Although, we know that Parkinson’s disease (PD) does not have day to day motor fluctuations per say until late stages of the disease in which we see variability due to side effects and absorption with medication. This is because PD is a chronically progressive disease that changes slowly over time- However, all of us who live with this illness swear by the fact that there are day to day variations giving us the so-called good and bad day! These minor at times a bit more drastic changes in mobility, mood, tremors, stiffness, pain etc. is what I like to call “flare- ups” unrelated to dopamine effect such as wearing off/ dyskenisias etc.
Rather these normal variations are caused by our underlying changes in both physiology and our environment. Nevertheless, they can wreak havoc if we do not learn to recognize the triggers and address properly making our PD symptoms appear worse from time to time which can in turn drive us and our physicians batty. Since we do not live in a vacuum, depending on other circumstances in our lives like being cold due to cold weather, or too hot, or having other medical problems like the flu, or perhaps having poor sleep, and the all- important ever present stress all of which can and will make our symptoms appear worse!
How do we know something is serious vs. normal variation?
Keeping a diary helps greatly!!
- Does it happen same time every day?
- Does it occur daily? weekly?
- Does it happen before or after intake of medication?
- What make sit better?
- What makes it worse?
So how do we prevent these “flares-ups” from taking over our lives and ruining our days?
- Early warning symptoms: Recognize that PD symptoms DO NOT SUDDENLY CHANGE/ Fluctuate – if you experience sudden weakness (unilateral), numbness (unilateral), loss of vision (especially in one eye), acute vertigo or dizziness, acute confusion or sudden change of mental status; These are clear warning signs of an ACUTE underlying medical problem e.g. Dehydration, Infection ( urinary), strokes, Diabetes, etc. Need to seek immediate medical attention!! However, if tremors get worse with lack of food, stress, or increased pain and stiffness increases with cold weather then recognizing these signs of an impending flare – you can then prevent or reduce its impact on your life. Dress warmer, go south for winter, increase meds during winter, make sure eat smaller frequent meals, do yoga, meditation to reduce stress. Sometimes extreme heat can also affect people severely especially if already taking cholinergics or amantadine which are more likely to make one perspire. Therefore, the opposite is recommended- stay in shaded areas, used sun protective clothing, cooling vest and towels, stay indoors and stay well hydrated. increase hydration in extreme weather both cold and heat.
- On the move: Movement is the key to continued agility, flexibility, independence, and greater quality of life. Keep the muscles flexible find the exercise that works best for you. Not all exercises are good for every individual or recommend for every person with PD – discuss with your own physician the various options. The one thing that almost all people with PD can do regardless of stage is walking (using poles or walking on sand increases stability/ equilibrium). The other exercise, which I find is extremely well tolerated by most, is deep water therapy but sometimes this is limited by bladder issues in the PWP. The other great benefit of exercise besides reducing amount of medication is an improvement in cognition and over-all well- being . Most forms of exercise will also help decrease risk of hip fractures (which is already high in PD person’s especially women) by helping stimulate natural vitamin D which is low or deficient in the majority of PWP. Helps more if we exercise or walk outside!
- Within limits: This is the one most of us are guilty of taking for granted!!! Listen to your body!!!! If your energy level is low, slow down. Don’t push it and overdo it -you will only make things worse. I recommend 5 minute rest several times a day even when feeling well. Pray, meditate and light up your brain while you unwind.
- Full night’s sleep: Make sure that you have a full sleep evaluation (this includes filling out the Epworth sleep scale) by your physician even a sleep study if overly fatigued and sleepy to rule out sleep apnea, Rem Behavior of sleep, and period limb movement of sleep. Poor sleep is the number one factor in my experience of experiencing PD ‘flares-ups.’ reasons are endless starting with medication effect, followed by pain and depression….In this sleepiness scale the higher the number the more indicative of a sleep disorder/problem.
0= no chance of dozing 1 = slight chance of dozing 2 = moderate chance of dozing 3 = high chance of dozing SITUATION CHANCE OF DOZING Sitting and reading ____________ Watching TV ____________ Sitting inactive in a public place (e.g a theater or a meeting) ____________ As a passenger in a car for an hour without a break ____________ Lying down to rest in the afternoon when circumstances permit ____________ Sitting and talking to someone ____________ Sitting quietly after a lunch without alcohol ____________ In a car, while stopped for a few minutes in traffic ____________
- Healthy foods: Everything in moderation is the best way to maintain a balance. Eat plenty of vegetables especially dark green leafy vegetables for B12, (since PD patients have a high risk of deficiency ), salmon & nuts for omega -3-fatty acids for memory, chocolate for dopamine& serotonin, and dairy products for vitamin D (which is also important in memory).
- Team effort: Join a support group and share your experiences be a mentor, a resource, and a friend. Having a purpose and helping others makes life more meaningful.
- Knowledge=power: Get educated and become involved in your care. The more you know the better off you will be. After all, nobody knows you like you know yourself. Learn to self- advocate and be an advocate for others. This will make you feel better have less ‘flares-ups’ and become more active in your community and happier in all other aspects of your life.