“Friends LOVE through all kinds of weather, and families stick TOGETHER in all kinds of trouble.” ~Proverbs 17:17
A Midst increasing focus on women’s issues in PD, I and others are beginning to realize the burden of living with and having a chronic illness like Parkinson’s can exact on the family nucleus. Sometimes the burden can extend to close friends, co-workers, and others in the circle around the nucleus.
How then, do we decrease the burden?
The first order of business for me as a neurologist and Parkinson’s patient is advocacy. Education is the single most important factor to decrease the load of the family and of society by raising awareness of the issues which require a not just a holistic approach; but a timely one as well.
First, we must understand the symptoms of the disease (sometimes the rest tremors may not be present from the get go; yet if there is family history of PD, or history of tremors in you, or have any number of symptoms including but not limited to constipation, loss of smell, depression, bladder issues, gait difficulty, stiffness seek advice of a physician asap) in order to get an get early diagnosis followed by early treatment. This latter part cannot be underscored enough in my opinion. EARLY treatment DOES improve quality of life in the present as well as in the future!!!
Second, once diagnosis is establish and medication initiated it is important to evaluate patient in his or her natural surroundings. this means evaluating their role in the family as well as in society. understanding the impact of chronic illness in every individual is crucial to developing the right treatment plan. for instance, the plan is going to be entirely different if we are dealing with a young mom versus an older woman. also different from one that is employed especially if main provider versus someone that is retired. Single vs part of large family with good support system. Therefore, it is our duty as physicians to recognize the wide and variable effects of having PD to help you the patient build tools to best manage your situation and help you and your family cope with the illness.
Third, one way I recommend that you help your neurologists make the most informed decisions on your behalf is to have an open line of communication. after all, communication is a two-way street. Your physicians unless they have an illness themselves as I do or have had to deal with someone chronically ill in their family, they might not know the ins and outs. this does not mean they don’t care but rather lack of experience in the matter. Therefore, I suggest that at least once a year if not twice you make an appointment with your physician to discuss social needs only. This will go a long way in building a rapport with your doctor as well as getting the right treatment plan for a more fruitful life. understanding your social situation along with any co-morbidities like having migraines, high blood pressure, pre-existing depression are the pillars to a comprehensive approach to PD patient care.
The goal is to be present in your life living it fully. Sometimes we think we are coasting along just fine handling our own problems but we may not realize the impact on our family and our friends, etc. I am sure you have seen the commercial for asthma in which the woman says I rarely need inhaler rescue and they show her whizzing and being short of breath most of time. Same for us. I know that for me this true.
How many times in the past month alone have you been unable to keep your plans expected because you were not feeling “right?” There was a time I became the most unreliable person because I cancelled more functions then I attended. How many times have you missed family functions or activities or cancelled the vacation you have been waiting on for months because you could not travel?
If this strikes a cord with you then it has been happening way to much. you need to sit with your family and alone and write down the reasons then take to your physician to work together on a solution. Is it because your depressed, in pain, fatigued, embarrassed of being seen in public? Most issues have a solution, don’t wait. if you live alone and cant afford to go out talk to your doctor about meals on wheels, help in the house, a nurses aid and so on.
it is always best to write down wishes early on which can always be amended than to have no plan and wait for crisis to arise and no one knows what to do and you are to sick to make any life decisions.
Remember, the better you and your close family understands the disease the better handle you will have on the situation.
As a colleague once said: “without education you can not achieve proper control,” referring to treatment of chronic migraneurs. However, the principle still applies for those of us with Parkinson’s disease. Case in point, I believe one of the biggest problems in Parkinson’s disease is medication overuse. This is one of the main reason, I think patients have increased dyskenisias as well as increased side effects. this remains a huge barrier to break because I was trained at the cusp of new medications (dopa agonists and others that have followed subsequently) coming on board which means that physicians were accustomed to letting their patients take the medication when they ‘thought’ they needed it. even I at the beginning of my practice would tell patients it was ok to take extra.. However, I began realizing that when I asked how much med they took, how often, and for what symptoms? 1) they were overdosing and 2) often times they were taking medication unknowingly for side effects of medication NOT the disease which only worsened when took more like dyskenisias!
Therefore, my recommendation is keep a diary when you take extra medicine, the amount, the name, the reason, and what happens when you take it ..this will be a much better method of helping your physician track your symptoms and make appropriate adjustments. My philosophy is small amounts of various types (agonists, MAO inhibitors, COMT inhibitors, cholinergics, along with dopa) evenly spaced works so much better for control of side effects, mood control and decrease incidence of motor fluctuations which in turn will lead to a less burdensome life on others.
EVERY DAY IS A FIGHT. I am a Parkinson’s WARRIOR!
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