Yes, I know. I’m well aware that my child is screaming. Not just a regular scream, but an ear-piercing, sanity-shattering screech. Even if I wasn’t seeing and hearing it, I would know by the expression on your face.
Clearly, you have raised your children better than me.
That is what you were wanting to say, right? There certainly can’t be any other purpose to you stopping in your tracks to stare or elbow your companion or better yet — give knowing looks to other shoppers passing by.
I have no doubt that you have wonderful, well-behaved children. Grown, tax-paying, law-abiding citizens who would never have dreamed of screaming like this in public when they were children. Judging by your expression and utter exasperation, you’ve never hesitated to let them know who was boss.
And I know that you did your best with your children, that you loved them, and want all children to have a solid upbringing in which to start their lives. You are, in all probability, a good person. You probably don’t mean any harm.
This is what complicates what I want to say to you. Because, despite my anger towards you, I happen to have been raised well too. I don’t want to be ugly, even though right now I feel like it.
Because I know some of that anger is misdirected. It is misdirected because I, too, have stood in judgment of someone like me. I, along with almost everyone, have stood in public and watched a scene like this one play out and thought to myself, “Clearly she has no control over her children. When I have children, mine will never behave like that.” I, like most people, wasn’t quite as obvious about it as you. I didn’t stare or make comments that could be heard. But I was every bit as decided. So, some of my anger is really directed toward Human Nature, who refuses to be put in its place.
The nice thing about human nature, however, is that it can be overridden. And all it takes is but a single experience, a single human interaction, to the contrary of your own strongly held convictions. Then presto whammo — you are a new and hopefully improved person.
Let me introduce you to my child. Like you, I marveled at the miracle of life upon becoming his mother. Like you, I rocked, burped, and inhaled his sweet baby scent and thanked God over and over for the gift of him. Like you, I had certain dreams for my child. There your path and my path diverged somewhat.
My precious child is autistic. Yes, I’ve seen Rain Man, and, no, my son is not likely going to be a great card counter. The truth about autism is that it encompasses a wide spectrum of abilities. And, like you and me, every autistic child who has it is different from the next. Yet they do often share some similar traits – sensory overload and meltdowns are one of them.
Every person on the planet has what I think of as an internal alarm system. Most of us have ours in good working order. But some people with autism have what I like to call a hair-trigger alarm system. Theirs can go off with what seems to average folks like little to no provocation. There IS always provocation. Non-autistic people simply aren’t as sensitive to seeing and hearing the triggers, and that’s when the alarm goes off. And when it does, it’s loud. Everyone in the vicinity wants nothing more than to have it turned off, including the people who love them. When you see me “placating” my child and “giving in” to his tantrum, I’m really just desperately looking around for the alarm key or trying to remember the right code to turn off that blaring alarm. It isn’t his fault. And, no matter how upsetting it is for you, let me assure you it is that much more upsetting for him.
I’m sorry that you haven’t had quite as pleasant of a shopping trip as you had anticipated. It hasn’t been so pleasant for me either. Problem is — I have to feed my family, deposit my paycheck, pick up prescriptions, etc. just like you do. And, unfortunately, no one arrived at my house today to watch my child so that his autistic behavior wouldn’t upset anyone in public. I have to leave the house and so does my child. Because I have to teach him about the world. I have to let him practice controlling his alarm system. So that he, too, can possibly be a productive citizen making come true all those dreams I had for him when he was so small.
With so many advances in early detection and therapy, many of us will be able to see most of those dreams come true for our unique children. And for some of us, our dreams will have to change for our children. We may need to re-define happiness and success. For life is like that. We constantly have to reevaluate our expectations of ourselves, others –and, sometimes, even the grocery store.
I’m hoping that your single human interaction with me has given you an opportunity to be a better person. For, with 1 in 91 children being diagnosed with autism now, you are going to have a lot more opportunities to make a positive impact in the life of someone like me. All it would take would be a smile, a pat on the back, or a “Bless your heart, honey, hang in there” to refill a stressed out parent’s reserve of patience and calm. You could be the bright spot in our day. And, then, if you want, you are welcome to ask all the questions you want. Your curiosity doesn’t offend me in the least. Most of us aren’t the least bit upset to talk about our kids – any more than you are. If anything, it is an opportunity to educate and dispel myths.
And, maybe, just maybe, you will be standing there when the alarm gets turned off. Maybe you will get to see what every mother wants the world to see – the wonderful personality of her child, in our case hidden behind a mask of fear, anger and frustration.
We all deal with anxiety in some form or another, whether it’s when you’re pulled over by the cops or about to give a speech in front of a crowd. But for some, anxiety is a much stronger, more fearsome force—one that never goes away. But what is anxiety exactly, and what’s going on in your mind (and your body) when anxiety strikes? How do you cope when it takes hold?
The National Institute for Mental Health (NIMH) says that over 40 million people in the US over the age of 18 suffer from some anxiety-related disorder, and those are just the people who have been diagnosed, or whose symptoms fit into a pre-described condition. Millions more go undiagnosed.
On the other hand, anxiety itself is a natural human response that serves a purpose. Our goal shouldn’t be to dismiss it entirely, just to make it a healthy, manageable part of our lives. Even if you don’t suffer from an anxiety-related disorder, you’ve likely had to deal with it and cope the best way you know how. Anxiety is part of our world, the same way stress, sadness, and happiness are, but the key is understanding how to cope with it, and how to keep it from becoming unhealthy.
To help us get there, let’s talk about what exactly is going on in your brain when anxiety strikes, how it impacts us, and then what we can do about it, with the help of some experts.
What Anxiety Is, and How It Differs from Stress
Put simply, anxiety is a sense of fear and apprehension that puts you on alert. Biologically, it’s meant to put us in a heightened sense of awareness so we’re prepared for potential threats. Unfortunately, when we start to feel excessive anxiety, or we live in a constant state of anxiety, we’re in trouble. Our bodies never turn off our fight or flight response, and we live with the physical and emotional effects of anxiety on a day to day basis, even when there’s no reason or cause for them.
On its face, anxiety can look like stress; but the reality isn’t so simple. Anxiety can arise as a result of stress, but stress can manifest in other ways. Stressors can make a person sad, angry, worried, or anxious, while anxiety is specifically that feeling of fear, dread, and apprehension we mentioned. You may never even know what’s causing your anxiety, or in some cases, it can manifest on its own, without any real “trigger” or cause. Stress is often caused by external influences, while anxiety is an internal response. That’s part of what makes anxiety intrinsically different than stress, and also what makes it so difficult to manage.
What’s Actually Happening In Your Brain When You Feel Anxious
You know the feeling: That tense sensation in your stomach, the heightened sense of awareness you have about everything going on around you, the slight fear or sense of dread—that’s anxiety. Before your body feels the effects however, your brain is already at work. The National Institute of Mental Healthguide to anxiety disorders also offers this description of the neurological processes at work:
Several parts of the brain are key actors in the production of fear and anxiety. Using brain imaging technology and neurochemical techniques, scientists have discovered that the amygdala and the hippocampus play significant roles in most anxiety disorders.
The amygdala is an almond-shaped structure deep in the brain that is believed to be a communications hub between the parts of the brain that process incoming sensory signals and the parts that interpret these signals. It can alert the rest of the brain that a threat is present and trigger a fear or anxiety response. The emotional memories stored in the central part of the amygdala may play a role in anxiety disorders involving very distinct fears, such as fears of dogs, spiders, or flying.
The hippocampus is the part of the brain that encodes threatening events into memories. Studies have shown that the hippocampus appears to be smaller in some people who were victims of child abuse or who served in military combat. Research will determine what causes this reduction in size and what role it plays in the flashbacks, deficits in explicit memory, and fragmented memories of the traumatic event that are common in PTSD.
The feeling of anxiety is part of your body’s stress response. Your fight or flight response is triggered, and your system is flooded with norephinephrine andcortisol. Both are designed to give you a boost to perception, reflexes, and speed in dangerous situations. They increase your heart rate, get more blood to your muscles, get more air into your lungs, and in general get you ready to deal with whatever threat is present. Your body turns its full attention to survival. Ideally, it all shuts down when the threat passes and your body goes back to normal.
Where Anxiety Comes from and Where It All Goes Wrong
The effects of stress are well understood, but where does anxiety come from? How do we know that it’s time to be “anxious,” and where is the line between “feeling anxious” and “suffering from anxiety?” We sat down with clinical psychologist Jeffrey DeGroat, PhD and Roger S. Gil, MAMFT, to find that line.
Dr. DeGroat explained that there are a number of psychological theories as to why anxiety exists. There’s the neurological (which we mentioned above), and the psychoanalytical, which describes anxiety as battle between the id, ego, and superego. In this battle, he explains, “anxiety serves as a danger signal to an individual’s ego and/or superego that an individual is at an elevated risk to act upon an unacceptable id impulse. In the face of this anxiety, an individual’s ego and/or superego respond by attempting to manage an individual’s id impulses through elevated means.” Essentially, anxiety is a warning sign that you’re about to do something you may not want to. There’s also the cognitive theory, which suggests that anxiety arises when a person’s cognitive distortions, or irrational thought patterns, make them see everything as a physical threat, whether it’s an actual physical danger, an annoying coworker, or a police officer on the side of the road. In behavioral theory, anxiety is a learned response due to exposure to frightening or stressful situations.
Regardless of which theory you subscribe to, it’s unhealthy when those instincts are turned on constantly. Your body’s stress response is something designed to be engaged when needed and disengaged; and constant anxiety keeps us alert and on edge all the time. Persistent anxiety, however, is a problem.
Gil explained that whether it’s caused by genetics or being brought up in an environment conducive to anxiety (as in, loud environments or parents and teachers who yell all the time), the problem emerges when your body and brain become “wired” to be on the lookout for potential threats that could come from any direction at any time, real or imagined. Anything that could cause an undesirable emotion, he explained, whether it’s fear, frustration, or doubt, could be a trigger for anxiety—and once you develop thinking patterns that reinforce every event in your life as a threat, it becomes a never-ending cycle.
Both gentlemen agreed that it’s an issue when you recognize that your anxiety doesn’t seem to go away, and you’re living with it on a daily basis. This is easier for some people than others though—if you’ve been suffering from anxiety for so long that it’s just part of your personal norm, you may not even recognize that it’s an issue, as Gil explains:
Many people have lived in an anxious state for so long that they don’t know any other feeling so they are unaware that they are suffering from persistent anxiety. Recognizing anxiety isn’t easy in these types of situations however identifying its red flags is a good way to start. Are you pessimistic about the most innocuous situations to the point where it keeps you from taking risks? Do you find your mind racing to what possible negative outcomes there could be? Do you immediately attribute some external circumstance to a positive outcome that could be seen as the result of your efforts? If your answer is ‘yes’ to these questions, then you may suffer from persistent anxiety.
For some people, anxiety is situational. It’s normal to feel nervous at the prospect of having to speak in public. It’s not normal to feel anxiety about having a mundane conversation with your barista. Situational anxiety is one of those things that we can only overcome by confronting it. Generalized anxiety is something that can only be coped with by trying to rewrite the pattern of thinking that elicits it.
Regardless of whether you’re living with anxiety or suffering from an anxiety related condition, there are ways to deal with and lessen anxiety’s impact. It starts with recognizing the effects of anxiety, and then learning the right ways to cope.
What You Can Do About Anxiety
Once you’ve recognized the effects of anxiety, it’s time to do something about it. You don’t have to just try to keep your head above water. There are plenty of tricks and techniques you can use to ease yourself out of an anxious state or defuse anxiety when you feel it rising. Here are a few.
Turn to Relaxation Techniques: Music, Meditation, Exercise, Your Personal Rituals
Learning a few good relaxation techniques will serve you well. For example, simple paced breathing may sound too easy, but it’s a great way to coax the body into a more relaxed state. It’s something you can do at your desk at work, in your car, and before or after an event. Breathe in for four seconds, and then out for six. Count in your head, and focus on your counting and the sensation of your breathing. Repeat as long as it takes to relax a bit.
Dr. DeGroat suggested visualization as a relaxation technique; which he also mentioned as a coping mechanism for stress. Imagine that you’re in the most relaxing environment that you can possibly think of, whether it’s at home in bed or on the beach in the tropics. Wherever you think you would be most relaxed, stop and really put yourself there. If you’re at the beach, he explained, ask yourself how warm it is, and whether there are clouds in the sky. Are you alone? Is it quiet, or can you hear the ocean? The goal here isn’t just to paint a pretty, relaxing picture in your head, but also to get your brain working on those details—the more you do, the farther away your mind will be from whatever’s triggered your anxiety.
You can get a similar benefit from music, exercise, or meditation. Relaxing music can take help take your mind off of your anxiety, or help you refocus after an anxious spell. Exercise is similar, but instead of just taking your mind away, it actually has a neurological benefit (as well as a physiological one). Gil explained that the endorphins released in our brains during exercise make us happier, and the feeling of accomplishment we get from regular activity can help curb anxiety. Meditation—especially guided meditation—can also help, since the entire point is to calm the mind and dismiss the errant thoughts that lead to anxiety and stress. Meditation can help you focus on your surroundings or be mindful of the present, instead of letting the background seep to the fore.
Finally, turn to your own relaxation rituals to take the edge off of your anxiety.If you don’t have any, create some. They can do wonders for your mental and emotional health, and making sure you have positive habits and rituals you can turn to when you’re stressed or anxious will make sure bad habits don’t take root.
Track Your Mood to Identify Patterns
We’ve talked about how useful mood tracking can be, and how to get startedbefore, but Gil explains that it’s helpful for more than just clearing your mind and getting thoughts off your chest. It can also help you identify patterns and the underlying causes of your anxiety:
Once a person is aware of an anxious thinking pattern, they can begin to work on interventions to manage their anxiety. One of the first things I have clients do is to keep a ‘thought journal’ of thoughts that trigger their anxiety (i.e. their body’s limbic response to a potential threat). Many times we find that there is a pattern to these thoughts. Anything from the time of day to particular individuals can be a trigger. Once a pattern is identified, then the person can be proactive and make plans for when these triggers are on the horizon.
Does your boss calling you into her office make her nervous? Then recognize this and begin to challenge the thoughts that are making you anxious. For example, tell yourself that you have completed all of your obligations and have done nothing wrong (assuming it’s true, that is). Challenge the anxiety-provoking thoughts by telling yourself that you have not done anything that would warrant a negative conversation (again, assuming that’s true).
Then come up with a “positive outcome thought” by telling yourself that your boss could be calling you in to praise you. While this exercise may not eliminate the anxiety, it will probably help with preventing you from becoming a nervous wreck. In other words, the negative thought train should slow down and not end up taking you to Panic-ville.
For example, if you suffer from social anxiety or awkwardness, keeping a thought journal like this can help you identify the types of situations that trigger your anxiety. If you can paint a clear picture, it’s easier to find methods to deal with respond to those scenarios positively.
Talk to a Professional
Talking to a mental health professional (not a general practitioner) about your anxiety is an important step to learning how to cope. Many of us deal with anxiety on a regular basis and just blow it off because we don’t want to be perceived as “neurotic,” but the truth is that more people suffer from anxiety disorders—or at least persistent anxiety—than you may realize. If you’re having trouble dealing with it on your own, see a mental health specialist to talk things out. If you’re worried that mental health services cost too much money or may not be covered by your insurance, don’t worry, you still have options.
Gil also suggested that you not rule out medication for anxiety. Many people can see a serious benefit from anti-anxiety medication, but he suggests only opting for it in conjunction with talk therapy:
If a person suffers from persistent underlying anxiety and they find that they cannot deal with it on their own, seeing a psychiatrist can be helpful because there are medications that can help their minds stabilize their moods. Coupled with talk therapy (often with a properly-trained therapist), medication is very effective at managing anxiety. Eventually, many people are able to overcome the negative core beliefs that trigger their anxiety and may be able to stop taking medication altogether. I often tell people to do the medication AND therapy thing (not just the medication thing) because the therapy could help them develop behavioral interventions to manage and/or prevent anxiety. Relying solely on medication is like taking insulin for diabetes… it’ll manage your symptoms but it won’t make you any better.
Ultimately, that’s an individual decision to be made between you and a mental health professional that you trust, but regardless, if you find that you’re having difficulty coping with anxiety, see a professional who can help.
Don’t Try to Suppress Anxiety, Learn to Cope Instead: This Isn’t a Willpower Issue
Finally, it’s important to remember that anxiety is a natural human response. If you’re struggling with it, your goal shouldn’t be to just make it go away, that’s unrealistic. You can’t just will anxiety away—if you could, no one would have to deal with it.
As for suppressing anxiety, that’s like expecting your body to not get hungry after not eating for a few days. Anxiety is a normal and necessary emotion that is there to protect us. The key is to identify “unnecessary anxiety”. Unnecessary anxiety can be managed with preventative measure (i.e. exercise and meditation) and by challenging the veracity of the anxiety-provoking thoughts (like CBT does).
Gil explained that your goal instead should be to learn to cope with it and minimize it, and develop the mechanisms to handle it, get your mind off of the things that make you anxious, and go on with your life. Some of the tips we’ve mentioned will hopefully help. If you see a friend or a loved one who’s suffering from anxiety, Dr. Degroat offers these tips:
Talk with them, let them know you’ve noticed they seem to be stressed recently and you’re available to talk if they want. People who are experiencing anxiety may avoid socializing because of their overwhelming worries, leading to feelings of loneliness. If you have a friend who is withdrawing, check in with them often, inviting them to get together frequently. While they may often turn you down, just knowing that they are invited can help them feel more connected. If your friend’s anxiety appears to be significantly interfering in his or her life (failing school, no longer socializing, talking about taking their lives), I would immediately contact a crisis hotline,mental health professional, and/or family members of your friend.
Of course, entire books have been written on the topic of anxiety and anxiety disorders, and we could go on describing their causes and potential treatments. Hopefully some of these suggestions can help you deal with anxiety, or identify it in your friends or loved ones so they can get the help they need to cope. Many people who suffer from anxiety disorders or just live with anxiety from time to time are highly functional, so don’t think that anxiety is something you can necessarily see on someone’s face. It can also often be coupled with depression or other conditions. With the right attention, learning to cope with and minimize unnecessary anxiety is something we can all do.
1. The jury is in on fibromyalgia. It’s a real condition affecting perhaps 1 in 50. The vast majority are women, with middle age the peak time for onset. It’s a chronic disease but not a progressive one. The causes of fibromyalgia remains mysterious, but consensus holds that it’s a process of central sensitization, by which the brain comes to feel normal sensations as painful.
2. The great difficulty has always been diagnosis. But we have clear and simple critieria, from the American College of Rheumatology. Don’t be shy in making the diagnosis — if patients have prolonged widespread musculoskeletal pain not explained by another condition, and pain on palpation in 11 of 18 specified sites, they have fibromyalgia.
3. These sites are (all bilateral): occiput — at the suboccipital muscle insertions, low cervical — at the anterior aspects of the intertransverse spaces at C5-C7; trapezius — at the midpoint of the upper border; supraspinatus — at origins, above the scapula spine near the medial border; second rib — upper lateral to the second costochondral junction; lateral epicondyle — 2 cm distal to the epicondyles; gluteal — in upper outer quadrants of buttocks; greater trochanter — posterior to the trochanteric prominence; knee — at medial fat pad proximal to joint line.
4. Press each point hard enough that your thumbnail blanches (about 4 kg). If this elicits real pain, not just tenderness, it’s positive.
5. There’s a lot of exclusion to do when diagnosing fibromyalgia. Your investigation should include FBC, LFTs, ALP, CRP, ESR, CK, calcium and autoimmune screening. One disease that’s especially tough to differentiate is polymyalgia rheumatica. But this typically manifests extreme morning stiffness, so much that patients have to roll out of bed.
6. Patients may be bothered by noise, light, alcohol, or everyday bodily sensations. The pain is not a symptom of actual musculoskeletal pathology. The clinician must find a way to tell the patient this without saying “it’s all in your head.” It may be usefully described as a central pain processing disorder.
7. Pain shouldn’t be allowed to interfere with activities, especially since exercise shows proven benefits. Gentle water-based exercises, ideally in a heated pool, have done best in trials. The amount of exertion should start low and increase slowly — aim for 10% a month.
8. Most patients will also fulfil criteria for chronic fatigue syndrome. Patients follow the boom and bust pattern of CFS: their worst days often follow their best, when they take on too much activity. Pacing is vital, and should be taught as a coping strategy.
9. One way to do this is through cognitive-behavioural therapy. CBT is a useful adjunct to exercise, but even together, in trials they brought functional improvement to only a minority of patients. CBT is somewhat more effective against pain, helping about half of patients.
10. As for drug therapy, standard analgesics rarely help much. Steroids and strong opioids aren’t recommended. Moderate opiates like codeine and tramadol can be useful in flare-ups. Low-dose nightly amitriptyline often helps with both pain and disturbed sleep. The SNRI duloxetine has been shown to help with central pain processing disorders and is approved for fibromyalgia in the U.S. (nausea is sometimes an issue). As of last year, pregabalin is approved for fibromyalgic pain in Canada; it may also help with the anxiety so prevalent in this disease. But remember — fibromyalgia patients tend to be unusually vulnerable to drug adverse effects, so with all drugs, start low and titrate slow.
11. Fibromyalgia is defined by chronic widespread muscular pain and symptoms such as fatigue, sleep disturbance, stiffness, cognitive and memory problems, and symptoms of depression and anxiety 12. The symptoms of fibromyalgia and associated conditions can vary in intensity and wax and wane over time; stress often worsens these symptoms 13. More localized pain conditions often occur in patients with fibromyalgia, including migraine or tension headaches, temporomandibular disorder, irritable bowel syndrome, gastroesophageal reflux disorder, irritable bladder, and pelvic pain syndromes
14. Fibromyalgia affects 2-4% of the population, predominately women
15. The disorder most commonly has its onset in middle adulthood, but can occur in adolescence and old age as well
16. Fibromyalgia is diagnosed based on patient symptoms and physical exam; there is no laboratory, radiographic, or other diagnostic test, but these can be used to exclude other conditions
17. Physical and emotional stressors play a triggering role in fibromyalgia; the result is changes in the way the body communicates with the spinal cord and brain associated with altered levels of chemical and proteins in the central nervous system; this results in alteration of the way the brain perceives pain
18. Although there are medications available for the treatment of fibromyalgia, the non-pharmacologic treatment should be stressed; this involves regular aerobic exercise, stress management, keeping to ideal body weight, and establishing a regular pattern for going to bed and waking up
19. Fibromyalgia is not a form of arthritis and does not cause inflammation or damage to joints, muscles, or other tissues
20. A rheumatologist often makes the diagnosis and rules out other conditions, but your primary care doctor can provide all the care and treatment for fibromyalgia that you need
1. When you begin your journey with epilepsy you must be your own advocate.
It didn’t really occur to me that once you hear those words “You have epilepsy,” you’re confronted with a variety of opinions about how to journey ahead. In the beginning, I just wanted a doctor. Any doctor. I didn’t care who it was, I didn’t care what medicine they were planning to give me. I just wanted them to put an end to the condition, whatever it took. It gets to a point where the decision comes down to you and you alone. You must make the decision about your treatment.
Every type of epilepsy is different. This must be first and foremost in your thinking. Make a choice; just because it’s set up that way, does it mean it’s the right way for you?
I had to make a decision: Was I going to stay with a doctor who wasn’t leading me further to the care I needed? Was I going to continue taking epilepsy medicine that wasn’t controlling my seizures in any way, shape or form?
2. Epilepsy doesn’t define me.
I’m going to be completely honest: Having seizures, whether Grand Mal or Complex Partial(in my case) can be frustrating. Seizures are an unsettling experience for the person going through it and anyone witnessing it.
I choose to be open and vocal about my seizures rather than masking them because I know so many around the world are intimidated at the thought of others’ perceptions of epilepsy and seizures. I’ve gotta say, this knocks me back a few steps because truthfully what other choice do we have? Seizures are here with me, and we’re at war. But I have complete faith that one day there will be a cure for epilepsy. I know it in my heart. I will look upon this someday as a page turned in the story of my life. Epilepsy does not define who I am, and I will go on. I will be here for my husband and my family.
3. Be a fighter – this will help you through the stormy days.
This is a must. You’ve got to keep yourself in a positive, uplifted, healthy state of mind. I’m in a fighter state of mind right now and this means I’m making myself priority number one and believing with all of my heart I’m going to be just fine. This is critical.
I had my moments of crying when I was told I had epilepsy. It’s OK. We’re human. The important thing is that you get back up and you fight. Get yourself in the thought process that you will beat this. No matter what it takes, no matter how long it takes, you will beat this. Quit is not in my vocabulary.
4. Good nutrition plays an important role in facing epilepsy.
So many foods that we eat and drink are in fact poisonous to our health. I consumed junk food, processed and refined food for so long. I now have become a person who reads and studies labels. It’s become apparent how so many foods contain ingredients that may contribute to seizures and an unhealthy lifestyle.
Since becoming diagnosed with epilepsy, I’ve kicked most, if not all caffeine to the curb and re-evaluated my eating habits. Now a days, I eat a whole lot more vegetables, such as leafy greens, broccoli and cauliflower. I also include more fruits into my diet such as blueberries, apples and bananas. Re-evaluating my eating habits was tough in the beginning, as there were comfort foods that had to go; however, this was my life I was analyzing. In one hand, comfort. The other hand, my life. I choose life.*
5. Read your labels.
Artificial sweeteners are added to a lot of what we buy and consume. As I stood in the aisle at Walmart one day and looked at the boxes of oatmeal, I realized some contained artificial sweeteners. How frustrating. It’s important that you read your labels.
There’s a wonderful app I highly recommend called ShopWell. It scores foods on how well they meet your needs. It includes nutrition information and personalized food scores. ShopWell also gives you easy tools to find better products for you. It takes the work out of reading nutrition labels so you can focus on buying what you want as quickly as possible.
6. Epilepsy tests can be smooth sailing.
When you’re going through testing, it can be intimidating or boring but you learn to toughen up and just do it. I’ve had 28 electrodes placed upon my head more than once. This meant they were going to record seizure activity in my brain. Anyone having seizure testing should talk to their doctor or neurologist if they’re feeling nervous or anxious.
7. Talk to tour doctor before testing.
Nervous? Anxious? Talk to your doctor about any questions you may have prior to testing. He or she will gladly reassure you about any concerns. It’s important to address these concerns; you want to feel at ease when going in for testing. I remember the first test I was scheduled for, I was so nervous I could barely sleep the night before. It was as simple as picking up the phone and calling my doctor and voicing my concerns. I had nothing at all to worry about.
8. You are priority #1.
At times, epilepsy testing felt like an energy drain. It’s important to go into it with faith. There was a day my husband looked at me and said, “Think of it as a punch to the jaw of epilepsy. Every test is a punch. You can do this! Stay strong.”
He continued by saying, “You’re not superwoman. Don’t forget to give yourself time to rest.” He was right. He was completely right. Rest is medicine too. Sometimes it takes a voice of reason for me to stop what I’m doing and rest because I’ll work sunrise to sunset. I needed to learn to quit taking on more than I could handle. This was something that was a bit of a challenge for me, but it was something I had to do.
9. Support is a must.
Don’t go to your appointments alone. If you’re able, ask a friend or family member if they will go with you. You don’t know it, but you do need someone there with you. I’ve found my greatest strength in my family and friends, and they’ve been such a tremendous blessing in my life. My husband has been to every single appointment.
I highly suggest keeping a journal and jotting down everything. Keep notes on all your neurologist says. Having references are important.
10. Hold on to hope.
Remember, however long it takes, whatever it takes, hold onto hope and faith. Be vigilant. Do all the necessary things you must do to stay healthy and remain healthy. You are priority number one.
11. Epilepsy is the condition of having repeated, unprovoked seizures, whereas a seizure is anabnormal electrical discharge of the brain which then results in an individual losing consciousness or having a change in their neurological function. There are several types of seizures and not all are dramatic in their presentation, though they are often depicted in movies and television as a convulsion. Some seizures manifest by one simply losing focus, but to a bystander, it may seem as daydreaming, wandering or a tremor. Therefore, not all seizures are very dramatic in their presentations.
12. Epilepsy is very common. According to the CDC, one in 26 people in the U.S. will develop epilepsy at some point in their lifetime. If you think about it, that means two persons on every bus or two people in every subway car will have epilepsy. There are 150,000 new cases of epilepsy diagnosed in the United States annually; 2.2 million people in the U.S. and more than65 million people worldwide have the condition.
13. Children and older adults are the fastest-growing segments of the population with new cases of epilepsy; however, the reason that they have epilepsy varies dramatically. In children, we see an overabundance of genetic and infectious causes of seizures. For older adults, stroke and Alzheimer’s disease seem to be the common cause of epilepsy and seizures in this population.
14. There are numerous causes of seizures and epilepsy. Stroke, head trauma and tumors are common causes of seizures in the U.S., yet the number one cause of seizures outside of the U.S. is an infection which is completely preventable by simply washing one’s hands.Neurocysticercosis– caused by the Taenia solium tapeworm— is one of the most common causes of epilepsy in the world and an increasing cause of seizures in the U.S. Other preventable causes of epilepsy are head trauma from car accidents, violence or the consequences of military intervention.
15. Epilepsy is not a benign condition and can result in death. The number of people with epilepsy who die of sudden unexpected death in epilepsy (SUDEP) varies from one of every10,000 newly diagnosed to nine of every 1,000 candidates for epilepsy surgery.
16. For many people with epilepsy, seizures can be effectively reduced or eliminated by medication, surgery, devices and dietary or other therapies; however, referral to epilepsy centers for surgery can take 15 years or more. In the Latino population, there is a considerable misinformation and lack of information; oftentimes that lack of access does not translate into meaningful care. There are 26 different drugs approved for treatment in the U.S. for epilepsy. Moreover there is a pacemaker like device known as the vagus nerve stimulator, a diet- ketogenic or modified Atkins, and numerous surgeries. These effective treatments are available for many types of epilepsies; however, access and referrals to these treatments fall short.
17. There is considerable stigma associated with epilepsy that sometimes overwhelms the condition itself. The word” epilepsy” is considered stigmatizing in its own right. The long history of epilepsy is full of examples of discrimination and secrecy due to misinformation and lack of understanding by the general public. This stigma can have a detrimental effect on people with epilepsy and continued and sustained efforts are needed to raise public awareness and convey what epilepsy is and what it is not, as well as the basic message that this is an exceedingly common condition.
18. There are significant quality of life issues associated with epilepsy and one of the most significant is driving. Every state in the U.S. has a law that dictates whether someone with epilepsy can or cannot drive and the length of time they need to be seizure free for them to drive. In six of these states, the law has mandatory reporting by the physician of all patients with epilepsy to a medical board. Individuals need to be aware of these laws as there are, in some cases, criminal consequences for both physician and patients for their lack of awareness associated with it.
19. Epilepsy is more than just seizures as it often has other accompanying conditions associated with it. Oftentimes, poor memory, mood issues, depression and anxiety walk hand in hand with issues associated with epilepsy and need to be managed and thought of when caring for the individual with epilepsy.
20. Sadly, many health professionals need to be better informed about epilepsy. Only 20 percent of U.S. medical schools require training in neurology…and epilepsy and how to treat it. Improvements in epilepsy care can only be made if the quality and quantity of education about epilepsy for health care professionals are improved dramatically at undergraduate and graduate levels of lifelong learning processes. In addition, more educational efforts for patients with epilepsy and their families is needed.
Multiple sclerosis is a quirky autoimmune disorder that attacks the insulation protecting the nerves in the brain and spinal cord and ends up targeting the eyes and limbs. About 400,000 Americans have it.
There’s no known cause, but genetics definitely play a role: You have a 3 to 4% chance of developing it if one of your parents had it. And if you have an identical twin with MS, your chance of getting it goes up to 30%. People of Northern European descent are most apt to get it.
Another risk factor is having had mononucleosis. Research shows that people who’ve had the Epstein-Barr virus (which causes mononucleosis) have a higher risk of MS. One recent study, published in the journalMultiple Sclerosis, found that the risk of MS was highest in people under age 26 who carried antibodies for the Epstein-Barr virus.
2. It hits when you’re in your prime.
MS is the No. 1 cause of neurological disability in young people. “The average age of onset is 25 to 30, so we suspect there’s a relationship between peak fertility, hormones, and the immune system,” says Tanuja Chitnis, MD, an associate professor of neurology at Brigham and Women’s Hospital and Harvard Medical School. Interestingly, women who have it suffer 70% fewer attacks during pregnancy, though it’s common to relapse soon after giving birth.
Women are twice as likely as men to have MS, but when men do develop MS it’s often more severe.
3. The symptoms can be wide-ranging.
MS is different in everyone. In some people, it inflames the optic nerve and causes a short spate of double vision. (Here are 10 things your eyes say about you.) Other times it attacks the limbs and weakens the legs.
There’s also a lot of variety in the severity of symptoms. Some patients might have an MS attack, get treated, and then be perfectly fine (at least for a while). Others will deteriorate more quickly.
4. It’s not fatal.
MS itself is unlikely to kill you. Most patients have a normal life expectancy and eventually die from something completely unrelated (such as heart disease or cancer). But it can certainly take a toll on your life and ability to function, which can lead to depression; suicide rates are higher than average in people with MS.
5. Symptoms tend to disappear and reappear—sometimes years later.
There are four types of multiple sclerosis, but 85% of patients have the relapsing-remitting variation. It’s not unusual to have a flare-up that lasts a few days or weeks, followed by what seems like a complete recovery. “People come in and they’re wondering, ‘How can I be perfectly healthy and then have these attacks and lesions on my brain?’ ” says Farrah Mateen, MD, an assistant professor of neurology at Massachusetts General Hospital. (This also makes MS hard to diagnose.)
That said, the disease does tend to worsen with age, because as you get older the nervous system isn’t able to repair itself as well. Many people have relapsing-remitting MS that turns into a more rapidly progressing form 10 to 20 years later.
6. You won’t necessarily end up in a wheelchair.
MS often impacts mobility, but don’t assume you’ll become totally disabled. About two-thirds of patients don’t need a wheelchair even 20 years after they were first diagnosed. A cane or crutches might offer all the help you need, though some people who get tired easily or have balance problems may turn to an electric scooter or wheelchair.
7. There’s no cure—yet.
“I like to tell my patients that we don’t have a working fire extinguisher, but we have a lot of great smoke alarms,” says Mateen. Right now there are many pills, infusions, and injectable drugs that can reduce the chance of a relapse by half.
Getting adequate vitamin D has also been shown to protect against MS (the disease is much more common in Canada and the northern half of the US than it is in southern states) and help keep symptoms in check. Chitnis tells patients to take a vitamin D supplement, as well as a coenzyme Q10 supplement: Research has shown that people with MS who take 500 mg/day of CoQ10 have significantly less inflammation in just 12 weeks.
As for a cure, it’s not just a pipe dream: MS research is very well funded, which is why there have been enormous advances in treatment over the past 20 years. “We’re really starting to see how MS progresses, how neurons degenerate, and how to protect them,” says Chitnis. “Our understanding grows by leaps and bounds all the time, and I fully believe a cure is possible in my lifetime.”
1. Despite its name, you know that there is nothing romantic about the “MS hug.”
2. Having “foot-drop” and walking through a dog park can be a messy combination.
3. You know the “Swank diet” doesn’t describe the food on a country club menu.
4. Crowds and loud noise make you want to flee.
5. MS makes you a logistics specialist: You immediately scout out the accessibility, parking, and potty situation of every new location.
6. Rotating injection sites on your body is more important to you than rotating the tires on your car.
7. Who the heck rock climbs and windsurfs like the people in MS ads?
8. You know why the basket under a rollator collects as much junk as a purse.
9. Your body decides to spasm the moment the needle pierces your skin.
10. Taking a shower can be more tiring than it was getting dirty.
11. You wish everyone wore a nametag.
12. You know the difference between an MS med’s flu-like side effects and the flu.
13. You don’t just forget where you put your keys, but also where you parked the car.
14. You hope the test of touching your nose and the doctor’s finger has some medical relevance, and isn’t just a practical joke.
15. The “retail squeeze”: as your gait gets wider, the stores’ aisles appear to get narrower.
16. Cutting one’s toenails is no easy task.
17. The chefs on television should try preparing a meal from a seated position.
18. This scooter is my lifeline, not your ATV plaything—so get off!
19. It’s easier to get a disabled parking placard than it is to find an empty disabled parking space.
20. During a game of hide and seek, you’re always the easiest to find.
21. When you see someone wearing orange, you immediately think “MS awareness,” not “crossing guard.”
22. The closer you are to the bathroom, the worse your urge is to go.
23. You know that the nine-hole peg test is not something they sell in the gift shop at Cracker Barrel.
24. “Fun in the sun” isn’t in your vocabulary.
25. You’ve had so many MRIs, you can hum the melody of the pings and bangs.
26. You know you could never have a successful career as a robber, due to terribly slow getaways.
27. When people stare at your cane, you tell them you came straight from tap class.
28. “RRMS”, “SPMS”, and “CPMS” aren’t the sounds Grandpa makes sleeping in his chair.
29. When someone tells you, “You look so good,” you wonder if they’re referring to you or that pan of lasagna.
As parents of a child with cerebral palsy, Bryan and I have frequently used the phrase, “as long as I’m able”. We knew we would continue to climb the ladders and go down slides with Roa, carry him up flights of stairs to change his play environment and keep up with his brother, and hold him up to bat at out of reach objects like the leaves in the trees or the basketball hoop. As long as our strength and stamina matched his rapid toddler growth, we would do this. As long as we were able, we would play tag or Duck Duck Goose with other children; one of us acting as his “walker” supporting him through movements as long as our energy allowed.
We have always said, “as long as I’m able” never dreaming that the time would come where our determination and the power of our love would be challenged by our ability.
Bryan and I are forty, fairly fit, and motivated. Bryan works out when he can. I walk daily and squeeze in some yoga when life allows. Yet, carrying, supporting, lifting, and moving with Roa daily is taking it’s toll. Two weeks ago, I was lifting Roa from his floor chair, twisted in a not so wise position and, OUCH!… pain in a way I had never experienced before. Sciatica, my doctor told me. Treatment: medication, chiropractic care, keep up the walking, but limit the lifting for awhile.
Limit lifting? Impossible in our life. We move with Roa as much as we move alone. Yet with the pain during sleep and discomfort in play, I have started to limit some of what I do with Roa. I’m trying to
think on the positive. Be optimistic- it’s more time I can do MNRI techniques, craniosacral work, or preschool projects. Yet Roa wants to move. And go. I can’t do it as much. It makes us both sad, but this is life with a growing boy with limited independent mobility.
We have been waiting, patiently for a trial with a new walker for Roa to allow more independence in play and…AMEN…this week it arrived. The Ormesa Grillo is a gait trainer new on the market that has a sit to stand mechanism. It has all terrain wheels that move outdoors with ease! It has a variety of arm/hand support and trunk back support options that can be adapted to Roa’s muscle tone needs of the day. This new walker came just at the perfect time. Our boy has to find new ways to move, play, and interact.
We still have a sadness that doesn’t leave. The realization is setting in that our days of climbing with Roa through the play-lands and bounce houses are numbered. However, we will continue to look for options for Roa that keep him involved in typical play as much as he can.message! Please follow this link to the original. http://www.onthespot247.com/the-physical-toll-cerebral-palsy-has-on-parents/
Just a day ago, I was asked how my sciatica was doing. I replied with the typical, “much better” answer. Yet, later in discussion with Bryan, it dawned on us; parents of children with physical disabilities live daily with a certain level of pain. It is probably a pain that others would view as very bothersome and might call for a day of rest with an ice pack and some Bengay. We just view it as our row to hoe. This is life and we can’t take a break. We just find ways to cope for as long as we are able.
If you have only average knowledge of bipolar disorder, you may not know that there are two major forms of the illness – bipolar I and bipolar II (also known as bipolar 1 and 2), which are separate diagnoses. More people – and maybe you’re one of them – have become interested in bipolar II because celebrities like Catherine Zeta-Jones and Demi Lovato have revealed they’re diagnosed with bipolar II disorder.
There are significant differences between these two forms of bipolar disorder. The information below is taken mostly from the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (or DSM-5).
Note: Because the terms bipolar I and II are used interchangeably with bipolar 1 and 2 (bipolar II is even often mistyped as bipolar 11!), I have used those terms interchangeably in this article.
The most important distinctions between bipolar I and II are:
A person with bipolar I has manic episodes, while someone with bipolar II hashypomanic episodes
The main difference between mania and hypomania is a matter of severity. In the hypomania of bipolar 2, a person has a sustained mood that is elevated (heightened), expansive (grand, superior) or irritable. This mood has to be noticeably different from his or her normal mood when not depressed. In mania, that mood is extremely abnormal, and is also combined with increased activity or energy that is also abnormal.
For example, Hank, when he has hypomanic episodes, is exceptionally cheerful, needs only three hours sleep instead of his usual seven, spends more money than he safely should and speaks far more rapidly than usual, along with other symptoms of hypomania.
This behavior is noticeably different from his own stable mood, yet there are cheerful people who need little sleep, spend a lot and talk fast who don’t have bipolar disorder, so while it’s abnormal for him, it’s not outside the range of possible behavior in general.
On the other hand, Hank’s friend Robert, who has manic episodes, is out-of-control happy, even during serious events (he burst out laughing disruptively during a funeral). He ran around outside at midnight shouting how much he loved all his neighbors (along with other symptoms of mania). This is abnormal behavior for anyone.
Note: Someone with bipolar I disorder may also have hypomanic episodes, but someone with bipolar II cannot ever have had a manic episode. If a manic episode occurs in someone with bipolar II, the diagnosis will be changed.
Other differences between bipolar I mania and bipolar II hypomania
One or more of the following conditions has to exist in mania but can’t be present in hypomania:
Mania may include psychotic symptoms – delusions or hallucinations. Hypomania does not have psychotic symptoms.
At times Robert firmly believes he is the mayor of his town and introduces himself to people as such, telling them about grandiose and sometimes bizarre plans he has for making improvements to services and infrastructure. If Hank had a similar delusion, his diagnosis would be bipolar I rather than bipolar II. The presence of psychosis automatically rules out hypomania.While hypomania may interfere to a degree with daily functioning, in mania day-to-day life is significantly impaired.
Robert missed an important business meeting because of a spur-of-the-moment decision to take flying lessons. Hank may be longing to take flying lessons while hypomanic, but if he does, he takes them at a reasonable time when he has no other obligations.
The manic person has to be put in the hospital because of the severity of symptoms.During an irritable manic episode, Robert began throwing crockery, silverware, pots and pans at his wife because he wasn’t satisfied with that night’s dinner. He was subsequently hospitalized because he had become a danger to others. Hank’s hypomania does not escalate to such an extreme extent.
A note on psychosis and bipolar II disorder:
Although the presence of psychotic symptoms is one of the things that differentiates bipolar I mania from bipolar II hypomania, someone with bipolar II may experience hallucinations or delusions during depressive episodes without the diagnosis changing to bipolar I.
The Difference Between Bipolar I & Bipolar II
You might have heard the word “bipolar” thrown around a lot, but how much do you really know about bipolar disorder? One element of bipolar disorder that often isn’t discussed in the media is the fact that it actually has varying “types,” and isn’t just one cookie-cutter diagnosis. The Diagnostic Statistical Manual, or DSM, is the basis for defining and diagnosing mental conditions, and it outlines a clear divide between types: bipolar I and bipolar II. But it’s not just a matter of degree, and you can’t call one version less damaging or serious than another. Understanding the spectrum of bipolar disorders as a culture would do a lot to demystify the condition, and help us understand what people with either type are going through.
We have a conception of bipolar disorders as huge highs and huge lows; this is the type represented by Mark Ruffalo in his star turn in Infinitely Polar Bear,for example. That’s certainly a real thing (bipolar I, as it happens), but there’s also another side to the equation, where the highs are less high and the lows often just as low. (And no, manic depression is no longer considered the correct diagnostic term for this type of bipolar disorder.)
So here are the real differences between bipolar I and II, and why that difference matters more than you might think.
The Difference Comes Down To Mania Versus Hypomania
The distinction between different kinds of bipolar disorder comes down to the “manic” side of the equation and how it manifests in different people. In both types of bipolar, depressive episodes may occur, but bipolar I is identified when it’s accompanied by one or more episodes of mania, while bipolar II is diagnosed when it’s paired with hypomania.
What’s the difference? It’s mostly a matter of degree. Mania is the more intense experience: staying up all night, working madly, doing irrational things, having creative spurts, feeling hugely grandiose and full of love, having no social barriers and acting compulsively. Sounds like fun, but it’s not. The Mayo Clinic’s definition for mania is “abnormally and persistently elevated, expansive or irritable mood that lasts at least one week [with] persistently increased goal-directed activity or energy.” These are the periods where bipolar sufferers might spend all their money, do something spectacularly inappropriate, get arrested, or put themselves in serious danger.
Hypomania is less intense. It’s supposed to be shorter in intensity (mania should last for at least a week, while hypomania should be around four days), and the impulsivity, confidence and excess energy, like a wheel going far too fast, are less serious in degree. It can be so slight that people just think of it as “increased energy” or “feeling weirdly energised and positive,” rather than a genuine hypomanic period. According to an expert interview on Healthline, this can lead to a problem with diagnosis, wherein hypomanic individuals are declared to be depressives, and don’t actually realize they have periods of minor mania too. This is bad news, because anti-depressants don’t actually work as effective medications for bipolar disorders.
The reality is that symptoms of both bipolar disorders aren’t exactly black and white. PsychCentral, which cheerfully calls bipolar I “raging” and bipolar II “swinging,” records studies of pure mania that identify many different types, from psychosis and paranoia to sheer hedonism, all the way to aggression and hypersexuality. Unfairly enough, depressive episodes in bipolar conditions don’t have a similar “lesser” element. Whether you’ve got bipolar I or II, your depressive episodes are likely to be severe, which means that bipolar II isn’t necessarily easier to live with than bipolar I. The one exception, according to Psych Central, is a variant of bipolar I which has “mixed” episodes, where an episode contains both manic and depressive elements at once (euphoric and suicidal at the same time).
Why The Distinction Matters
One of the biggest reasons for distinguishing between the two types of bipolar disorder, according to the Black Dog Institute, which specializes in mental health support, is proper treatment. Apparently, bipolar type I is usually treated with lithium and other “mood stabilizers,” but the particular shape of mood disordering in bipolar II means this may not actually be a suitable course of treatment.
Being aware of the fact that there’s not just one blanket model of bipolar disorder is necessary to fully understand people who’ve got it. You may know several people who present their bipolar disorder in different ways; while this likely reflects their personal treatment options and factors like substance abuse and age (the average age of onset for bipolar disorders is 25), it’s also probably to do with what specific kind of bipolar they actually have.
There’s also not a hard-and-fast wall between the disorders. An expert forPsychology Today, Dr. Russ Federman, points out that, in some cases, bipolar hypomania may turn into mania, but it’s not the case for everybody and can be exacerbated by lifestyle factors like doing drugs, not getting enough exercise, and not sleeping at night. He calls the boundary between the two the hypomanic “ceiling,” but it doesn’t seem that bipolar I goes the other wayand dampens down into hypomania all that often.
It’s important to know that there are also other features on the bipolar spectrum, not just I and II. One is cyclothymic disorder, which is related to bipolar II but features only mild depression and lower levels of hypomania; it’s not given the “bipolar” label because it’s not severe enough, but it’s definitely sufficiently significant to have a big impact on your life. And that needs its own unique treatment, too.
Basically, there’s one rule: don’t make blanket assumptions about all bipolar disorders being the same. Listen when somebody tells you what they’ve got, and understand where it stands in the landscape of mood disorders and bipolar specifically.
Microsoft’s HQ where new jobs for people with autism will be based
The new jobs will be based at Microsoft’s HQ in Redmond, USA
Microsoft says it wants to hire more people with autism in full-time roles.
The tech giant is to start by offering 10 places on a pilot scheme based at its Redmond headquarters.
Senior executive Mary Ellen Smith said: “People with autism bring strengths that we need at Microsoft.”
The UK’s National Autistic Society welcomed the move but said that other firms should do more to tap into the skills offered by many people with autism.
Announcing the new scheme in a blog, Ms Smith said: “Each individual is different, some have an amazing ability to retain information, think at a level of detail and depth or excel in math or code.”
Specialist recruitment firm, Specialisterne, will help run a new hiring scheme.
The firm, which operates in Denmark and the UK, works with several IT companies, and in other sectors, to promote the skills of people with autism for specific vacancies.
Sarah Lambert, from the National Autistic Society, said: “It’s encouraging to see a global company like Microsoft recognise the untapped potential of adults with autism.
“Many may have strengths such as accuracy, a good eye for detail and reliability, which can benefit all sorts of businesses, not just the technology industry.
“However, at the moment, just 15% of adults with autism in the UK are in full-time employment.
“Simple adjustments, like making job interviews more accessible and providing support to help those in work understand the ‘unwritten rules’ of the workplace can unlock the potential of a whole section of society.”