22 Things To Avoid If You Have Chiari Malformation

1. Wear highly cushioned, support shoes to reduce neck, cerebellum pounding. Commercial cross-trainer sneakers are recommended – New Balance, Nike, Reebok etc.- test before buying.
2. Avoid neck-stressing activities (football, soccer, basketball, wave pools, diving, tennis, roller coasters, other amusement park rides of high G forces, lifting in excess of 15 lb, backpacking, falling asleep in chairs, extended reading with head bent etc.)
3. Get plenty of rest and sleep (eight hr minimum). Pillows and sleep position are very important. Soft, small pillows with fiberfill are very good for this i.e. little or no”push” back. (see expanded list below for other comments about pillows). Most Chiarians are side-sensitive. Use a large pillow(s) etc. to prevent rollover onto affected side. Elevate your bed at the head 4-6 inches by inserting old telephone books, bricks, boards or blocks under the front frame legs.  Have a strong relative or friend assist you.  If possible, do the same when staying at a hotel/motel or at the home of relatives.”  Stop eating and drinking three to four hours before bedtime to reduce the need to get up at night.
4. Avoid caffeine, alcohol, aspirin and/or high salt diet if tinnitus is a major symptom or any of these dietary items increase other symptoms.
5. Stay in excellent physical condition via walking, exercise bikes and other non-neck stressing activities – STAY LEAN
6. Sit in soft recliners with high backs and foot rests.
7. Support reading material with elbows on your knees/thighs or chair arms. Read “straight” ahead. Use book holders or music stands. Look at computer monitors straight ahead.
8. Drive if you have to but use wide vision mirrors and get seats with high backs. -Take your time and limit your driving to short distances at slow speed preferably during the day. Some Chiarians find orthopedic collars help reduce neck stress when riding in a car etc. Some do not.
9. Relax and avoid stress and noise. Don’t tighten the neck muscles. Stay “cool”.
10. Put soft cold compresses on the neck/ brain joint area or on the top of your head for about an hour while lying down (these are soft compresses). Some Chiarians prefer warm compresses.
11. Straining during bowel movements should be avoided. Eat plenty of roughage and eat at regular times. Drinking herbal tea containing senna may help give pain-free relief from constipation.
12. Heavy jewelry, scarves, ties, tight collars, bras, rings, bracelets and watches might feel uncomfortable. Adopt a casual life style and don’t wear them.
13. Try to avoid waiting in lines where stutter stepping is involved. Uneven surfaces or checkered designs in floors maybe difficult to walk on. Focusing on an object in front of your or closing one eye may help when dizziness hits.
14. Do crossword puzzles to assist short- term memory retention. Ditto for playing cards.
15. Take calcium supplements to assist in bone enhancement especially after surgery. Be very cautious using vitamins and supplements- most have not been thoroughly tested for primary and side effects. As always, check with your doctor first.
16. TENS machines may help ACM/SM patients, especially those with spasticity (cervical, thoracic, lumbar muscles) and spinal pain. TENS units also can help with headaches. You can buy one for use at home. As always, check with your doctor first.
17. Avoid cervical traction.
18. Lumbar punctures, spinal taps or epidurals can be dangerous for Chiarians. Always ask your doctor and insist they review the literature on these procedures with respect to increasing herniation.
19. Brushing teeth or gargling can result in sneezing. Minimize head motion during brushing and not bending the neck when gargling.
20. Avoid chiropractor adjustment. Most chiropractors have no experience in treating ACM’s. One member’s herniation significantly increased after cervical adjustment. “That is because the herniated went from 3-4 mm to 15-20 mm in 8 months with this treatment (documented on MRIs)”.
21. Review daily movements to include cooking and cleaning. Eliminate as much neck stress as possible.
22. Use the special tray that most beauty shops have for washing hair for people who cannot lean back on blunt sink rims. Chiarians should never lean back on the edges of sinks.

My Son Has The Kind Of Autism No One Talks About

Like most parents of children with autism, I have been reading about the family in California who is being sued by several families in their neighborhood. The lawsuit contends that their child is a public nuisance because of his behaviors that his parents failed to fix.
One of the plaintiffs in this case stated “This is not about autism. This is about public safety.”
But he is wrong. This is absolutely about autism. It’s just not about the autism people hear about.
The media shows us all of the feel-good stories, like the child with autism who gets to be the manager of the high school basketball team, or the boy with autism who goes to the prom with the beautiful girl, or the girl with autism who is voted onto the homecoming court. We light it up blue every April and pat ourselves on the back for being so aware.
But we aren’t aware.
Because for every boy with autism who manages his high school basketball team, there are 20 boys with autism who smear feces. And for every girl with autism who gets to be on the homecoming court, there are 30 girls with autism who pull out their hair and bite their arms until they bleed. And for every boy with autism who gets to go the prom, there are 50 boys with autism who hit and kick and bite and hurt other people.

This is the autism that no one talks about. This is the autism that no one wants to see.
We aren’t aware.
One of the plaintiffs said “We’re not upset about him being autistic. We are concerned and upset about his violence (toward) our children.”
There is no way to be upset by this child’s behaviors and not be upset about autism.
Autism and behaviors go hand-in-hand. Why? The behaviors are communication. Individuals with autism often can’t communicate in a way that typically functioning people can understand. So they do things to get their needs met. And often the things they do are scary and violent.
We aren’t aware.
My son, who is the same age as the child in this story, was extremely aggressive when he was younger. He did all of the things that the child involved in this lawsuit did. My son ran after other children on the playground just to push them down. He hit. He kicked. He bit. He pulled hair. And I never knew what was coming. For the longest time, I would flinch when he ran up to me…I didn’t know whether he was going to hug me or hit me. Can you imagine, as a mom, what that’s like? To flinch when your child runs to you?
We aren’t aware.
Because I didn’t know what my son was going to do to other children, we stopped going to the park. We stopped going to the Mommy and Me class at the library. We started going to the grocery store at 6:00 a.m. when most people weren’t around. He didn’t go to daycare but had a sitter at home so he wouldn’t be around other kids in a daycare setting. I essentially isolated him in order to keep other people safe. Can you imagine what it’s like to be a mom and not be able to take your child to the park? Or have your child attend birthday parties? Or have play dates?
We aren’t aware.
Because of my need to isolate my son, I also isolated myself too. I watched from my window as other moms in the neighborhood sat in their camp chairs and chatted while their children played. I couldn’t join them because my son couldn’t be around the other kids. Once a mom asked if my son could come to their house and play with her son. Can you imagine what it was like to feel so excited and then feel so ashamed when, after explaining my son’s issues to her so she would be aware, that invitation was rescinded?
We aren’t aware. Not at all.
But we can be. We can open our eyes and understand that autism isn’t all about the high functioning child who is “quirky” but OK to be around. Autism isn’t all about the six-year-old who can play Piano Man better than Billy Joel. Autism can be hard. Autism can be sad. Autism can be messy. Autism can be violent. Autism can be isolating.
Once we become really aware, lawsuits like this won’t happen. Why? Because instead of putting blue lights on our front porches, we will go outside with our kids and we will help them play together…typically functioning kids and kids with autism. We will get to know our neighbors and we will embrace the children with behaviors and embrace their parents along with them.

We will learn what things trigger our child’s classmate who has autism so that we can help the children interact while avoiding things that will cause aggression. We will be a true village, including those who can model appropriate behaviors and those who are trying so hard to learn them. We will work on teaching our children not to hit and how to avoid being hit.
The parents involved in this lawsuit, on both sides, need to do more. More education, more understanding, more inclusion and more involvement.
Now tell me, is autism the real public nuisance?
We can become aware … if we really want to.

Everything That Happens To Your Body When You Get Lyme Disease – Term Life

Lyme disease is a pretty horrifying infection that starts with everyone’s favorite little arachnid: the tick. Lyme disease symptoms can range from little rashes to massive neurological disorders, and can even turn deadly if left untreated. But it all begins with a small bite from an infected tick, and terrifyingly enough, it can happen to you pretty much anywhere. As gruesome as this may sound, you may still be wondering what it’s like to have Lyme disease as its symptoms progress, and lucky for you, we have the answers.

  1. It’s All Starts with One Little Bite

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    Lyme disease is transmitted by ticks, a particularly nasty little arachnid with an appetite for human blood. But how does one simply bite jumpstart all this sickness? Well, the ticks pass along a little bacteria called Borrelia burgdorferi, which makes its way into your blood stream when a tick bites you. Oftentimes, the bacteria is spread by younger, smaller ticks, which have a painless and mostly unnoticeable bite, so you won’t even notice it’s gotten you. Once it’s in, the bacteria, which is creepily corkscrew-shaped, makes its way to your nervous system, vital organs, and all throughout your body. From there, you’ll start to notice that something is a little wrong, though you won’t quite know why.
    What’s more is that Lyme disease has been found on every continent except for Antarctica. Basically, there’s no escaping it.
  2. It Imitates a Bunch of Other Diseases

    It Imitates a Bunch of Other D... is listed (or ranked) 2 on the list Everything That Happens to Your Body When You Get Lyme Disease
    Photo: no/flickr/CC-BY-NC 2.0
    Although it’s in your body and there will be obvious symptoms, chances are you won’t recognize what’s affecting you as Lyme disease. Lyme disease has a huge number of symptoms that all seem to impact different parts of the body, unrelated to each other. Some of these symptoms smack of specific diseases, so you’re probably going to think you’re sick with something else. Do you have the flu? Is it a joint pain issue? Maybe you’re just tired, who knows! The fact of the matter is that you’re going to experience a bunch of weird stuff, none of which screams Lyme disease.
  3. You’re Going to Get Super Tired

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    Photo: Emertz76/flickr/CC-BY 2.0
    One thing you might notice upon first getting Lyme disease is that you feel a little worn out. In fact, you might feel downright exhausted. Between your body trying to fight off the infection and the infection itself wreaking havoc, you’re likely to feel pretty fatigued. Doctors may even misdiagnose you with chronic fatigue. Of course, being tired is hardly a huge warning sign, especially if you live an active lifestyle, so you’ll probably brush it off as no big deal. Unfortunately, it only gets worse from here.
  4. You Might Feel Like You Just Worked Out Too Hard

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    Photo: thebradking/flickr/CC-BY-NC-ND 2.0
    After the fatigue, things are going to progress and get a bit more severe. Your joints may hurt, you may have heart palpitations, shortness of breath, and your muscles may ache. Even if you haven’t been to the gym, you might feel like you’ve been through one heck of a workout, and the feeling will persist all day. Physical activity is also going to make it worse. This might be the point where you start feeling like something is wrong with you.
  5. You Might Think You Have the Flu

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    Photo:  Mojpe/Pixabay/CC0 1.0
    Think of what you know about the flu. It’s all about nausea, fever, chills, headache, and achy limbs, right? Well, that’s pretty much what the early symptoms of Lyme disease are, too. The majority of people, when these symptoms hit, assume that they simply have the flu and take a day off from work to rest up. However, rest doesn’t fix Lyme disease, and the symptoms are going to get worse and worse over time, even if you and your doctors don’t recognize it. Luckily, there will finally be a symptom that tells you, in big bold letters, that you probably have Lyme disease.
  6. There May Be a Massive, Bullseye-Shaped Rash

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    Photo: fairfaxcounty/flickr/CC-BY-ND 2.0
    If you’re looking for a sign that you have Lyme disease, here it is, like a big red bullseye. No, seriously. It looks like a bullseye. Between three and 30 days after being bitten, the area around the initial tick bite is going to start showing a large rash, sometimes warm to the touch but not painful, with the bite in the center and a red ring around the outside. You may also notice rashes in other areas, particularly around the joints, but the big one is going to be right around where you’ve initially been bitten. At this point, when you go to a doctor, they’ll probably be able to tell you what’s going on just from looking at that.
  7. You Might Lose Control of Your Face

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    Photo: Internet Archive Book Images/flickr/No known copyright restrictions
    An unusual but terrifying symptom of Lyme disease is Bell’s Palsy. What’s that, you may be wondering? It’s when part of your face becomes paralyzed, seemingly out of the blue, or starts spasming uncontrollably. You might notice that you can’t smile with one side, or that part of your face feels numb, or that other parts of your body are numb and difficult to control. This happens because the bacterial infection can, in fact, get to your nervous system and cause neurological disorders. You might even start to have seizures, in rare cases. This could take weeks or months to appear.
  8. Your Body Will Start Feeling Stiff All Over

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    Along with numbness, you might notice you’re feeling a little stiff. And that doesn’t just mean your hands or knees are feeling stiff. Particularly, your neck will feel stiff, which sometimes leading to pretty bad headaches. To make matters worse, you may start experiencing arthritis, with severe joint pain that makes it difficult to move around. Not moving is bound to make stiffness worse, too, so it’s a symptom that actually makes itself worse.
  9. The Pain May Keep You from Sleeping

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    Photo: Vic/via Flickr
    Speaking of that joint pain, things are going to get pretty nasty here. Not only are you going to notice stiff, painful, and even rashy joints, but you’re also going to have shooting pain in your limbs. You’ll feel it in your feet, your hands, your tendons, and even in your very bones. Basically, a month into the infection, expect to be in a world of hurt.
    This pain can be so severe that you may not be able to go to sleep at night. Although you might think the shooting pains are related to something else, they’ll probably be drastic enough that you seek medical help.
  10. You May Start to Lose Your Memory

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    Photo:  geralt/Pixabay/CC0 1.0
    Remember how neurological problems were mentioned earlier in the list? Well, while the bacteria are attacking your spinal column, they might just work their way up into your brain. That’ll bring on confusion, dizziness, and even memory loss. That’s right, one little tick bite might make you forgetful and hazy about things that have just happened. Your long-term memory, like memories of childhood, should be just fine, but your short-term memory is going to experience some distortion. This is a slightly rarer symptom, but after a month or two has passed, it is a possibility.
  11. Your Might Experience Severe Gastrointestinal Distress

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    Although nausea goes along with flu-like symptoms, gastrointestinal symptoms on Lyme disease do get worse as the infection spreads. You may find you can no longer keep food down, or that you’re… firing from both ends, so to speak. So, while you’re in pain, exhausted, feverish, and confused, you might end up being stuck in the bathroom more often than you’d like, too. You’ll also experience bloating, stomach pain, and cramping as well as dehydration from the vomiting. So, even though it might make you feel queasy, remember to keep drinking water to stay hydrated. Oh, and definitely go see a doctor.
  12. You’re Going to Get Super Moody

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    Photo:  422694/Pixabay/CC0 1.0
    As you get confused and you lose total control over your short-term memory, it only makes sense that you might be a little grumpy. More specifically, you may feel depressed, anxious, or may experience drastic mood swings. It’s hard to say whether that’s related to the fever, the bacteria attacking your brain, or just being grumpy that you’re sick, but we do know that Lyme disease is bound to make you act completely out of character.
    Because of this, some doctors will diagnose you with psychiatric illnesses, rather than physical ones, which may delay you from getting treatment. So, remember to look for that bullseye rash.
  13. You May Feel Like You’re on Pins and Needles

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    Photo: Vivian Chen [陳培雯]/flickr/CC-BY-ND 2.0
    This might seem like a nice change from the shooting pain, but this is a pretty bad sign. This symptom can actually take months to present, and will feel like your extremities are constantly tingling, even when you haven’t been sitting funny. This might also make sleeping difficult, as well as interfere with mobility. If it happens in your hands and fingers, it may also impact your ability to work, or just really really frustrate you.
    Mostly, this is a late symptom and is a sign that the Lyme disease is taking a serious toll on your body.
  14. You’ll Start Swelling Inside and Out

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    Photo: eyewashdesign: A. Golden/flickr/CC-BY-NC-ND 2.0
    As all this is happening, there’s definitely going to be some swelling, though you likely won’t notice all of it. Your lymph nodes will swell to indicate that your body is trying to fight something off. Your joints and muscles might swell to accompany all that lovely pain you’re feeling. The membranes surrounding your brain is going to get inflamed, as well the area around the spine, your other bones in general, and even your eyes. In short, you’re going to puff up inside and out. Even worse? It might all start to itch. This is a sign that your whole body has become infected with the disease, and that you need treatment immediately.
  15. You Can Actually Die

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    Believe it or not, that little tick bite can actually cause death. If left untreated, Lyme disease infections can move to your brain, your heart, and other vital organs, causing them to fail or work too poorly to fight off other, more deadly infections. The corkscrew-shaped bacteria can also burrow into healthy cells where they can hide from your immune system, so it’s unlikely you can beat it on your own. According to the CDC, there were 114 deaths attributed to Lyme disease in the US between 1999 and 2003. So if you think you have it, you should seek treatment sooner rather than later.
  16. It’s Curable, but Incredibly Difficult to Catch

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    So, you’ve got Lyme disease, and you’re going to go get treated. What’s your outlook? Well, here’s where we give you some good news. Lyme disease is incredibly treatable. With antibiotics, you can generally get healthy again in about a month, assuming you caught it fairly early. The vast majority of people are cured without any permanent side effects.
    Here’s the bad news: because it’s hard to diagnose, and because it’s so good at hiding in various parts of your body, it’s hard to get rid of all of it. In some cases, symptoms can remain for six months or longer. This is sometimes known as “chronic Lyme disease” and is kind of miserable. So, get treated early and avoid the turmoil of having Lyme disease long-term.
    You Might Feel Like You Just W... is listed (or ranked) 4 on the list Everything That Happens to Your Body When You Get Lyme Disease

15 Facts About Addisons Disease That You Should Know

Addisons Disease is a serious and life threatening illness where the Adrenal glands fail to function resulting in insufficient amounts of Cortisol and Aldosterone in the body. Here are 15 facts about Addisons Disease to help you better understand the condition.


Addison’s disease is not usually diagnosed until at least 90% of the adrenal cortex has been destroyed. This can take months or years and is often referred to as primary adrenal insufficiency.


Some of the symptoms of Addisons Disease include severe fatigue and weakness, loss of weight, pigmentation of the skin, dizzyness and low blood pressure, nausea, vomiting, salt cravings, painful muscles and joints.


Addisons Disease was first identified in the UK in 1855. The condition is named after Thomas Addison a doctor who first wrote about the illness whilst working at Guys Hospital in London.


People with Addisons Disease are steroid dependent. This means they are reliant upon taking cortisol medication every day. Cortisol is the “stress hormone” and without it the body would go into adrenal crisis and eventually die.


If you have Addisons, you will also need to take a medication called Fludrocortisone. This is prescribed to replace the aldosterone steroid normally produced by the adrenal glands. Without Aldosterone in the body their would be an electrolyte imbalance leading to low blood pressure and dehydration.


People on steroid replacement therapy will need to stress dose during times of illness such as infection, high temperature and fever. Addisons patients will need to be aware of their wellbeing and any illness will need to be compensated to prevent Adrenal crisis.


When someone with Addisons exercise in a way that is more physically demanding than usual, they will need to take a little extra steroid medication beforehand to help the body cope with the added stress.


Often sudden shocks such as being in a car crash, learning of the death of a loved one or a big argument can result in a need to increase Steroid coverage. Additional emotional stress can clear cortisol faster than usual and make an Addisons patient very unwell.


Addisons Patients will always need extra steroid coverage during dental procedures, operations and certain hospital tests which place more than usual stress on the body.


Often when low in cortisol, patients with Addisons disease can develop brain fog and poor concentration levels. This can affect the ability to work out what medication is needed. Therefore it is important to always wear a medic alert band.


Addisons patients will need to carry an emergency injection with them in case of sudden adrenal crisis. The emergency injection can be life saving. Many patients have died from adrenal crisis and the condition should be taken serious and can be life threatening.


If someone with Addisons has prolonged vomiting due to an illness or stomach bug, they will need an emergency injection and immediate hospital treatment.


Some Addisonians will need to increase their fludrocortisone medication when on holiday  or under extreme temperature climbs around 30˚ Celsius. this will help to avoid dehydrations and becoming dangerously unwell.


Too much steroid coverage on a regular basis can result in Cushing’s Disease, weight gain, bone problems, diabetes and a moon shaped face. it is important for a patient to be on the correct dose so as to ensure they are not under or over replaced as both not enough and too much cortisol can have serious consequences.


Many people have not heard of Addisons and it is not always familiar to some doctors or medical staff. It is always a good idea to carry a letter about the illness incase of emergency and just incase the people treating the illness do not understand the importance of emergency cortisol replacement.
I hope these 15 facts are useful and helpful. Please do share this post to help spread the word and awareness for Addisons Disease and Adrenal Insufficiency.

Couple with Down's syndrome engaged after long

Relationships are beautiful things. When a couple is ready to take it to the next level and get engaged, it doesn’t matter if it’s a surprise proposal or something they’ve decided on ahead of time together, it’s an exciting and pivotal moment.  For one couple, their engagement has been a long time coming as they’ve known each other since childhood. We’re so excited for the happy couple!

Nick and Sarah have known each other since they were both three years old.

Nick had been waiting to ask Sarah to marry him, and finally the right moment showed itself.

The couple were at Chick-Fil-A when Nick decided to pop the question.

Sarah obviously said yes!

All the best wishes to this super sweet couple!