Source: The cost of Parkinson’s and other chronic illnesses…
Hypercoagulation and Parkinson’s disease: Are women more at risk? by Dr. De Leon
Hypercoagulation and Parkinson’s disease: Are women more at risk? by Dr. De Leon
Today, I will talk about something that we know little regarding the incidence and prevalence within the Parkinson’s population. This merits further investigation in my medical opinion because the truth is that Parkinson’s patients if not all a subset of the population may be at higher risk for having coagulopathies like clots in legs, lungs, heart and brain. I myself had really never made a link or thought about much until I began working closely with women with PD. first, came the realization from the work of Dr. A. Willis ( neurology assistant professor Department of University of Pennsylvania) whose worked revealed a larger incidence in strokes in older women with PD compared to men. Then, I had a mini stroke and a mild lung clot ( PE-pulmonary embolism) last year which freaked me out especially since there was no “cause” found for this other than having traveled a bit that year but never had any leg clots. So the question remained why did I have this? Thought perhaps since I had had cancer that this was a sign cancer was back as it often occurs but thank goodness I am still cancer free. No other clot factor abnormalities found like protein S and C deficiency, factor V lieden, anti-phospholipid antibodies, and anti-thrombin all of which play an important role in coagulation. (These all need to be tested in young people who are hypercoagulable/have clots independent of whether or not have PD).
Surely, over the last year as I have been pondering this fact, I have come across 6 other women with PD who related to me also having PE’s and much bigger than mine. None of them had any other issues besides PD. Certainly 7 people (all women) including myself is not a very significant number but this was just in passing that I discovered this. I have not done a formal survey nor has one been done in this population as far as I know. Merely perusing through the web I found 87 different discussions regarding blood clots and Parkinson’s. I think there might be some validity to this risk or at least worth investigating further.
But, looking at what we know – First, patients who have Parkinson’s and GD mutation for Gaucher disease are at higher risk of having coagulation problems. This is because these patients not only produce less factors needed but also experience a chronic consumption of coagulation factors leading to frequent infarcts of the spleen and bone marrow. However, despite these abnormalities in coagulation, no evidence of increased coagulation (hypercoagulability was found according to one study.
Second, in a 1994 repot PE embolism was found to be second to pneumonia as cause of death in 60 autopsied patients with parkinsonian symptoms. Although, we don’t know much else about these patients. These could have been patients that already had hypercoagulation problems causing strokes leading to them to have a diagnosis of secondary Parkinson’s/parkinsonism.
Third, a study done in 2013 looked at the risk of deep venous thrombosis (DVT) in 114 asymptomatic Parkinson’s patients in relation to abnormal posturing in particular looking at the legs. They found 23 patients (20%) to have presence of clot. More importantly, half of those who had clots also had camptocormia (also known as bent spine). Furthermore, they discovered a correlation of greater incidence of Dvt’s with predisposing factors like diabetes.
They concluded that PD patients who have postural abnormalities are at higher risk for clots in legs and should be screened especially if they have other risk factors.
Fourth, we recently discovered a link between migraines and Parkinson’s. Researchers found that people with auras (that’s me), had a nearly 4 fold increase likelihood to report 4 out of the 6 PD symptoms they evaluated and those without aura had nearly 3 times increase. Furthermore, people with PD who have a Lrrk2 mutation also have an association to migraines having an abnormal calcium channelopathy. Moreover, in an article published last year, we have discovered that migraines with aura are 2.4 times more likely to cause an ischemic stroke, plus 3 times more likely to have resulted from a clot in the heart. Plus, back in 2008 the medical journal of the academy of neurology published an article stating that people with migraines are also more likely to develop blood clots in veins (legs and lungs). 574 patients were interviewed for this study out of which 111 were found to have migraines. Out of this population of migraneurs, 19% were found to have multiple episodes of venous thrombosis compared to 8% without migraine, making a pretty good case for increase risk of venous thrombosis in those with migraines.
Now, looking back at my small number of patients 5 out of 7 have migraines, I have migraine with auras. the other 2 are not known whether they have this problem or not , and at least 2 of the 5 have had multiple venous thrombosis including a PE.
Now, we simply consider the fact that migraines occur in 12% of Americans and there are at least 2 million people with Parkinson’s. We are looking at a very large population of roughly 240,000 people who have both and are at potential risk for strokes, cardiac clots and venous thrombosis like Pulmonary embolism. but, because women are at greater risk of having migraines in a ratio of 3 :1 we are more likely to see coagulopathy in women who have both migraines and Parkinson’s. Although, much more studies need to be done based on these observations I would caution that if you have migraines and PD you discuss possibility of venous clots especially if there are abnormal posturing, are bed bound or wheelchair bound, are sedentary have, or other risk factors for clots or have migraines with aura. May consider possible prophylactic medication like aspirin to begin with.
if you have swelling in leg especially if painful and hot seek immediate attention.
Sources:
http://www.medicalnewstoday.com/articles/282678.php
https://www.ncbi.nlm.nih.gov/pubmed/23843975
http://europepmc.org/articles/PMC3070297
copyright@july2017
All Rights Reserved By Maria De Leon MD
3 Rules to Avoid Confrontation with your Partner when Chronically ill: By Maria De Leon
Is the use of complement alternative Medicine (CAM) a good choice for PD? By Dr. De Leon
Is the use of complement alternative Medicine (CAM) a good choice for PD? By Dr. De Leon
I thought that it was important to cover this topic since I read and hear many of you discussing the viability of these alternative treatments. Especially since there is a growing interest in our community to resort to use of complementary and alternative medicine (CAM). This means using health and treatments for maintaining wellness previously not employed by western medicine. therefore some people use these treatments in place of (alternative) or in conjunction (complimentary). the goal of these therapies is to focus on the person as a whole- which I and most doctors are in favor of since there can be no healing of the body if the emotional and psychological aspects are not first addressed. However, there is a trend in this country and around the world to forgo conventional western medicine so many are now using the term “integrative medicine.”
This has increased in the last few years, up to a 40 percent and I suspect that as the cost of medicines, healthcare, and number of people with chronic progressive diseases like Parkinson’s, Alzheimer’s and so on increase so will the use of these treatment modalities. Thus, I felt it to be my duty to discuss exactly what we are dealing with in order for us to become informed consumers and make the best treatment choices.
It is also extremely important to note that in the same time period the rise of liver disease and death due to liver failure has increased from intake of supplements. One of these popular deadly supplements is Kava Kava used for stress and anxiety relief. This is because unfortunately “natural” DOES NOT necessarily mean SAFE! Not only are these products not safe but for those of us who have chronic illnesses and take many other medications or have other concomitant illnesses like high blood pressure, diabetes etc. these products can interfere with the effect of those medications or worsen those other symptoms. For instance, I was extremely interested in finding some weight lose substance especially if it was “natural” since all the prescription medicine interfere with Parkinson’s directly or with the medications. I though that perhaps the popular Garcinia Cambogia would work so I bought a bottle like the rest of millions of people. First, remember that these products are not FDA approved so have variation of amount of needed extract ranging from 50 %to 80% of 72 pills tested. However, if you read the extremely fine print it contains the same chemicals used in many of the other weight loss meds which are contraindicated in people with Parkinson’s and if you should take it could cause severe serotonin syndrome and death. Needless to say that bottle went straight into the trash.
But, you must always be savvy when using any “alternative” herbal or other treatments. remember, there is NO cure for PD. If there were I would have told you and the whole scientific community would be shouting it from roof tops! Trust me, it would not be a secret. Do not fall for sensationalized news and cure all’s!. Beware of the power of the placebo effect and also of charlatans who take advantage of people in need and in pain. The mind is extremely powerful. Mind over matter we always say. Is true if we believe something so strong we can make it happen for a short period of time. This is why patients that participate in research studies do better over all. However, these studies are not controlled or double blinded and usually last 6-8 weeks the exact time before the placebo effect wears off. Do Not purchase anything that promises a quick fix or a cure! No such thing exists. if it sounds too good to be true than it probably is. however, there may be some supplements that may be beneficial for certain individuals although in larger studies have not proven to be significantly better to treat disease than placebo. These supplements include Coenzyme Q 10 – is expensive and should buy from Natures brand only and must take at least 600 to 900mg – some people cant tolerate due to nausea. I was one of those people. but, this supplement has been used effectively and safely in many other neurological illnesses by me and my colleagues. other than this I really don’t have any other supplements that I would recommend consistently due to lack of evidence or lack of safety like many of the mucuna puriens out here which are not regulated. Plus, we do not know the long term effects of these substances. The marijuana as a potential treatment, as I spoke and blogged previously, is still extremely controversial because there are so many different types if you will and most are synthetic not natural- so we don’t have the whole story. However, studies have indicated that marijuana can worsen sleep cycle and depression 2 of the biggest problems in PD. At present, a study of marijuana oil is being conducted at university of Colorado for those interested in this topic further.
Now, within this realm of CAM we have treatments like
- Mind-Body Medicine (e.g. prayers, mindfulness, meditation, art therapy)
- Whole medical systems (e.g. homeopathy, ancient healing systems -acupuncture)
- Biologically based practices (e.g. coenzyme Q)
- Manipulative and body based (e.g. massages, yoga, dance etc.)
In the end, it is essential that you have a team of professional who you trust and will listen and treat body, mind. and soul. We do know and have evidence that holistic treatment works best for over all well being. I am proof of this. However, what ever complementary, alternative, or integrative treatments you opt to do you must maintain your doctor informed at all times and make sure he or she is on board with the plan so they can guide you through and avoid the perils of possible liver toxicity, overdose, or serotonin syndrome. But, also to ensure that you are being safe and not hurting yourself or making your illness worse. Remember, we do have many new drugs and initiating early treatment has proven to be most effective increasing quality of life and decreasing disability. So why waste time with unknowns (medications, herbs, remedies, treatments) that can be costly and potentially harmful in both the long and short term?
My philosophy all good things in moderation. This includes laughing, dreaming, spending time with friends and family and being useful to others as well as eating and sleeping well with an active life style of both mind and body.
love to hear your opinion on the subject…
thanks
Subtle signs that show you have too much stress in your life: By Dr. De Leon
I have decided that “stress does not go with my outfit. so, I am breaking up with it!” you should do the same….. after all is not the stress that kills us but our reaction to it.
I write to deal with my own stress although sometimes I just need time away from everything and everyone for a bit to recharge my body and mind… this is crucial part of dealing with life’s stresses.
We all know that living with a chronic progressive neurological disease like Parkinson’s can be quite cumbersome all on its own. but, this does not shelter us from other life stressors like dealing with family, financial burdens, ailing parents, teenage issues and so on.
I have found that the greatest stressor for me in living with an illness is the disruption in my routine weather is a positive force or not. This disruption, especially if extended, throws me into a frenzy from which it takes a few days to a week to recover. During this recovery time, like today, I can be a bit of a bear to those near me. When I am physically exhausted, worse if there is also an emotional component, I tend to feel out of sorts and extremely irritable. What makes it worse is knowing I need down time to recover but not finding the space/time to do so because there are family demands on hand which must be taken care of. I absolutely hate when my husband is off when I am in desperate need of respite because although he does his own thing and does not put too much pressure or demands on my time, there is that feeling of disappointment he gets because I don’t have my act together. then comes the guilt on my part for neglecting him when he gets such limited time to spend with me and my daughter doing family activities. Even though, I am absolutely exhausted and am in dire need of sleep, I feel obligated to get up after only 3 hours of sleep because he and my daughter have started morning early with a 6 a.m. run and are ready for breakfast by 7 a.m. And thus, the day begins with me barely functioning, stumbling, and feeling quite picked only to be made worse by my daughter asking me complex questions half an hour later even before my medicine has had a chance to kick in. so I loose it. Worse since she got up so early, she too is a bit irritable. I decide its time for everyone to go to their quiet place and recuperate.
But, why do we allow ourselves to get this way?
Surely, there are signs that warns us of impending melt down.
Failure to recognize the signs or ignore them as I do when I am in the midst of traveling to speak, finishing a book, dealing with mom’s car problems (I don’t even deal with my own) and other family drama can be extremely detrimental.
What are the signs that speak volumes of our need to calm down and regroup? the thing is that these same symptoms can be considered non-motor symptoms of PD which can cloud the picture even further. But, with a little common sense and careful observation of our symptoms we can learn to differentiate and change our course of action to diminish our stress levels.
First, increase of head aches: who does not have pain in the head especially when hungry, tired, sleepy, and with neck dystonia? massage your temples and your scalp and neck even use some mint oil extract and place in forehead and temples. This will sooth you. get facial and scalp massages. if cant afford this and hands too weak to massage yourself use a lemon and rub around your head, neck. plus citrus aroma will also be soothing.
Second, jaw pain: may not be related to dental problems or oromandibular dystonia but rather our involuntary clenching of our jaw when stressed. this also can trigger headaches. Relax your mouth and keep teeth apart when dealing with stressful activities – periodically check by stopping what you are doing and relaxing your jaw if it feels better -you are clenching and keeping it too tight. Give it a bit of massage at least a couple of times a day. Insert one finger/thumb inside your cheek and place your thumb/index finger on the outside and rub till you feel all the knots disappear. (don’t forget to wash hands first)
Third, skin irritation. Do you suddenly feel like your skin is itchy all over? is it breaking out? although we know that PD can cause skin dryness especially in scalp and also cause eczema. if you find yourself scratching a lot all of a sudden like I have been these last few days without having changed anything to your medical regimen, diet, water intake, or your hygienic products then most likely due to stress.
Fourth, Bizarre dreams. Once more, we know strange and vivid dreams are part of the disease. But, if these have been under control and nothing has changed in regards to other motor symptoms nor medications and not being consuming alcohol before bedtime, this can be another sign. usually these drams are nasty and disturbing.
Why should we care about controlling our stress?
It is important to deal with the stress because uncontrolled stress can lead to depression, we are already at risk with PD. Also, it can lead to increase weight gain by allowing our bodies to store more fat. It also increases our blood pressure. Lowers our libidos and increases insomnia both of which are already a problem. Plus, it decreases concentration and increases memory problems.
Ways to treat stress:
#1 make time for yourself– so after the melt downs – I excused myself and went to bed. nothing like a good refreshing nap to restore clarity. Do things that make you happy- I go to movies, shop, read, sing, and go out with my girlfriends.
#2 Eat well– do not skip meals or skim up on nutritious meals because these have the power to reduce the effects of stress and stir you away from sugary cravings. home cooked meals are the best- cook when you feel best and store the food. I cook at night often. Cooking lasagna in oven as I write this blog.
#3 Move about– find way to release some endorphins- shake, dance, jump, walk, exercise. I love dancing and singing best way to reenergize. Plus is a load of fun if you do with those you love like your children or spouse.
#4 Sleep- This is the second most crucial after making time for self. talk to your doctor if having problems may need sleep aid ( e.g. sonata, lunesta, melatonin), antidepressant ( e.g. Elavil, remeron), antianxiety (e.g. klonopin), or antipsychotic ( e.g. Seroquel). I personally take klonopin otherwise I could not have restorative sleep. You will feel so much better after a good night sleep and you other PD symptoms will also improve.
#5 Don’t forget to breath! when you find yourself getting completely overwhelmed, stop and close your eyes and focus on your respiration until is calm. I do this at least once a day. problem is remembering to do this when I am busy chauffeuring everyone around. working on it just like I do my stretching in the car even when driving- I must learn to quiet my breathing even when I find myself in a noisy crowd or driving.
So lets learn to stop reacting to the stressors in our lives rather become proactive in preventing and changing our attitudes by letting go of perfect and nonessential things which do not contribute to our well being.
copyright@2017
all rights reserved Maria De Leon
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