Brain Wisdom

New EDS Videos added

2011-05-09T21:54:00.000-07:00

Greetings. Today I added two more short videos on Ehlers-Danlos Syndrome that I found on You Tube. I hope you enjoy them:

1) Ehlers-Danlos: Mystery and
2) EDS What Does a Disabled Person Look like?

Connie

Feb 28th is Rare Disease Day

2011-02-24T21:21:00.000-08:00

Did you Know that February 28th is Rare Disease Day?

Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. Anyone can be involved in Rare Disease Day and there are many suggested activities. The day has been established as a grassroots advocacy day.Rare Disease Day was first observed in Europe in 2008. It was established by EURORDIS, the European Rare Disease Organization. In 2009, EURORDIS asked NORD to be its partner in this initiative and to sponsor Rare Disease Day in the United States. Now, the concept is rippling out around the world. In 2010, 46 countries participated.

In May of 2009 NORD and EURORDIS entered into a strategic partnership to catalyze transatlantic collaboration. The goal is to support policies and practices that speed up scientific discoveries and innovative treatments, provide access to the highest standard of diagnosis and care, encourage more patient-centered health care systems, offer a higher quality of information, and help break the isolation of the people living with rare diseases.

What is a Rare Disease?

In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease. Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult.

"What can you do, you may ask?" This year NORD invites patients and family members to help them create a video library of rare diseases. The goal of the project is to educate the public through the stories of real people. To submit your story, or to learn more about Rare Disease Day activities in the U.S. go to www.rarediseaseday.us.

To learn what’s happening around the world, go to the global Rare Disease Day website at rarediseaseday.org

"Alone we are Rare, together we are Strong!"

Connie M. Carlson

Resource: www.rarediseaseday.us

Sleep Apnea

2010-08-02T01:17:00.000-07:00

Sleep Apnea and why do Chiari patients experience it?

Chiari patients often suffer from Obstructive and Central Nervous Sleep Apnea. Chiari often results in direct compression of the brainstem and can lead to a number of symptoms related to brainstem function of which apnea is one. In addition, Chiari
often puts pressure on the cranial nerves which may result in atrophy of the muscles around the airway. This in turn could lead to an obstruction of the airway during sleep. Also, the presence of a syrinx in the spinal cord may directly interfere with the important nerve signals which travel to and from the brain to monitor and control breathing (www.conquerchiari.org/subs only/Volume 3/Issue 3(6)/Chiari Apnea 3(6).asp).

What is Sleep Apnea?

Sleep Apnea is a serious sleep disorder that occurs when a person's breathing is interrupted during sleep. People with untreated Sleep Apnea stop breathing sometimes hundreds of times. This means the brain --and the rest of the body may not get enough oxygen.

There are 3 types of Sleep Apneas:

1) Obstructive Sleep Apnea (OSA) which is caused by nasal or throat obstruction;
2) Central Sleep Apnea, in which the brain fails to signal the muscles to breathe due to instability in the respiratory control center; or
3) Mixed, which is both and most difficult to treat (many Chiari patients experience because of compression);

The following are youtube videos on Sleep Apnea::

www.youtube.com/watch?v=aNktp0s8rc&feature=related
www.youtube.com/watch?v=wn3kwCwMpU&NR=1
www.webmd.com/sleep-disorders/sleep-apnea/sleep-apnea

The following are written resources on Sleep Apnea:

www.webmd.com/sleep-disorders/sleep-apnea/sleep-apnea
www.mayocilnic.com/health/obstructive-sleep-apnea/MM00715
www.nhlbi.nih.gov/about/ncsdr/index.htm

What to do if you think you have Sleep Apnea?:

1) Consult a Sleep Specialist (Neurologist);
2) Have a Sleep Study done (best if at a sleep center vs. at home);
3) Get a CPAP machine (Continuous Positive Air Pressure);
4) Give yourself months to adjust to using CPAP and try various masks until you find one you like;
5) Give up alcohol as it contributes to apneas;
4) Quit smoking as it contributes to apneas;
5) Avoid Sedatives as it contributes to apneas;
5) Sleep on your side (use pillows to prop your body) - it may help reduce mild apnea;
6) Use Oral Devices such as Zquiet or Breath-Aide to decrease snoring and keep your airways open;
7) Use a Cervical Pillow when you sleep, to help your head stay in a position that reduces apnea;
8) Elevate your upper body when you sleep

Elective Surgery to treat Sleep Apnea includes:

1) Nose Surgery to fix a deviated septum (broken nose) which helps to decrease snoring, decrease sinus
congestion, and improve night-time breathing,
2) Tonsil Surgery to remove the tonsils and improve breathing; or
3) Throat Surgery to remove part of the tissue at the back of the throat to improve breathing;

* surgery can work miracles for some, and do nothing for others

New Video - Nicole's Fight

2010-07-07T22:17:00.000-07:00

Another nice inspirational video of hope.

Check out New short videos on Ehlers-Danlos Syndrome

2010-06-21T22:47:00.000-07:00

Greetings,

Check out two new additions to my short videos.

1) What is Ehlers- Danlos Syndrome? and
2) Ehlers - Danlos Syndrome - Dying to Live.

New Video Postings

2009-10-20T01:35:00.000-07:00

Good Morning,

Please check out the new video postings. Please note that the link to Extreme Make Over currently is not available. I will continue to search for a new source for this video.

Connie

Travel Tips for Chiari Patients

2009-01-19T22:42:00.001-08:00

Hello,

As the temps plummet to a bitter 30 below here in MN, I dream of traveling to WARMER places and this inspired me to share my "Travel Tips for Chiari Patients”.
Let’s face it, many Chiari patients don’t travel well, however, we still desire to travel to see family or friends, or we need to get to and from doctors or hospitals out of state. These are the things I have done over the years that have allowed me to travel with less pain and more physical comfort

FLYING:

1)Pressure Reducing Ear Plugs called “Heartech Flitemates”. Designed for aircraft passengers; they reduce noise and slowly balance cabin pressure changes that can cause pain and discomfort. They are excellent for us Chiari people who are sensitive to pressure changes. They are very comfortable for long-haul flights and periods of long use, are washable and reusable, and are inexpensive. You can purchase them for $6.99 at amazon.com. Make sure to follow the instructions on the box. I put them in 30 minutes before flight, and don't take them off until I've been up for 30 minutes, then put them back in 30 minutes before landing. I do NOT fly without them:-) A REAL lifesaver!

2) Neck pillow to support your cervical spine: I've heard that the “Komfort Kollar” neck pillows by www.magellans.com are good. They come in a memory foam version for $60.00 or an inflatable version for $28.00. But less expensive cervical pillows can be found on line, at travel stores or at the airport for $7.00.

3) Gel Seat Cushion to reduce lower back pain. “GSeat® Light” is designed with a gentle forward slope for proper lumbar curvature, and a center relieved groove that suspends your tailbone, eliminating direct pressure on the spine. Made of lightweight memory foam, it evenly disperses body weight, enhancing circulation and comfort. Folds in half for packing, and can be found at www.activeforlife.com for $59.00.

4) Guided Meditations by Belleruth Naparstek: Her Relieve Headaches CD is specifically designed to help relax tense muscles in the head and neck; assist with the opening and evening out of blood vessel caliber; reduce pain; promote emotional balance; and clear the mind of cognitive clutter. Go to www.healthjourneys.com to hear numerous samples, i.e.: anxiety, sleep, panic, trauma, healing, etc. Her voice is very relaxing and calm. MP3 files can be purchased and immediately downloaded. Enjoy!

5) Aromatherapy: I carry a small liquid peppermint essential oil in my purse when traveling. Airports, airplanes, big cities, etc, are filled with strong odors such as smoke, cleaning products, colognes and perfumes that can often trigger the Chiari patient who may be chemically sensitive. I simply put a dab of peppermint under my nose, so I’m breathing in the relaxing scent. This has been found to help with headaches pain as well. It really does the trick for me. Remember, when going through airport security, to put it in a zip lock bag, since it’s a liquid.

6) SLEEP MASTER sleep mask: it’s a wonderful adjustable sleep mask with total light elimination and built-in sound muffling. Made of a light-weight, soft, cool satin fabric, that’s very comfortable! It is breathable, flexible, durable, wide, surrounds your head and is easily connected in the back by velcro strips. Can be found at www.amazon.com for $21.00.

7) Divide your Medications: When flying, I divide my medications the following way, that way, if your luggage is lost, or your purse is stolen, you are not without your important medication. I place ½ of my meds in original bottles in my carry on bag with a doctor’s letter, and I pack ½ of my medications in my checked-in luggage also with a copy of my doctor’s letter.

8) Consider taking a Muscle Relaxer: even though I prefer non-drug options to treat chronic pain (i.e. guided imagery, yoga, etc.), I do take a Muscle Relaxer such as Flexeril or Tizanidine (which many Chiari patients are already using) when flying. Even though I do get up and stretch and walk during my flight, I find that when taking a Muscle Relaxer ½ hour before my flight I find it makes a big difference in my body’s overall physical comfort. This is only my experience, and you should discuss this with your doctor first.

9) Remember your Bowel and Bladder Needs: Avoid Caffeine, eat as close to your normal diet before flying, and eat little on the airplane to prevent upset or stimulation to your bowel and bladder.

10) Move, Stretch, and Walk: On long flights, get up and walk the isle, stretch while sitting in your seat, and remember to move your joints even if it’s just a little. “In flight Yoga.” CD by Carol Dickman can also be purchased at www.healthjourneys.com.

11) Travel Handicap Assist: Forget your pride, and travel with assistance! Don’t lug heavy baggage around, and don’t overdo it running around an airport. If you have a physical disability, then request wheelchair assistance when you make your flight arrangements (whether you use it or not): 1) this prevents you from having to stand in long lines (which can be physically difficult; 2) you will be brought directly to your gate, 3) you will be given more time to board, and 4) you will be picked up and brought to the baggage claim area when you arrive at your destination. At large airports like LAX or JFK this is very helpful. In smaller airports, sometimes I will put my luggage in the wheelchair and push it myself if I can, as it allows me to walk a little, or ride if I need to.

TRAVELING BY CAR:

Having hip, low back, and skull-base issues, traveling in the car I came across a number of products at Relax the Back Store and on-line that have made a world of a difference in my ability to travel by car:

1) Travel Mate Comfort Pillow: Ergonomically designed to prevent your head from rolling from side to side, the pillow helps you maintain correct posture. A strap holds the pillow in alignment allowing you to attach it to your car seat. It offers wonderful support for your skull base, relieving neck aches and stiffness. $30.00 or less.
2) ObusForme Backrest Support: This Backrest Support assists in the prevention and relief of back pain. The S-shaped frame promotes proper posture and correct spinal alignment -- this turns any chair into an ergonomic seating system. Use anywhere you sit. Includes removable lumbar pad. Comes in a Lowback or Highback version. This system holds my body in place while driving! Can be found at www.healthyback.com $60.00
3) Seat Cushion: Gel Seat Cushion to reduce lower back pain. “GSeat® Light”, or various other lumbar seat cushions (www.relaxtheback.com, or www.healthyback.com).
4) Seatbelt Extensions: Seatbelt extensions help one to avoid twisting, turning and placing undue strain on one’s spine. Seatbelt extensions can typically be purchased at your local car dealership for around $25.00. Some dealerships will give them for free.
.
5) Panoramic Rearview Mirror: This extra-wide rear view mirror 17 = increases your rear field of vision up to 300% instantly. It eliminates blind spots on both sides of your vehicle, so you can safely make lane changes, merge onto freeways or back-up without straining your neck. It takes seconds to clips on to your existing rear view mirror. Great for those who have had a cervical fusion, or must wear an Aspen Cervical Collar! Only $10.00 at www.seenontvproducts.net/panoramic/ or at www.mileskimball.com 12 1/4" long x 3" wide. or a variety at www.amazon.com.

6) Extra Medication: I pack a travel pill case filled with a variety of my medications. I
leave this in my car in case I leave the house in a hurry and forget my purse (which is where
I keep my meds). It has happened

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Medical Alert Bracelets: There is no agreed upon standard guideline amongst Chiari experts as to whether one needs a Medical Alert Bracelet. However, for those who do choose to have one, helpful instructions may include: Chiari I Malformation or Ehlers-Danlos Syndrome-Caution: do not hyperextend neck, shunts implanted, craniocervical fusion to C5 in place, presence of a syrinx or significant degenerative disc disease, etc.
(http://www.medicalert.org, www.americanmedical-id.com and others.)

EDS Awareness Wallet Card: for Ehlers-Danlos Syndrome can be found at www.ednf.org. Click on shop to find cards, the cost is $4.00. This includes important information helpful for Emergency Room and Hospital Staff, pertinent to the care of EDS patients.

Letter from a Doctor: I carry with me a current letter from my neurologist or PCP that lists my diagnosis, and current medication regime. I carry two copies of this when I travel, one on my body (purse or pocket), and a second packed along with my meds.

Summary of Medical History: I have typed up a Medical Summary that lists my diagnosis, medications, allergies, surgeries, treatments, and doctors. I have found this especially helpful when I’ve been in ER’s situations, or while having to see a doctor, while I’m traveling out of state. When you are in a great deal of pain, and/or are drugged up, it’s great to have it in writing.

Well that’s it folks! Travel safe, enjoy life, and be well.

Sincerely,

Connie M. Moeller

Happy New Year

2009-01-01T01:41:00.000-08:00

Happy New Year!

As I was bringing in the new year, I came across one of my favorite and uplifting songs by Josh Groban called "You Lift me Up."

May it lift your spirits and bring you joy!

Connie

Aspen Vista Collar, CPAP, Pronex, Saunders Traction ...

2008-12-16T15:25:00.000-08:00

Welcome,

This is the very first time I have ever created a blog spot before, so please be patient with me as I learn:-) I'm sure you will see how this site will grow and become more interactive and interesting. By the way, does anyone have a magic wand to wave to give me a few more weeks before the year is over?

I came back from New York with a long list of medical equipment I needed to get, and so far I've almost gotten everything. I'm learning so much about selling medical equipment, that if my health were a little better, I'd sure consider doing it:-)

The Aspen Cervical Collar: Purchasing the Aspen Cervical Collar has thus far been the easiest. It took 4 phone calls until I was able to find a Medical Rep, and one willing to come to my home. I'm using it now a few hours each day. I'm to wear it around the house, and when I am a passenger in a car. I cannot use it as a driver until I get additional mirrors on my car to see blind spots.

CPAP: I was also successful last week in getting my CPAP machine, but have not yet started using it yet. I will ease into that I'm sure. Hopefully, by sleeping better at night, it will improve my oxygen levels as well, and help me to feel less tired during the day. Because the brain fluid is backed up in my brain right now, I'm having compression on parts of my anatomy in my brainstem that is causing me throat obstruction when I sleep, and choking and coughing when awake.

Currently I stop breathing 21 times an hour at night (which is considered modest sleep apnea), but what happens that causes me the most sleep distruption is that I wake up during REM sleep. My eyes are wide open, I'm choking and cannot get air, and my body is paralyzed (I cannot move at all). During REM, the body releases a substance to tell the muscles to basically rest. When that happens, the next day I'm a zombie. I'm pretty much like sleeping beauty right now, maybe not the beautiful part (LOL), but definenitely the sleeping part!

Pronex Neck Traction: On Friday I will meet with a Medical Rep, and test out the Pronex Neck Traction machine. Why so much traction you ask? Well, the theory is that maybe if we can lift my skull, it will open up just enough that it will improve the flow of CSF. If that happens, then my Chiari symptoms may improve. Unfortunately, the Pronex is made partly out of latex (which I have a sensitivity to) so I wont be able to use it, but I have found a wonderful substitute, The Saunder's Home Cervical Traction Device. It's what most PT offices use here in MN. I like it because it has a gauge so you can see how much weight you are using for traction. While I realize that all these medical devices are a temporary fix for a more serious problem, I welcome anything that will improve my quality of life right now. And for many, traction can work for a long time.

To learn more about these medical devices see the links on the side column.

Come back later, I hope to have more bells and whistles on my blog by the weeks end. Maybe photography, poems, quotes, U-Tube links, etc. Stay warm and stay safe, enjoy a hot cup of tea or hot chocolate and watch a Christmas Movie for holiday cheer. I watched Elf last night for the 100th time, makes me laugh for sure!

Connie

A Visit to The Chiari Institute

2008-12-15T12:13:00.000-08:00

December 8, 2008

Greetings family, friends, and all who reach this blogspot.

I have just returned from a two-day intensive medical appointment with Neurologists and Neurosurgeons at The Chiari Insitute in Great Neck New York. We flew into LaGuardia, a small airport that was only a 20 minute drive to The Variety House, a two-story brownstone for families and patients. It was nice to visit with others with similar medical histories (believe it or not). Some were even worse, so it made me grateful for the health I do have.

On the second day I underwent 3 hours of Imaging from the top of my skull to the bottom on my spine! The Imaging Technician looked just like my nephew Nathan, so between that and the sedative I took before the Imaging, I was a happy and compliant patient. As the MRI's went 'wack, wack, wack' I pretended to hear Native American Drumming, and soon it was all over. MRI's can be painful for me because of Trigeminal Neuralgia, but all went well.

On the third day I went to The Chiari Institute, where I met with a Nurse Practitioner, a Neurologist, and two Neuro-surgeons. The Neurologist showed me copies of my brain and spine Images, and there it was in front of me, the proof for my pain. I was glad to have taped the session, as after a while, I became numb as he delivered both GOOD and BAD news.

The GOOD NEWS is that I do NOT have Syringomyelia, which is a cyst of Cerebral Spinal Fluid (CSF) in my spinal cord. Thank you GOD!

The BAD News, or maybe I should say NEW news is that although my brain herniation of 7mm has not grown, I still have a CSF flow problem in the back of my brain, and I was diagnosed with the following:

1) Occult Tethered Cord Syndrome - that my spinal cord is matted down by tissues in my low back, and is tugging at my brain causing it to slump;
2) Cerebellar Slumping; that my brain is sagging; it may be caused by
3) An over large Foremen Magnum; which contributes to the slumping;
4) Cervical Instability; that my cervical spine is unstable, and
5) EDS (Ehlers-Danlos Syndrome) - A connective tissue disorder that causes joints to dislocate. They actually believe that many all of my medical issues are caused by this disease (hip dysplasia, degenerative disc disease, muscle weakness, and brain sagging);

So what does this all mean? Now what?

First of all, I begin traction for my neck and skull. I will be wearing a neck device during the day and when I drive that will allow me to protect my neck, and to pump up my skull, in hopes that this will improve the flow of CSF.

Second, I will consider taking Diamox, it's a drug that decreases the production of CSF. I have not yet decided whether I will take this, as it also can decrease potassium levels quickly.

Third, I will get my 'ducks in a row' and prepare for a Tethered Cord Surgery in 2009 in New York. This is a spinal surgery of my low back, and the recovery time can be much like having a spinal fusion. Which I'm all too familiar with. Prior to the surgery they want to do an Invasive Cervical Traction test. They will put my neck and skull in traction, and then wake me up and pump up my skull to see where I'm the most symptom free and comfortable. Great. Cannot wait:-) Actually, I've heard that it's not really that bad.

If you go to the Chiari Institute, bring pillows or chair supports, whatever you need to feel comfortable, because you do a lot of sitting, both on the day of testing, and at TCI. It's a nice office with TV's, but bring what ever you need to be comfortable.

Connie