This week my talking watch stopped working – Lauren Gibilisco

Photo of Lauren GibiliscoWell I managed to drive my mom nuts this week. I have many items in my house that talk to me so I can function better. But this week my watch stopped working.

It was a talking watch. Without it I have trouble knowing what time it is. Time is important in our lives. We need to know when to give shots or medicines. We need to know what time it is to eat or even what time it is to take a nap or go to bed. Our lives revolve around the clock. So all throughout the day, I constantly asked my mom “what time is it?” It was a long week for her until my new watch arrived.

When I went to my volunteer job this week I bumped into someone in an office. It was someone else’s office so I didn’t know who it was. That person said you still don’t have my voice memorized yet. She told me she was Barb. When my parents owned their grocery store I had trouble always remembering voices especially because I have hearing loss. I came up with an idea to always say hello and they would have a name made up that started with their first initial. For example, Brianne would come up to me and say “hello Bambi.” Well when I told Barb about that idea I told her to make up a word starting with “B”. She said “I’m not going to call you that Lauren.” Everyone including myself burst out laughing. I said “that didn’t occur to me.” She said she would call me “beautiful” but I told her “brat” sounded more appropriate. Going along with this theme, I was talking to a friend of my moms. She asked if I was going to dress up for Halloween. I told her no. She said “come on, you could dress like a princess and your mom could dress up like a witch.” I told her jokingly “she doesn’t need a costume for that.”

One of my mom’s friends hated thinking of me home alone in our house all the time. I have no friends in this area. So she decided that every other Friday she would come get me and we would go to lunch or dinner together. She has known me since I was 5 years old. I bet she thinks it is no big deal, she enjoys herself. But to me it is a huge deal. It gives me something to look forward to every other week. It gets me out of the house. It gives me someone other than my mom to talk to. So look around, you may see someone who needs a little help. You might think it was nothing but you might have made that person’s day a lot more happier.

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Counting My Blessings – Adam Zwan

AdamHave you ever seen the movie Jack? In case you have not, Robin Williams (Jack) is the lead character who has a rare condition causing him to age three times as fast on the exterior. This is a good comparison when speaking of Wolfram Syndrome because as a 27 year old Wolfram patient I am, quote unquote, about 90 years old internally. Thus, it is like living the life of Jack but inside out.
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These are just the cold hard facts of living daily with Wolfram Syndrome – Lauren Gibilisco

I mentioned last week about feeling like a prisoner in my own home. Let me explain it a little further.

Photo of Lauren Gibilisco

Lauren Gibilisco

This is what it is like for me day to day in my own home. During the summer in Nebraska it is very warm here. I cannot be outside long if it is above 70 degrees. So in the summer I am pretty much stuck in the house. But the same thing goes inside the house. I need the temperature to be no higher than 65 degrees in the house. This is what is comfortable for me but it freezes my Mom and Dad. I also feel bad because it makes our air conditioning bill so high. Any hotter and I have trouble sleeping and exercising. I love to exercise but I can only do it a little at a time because I get so overheated. So, when I am home I either just exercise or watch TV. I only watch what I have seen before because I know what they are saying and doing. But, unfortunately it becomes a little boring watching the same shows over and over again.

Last week I was able to leave the house and go to an outside wedding. There was a nice breeze and it was a little above 70. I was able to enjoy the wedding because I was just standing there. I could only stay for about an hour though because I began to get overheated.

The winter time is a little better for me. I am able to exercise more and go outside to chill out if I become too overheated. It used to be that it was hard going outside if there was snow on the ground. Everything was white and I couldn’t see where anything was, like the sidewalk or street. Now my vision has gotten so much worse so it doesn’t really matter anymore.

I do not say these things for pity or to depress anyone. These are just the cold hard facts of living daily with Wolfram Syndrome. So that is why I sometimes feel like a prisoner in my own house. But I wouldn’t change anything. This is who I am and I love being who I am. So if you ever see anyone outside in the winter wearing only a T­-shirt and shorts, don’t worry it’s just me.

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Experience Life and Enjoy the Now! – Adam Zwan

Statistics are only numbers but for me they are motivation to stay physically active and nutritionally sound.

Photo of Adam ZwanAfter turning 27-years old I thought about the Wolfram Syndrome statistics of 28-31 years of age as the life expectancy. I do not believe it will happen next year but at the same time I will not deny the possibility. All the while, I go to the gym everyday and tell myself that if an early life checkout finds me, I want to be able to say, legitimately, that I never gave up on fitness and nutrition. I did everything in my control to stay healthy.
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Adventures in blindness – Lauren Gibilisco

Photo of Lauren GibiliscoI’ve had a few incidences lately due to not being able to see.

The first one was when we went to Olive Garden to eat. When they took us to the table my mom told me it was a booth so I needed to scoot down. So I kept scooting expecting to run into a wall but instead I almost sat right on this ladies lap that was beside me. My mom forgot to tell me it was an open booth so there people on both sides of us. Of course once again I was embarrassed and promptly told the lady that I was very, very sorry. I told her I was blind and she said that’s ok, she was fine.

If I haven’t told you, I shred paper for our local telecommunication center. Who better to do it than someone who can’t see what’s on the confidential papers. So one day I went to get someone’s shredding and I couldn’t find it. Usually they put it in front of me. But this girl didn’t get up to put it in front of me and proceeded to tell me that it was over there. I turned a few times and she kept saying over there, over there until I found it. Once I got it I turned to her and said, “Were you pointing your finger?”  She said “yes, it’s just habit.” Then they all started laughing because she knew that I couldn’t see. It just a habit to point to people when they are looking for something forgetting a blind person can’t see them pointing.

I was always colorblind but now I can’t even see colors. It is pretty much just light and dark but mostly dark. I have trouble knowing if a light in the house is on or off during the day because of the sunlight coming through.  My mom and I went shopping and she ran into some really cute clothes that she thought my sister would like. She turned to me and said “isn’t this cute?” Of course she knew what she said but then she said sadly that I really wish you could see. It’s just like a right of passage that a mother and daughter could go shopping together and have a fun time looking at clothes.  It doesn’t bother me much but it really bothers my mom.

My mom works hard during the week. On the weekends she tries to get some projects done. A couple of weekends ago she needed to paint the garage door. Of course it was a very hot day. Temps were in the high 90’s. I really wanted to help my mom out. I like being able to do things for my mom. So I asked her if I could help. She struggled to find the right words to say to me. She said “I really wish you could but for one it’s too hot for you to be outside and that she really was worried I would get more paint on the driveway than on the door.” Lol. She was probably right. So I went back into the house feeling like a prisoner in my own home.

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No antibiotics for me, thanks! – Adam Zwan

My uncle and aunt from New Orleans, LA are retiring and moving to Wilmington, NC during August this year. As a welcome to Wilmington party the rest of the family helped to prep my relative’s new home.

AdamWe tried to show them a good time by going to restaurants and with trips to the beach. It was all a great welcome to Wilmington venue until flights were taking off and my body started to experience health complications.

It all started in the middle of the week on Wednesday with late night shivering and hot flashes. After experiencing fever symptom for three nights in a row I was taken to the emergency room to find out what was going on. I spent Friday night in the ER waiting to hear answers. After the urinalysis, blood draws, x-rays and questioning it was finally diagnosed. Since Wednesday the fever occurrences and shivering were all symptoms of bacteria in my urinary track, bladder, and kindest.

The infections have occurred so often that I was advised not to seek antibiotics until I had a fever that would not break and or I was experiencing unbearable pain.   Thus, if I keep taking antibiotic for every infection the bacteria will evolve into an incurable one. As a result my infections are resistant to all antibiotics except for two IV antibiotics. This is my primary reason for not rushing to the ER before Friday night. Also, if the infections reach a resistance to the last two IVs then the next bladder infection will result in high blood pressure, high heart rate, and pain that will all finish with a heart attack.

By Saturday morning I was released home with three different medications to attempt until the blood cultures were executed. So right now I am experiencing any pain or shivering but the wait for blood cultures to confirm I am on the right antibiotics continues. All in all, welcome to Wilmington Aunt Gina and Uncle Rick!

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It’s so close! – Adam Zwan

Photo of Adam ZwanIt is difficult not to imagine what the future may hold when medical breakthroughs are on the horizon. Conversations took place during the last Wolfram clinic regarding clinical trials next summer. Clinical trials are fascinating movements forward in the lives of Wolfram Syndrome patients.

After hearing the news that research is going well and treatments are a possibility, I cannot stop thinking about how my life with Wolfram Syndrome may turn a corner in the years to come. Chasing glucose levels, vision loss, hearing loss, kidney failure, and many other complications due to Wolfram Syndrome will all be dealt with in simpler terms if clinical trials are a success. I think a unique treatment for Wolfram and or even diabetes would be as big as Bill Gates and Microsoft.

Even though having high hopes and dreaming of what could be can set a person up to be further disappointed; hope is one of the driving forces behind life’s remarkable occurrences. I dream everyday about getting a full nights rest and not having to wake up every two hours to check my glucose, as well as not experiencing mood swings due to glucose fluctuations all day. Also, I hope to be able to see and hear well enough to drive myself where I need to go and be able to not hassle with visual and hearing difficulties at work. Then there is the hope of being able to eat a well balanced dies and not eliminate certain food groups so that I can stay out of the emergency room. It is so close I can feel it because if Dr. Urano’s medical breakthrough is a success all my prayers will be answered.

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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.

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New Beginnings – Adam Zwan

By Adam Zwan

Photo of Wolfram GroupThe 2014 Wolfram clinic occurred last week and it was a fantastic one to say the least. It seems that Washington University of St. Louis research clinic has found its second wind because the entire Wolfram research event was operated with ease and everyone, patients and professional, was enthusiastic and relaxed.

The very first year was extremely chaotic because orientation, clinic, and the final meeting all took place in three days. Also, the first participating ten patients were put through every single research test so testing for everyone began at 8 a.m. and lasted until 5 p.m. However, this year was calmer because the logistics and schedule were in favor of each other within a total of five days. Orientation took place on Tuesday night after all patients arrived and some patients were able to begin testing during their initial arrival in St. Louis. For instance, a couple of patients were able to finish their MRI before Wednesday morning came along.

Instead of having orientation first thing Wednesday morning clinical testing could begin right away after breakfast. Wednesday, Thursday, and Friday were like a breeze because patients could choose to have all morning and or afternoon appointments. Also, because scheduling was not such a conflict most physicians were ahead of schedule and could begin the testing early and finish early.

The Wolfram clinic all ended on Saturday morning with thank yous, research updates, and presentations. One thing that was touched on was the advances that are making it possible for clinical trials to begin next year on participating patients in hopes of slowing and or halting the progression of Wolfram. This news caused eyebrow lifts and smiles amongst all Wolfram families. Hearing that research is doing very well and the possibility of medications and stem cell treatment all make the horizon much brighter for the future of Wolfram Syndrome. The 2014 Wolfram clinic has given me along with the other Wolfram patient’s great hopes for the future.

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Just Keep Fighting! – Adam Zwan

Adam ZwanEveryone keeps telling me to be proud of myself for dealing with everything I am going through associated with Wolfram Syndrome and not be so hard on myself for any unexpected issue; it seems to always be easier said than done. I know that I have had my fair share of health issues and I am still willing and able to keep moving but incidents, like the one a couple days ago, make it difficult to wake up each morning and accept everything.

It all started with an abnormal schedule due to my on-call employment status. It was a pool class from 9 to 10 a.m., in a room that is kept at 86 degrees, which caused my glucose to fluctuate. After returning home I quickly put my ground turkey in the oven to bake for an hour. Within that hour my glucose dropped and the event began.

For about two hours I felt like I was in a living nightmare. Everything appeared out of order and misplaced. I kept trying to gain my bearings by saying my name and repeating my home address is and that is where I am. Repeatedly, I kept saying “what is going on; am I going insane? Get a hold of yourself!” During all this chaos my father called the house to find out that I sounded strange. The next thing I remember is waking up on the sofa with two EMS officers asking me questions and feeding me a turkey sandwich and orange juice. When I slowly returned coherent the officers informed me that they were called to check on me and when they arrived I was found on the sofa saying wild and unusual things.

To this day I continue replaying the incident step by step in my head trying to come to terms with it all and say ‘This is my life so do the best you can with what you have.” Thinking about events like these make me hurt all over and make me want to find a corner and ball my eyes out. Instead, I keep all negative thoughts and feelings bundled up inside and take it out on myself every morning at the gym. When speaking about my methods to family members they tell me that I should not be so hard on myself and to be proud of all my accomplishments dealing with diabetes and Wolfram Syndrome. In simplest terms, I cannot stop fighting for more and pushing forward with life

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