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Just Waiting Around – By Adam Zwan

Photo of Adam Zwan at the beach.

Adam Zwan

When looking at the past 12 months I have noticed all the patient waiting I have taken part in.  It seems that the time of waiting is the hardest part of anything.  Whether it is waiting on a medical cure, an employment decision, or an everyday event, waiting to see how things turn out is the greatest challenge.

In my days, I am forced to wait and see what I can accomplish due to available transportation.  Each day involves waiting for a ride or waiting to see if anyone is available to give me a ride to complete tasks and or chores, like work, the gym, grocery store etc.  The waiting for transportation also involves waiting to receive phone call that transportation is not available or has been canceled.

In addition, I have been applying for full time job opportunities everywhere from Charlotte, NC to Portland, OR and the hard truth of waiting is no different.  The process of searching followed by the detailed effort of applying is all finished with a long term of waiting on email messages and phone calls.  After questions are answered and an interview takes place comes the unbearable wait to hear of the final decision.  It is all the nature of the business but telling myself that does not make things easier.

Similarly, waiting for a successful cure for Wolfram Syndrome presents the same restless wait.  It is said that a cure, which stops the progression of Wolfram Syndrome, is the first step.  The next step is taking action to repair damages that have occurred due to the breakdown of my central nervous system.  While waiting to see how the possible cure turns out, I cannot help but dream of living without diabetes and kidney failure.  Also, the possibility of a cure creates optimistic thoughts of obtaining 20/20 vision and being able to drive again.  These thoughts and dreams only make the time of waiting seem like forever.  All in all, the patient waiting continues until conclusions are discovered.

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Living With Wolfram Syndrome – Lauren Gibilisco

Trust Your Gut

Photo of Lauren GibiliscoI love to exercise and it gives me something to do during the day. So much so that last Wednesday I did 4000 leg lifts throughout the day. By Thursday my legs were hurting very badly and my mom said it was probably from doing too much exercise. She told me no exercise for the next several days because I probably strained my muscles. I rested all day Thursday but on Friday morning they felt a little worse. My mom rubbed some Ben-Gay on my legs, gave me some Ibuprofen and again said to rest. I had plans on Saturday morning to go out to breakfast with a friend and do some shopping. I made it through breakfast but by the time she got to the store my legs were really hurting. I just sat in the car while she picked up a few things she needed. By the time I got home I could hardly walk. My mom had an appointment and told me to go soak in the tub. She was gone two hours and during that time I felt very paranoid and called her four times. I asked her if it could be low sodium. I had very low sodium two years ago. For those that know sodium levels, mine was 109. She said no but after she hung up the phone she called my aunt who is a nurse. My aunt said I would be confused not paranoid. She said it wouldn’t hurt to have me eat some salty foods like ham and see if I felt better. So my mom stopped and bought meat lovers pizza that had bacon, pepperoni, ham and sausage on it. She brought it home and I ate it and said my legs were feeling better. My mom waited for my dad to come home and then she called the emergency room to talk to the doctor. She asked if we could come up and get my sodium checked. She described how my legs hurt, my exercises and being paranoid. He also said I would be confused and it sounded like muscle strain. She told him that last time I was very paranoid also. He said to wait till Monday and see my regular doctor. My mom had to do some work at the store so she told my dad to watch me carefully and call her if anything happened. About 45 minutes later I had my dad call her. I was feeling very weak and felt like passing out. My jaw was hurting badly and my mouth was quivering. My mom said she would be right home. She got home and took me immediately to the emergency room.

By that time I was feeling very bad and was very quiet. For those that know me, you know that would be a huge sign that something was wrong. LOL. The hospital just installed a new computer system and so we had to input all my information into the system. It took forever. My mom told them to test my sodium while we were waiting. It was an hour later before we had the results. The doctor came in and told us that I had a sodium level of 121 and would have to be admitted. Lord only knows how low I would have been if my mom hadn’t had me eat that pizza. They immediately began an IV sodium drip. All this time my mom was answering their questions. First she had to tell them all my medications, which are 11 different ones and the dosage. She always carries a list so she can just hand it to them. They didn’t know what most of these drugs were, and of course had no idea what Wolfram Syndrome was. As my mother was explaining everything a nurse asked my mom if she was a nurse or doctor. She laughed and said, no, she was just an informed mom of a child with a rare disease that no one knows anything about. She said she had a team of people that have taught each other so very much about Wolfram Syndrome. That team was all the mothers and dads. She was very impressed with my mom’s knowledge. About this time I started talking again. Yep, ….I was feeling much better and my jaw didn’t hurt anymore so I was able to start talking nonstop again. I was on my way to recovery.

My mom is going to write the next few lines.

For those reading this, I know you understand what I was going through. Bottom line is trust your gut. If it feels wrong than it probably is. Her symptoms were not the usual ones, but what with Wolfram Syndrome are. Don’t be afraid to respectfully disagree with your doctor and insist that they run tests. There is no one who knows their child better than the parents. Doctors are not always right. This statement does not include Dr. Fumi, Dr. Marshall. Dr. Hershey, Dr. White, Dr. Hoekel etc….. We could be wrong sometimes but very often we are right. Trust yourself and advocate for your child.

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Living With Wolfram Syndrome – Adam Zwan

Strange Truth

Photo of Adam Zwan

Adam Zwan

Do you live a risky life or do you fly straight and narrow?  After being diagnosed with Wolfram Syndrome I began paying close attention to my surroundings and the lives of others.  Strangely, it became clear that individuals who live life without taking chances or making risky decisions end up with the dull side of the blade.  Unfortunately for people who avoid trouble and mischief, consequences are paid with permanent life changes.  On the other hand, those who live on the edge seem to have a little more fun in their lifetime; these individuals may be faced with consequences but the price is paid and the risky lifestyle is continued.

For instance, when someone bends the rules a little bit or even breaks a law, like drinking and driving, he or she gets caught, pays some fees, and is able to repeat the same mistake again.  After paying the consequences a risky person will look back and say “it was fun and maybe I’ll try it again.”

For someone like me with Wolfram Syndrome risks may involve eating a certain food or exercising later in the evening.  Thus, these small risks end in the emergency room with doctors telling me “it is a wait and see process and we cannot give you pain medication because it will make things worse.”  I have never broken any laws or made my parents worry that I might cause trouble but I have experienced hardships, sacrifices, and limitations throughout my whole life.  Whether it is a sibling, a friend, or someone you read about, it appears that lifetime consequences are faced by individuals who least deserve them.

When my mind is filled with thoughts of jealousy I just go to the gym sweat until my mind is clear, exercise until it hurts, and make sure I don’t have enough energy to think when I walk out the door.  People tell me all the time that I am a good guy and do not deserve all the issues I am faced with.  The only thing I can do is reply that life is not always fair and those who can rise to the challenge and beat the odds can make a wonderful difference in the community.

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Living With Wolfram Syndrome – Lauren Gibilisco

Chores Anyone?

Photo of Lauren GibiliscoAs you know, living with Wolfram syndrome poses many challenges for me, including doing my chores.  With my vision impaired, I’ve had to come up with different ways of doing things and I thought I’d share them with you.

I start with making my bed.  My bedspread has two raised rope designs going vertical.  This lets me know how far to pull it on each side so it is even.

Almost every day I empty the dishwasher.  I know how the dishes feel so I know where to put them.  How large the bowl is lets me also know where it belongs.  Every dish has a certain spot in our cabinets so I know exactly where they go.  I run my hands over the spokes in the dishwasher to make sure I have gotten everything out.  Since I know where the dishes are I know how to set the table.  The only thing I have trouble with is the salt and pepper shakers but we put a braille strip on each item so I know what it is.

They do not let me clear the table.  I have broken too many dishes slamming them on top of each other.  Or I run into them when they are coming through.   I am also able to get things out of the refrigerator because again everything has a certain place to go.  Although sometimes my dad doesn’t put it back where it should go. One day when we were having hotdogs for lunch my dad said “why is there chocolate syrup on the table?”  I thought it was mustard.  Good thing he saw it before I put it on my hotdog.  That would not have been good.  My mom doesn’t like me cooking on the stove while she isn’t there.  She said she doesn’t want to come home from a long day at work and find the fire dept there.

I also dust and vacuum both the upstairs and the downstairs.  I’m not sure I get everthing wiped off or picked up but I just try to keep going in a straight line hoping I am going in the right direction.  I also sweep the kitchen and bathroom floors.  I sweep hopefully into a pile and bend down and pick it up with the dustpan. I listen to see how much is coming out of the dustpan so I know how much is still being picked up.  I can’t see what I am doing so I just do it several times until I think everything is gone.  I also use my bare feet to walk around and feel if I missed anything.

I am in charge of doing the family wash.  I know what my dad’s shirts feel like with all the buttons.  I also know the weight and feel of his white tee-shirts so I am able to separate the whites from the darks.  Of course I am able to tell the difference between a top and pants so I know which to hang and which to fold.  My mom also buys the pod detergents so I don’t have to worry about measuring everything or knowing where to pour.  I am also able to put the washer and dryer on the right settings because we use stick on raised dots.  These go on the start buttons and the temperature settings so I know how to adjust for the different types of clothes.

The buttons are also used on the stove and microwave.  It is digital so I have the dots put on the one, the three and the five buttons so I know the correct temperatures or time settings.  Now getting food out of the oven is a little bit harder.  You don’t want to go feeling around too much in a hot oven looking for the pan.  My mom bought the silicon gloves that go up to my elbows.  You cannot get burned with these on.  So I feel confident reaching in the oven.  They also wipe off cleanly or can be put in the dishwasher if anything spills on them.

I spend a lot of time at home alone.  My parents also work very hard and long hours.  Doing all these chores makes me feel good that I am able to contribute to my family.  It also gives me something to do every day instead of just watching tv or listening to the radio.

So there you have it!  That’s how I do my chores while living with Wolfram syndrome.  Now I have to get back to work!

Lauren

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Living With Wolfram Syndrome – Adam Zwan

What is Taekwondo to Me?

As a Wolfram Syndrome patient, I have learned that controlling my diabetes and my overall health can slow Adam Zwan doing Taikwando.down the progression of any illness.  Thus, I have become a huge advocate for fitness and nutrition as a means of promoting quality years of life.  Health is a broad term that encompasses physical, mental, psychological, intellectual, and spiritual health.

When I was first asked to help teach taekwondo classes I was eager to help as well as improve aspects of my own physical health.  As a trade off, I would assist in teaching classes and then be taught the art of taekwondo to help improve my balance, flexibility, and technique.  After a few weeks of assistance I was shown that lessons of taekwondo can be used to teach various aspects of health.  Members of the academy ranged from 2 to 16 years old and learned not only taekwondo but how to make a difference at home, in school, and in the community.

It is important to know how to defend one’s self and how to avoid danger but equally valuable to show respect, discipline, and self control.  Behavioral attributes are woven into each lesson of taekwondo and prove to create amazing men and women for the future.  The fast food industry targets children so that eating habits are developed early in life; the same philosophy is used in teaching taekwondo but in contrast, the members I engage learn proper manners, how to be respectful, and how to interact with others using a positive demeanor.

After several months of training and teaching taekwondo I see improvements within myself as well as the members who I have engaged.  While I experience better balance and flexibility the members are bringing n progress reports with better grades, notes from parents explaining good deeds performed at home and in the community, and showing respect and discipline towards instructors and peers.  Taekwondo has proven to be a valuable lesson in life that teaches not only self defense but behavioral attributes that mold bright futures for the next generation.

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Living With Wolfram Syndrome – Lauren Gibilisco

Lauren GibiliscoHello Everyone,

The last few weeks have been fun and entertaining.  It started out on St. Patrick’s Day.

I am 75% Irish and our family has always celebrated it.  When I went to work on St. Patrick’s Day I was dressed as a leprechaun.  My clothing was green and I wore a green hat. I had shamrock on my face and of course I had the height of a leprechaun because I am a wee bit short.  I have a pretty good Irish accent and I went around saying “top of the morning to ya.”

After that I went back with my mom to the grocery store.  I became the leprechaun greeter.  The customers all loved me sharing my heritage with them.

Then last week I went to the endocrinologist.  The resident asked me questions and took my information down.  She said she would discuss my health with the doctor.  The door opened seconds later and I expected to see the doctor.  But it was the nurse who came in.  She asked me if I had my machine and if I would test my blood sugar.  I said I had just checked it before coming in here and I was fine.  She said to check it anyway.  Then my mom asked “why do they think she is low?”  The nurse said that the resident thought I was talking too much and too fast and might have a low blood sugar.  I checked my blood sugar and it was fine.  The nurse said “as soon as I saw you I knew that wasn’t the case.”  She said “that’s just typical Lauren.” LOL

I went out to dinner with a couple of friends.  One of them had just gotten engaged.  She said it was going to be a small wedding and she had to limit the invitations, but she said I made the cut.  A couple of days later I received a phone call from two of my friends who are in college.  I hadn’t heard from them in over a year so it was a pleasant surprise.  They came over to my house and we just talked and got caught up on our lives and watched a movie.

This last weekend I went up to Omaha to see my cousin who was in a musical at college.  The musical was the Phantom of the Opera.  I had seen the Broadway show in New York City about nine years ago.  At that time I could still see.  So even though I was not able to see the characters on stage I knew from the music what was going on.  All my aunts came down to see the musical so I was able to spend time with them and my grandparents.  It is always nice sharing memories and laughs.

The last few weeks have been busy and fun.  It was great seeing old friends, new friends and relatives.  Every time we get together we create a lasting memory.

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Living With Wolfram Syndrome – Adam Zwan

Photo of Adam ZwanPatience

All great things are worth waiting for.  Being patient has proven to be one of my greatest attributes and has served me well throughout life.  No matter the task, managing time wisely and being patient has given me the ability to start things, do them well, and finish with satisfaction.

While in grade school, I would start assignments, projects, and other school work as soon as the task was given.  Early in life, I discovered that procrastination always led to an overwhelming and rushed ending.  My to-do list would get cluttered with assignments and I would have to rush to get things done on time.  By 3rd grade I changed my tactics and began breaking things down and completing them little by little so that by the deadline I would only have to make the final touches.  Working piece by piece I could patiently complete any task on time and in a manner that met all demands.

The next chapter in life involved college and driving.  College went very well because I tackled the studying, work, and assignments the same way I did in grade school, with patience and good time management.  Patience also helped me regarding college graduation.  Instead of rushing to graduate and be done with school, I patiently completed course after course and made sure that each school semester ended with grades that I could be proud of.  Fortunately, I was able to graduate with a grade point average that took my resume to new heights.  In the same era, driving was a privilege that I valued and understood that by beginning a journey ahead of schedule I could patiently make my way to a destination and avoid rushed road rage.  I always felt that if I was early, I was on time, and if I was on time, I was late.

Currently, I am patiently awaiting a successful cure for Wolfram Syndrome.  The last I heard, drugs and stem cell research were showing successful results using mice and pigs; in approximately two years medical trials will begin on human patients.  Patience will serve me well in this instance because if researchers are patient in discovering a cure, testing the cure, and proving that it works then the path of patiently waiting will end with a great outcome.  By holding on and letting things take place as they should, I will be able to sustain the health I still have and look forward to successful repairs of damaged nerves.

All in all, patience has served me well in life and taught me that impatience can lead to unsatisfactory finish lines.  Life’s lesson: all great things are worth waiting for!

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Living With Wolfram Syndrome – Lauren Gibilisco

The Ups and Downs of Vision Loss

Photo of Lauren and Megan Gibilisco

Lauren and Megan Gibilisco

My week turned out to be quite eventful.  I am going to give you the ups and downs of vision loss.

It all started out when I knocked some sense into myself.  Inside the house I do not use my cane.  I went to go turn off the television and thought I was walking towards the light.  Unfortunately I didn’t see the wall in front of me and ran smack into it.  It knocked me right on my butt.  I went downstairs to show my mom my mouth.  I didn’t know but I had blood running down my face.  I had split my lip all the way back to the gum. My lower lip had teeth impressions where I bit down.   My upper lip was already starting to get a fat lip.  I am very fortunate that I did not knock out any teeth or break my nose.  So I had my mom take a picture and send it to my phone.  Three days later when I went to work I showed everyone my pictures.  They asked how did I do that.  My reply was I was standing outside and a large bird ran into me beak first.  I couldn’t believe that several people actually believed that.  My mom told everyone that I was fine because I am still able to talk.

My sister came home from Omaha for the weekend.  She brought her new puppy home for us to see.  She is a shorkie.  Her mom was a shih ti and her dad a yorkie.  Her name is Emmy.  This puppy is little.  She only weighs two pounds and will only grow to be five pounds.  I do not like animals much but I have grown fond of this puppy.  She loves to play and I love that I can play with her even though I can’t see her.  The only problem I have is that I worry about stepping on her.  She loves to run beside me when I leave a room.  So if she is going to be around me she will just have to learn not to walk in front of me.

My sister wanted to show off the puppy to her best friend. We drove to her house.  Luckily her brother came over to visit also.  Zach and I have been best friends since we were little.  He is getting married in July.  He wanted me to be a part of the wedding and asked me if I would like to be in charge of the guest book.  I asked him if I had to sign people’s names and he said no.  Zach said I would be like a greeter.  I think the job is perfect.  I just get to sit there looking lovely and greet people as they come in.  Perfect job for someone who likes to talk.

So for a week that I thought would be boring turned out to be quite exciting.  That just teaches you that losing your vision doesn’t mean your life will stop. So you never know what is going to jump in front of you….even if it’s a wall.


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Living With Wolfram Syndrome – Adam Zwan

Self-confidence

Photo of Adam ZwanHaving confidence in one’s self is as important in life as breathing.  Without an adequate amount of confidence a person suffers throughout life dealing with mental health.  Having a lack of confidence may make it difficult to finish tasks, create new goals, initiate relationships, and can make a person feel severely depressed.  One must be satisfied with one’s self before he or she can enjoy life.

As a Wolfram patient, I have struggled to increase and maintain self-confidence most of my life.  Psychology claims that a child’s confidence is first developed in middle school (5th-8th grade).  When I was a middle school student I was overweight, payed too much attention to what other students would say or do to me, and did not have an outgoing personality that initiated relationships.  The next stepping stone took place in high school.  I started eating right, becoming more physically active, and worked on my personality, which all helped me to boost my confidence.  While helping out the baseball team and socializing more with peer students, I was feeling better about myself and my surroundings.

My level of confidence was decent while in high school and college but after graduating with a bachelor’s degree a few things changed.  Transferring through three different colleges before graduating made it tough to develop a network of friends and contacts.  Wolfram Syndrome began taking a toll and sending me to the emergency room for various reasons.  With worsening vision, I lost the luxury of driving and independent travel.  After numerous twists and turns, my confidence was again shattered.

Fortunately, I am too strong to just break down and quit.  I continue to exercise everyday to clear my head of any negativity and jumpstart each day relaxed and refreshed.  If I begin a task I make sure that I finish it and finish it well to emphasize the feelings of accomplishment.  The next step in becoming satisfied with myself is to live in an area with a system of public transportation so that I may live and travel independently.  Like most things in life, having a high level of confidence and perseverance will lead to great outcomes.

 

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It’s The Little Things

Hi Everyone,

I have had a couple of busy weeks.  It started out with a trip to Cabela’s.  My father is an avid fisherman and he and I snuck out of the house to go there. When we go there I had to use the restroom.  I was not familiar with this restroom.  As I was leaving I was reaching for the door and flipped off the light switch accidentally.  There was another lady in the bathroom at the time.  She laughed and I apologized and then she told me where to find the door knob.

Since we are on the subject of bathrooms I am going rant a little.  Why can’t bathrooms all be made the same way.  Next time you go in a restroom, close your eyes and try to find where the toilet paper is, how to and where to flush the toilet, find the sink, paper towels and soap.  I can tell you, it is not a place where you want to be feeling around.  They have laws requiring bathrooms to be modified for people in wheel chairs, so why can’t they design a universal way to have bathrooms all be the same for blind people?

Photo of Lauren Gibilisco and her parents

My Dad, me and my Mom

My dad decided we needed a little treat and he wanted to go to Dairy Queen.  The problem is that my dad gets lost a lot.  So he asked me, a blind person, to lead him there and I did! Speaking of treats, I have made the supreme sacrifice of giving up sweets for Lent.  I have a love of ice-cream.  It is the one food that is cold and slides down my throat so I don’t have trouble with choking issues, which is a major problem I have.  So I am sorry if my blogs aren’t as sweetly written as before.

A friend of mine picked me up for lunch one day last week. She took me to a buffet.  She had to walk with me through the buffet naming all the items.  She didn’t think of that when deciding where to eat.  That’s something sighted people don’t have to think about.  It’s the little things.

Later we went to a potluck for our church.  My mom had to help serve so she was busy and my dad had to help me.  My dad is not used to helping me.  My mom is usually always around to help.  He went to my mom and said “what do I do?” She replied “you go pick up a plate and fill it with things you know Lauren would like to eat.”  Then she turned to the other ladies in the kitchen and said “Lord help if I die first.  Lauren would probably starve to death or never leave the house.”  Going out with my dad and having my mom not there is always an adventure.  He often just walks away and expects that I will follow, so he turns around to talk to me and I’m not there.  He then panics and runs back to find where he left me.  My dad is a little helpless but I love him for trying.

Hope everyone has a good week.

Lauren

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