I have discovered over the years that a lot of us, like me, at times don’t pay close attention to what our bodies are telling us until it is blaring WARNING, WARNING, WARNING! Unfortunately, by the time it is so obvious something is wrong it may be too late. Because of many factors including personal responsibilities, we often tend to push through the pain, the discomfort, the malaise, the fatigue, as well as both physical and mental exhaustion thinking at times erroneously that we are stronger than our present discomforts. We quickly revert to rationalizing and minimizing present problems, convincing ourselves that if we muster enough will power and repeat the mantra “mind over matter,” we will be able to overcome any type of adversity physical or otherwise.
However, I have learned that avoiding or ignoring our instincts for self-preservation, more often than not, leads only to trouble as well as injury in the long run. I have been guilt of this many times. We don’t know how to say no to things that will cause us more harm than good some times because we are busy trying to prove how strong and independent we are. We have not learned to prioritize or to value ourselves above others. We have the impression that in so doing we might appear selfish, weak, needy, dependent, or that we have thrown in the towel and succumbed to our illness.
However, nothing could be further from the truth. I have been on both sides of the equation pushing myself trying to convince myself that PD does not permeate in many aspects of my life, as it does from time to time rather that I am still “healthy” and capable of willing my body to behave even when it does not feel like getting in line with the program. The outcome has been much more detrimental for failing to gauge my own limitations and heed the warnings along the road. Subsequently, I have in the past fallen many a times resulting in severely sprained ankles, bruised muscles and joints, as well as herniated discs. all because I ignored the signs and the soft voice telling me to STOP and take care of myself and the problem at hand which was anywhere from shoulder stiffness, knee and hip pain, trouble judging distances, mild shuffling, and soft voice with exertion to name a few. I have witnessed this same careless behavior in many of my patients and friends who have ended up being bed bound or hospitalized because they did not know how recognize or simply ignored the warning signs the body was sending to take note and make adjustments.
Over the years as my Parkinson’s has progressed, I have noticed my stamina and multitasking abilities to wane much quicker than previously requiring me to take larger doses if I am to stay engaged for longer than 3 hours. Whether it be physical, emotional or intellectual functioning if I don’t allow myself to rest along with an increase in levodopa, the consequences can be pretty dramatic like being so fatigued I can collapse. A few minutes of rest goes a long way sometimes much better than actually increasing dosages.
One of the biggest problems we, especially those of us with young onset PD and those of us with advanced disease, is the recurrence of pain. We have found that pain is one of the tall tale signs that PD is NOT controlled. Moreover this common recurrent symptom is of great concern to me as a doctor and woman with PD because of recent findings which suggest that women over the last 2-3 decades have experienced more deaths from pain prescription ‘non-intentional’ overdose compared to men. This is because women are diagnosed more frequently with pain (chronic) but in my experience is much more severe as well because have waited a long time to seek help. Furthermore, as we have learned over last few years is that us women with PD have greater number of negative symptoms such as depression and anxiety at its core just like other chronic disease such as MS, Migraines, and Lupus (SLE) to name but a few.
I have also talked in the past about the fact that women metabolize drugs differently and have more side effects to same dosages compared to men. Yet, the memo has not reached everyone in the medical field because most doctors (pain specialists particularly) continue to prescribe pain medications at higher doses than those prescribed to the male counterparts and used for a much longer time. One way of breaking this vicious cycle of dependence and abuse which is also putting us women at higher risk for overdosing but having greater chance for interaction with our other PD medicines leading to worse side effects such as hallucinations and delirium (confusion) throwing our PD control out the door. So, by recognizing pain early on and seeking immediate help, your neurologist/MDS will most likely be able to treat the problem without having to resort to heavy narcotics or use of pain specialist which often leads to pain meds which can be addicting and cause many cognitive problems as well, in light of our underlying PD. So let’s start by being proactive and recognizing our warning signs that we need to take it easy and nut put ourselves at greater risk of having pain.
Besides muscle Pain here are some of the more common warning signs-
One of the biggest warning signs that we are stressed or have poorly controlled PD symptoms is frequent tripping, and stumbling even if we don’t fall.
Treatment – increase PD medication dosages or frequency- But can not discard other reasons like B12 deficiency common in PD which can cause balance issues, -check b12 levels. Another reason may be difficulty seeing because of age and/or visual deficits caused by PD which can obscure objects and depth due to poor contrast visibility especially at night or low light- get prisms, walk in illuminated paths only and even terrains. Dystonia can also be a culprit either in feet or a lot of times in neck decreasing OUR RANGE OF MOTION AND LIMITING US FROM TRULY JUDGING DEPTH because we don’t realize our heads are fixed when walking- Botox works great for torticollis (dystonia of neck). Finally, make sure you rest and take a break to avoid falls
Two- muscles cramping- This can be caused by multiple things from dehydration, to poor nutrition lacking potassium, or other electrolyte abnormality such as low calcium as well as medical problems like thyroid and diabetes. (Need blood test to rule out these problems).These can be a side effect of medications such as Neupro patch when it wears off. Wearing inappropriate shoes like high heels or mules. cramps if sustained or prolonged can also be an early sign of dystonia.
Treatment – hydration, increased Medications like muscle relaxants, Botox, and dopamine. increase dietary intake of minerals like avocadoes, strawberries, popcorn etc. May want to look at some of my previous blogs on sources of different electrolytes. Make sure you wear proper fitting shoes with support & don’t walk bear footed or use flip-flops. May need custom braces along with Physical therapy and regular massages.
Three-night sweats– medications are usually the culprit in this case ( levodopa, amantadine as well as some antidepressants and blood pressure medications can cause these problems) along with other medical conditions like menopause, diabetes, thyroid disease and infections (but the latter usually have chills and fevers).
Treatment discuss medications with your physician and rule out other medical conditions. keep track of and time when sweats occur in relation to food and medication intake.Keep room temperature lower and /or use fans plus use moisture wicking sleepwear and sheets. I like things that are made of bamboo although expensive well worth the $$ since comfortable, breathable and best of all odor deterrent because a lot of the materials used in exercise wear absorb odors which are difficult to eliminate even after several washes.
Four– Abdominal pain- can be anywhere from constipation, excess gas, reflux and stomach ulcers and polyps to severe bowel blockage, twisting of bowels, and stool impaction.
Treatment– must have a bowel movement daily- use fiber, stool softener, miralax, amatiza or linzess. use of probiotics is controversial but consider taking yogurt a few times a week and if take probiotics alternate brands so as to not develop over colonization of one particular stand of bacteria which may prove more harmful for your constitution. See a gi specialist. exercise and drink plenty of fluids, if pain severe or positional seek immediate attention or if not had bowel movement in more than 2-3 days especially if taking laxatives or stool softener. Treat with antibiotics if have H. pylori and proton pump (Dexilant, Nexium, etc.) blockers if reflux.
Five- hurting jaw, popping jaw, dystonia of face. Cracking joints- joint pain especially in hands shoulder or hip can be part of PD but can also be arthritis
Treatment – Botox, anti-inflammatories, massage jaw and facial massage, increased dopamine, rule out arthritis, temporal mandibular Joint pain /disease and temporal arteritis- may need blood work, Sed rate (ESR) checked and even biopsy of temporal artery. if trigeminal neuralgia ( nerve pain of face ) treated with seizure medications and Botox.
Six– Weight gain. May be both a sign of under medication, too much stress, too much hormones-i.e. cortisol, and /or not sleeping well
Treatment-rule out sleep apnea, evaluate medications, check for thyroid and diabetes, and evaluate hormone level especially in women, treat with sleep aids if necessary or apnea with cpap/bipap. treat underlying cause.
Seven- itchy skin- not uncommon in PD
Treatment- seek dermatologist if continues but make sure liver and kidneys are working well because one of the first signs of organ failure in liver and kidney is itchy skin from toxins spilling over. since we all take beaucoup amounts of medications we are more likely to develop fatty liver and liver disease especially if taking certain medications like antidepressants which can elevate liver enzymes. Further many of the dopamine agonists as well as the Mao inhibitors can cause kidney problems hence the edema and increased blood pressure many of us experience. seek help from specialists like nephrologist gi doctor and neurologists. Moisturize and hydrate all the time- drink lots and lots of water to flush out system and also to prevent dry scaly skin. may need treatment with prescription medication for skin.
Eight– chest pain can also be seen as a cause of poorly controlled Parkinson’s symptoms.
Treatment-can be as simple as heart burn, reflux which can be treated with meds as discussed above but more seriously need to rule out heart disease. some atypical Parkinson’s plus syndromes like MSA types can have more autoimmune dysfunction causing arrhythmias which can cause Chest pain. Plus some of the dopamine agonists, Mao inhibitors and levodopa formulations can cause chest pain as a side effect directly or indirectly by causing critically elevated high blood pressure. If having chest pain, seek immediate attention – may need cardiac work -up by a cardiologists as well as adjustment of PD meds and heart medications if required.
Nine- shortness of breath- Although asthmatics are more prone to have PD, I believe that PD patients can develop asthma more frequently.
Treatment- seek immediate attention, treat for asthma as well as heart disease, most likely require PD medication adjustment. can also be a sign of anxiety and wearing off which will require antianxiety meds and rescue meds like apokyn.
Ten – increased fatigue can be commonly seen in PD patients and due to a whole host of issues from vitamin deficiency both B and D, to poor sleep, asthma, heart disease, depression, constipation, and everything in between.
Treatment-it depends on underlying cause- sometimes is just another symptom of pd letting us know we are not well controlled requiring higher dosages of dopamine and sometimes use of amantadine can improve fatigue if purely caused by PD alone.
In the end, we must learn to, listen to our bodies…take breaks exercise and implement Resting times throughout the day at least 15 -30 minutes a day.
A Healthier you begins with 3 steps:
- Self -awareness – First identify problem and be proactive about it don’t ignore!!!
- Say no to things which exacerbate the symptoms and cause you to fell bad or lead to poorly controlled PD symptoms
- Find support –always ask for help if not feeling well and have lists ready which can be easily accessed mentally with things you need help with. and don’t push your self to do things that you know are not good for you in the long run!
Remember, you can’t take care of others or continue being independent if you are not well first.
HAPPY THANKSGIVING EVERYONE!!!!