Get to Know your Parkinson’s – Part 2
Management Strategies
In the previous article we discussed the long and complicated process of diagnosing Parkinson’s and ruling out other causes. We also considered different subtypes and what the implications of each subtype may be. Once a diagnosis has been confirmed, a patient and their doctor are faced with the next challenge – finding a strategy for managing the progressing symptoms so that the patient may enjoy good quality of life for as long as possible. Here, too, every patient is different, with some patients benefitting from many years, even decades, of good quality of life following their diagnosis.
Quality of life does not depend solely on the choice and dose of medication. The patient’s social support structure plays a crucial role in their ability to get help when they need it. Initially there is the question of whom to tell, when to tell and how to tell. Sharing the diagnosis with others, although often dreaded, may be helpful in many ways. Once in the open, the patient is relieved of the emotional toll of second-guessing other people's awareness of the Parkinson's diagnosis, or of actively trying to hide the symptoms from others. Secondly, once people know, they may be open to helping when needed. Knowing how to ask for help is an important skill worth developing. This does not make remaining independent any less important, it is just that Parkinson’s has so many aspects to it that, practically speaking, it cannot be managed alone.
What treatment is right for me?
This is a very challenging question to answer. Although there are rules of thumb – depending for example on age, symptoms affecting your mood or cognitive abilities – overall, it is often a matter of trial and error. Being well educated on the expected improvement and the risk of side effects can help you tremendously in the process of finding the medication “sweet spot” and responding to any changes.
The key to getting good results from medication is good communication with your doctor. Aided by your doctor, you should understand exactly what the treatment plan is, how symptoms are hopefully going to respond, and which side effects to keep an eye out for. To allow your body (and brain) to get used to any changes in your medication regimen, changes are made very gradually following the “start low, go slow” maxim. Patience, then, is another key component to success.
Self-awareness and self-care
Two additional components of successful treatment are self-awareness and self-care. Self-awareness helps you become an expert on your own individual Parkinson’s and how it affects your quality of life. Together with your doctor and your multi-disciplinary therapy team you should decide on your treatment goals based on what is important to you in your own life. Medication can be a game changer for patients, but to really maximize its impact it is essential to maintain a healthy and active lifestyle, look after your own emotional wellbeing, and utilize the wide range of therapists (such as dietician, occupational therapist, psychologist and sexologist) and other doctors (such as urologist, gastroenterologist, psychogeriatrician and sleep medicine specialist) available to you in order to address all the diverse symptoms that you may experience.
What side effects are there?
Sometimes the information in the medicine leaflet can be yet another source of anxiety. This is an example of why good communication with your doctor is necessary. The most important issue regarding medication is safety. Luckily, serious adverse reactions to Parkinson's medication are rare. Nonetheless, there are some concerns; for example, if you have a history of cancer, in particular melanoma, your doctors may advise against certain medications containing levodopa. And although controversial, there is some concern about drug interactions and the risk of serotonin syndrome when antidepressants are taken with MAO-B inhibitors. Any such concerns should be discussed with your doctor, as mentioned before, and pharmacist. There are many additional common side effects, ranging from swelling of the legs, dizziness when standing, skin rashes, confusion, and abnormal uncontrolled movements to cravings for sweet food.
In which symptoms can I expect improvement?
Most Parkinson’s medications attempt to regain the correct balance of chemical messengers in the brain, with the low dopamine state presenting the main problem. In fact, the hallmark of Parkinson’s disease is loss of dopamine-producing brain cells. This dopamine deficiency underlies the motor (movement) symptoms of Parkinson’s, in particular muscle stiffness and slow movement, and medication has the best effect on these symptoms.
Muscle stiffness occurs mostly in the arms and legs but may also be felt in the neck and back. Often there is pain associated with this stiffness. Medications that are prescribed for so-called motor symptoms (such as stiffness) often relieves the pain too. People who experience pain, and sometimes also those who don’t, often feel lethargic, anxious, or even depressed when they are in a low dopamine brain state. These symptoms too may respond to Parkinson’s medication which restores dopamine balance.
Stiffness and difficulty moving may also cause disruption of a full night's sleep. We all know that children can be very active at night during their sleep, but adults too change positions many times during the night, and not being able to do so may wake a person up. So, perhaps non-intuitively, we need to be able to move at night during our sleep, in order to sleep well, and for people with Parkinson’s that often means taking Parkinson’s medication before going to sleep.
What else can I do to help myself (other than medication)?
Taking medication is just one part of the whole story. In fact, medication can be viewed simply as a means to allow people to continue living an active lifestyle and to continue exercising. “Clinicians must facilitate exercise by appropriately aggressive use of PD drugs”.[1]
Exercise, sport, dance, and physiotherapy offer many benefits to brain health (including emotional wellbeing) as well as to other systems in the body, including the heart, lungs, bones and more. All this is relevant for people with Parkinson’s, with many added benefits such as maintaining muscle strength, flexibility, balance, and general fitness. All these are key to mitigating the motor symptoms of Parkinson’s: slow movements, small movements, poor balance, and a tendency for prolonged sitting, and bending forward or to the side when walking. If you track your performance, it can be incredibly rewarding to see an improvement in the face of a condition that should be causing a decline.
Many symptoms – such as tremors and difficulty walking – worsen with anxiety, fear of falling or simply by being nervous around people. Some people may feel like their feet are frozen to the ground - a phenomenon called “Freezing of Gait”. This is why in many cases most remedies that are designed to relieve anxiety, actually alleviate motor symptoms as well, and may even break the vicious cycle of tremors and walking problems causing anxiety and vice-versa. Relaxation techniques too can be used to relieve anxiety, with a focus on your breathing and inner voice. Adding exercises to improve walking and your balance will build your self-confidence, anxiety will subside, and many symptoms will often follow suit. With practice and persistence, the vicious cycle can not only be broken but even be transformed into a positive loop.
Other critical aspects of keeping a healthy lifestyle that may help with curbing the effects of Parkinson's include maintaining a healthy diet, sleeping well, and engaging in enjoyable social activities. On a higher level, the feelings of purpose and contribution resulting from those activities provide much satisfaction, joy, and meaning to life. Some people attain this through their work, others through their families, their hobbies or volunteering activities.
[1] Ahlskog JE. Does vigorous exercise have a neuroprotective effect in Parkinson disease? Neurology. 2011;77(3):288-294. doi:10.1212/WNL.0b013e318225ab66):
THIS ARTICLE DOES NOT PROVIDE MEDICAL ADVICE and is not a substitute for professional medical advice, diagnosis or treatment. If you or any other person has a medical concern, you should consult with your health care provider or seek other professional medical treatment immediately. Never disregard professional medical advice or delay in seeking it because of something that you have read on this website or in any linked article, blog or other materials.
