Are You Trigger Happy?

Photo of Adam ZwanPortion distortion is one of the many reasons for the rapid increase in obesity among individuals in the United States.  One category of food that people tend to splurge on is called trigger food.  Trigger foods are those that individuals go to when they are multi-tasking.  For example, while watching a movie, reading a book, working on a computer, or studying for an exam a person may have a snack item at their side and by the time he or she pays attention the entire bag has been eaten.  Depending on a person and their taste buds, trigger food may include chips, candy, popcorn, trail mix, cheese cubes, and list goes on.

There are no bad food groups or bad foods just improper serving sizes.  The good news is that trigger foods do not have to be eliminated from one’s diet; they should just be eaten in the right amount.  Luckily, many methods can be practiced to eat more mindfully.  For one, take your chosen trigger food and measure out a single serving and then placed the remaining food back in the pantry or fridge.  In turn, a smaller amount will be eaten and a limited amount will cause a slower eating pace, which will also help with healthy metabolism.

A popular method in defeating trigger foods is when grocery shopping, shop the perimeter of the store. Fat, salt, and sugar are the three taste good ingredients, which is why manufactured products all contain one or a combination of the three giving snack foods an addictive quality.  By staying on the perimeter of a store a person is less likely to buy trigger foods and have them in the household increasing temptation to overeat.  Also, shopping the perimeter increases the ability to substitute trigger foods with fresh fruits and vegetable.  Instead of having an entire bag of chips while multi-tasking have an apple; now, a bag of chips is defeated with healthier item.

As a Wolfram patient, controlling diabetic glucose levels is extremely important when slowing nerve damage.  Trigger foods can easily boost glucose levels, so eating more mindfully can promote controlled diabetes.  Limiting and substituting trigger foods has proven to be a valuable lesson in living healthier and increasing the quality of life.

Photo of Lauren Gibilisco

People think that when you are blind your other senses kick in to compensate. But when you are living with Wolfram Syndrome, that is not true.

When I still had my sight, I was colorblind.  When I was in first grade, I used to wear one purple sock and one blue sock.  My mom told me to go change my socks and I told her I like it like this.  My mom thought that I was showing that I was confident and independent and wanted to be different.  Then when I was in sixth grade and my mom had me at the doctors, they asked my mom how long I had been colorblind.  She told them that I wasn’t.  They then proceeded to have me show my mom how I matched up the color blocks.  She couldn’t believe it.  She never knew.

When you go to cross an intersection you would normally listen for the traffic since you can’t see it.  I have high frequency hearing loss and wear hearing aids.  I can hear traffic but can’t tell which direction it’s coming from.  So it takes awhile standing there to hear no traffic. I have trouble hearing little kids because they talk in a high pitch and I really can hear older guys better because of their lower toned voices.

I have been diagnosed with Anosmia.  It is the inability to perceive odors.  I have trouble determining what I am smelling. I would have trouble telling if I was smelling a rose or smelling a lilac.  But there is one odor I can smell.  It is ONIONS.  I don’t know if it is because I hate onions.  But the smell makes me sick.  I don’t know if it is in my head, but don’t bring an onion near me.  So I would greatly appreciate St. Louis doctors if you would take the onion out of the smell test next clinic. 🙂

I have the same trouble with taste as I do smelling.  I have trouble determining what I am tasting.  I love cinnamon, but if you gave me a piece of cinnamon candy, I would have trouble knowing what I was eating.  I went out for breakfast with a friend last week and they didn’t have any of the cinnamon muffins left.  They did have a roll with a little cinnamon on it, but I couldn’t taste it.  My mom told my friend next time to just say it was cinnamon and I would believe that’s what I was eating.

The last sense I have trouble with is touching.  I have learned to read Braille.  My problem is that I am very slow at it.  I have had diabetes since I was two and I have real difficulty in feeling what I am touching.  Poking your finger for 25 years at least 5 times a day causes the nerve endings in my fingers not to feel as well.  I also have trouble with the force of my touch.  I think I am just tapping your arm and everyone says “ouch” because I guess I am punching them hard.  So I am apologizing in advance for anyone I may touch too hard.

So living with Wolfram Syndrome causes problems in my life but I enjoy the challenges learning how to adapt.

Photo of Adam Zwan

-By Adam Zwan

With the abnormal cold weather that is occurring in the United States for the past few weeks there have been a high number of comments regarding Global Warming.  Just a few of the comments that can be heard all over the United States are:

“I am really enjoying the Global Warming.”

“What’s with all this snow, I thought Global Warming was making everything hotter.”

“Ice again next week, this is not Global Warming, this is Global Freezing!”

The problem with the Global Warming theory is that it only predicts what occurs during part of the year and so during winter months the theory gets mocked.  Sometimes words alone do not explain everything they represent.  For instance, having Wolfram Syndrome does not mean that I am genetically linked to wolves or get the urge to howl at the moon.  Wolfram Syndrome is a genetic disorder that attacks the central nervous system and Global Warming is just a theory regarding climate changes.  The theory is scientifically correct.  Climates have shown warmer temperatures, glaciers/icebergs are melting, and birds are migrating further north than ever before.

When interacting with other people who mock a theory, like Global Warming, I feel it important to explain things a little further.  Due to human activity, the ozone layer around Earth’s surface is being damaged and depleted.  The ozone layer around Earth has two important aspects: block sun rays to prevent overheating, and capture heat to prevent freezing climates.  In essence, when the ozone is removed Earth will experience hotter summers and colder winters; both of which are being experienced at present.  It is only natural to mock or criticize something after an initial glance, I’m guilty of it.  I find myself taking back things I have said or thought after doing research and proving myself wrong and that has served as a valuable lesson in life.  As a result, I do not believe everything I hear before doing research and coming up with my own conclusions.

“Some Like It Hot and Some Sweat When The Heat Is On”- Hypersensitivity to Heat

Hello Everyone,

I told you last week the main symptoms of Wolfram Syndrome.  Today I am going to talk about a lesser symptom that greatly impacts my life. This symptom is hypersensitivity to heat. My body has a problem regulating temperatures.  “Some Like It Hot” only begins to describe my house.

Photo of Lauren GibiliscoFor those that don’t know me, I am from Nebraska.  The weather here can be very windy and unpredictable.  This last week has been extremely cold (for normal people).  The temperature was in single digits with wind chills below zero.  We also had three days where the regular temperature was -10 to -15 with wind chills -20 to -30. In simple terms, I hate the heat and love the cold.

Here is where I have a constant argument with my mom.  She wants me to wear a coat in the winter.  She lectures me on how the cold can affect my skin.  I hate wearing a coat.  It always makes me hot no matter what the temperature.  Here is how I respond to people.  “I never wear a coat unless I can see my breath.”  Ha-ha, I can never see my breath so I always win that argument. I like to exercise at home, especially during the winter, so when I get hot I can just go outside to “chill out”.

In the summer, it can get very hot and humid here.  This makes me a prisoner in my home.  I sweat profusely and I am unable to be outside for any length of time. I can no longer take walks, go to amusement parks or baseball games. The only activity that works for me is swimming.  The cold water keeps my body cool.  My parents had to install a separate central air conditioner upstairs just to keep me cool.  I don’t like it to be any warmer than 65 degrees.  So picture this, it is 100 degrees outside and my mom is wearing a sweater and socks trying to stay warm inside the house.  So what a family we are.  I hate to wear a coat in the winter and my mom has to wear a sweater in the summer.  Oh well I’ve always loved being unique.

Have a great week everyone and enjoy the weather. ☺

The Gift Has Already Been Given!

Photo of Adam Zwan receiving his latest Taekwondo belt.Starting in January 2013 I was asked by a gentleman to help him run his academy teaching Taekwondo.  Being physically active and enjoying exercise as much as I do, I did not blink before I agreed to help out.  I was told that class members would range from 3 to 16 years old and that I would be using the art of Taekwondo to teach self defense as well as improve behavioral aspects within the community, at home, and at school.

Anyone has the ability to throw a punch but it takes technique and skill to defend one’s self and avoid physical confrontations  Each class involves teaching proper form and usage of Taekwondo as well as life skills, such as respect, discipline, self control, honor, loyalty, setting goals in education, and much more.  The physical art is tested through the performance of various movements. Progress reports and parent meetings reveal improved behavior outside the academy.

Following months of teaching and training several classes, I was pleasantly informed that my lessons of both Taekwondo and life skills were promoting successful results and the parents of class members wanted to thank me by giving me a gift of some kind.  I was asked to think of something I would really like to receive as a gift.  A full-time job, a girlfriend, and 20-20 vision were at the top of my wish list, none of which could be given or bought for me but rather accomplished on my own.

Nearing the end of my thoughts about something I would like to receive as a ‘Thank you” for making a difference in the lives of others, I wrote a letter to the parents of my class members.  In short, I told the parents that “The gift has already been given.”  Hearing that my lessons of Taekwondo and life skills have improved the lives and behaviors of class members was one of the greatest gifts I could ever receive.  Knowing that I am making a difference in the community as well as in the lives of others is reason enough to wakeup every day with a smile.

Diabetes, Wolframs and Botox, Oh My!

Photo of Lauren Gibilisco

Lauren Gibilisco

Hello everyone.  My Botox surgery was a success.  I am happy to report that I am getting up only two or three times a night instead of every hour. I don’t feel as tired anymore through out the day.  This has made me feel so much better. I am able to drink a lot more and hold a lot more than every before.  This gives me a lot more energy so I can talk a lot more which is just what my mom needs. LOL.

I was also able to go back to my volunteer job this week where I shred paper.  Who better to shred confidential papers than someone who can’t see anything on them. ha-ha.  I’ve had this job since high school which I really enjoy.  The people there treat me like anyone else.  They don’t pity me.  In fact quite the opposite.  They love to give me a hard time and tease me.  It’s hard to know who is getting more harassed, them or me. My mouth is the only part of me that is not affected by WS.  Winking smile
I should back up and tell you a little about me.  I am affected by all aspects of DIDMOAD.  DI (DIABETES INSIPIDUS), DM (DIABETES MELLITUS), OA (OPTIC ATROPHY, D (DEAFNESS).  I am legally blind and use a cane to get around. I wear hearing aids for high frequency hearing loss. I was diagnosed with Diabetes Mellitus when I was two years old and take insulin shots.  The Diabetes Insipidus is controlled by medication. I take 20 prescription pills every day to control my WS. I was diagnosed with WS when I was 12. I have other symptoms but I will talk about them another day.

How To Slow Wolfram Syndrome Progression?

Photo of Adam Zwan Excercising

Adam (in white) knows how to keep moving.

Steps toward a cure for diabetes and Wolfram Syndrome are being made and successful results are occurring in scientific research.  The treatments are not yet available for Wolfram patients so it’s wise to attempt slowing Wolfram progression until treatments are available.  In addition to being a Wolfram patient I am also a huge advocate for correcting one’s health on one’s own without the use of prescriptions.

From the age of 7-years old to 16-years old I was placed on nine different prescription drugs to treat my various ailments, ranging from diabetes to kidney failure to elevated cholesterol.  Upon my own research, I discovered that each prescription drug will eventually require an additional prescription for resulting side effects. I took it to heart and disciplined myself to edit lifestyle and correct health issues without the use of medications; today I am down to three prescriptions and doing very well.Photo of Adam Zwan Excercising

Diabetics without Wolfram can experience nerve damage simply due to uncontrolled glucose levels.  Thus, a Wolfram patient, whose central nervous system is genetically experiencing nerve damage, along with uncontrolled diabetes will be faced with hurried progression of kidney failure, vision loss, and hearing damage.  Therefore, I have spent a great deal of my life in becoming physically active and nutritionally sound so that I may more closely take control of my diabetes, my health, and my life.  Through a daily exercise routine and a low sugar/carbohydrate diet I have successfully kept my blood glucose levels, cholesterol, blood pressure, kidney function, vision, and hearing at a stable and satisfactory quality.

Photo of Adam Zwan excercisingIn my visits to Washington University School of Medicine in St. Louis during the annual Wolfram research event, doctors have told me that my lifestyle choices have proven to slow the progression of nerve damage caused by diabetes and Wolfram Syndrome.  In short, I was told to keep doing what I have been doing.

In January 2013, Adam Zwan was featured by the NBC affiliate in his hometown of Wilmington, North Carolina, WCET News. The story was to show what it is like for Adam to live  with Wolfram syndrome. That night, Adam began to experience severe abdominal pain and was rushed to the hospital where he remained for a week. Despite the delay from Adam’s hospital stay, the news team came back to finish their story.  Here is the five minute video on our good friend, Adam Zwan, where you can see for yourself the courage and spirit Adam exudes every day.

http://youtu.be/ElJXKyf1gf4

Being Sick and Having Surgery, NOT A Good Combination

Hello everyone!  As you know I was going to have my surgery on Wednesday, but unfortunately on Monday night I was up every hour throwing up.  I luckily didn’t feel sick but couldn’t keep anything down.  My blood sugar started to drop a little so I drank some juice but threw it up right away.  Luckily this happened later in the night so my blood sugar started to go back up again because I needed to give my insulin shot.  Fortunately I stopped throwing up around 8:00 am.  This was good so I could probably have the surgery if I didn’t get sick again, but bad because I was tired and weak.

Photo of Lauren and Pat GibiliscoI was able to sleep most of the day, but my mom who stayed up all night with me, had to stay awake during the day so when I needed up she could help me because I was so weak.  She was very exhausted and still had to drive me two hours in the next morning for my surgery.  She had to wait for me during the surgery and then drive 2 hours home that night.

I feel bad that my disease has to affect others in my family. My surgery went well.  I got to go home that day so that was good.  The surgery did not paralyze my bladder so this made me very happy.  It’s still too early to tell but everything seems to be working well and better than before.  I didn’t feel good for the next two days after the surgery but I am feeling good now.  Hopefully next week I can tell you that the botox is working very well.

Photo of Adam ZwanSacrifice it or never experience it?

Early in life I began having to face several limitations and make many sacrifices due to Wolfram Syndrome.  With the diagnosis of Type I diabetes at 7 years old I was asked to limit and sacrifice enriched white flour and sugars in order to manage glucose levels.  Staying away from sugary and or starchy foods, like pasta, candy, cookies, and rice, I gained a passion for high fibrous fruits and vegetables along with drinking over a gallon of water each day.  As time went on I allowed initiating a network of friends and getting involved in intimate relationships to be placed on the back burner so I could manage my health through nutrition and physical activity.

Around age 16 I was faced with the diagnosis of kidney disease (Diabetes Insipitus of the Kidneys) and was asked to limit water intake to drinking only when thirsty.  Now, I cannot drink a lot of water during the day to decrease hunger, which was not to difficult to deal with but another limitation none the less.

Following the diagnosis of kidney disease and Wolfram Syndrome I began having issues with my digestive system (Autonomic Nerve Dysfunction and Gastro Paresis).  My high fibrous diet and Wolfram were causing my digestive system to shutdown sporadically.  After three different occurrences of sitting in the hospital for several days hunched over in pain with nothing to eat or drink, I was placed on a low residue diet (high protein – low fiber).  Nutritionist and other experts advised me to increase the amount of fat in my diet to make up for caloric deficits.  However, having Gastro Paresis knocked a high fat diet out of left field because fat slows down the digestive system causing glucose levels to fluctuate.  At this point in time 85% of my current diet has to be sacrificed in order to keep my digestive system in working condition.  It is tough getting filled up every day on eggs, yogurt, meat, and seafood, but telling myself that “It could be better but it could always be worst!” makes things easier to deal with.

The next big stepping stone was having my driver’s license taken away due to visual difficulties at 25 years old.  Independent transportation taken away is yet to be the most difficult thing to get used to.  Depending on family and neighbors to transport me to and from work, the pharmacy, bank, gym, and the grocery store creates a conflict when trying to make my own schedule, develop a social life, and maintain a career.

All in all, I would have to say that I would rather never experience something than to have it taken away later down the road.  It is easy to get by without a girlfriend because I have never had one and so I do not really know what I am missing.  On the other hand, having things, like food groups and a driver’s license, taken away makes me wish with all my heart that I could continue or have them back.

I’m Getting Botox, But Not The Way You’d Think

Photo of Lauren GibiliscoToday I am going to visit my grandmother celebrating her 80th birthday. I love my grandma and it is always fun to get together with all my relatives. After my doctor visit on Monday, I found out that my urologist is going to try something new for my bladder issues. I have a neuro stimulator implanted for my bladder that constantly spasms. It worked really well before but lately its not working as well. I get up almost hourly every night to go to the bathroom. This really tires me out because I never get any sleep. He is going to inject botox into my bladder to keep the spasms from occurring. He said he has had a lot of luck with this. He said it was done often on patients with MS or Cerebal Palsy. So I agreed to try it. It will last for one year. The doctor also had to inform me that there was a chance that it could paralyze my bladder. This thought really scared me. I thought, I get all the weird things happening to my body, so does that mean that I will have a paralyzed bladder? It this occurs, I would have to catherize myself for a year. Even though I am reluctant to do it, I will if it means I could get some sleep. My mom wishes they would inject it into my mouth so I quit talking so much. My mom is mad because the doctor won’t take a little extra and apply it to my mom’s face. LOL.

Well I have had my presurgical checkup and will have the surgery done on Wednesday. It is a 2 hour trip both ways to get to Omaha where my doctor is. I can’t wait to see if it works or not. Today I saw my psychiatrist. It was just a quick visit. He wanted to know how my constant checking things were doing. Was the medication doing what it is supposed to do for my bipolar diagnosis? It was all fine. We have to make a 1 ½ hour trip each way to see him. We are only there for a total of ½ hour. I feel bad my mom has to drive me everywhere. This has been a busy week. I will let you know next week how the surgery went.