Long Time No See

I had a great week.  I just returned from the Wolfram Clinic in St. Louis.  This is my 5th year going to the clinic.  I am going to tell you the difficulties I had of hearing and seeing.

Photo of Dr. Urano and Lauren Gibilisco

Dr. Urano and me at my 5th Wolfram Clinic.

The first night we had orientation.  We were to go to different stations to sign papers and collect supplies.  I sat at Dr. Urano’s table and chatted for a while.  After we left I said to my mom “does he have an accent and where is he from? “My mom told me he was Japanese.  This is the 5th year of seeing him and I never knew he was Japanese.  We had a good laugh over that.  It is very difficult to have someone come up to you that you can’t see and can hardly hear.  As we went from table to table I greeted the doctors with “long time no see.”  I wanted to see how many of them would catch it.

In my appointment with the audiologist I had to listen for beeps, repeat words and sentences.  My first sentence was “the cat is sitting on the bed.”  I repeated “the cat is shitting on the bed.”  I asked her if that sentence was what she said.  She could hardly answer me because she was laughing so hard.  She said I gave her the laugh for the day.

One day we took the trolley to go explore Forest Park.  It was very difficult getting up into the trolley.  There were two steep steps I had to go up and making sure I didn’t fall off the curb.  I made it onto the trolley and had to get to my seat.  Again I had to step up to get there.  I grabbed for the seat in front of me but instead I grabbed the hair of the lady in front of me.  I was mortified and apologized to the lady and my mom did also.  She said “she was fine.”  We all had a good laugh over that.

I realized how the information that the doctors get from us will one day lead to a cure.  Dr. Urano is creating new eye cells right now that may greatly help or reverse eyesight.  The clinics are great.  It is so nice seeing all the people there each year.  We feel like a family.  But all the testing and blood samples may one day help stop or cure Wolfram Syndrome.  I for one am so happy to be a part of this and to be a part of the cure.  What better way to help others out.

Family Vacation Fun

I had a wonderful week spending time with my family at Sherman Reservoir in Nebraska.

Gibilisco Girls

The Gibilisco Girls

We were able to take our first family vacation in 13 years. With my parents store they were not able to get away together and then my sister was in college.  Since my parents sold their store we are now able to spend quality time with each other.

My sister drove home with her puppy to spend the week with us.  I had a lot of fun playing with her dog while she was here.  We rented a cabin at the lake so we could go fishing.  When we arrived at the marina we forgot that we girls did not have fishing licenses.  It was no problem for my mom and sister to show their driving license to get it.  When it came to me the person at the desk said “where is your license.”  I told her “I’m blind I don’t have a license.” She laughed and said she was sorry but I have to have one to let you fish.

Out on the boat it was fun feeling the waves.  You don’t need a license to drive the boat, so I was able to drive the boat since I had a wide open space with nothing to hit.  The only problem I had was I was starting to get hot so my dad dropped me and my mom off at the cabin and they went out fishing again.

We girls took a day to go shopping.  My sister wanted some new furniture. They were looking for rugs and told me to keep an eye out for one. “Haha, very funny” I said. It had been a busy week so I was getting tired.  My fatigue factor kicked in and they had to set me down in a chair because I was so exhausted.

I loved spending time with my family.  It was fun and everyone had a good time. They only problem I had was I hated how my disease had to be factored in to our experiences.  My family is very understanding of it and it did not stop us from having fun. It is great having a close and wonderful family.

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I Have The Best Sister In The World – By Lauren Gibilisco

Photo of Lauren and Megan Gibilisco

Lauren and Megan Gibilisco

Last year my sister came up with a great idea for a Christmas present. It’s hard to get something for someone who is blind. She got tickets for us to go to Mannheim Steamroller.

I thought this was a great idea because I could hear the music and they were going to play some Christmas songs which I love. The morning of the event, it started to snow. By evening it was a blizzard and the event got cancelled. My sister was very sad that we had to miss the show.

After Christmas she heard that the Lion King Musical was being performed in Omaha which is where she lives. So she got tickets for us to go to that. Again, I can’t see the stage but I could enjoy the music and I would know what was going on because I had seen it many times when I still had vision. We got all dressed up and went out to dinner and then to the show. We forgot to get my handicap sticker so we had to walk several blocks and it was very cold and windy. We arrived there just before it was to start. My sister handed the tickets in and was informed that it was for the following night and I had other plans. So my sister took a friend with her the next night. She was very disappointed again that she was unable to give me my Christmas present.

This April she was given tickets to see the Cinderella Musical. It is in the theater in Omaha again. She called me up and told me that we were going to go to this since the last two events didn’t take place. This time we got there on the right night and sat down to listen to the music and singing. Cinderella was a favorite of mine. Again I couldn’t see the stage but I could hear the music and would know what was going on from what they were singing. So the lights went down and the singing started. My sister and I looked at each other….they were singing in Italian. We couldn’t understand a word they were saying. We did enjoy the music and spending time with each other. When we left the musical, my sister said “never again are we doing this.” After three times it was apparent that this just wasn’t the great Christmas present she imagined.

The next night we were watching a movie at her apartment. She turned to me and asked “Lauren, is it too dark in here for you?” I guess from the stunned look on my face she realized what she had just said to me. We rolled on the ground laughing at that one.

The moral of the story is that I have the best sister in the world.

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.

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!


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.

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.


Living With Wolfram Syndrome – Lauren Gibilisco

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.

Living With Wolfram Syndrome – Lauren Gibilisco

“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. ☺

Living With Wolfram Syndrome – Lauren Gibilisco

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.