even if our symptoms worsen or adjustments are needed. On the other hand, we are not afraid of relying on medication or accepting possible side effects such as the dreaded dyskinesias.

What about the taking guidelines?

According to an edition of the US pharmacist A team of pharmacists in Carolina reported that an estimated 50 percent of people with a chronic illness either do not take their medication as prescribed or do not take it at all.

They either stop taking their medication or take it inconsistently for reasons as varied as side effects, the price of medication, nausea, or simply out of forgetfulness.

The subject of “intake rules” is one that, as a patient and former doctor, I always take into account when prescribing or choosing a drug - because let's be honest, we still have a life to live despite chronic illness.

What makes compliance so difficult?

The more complex our illness becomes or the more often we have to take our medication during the day, the more difficult it is to keep track of things and to remember in good time. Compliance then becomes a problem.

I often forget about those medication that is not related to meals, especially when I do things outside of my routine like eating. B. Travel. Therefore, I need to be extra careful in finding ways to ensure that I am taking my medication as directed. That is also the reason why I always have my medication with me in a convenient pill box.

The loss of routine makes it difficult to take it correctly, which often leads to undesirable side effects.

Four tips for taking

In my personal experience in dealing with patients and my own illness, compliance is the Ingestion regulation is much more important than the specific treatment itself.

The bottom line is that the easier and more convenient it is to take the medication, the greater the likelihood that it will be taken correctly. This gives the drugs a better chance of doing what they're supposed to do, which is to improve patients' lives. The chances of this increase once you figure out what works best for you.

  1. Note the timing of the medication

Synchronizing your medication intake with your lifestyle is a challenge that many doctors and patients often underestimate. So z. B. Prescribed sleeping pills to be taken before bed. Before using them, however, you should consider your social activities, responsibilities, and lifestyle. Sometimes we need to adjust the schedule of our medication to suit our circumstances.

For example, it takes about 2-3 hours for my sleeping pill to work, but after that I need to make sure I get a full 8 hours of sleep. Otherwise, I'll be mentally in a bad mood the next day. Therefore, I have to adjust my dosage schedule accordingly often.

This means that while I was driving my daughter to school at 6 a.m., I had to take my sleeping pill at 18 p.m. in order to fall asleep around 21 p.m. and wake up unimpaired.

  1. Be results-oriented

Many patients are simply afraid of side effects, just think of dyskinesia. This fear can paralyze people and prevent them from taking much-needed medication. The situation is similar with drug intolerance. The constant attempts to find the “right” ones with new drugs can lead to patients and their relatives becoming frustrated and often opting for no or only insufficient care or even for looking for a new doctor.

Be patient with medication changes

People react differently to medication, of course. In my personal experience, women seem particularly vulnerable to changes in medication or side effects. I am a prime example of this. As a specialist, I know the profile of every drug firsthand. Still, any small change in dose or schedule can cause me a lot of suffering.

I therefore understand the frustration, the hesitation and the reluctance to try new things. However, I also know that if you don't try, you won't find the best combination. This can take some time, especially if you have lived with the disease for a while. So be patient and trust the light at the end of the tunnel.

Be open to new combinations

Standard treatments require individualization. A certain drug or dose may not be right for everyone. Don't be afraid to try new combinations with medicines you've already taken. Remember that sometimes it is the combination that is the problem, and not a particular drug itself - I experienced this on my own body.

I developed severe psychosis when combining Topamax and Amantadine, but I have no problems taking either medication alone. You may also have other medical problems that affect tolerance, such as gastritis or infections in your stomach that cause more nausea than would be expected. In my experience the tolerance for dopamine and dopamine agonists improve dramatically when these conditions are properly managed. For this reason, it is important to keep the lines of communication open between you and your doctor. His knowledge of how medications work for most people can serve as a guide.

  1. Your doctor and you as a team

Finding a neurologist who understands and listens is key. I trust my doctor when she says it's time to tweak my medication. She has known me for 20 years and just wants my best.
Since Parkinson's is a slowly progressing disease, in my experience, once you find the right combination, you can usually live with it well for a few years. This also frees up some time for new drugs, which we hope will come out later. What is clear is that you have the final say on what you inject into your own body. However, you shouldn't go it alone. Make a habit of always consulting your doctor in deciding which treatments to choose. This includes alternative drugs.

Share as much information as you can

Unless your doctor knows exactly what medications you are taking (including prescribed and non-prescribed natural products and various over-the-counter medicines) or what problems or symptoms you are struggling with on a daily basis, it will be impossible to treat you properly.

Knowing more about your weekly activities is vital. Find ways to document both medications and symptoms using diaries, charts, wearable tracking devices, or some of the new on-off tools available online. This helps in discussions with your doctor or your nurse.

If memory is an issue, consider options like setting timers or using pill boxes. Another option is to switch to medication that is only taken once a day.

  1. Stay tuned

Keep in mind that most medications need to be stable in your bloodstream before you know whether they are working or not. For example, many drugs have initial side effects such as nausea, which typically get better after a week or two. So we mustn't throw in the towel too early if we want to give drugs a chance.

It is important to remember that since we cannot achieve a cure (yet), we are only treating the symptoms to live a better life. If you stop taking medication too quickly, you minimize your chances of taking more Quality of life.

Conversely, if you are fine, there is no reason to stop taking the medication. It just means that the drugs do what they are supposed to do.

Two keys to maximizing your wellbeing

Getting the most out of your medication takes a little creative.

After caring for Parkinson's patients for more than three decades and living with the disease myself for a third of the time, I discovered two things that are critical to maximizing overall well-being in chronic illnesses:

  • Sleep, sleep and more sleep.
    This means that you should not only take enough time to sleep, but also if necessary. Need to take medication to help you sleep soundly. Even if you only get 5 hours of deep sleep so your brain can clean the house, that's better than nothing.
  • The continuity of drug use.
    This also means that you should start treatment early, as soon as you are diagnosed or suspected of having Parkinson's (before the disease has progressed). Replacing lost oil from a car is easier than having to replace an entire engine just because the lack of oil has already stripped the engine.

If you have made up your mind to face your fate, you may have a busy life and you don't have time to remember all the pills to take, then seek help from loved ones or use drug apps, be it for Track symptoms or be reminded when your next medication is due.

Stay tuned.


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