The Real Costs of Parkinson's Disease
This isn’t another statistical data report on the medical costs associated with Parkinson’s disease (PD) or another government accountability study of how the National Institutes of Health budget is spent. These things, in my opinion, are important in their own right because there are literally dozens of congressional committees and government bean counters whose job it is to keep track or crunch the numbers so to speak.
Physical and emotional effects of Parkinson's
There are more important costs associated with living with PD that often do not get discussed very much.
When a person is first diagnosed with PD, there are very little physical costs that extend to living with this disease. For many patients, most of the symptoms early on are annoyances rather than being debilitating. In fact, depending on the age of diagnosis, they often can be managed with a small dose of medication. As the PD progresses, more symptoms or worsening of existing symptoms becomes more apparent. Symptoms may include:
- Rigidity or stiffness
- Freezing of gait
The physical costs can be and should be discussed with your doctor. Your medical provider may recommend prescription medication or perhaps a gym membership or just maintaining an active lifestyle depending on the specific symptoms. The physical costs may lead to changing hobbies or learning new things. All of these vary based upon the severity of your individual symptoms. One word of advice: if your symptoms compromise your safety, you may not want to participate in your regular activity. Besides the physical costs of living with PD, there is an emotional aspect.
Parkinson’s is a very complex disease. Some have even compared it to a syndrome with multi-pronged ailments. That is one of the reasons PD is so difficult to diagnose. I highly recommend if you suspect or have been told that you may have PD or Parkinsonism that you seek the opinion of someone who specializes in movement disorders.
There is a psychological effect to living with PD and dealing with all the symptoms that go along with the disease or any chronic disease for that matter. PD affects people differently and their response to how the brain processes having a chronic neurological illness is different. I would have to say, a lot of how we as individuals relate to PD is how it affects our daily routine.
- How much does PD change my lifestyle/social life?
- Do my symptoms get in the way of my career or job responsibilities?
- Do I avoid certain public encounters? (grocery shopping, department stores, lunch dates)
Often the longer you have PD and the more advanced the symptoms, the tendency to withdraw increases; the cost? Depression, anxiety, apathy and more. Suffice to say, this doesn’t happen to everyone living with PD. There are steps you can take to avoid the negative emotional aspects.
- Enlist an accountability partner (e.g., a friend, care provider, or family member).
- Stay active! (Keep moving through exercise, walking daily, running, dancing or biking) Always communicate your activities with your doctor!
- Play games that engage the brain (memory jogging games, puzzles, trivia, etc.).
- Nutrition is important to mental health.
Always remember, in my experience, when you fail to stimulate your brain, you begin to fail. One thing to remember is that the therapeutic outcomes of the above mentioned activities may not be enough to overcome all symptoms. This is when a neuropsychiatrist may be of some help. There is not a "one solution fits all" scenario, but find a combination that works for you. Diet and exercise is a good place to start and there are professionals that specialize in nutritional health.
The physical and emotional costs associated with living with PD can be small or very expensive. It is up to you and your medical team to choose the best platform of care and management for optimal health. Doing nothing is not an option. You can only hide from PD for so long and then the costs associated with advanced care is unimaginable. Take charge as soon as possible and fight PD with all your strength and might. Keep battling my friends!
Do you find music to be an important factor in your life with PD?