A day in the life – Lauren Gibilisco

Wolfram syndrome patient Lauren GibiliscoThrough the holidays at work there were Christmas trees up in several of the rooms. When I was passing through one room, I saw a tall shadow and I said hello but no one said anything. So I took my cane and poked at it and realized it was not a person but a tree. How embarrassing!

I told you in my last blog that I was going to ramp up my exercising to lose those holiday pounds. Recently, I was watching TV and there was a commercial about losing weight fast. So of course, it caught my attention. Who wouldn’t want a quick way to lose weight? I listened to it hoping they were going to talk about some new exercise to do, but it was for a “drink product.” As I was listening to it, I realized I was eating a bowl of ice cream. Was this a sign that I was not supposed to eat it? Nope, it tasted too good so I ate it anyway. But afterwards I did a lot of exercising so I wouldn’t feel so guilty.

I have mentioned that living with Wolfram syndrome, I have a lot of trouble with heat intolerance. For the last month we have had temperatures in the low teens with wind chills below zero. I love this time of year. I can just open the upstairs outside door and do my exercises with the cold air keeping me from getting so hot. My family doesn’t appreciate it though. But this week the temperature got up to 50 degrees. I asked my parents if they would turn on the air conditioner. Good thing I couldn’t see the dirty look they gave me. Haha.

I thought I would model one of my new shirts for you all to see. Have a great week everyone.

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The 2014 holiday season was a great one – Adam Zwan

The 2014 holiday season was a great one; lots of food, laughter, and stories of the past. Starting in October and lasting until January celebrating holidays is the thought on everyone’s mind. Celebration events do not occur without some withdrawals, especially for a Wolfram patient.
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Merry Christmas Everyone! – Lauren Gibilisco

Photo of Lauren Gibilsco at ChristmasI dressed up in a Santa hat and wore a bell when I went to work. The bell jingling as I walked down the hall warned my fellow employees that I was coming. My bosses liked this because then they knew where to find me.

But this gave me an idea. I was going to have to be home by myself with my sisters dog Emmy for a few hours. I worried that I wouldn’t be able to know where she was. She is very nosy and likes to get into everything. She even unwrapped some of my sisters presents at home. We of course needed to get Emmy some toys for her first Christmas. While we were looking around I came up with the idea to get bells to put on Emmy so I would know where she was. My mom found a Santa collar with 3 bells on it that we could put on her. This worked great as I was able to hear where she was. Sometimes you have to be creative and come up with solutions to problems.

I had a very nice Christmas. On Christmas Eve it was just our family and that was nice because it was quiet so we could talk and hear each other. We opened our presents that night. I received 8 new tops, some for dress and some for casual. My mom and sister picked them out. It is the only way I can stay current with fashion. I rely on them to tell me if is really looks good on me or not. They did get me two long sleeve shirts but the material was very light and thin so even with my heat intolerance I shouldn’t have problems wearing them.

The next day on Christmas we went to Church and then up to Omaha to see my mom’s side of the family. My mom had to take me up to the table and tell me what desserts there were for me to try. She has to tell me because I can’t smell them and barely taste them. My tests from St. Louis reported I have no sense of smell anymore. Since it is Christmas time I am going to indulge myself with a few sweets. In order to do this I will need to ramp up my exercise routine and work off those extra sugars and calories. I am not familiar with my aunt’s house. I went to use the restroom and thought I was walking straight but instead ran into the door. Luckily I didn’t hit the door too hard. The only sad part of the party was that my grandparents were not able to come. They were both very sick from Influenza and they couldn’t come and we couldn’t visit them. But I was able to talk with them on the phone.

Of course I was keeping the true meaning of Christmas in my heart.

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We all have so much to be thankful for – Lauren Gibilisco

Wolfram syndrome patient, Lauren GibiliscoAs I mentioned previously, I had a test done for my oxygen levels over night. I am happy to say they are normal.

I was dreading the thought of having to use a cpap during the night. I did do as the doctor instructed and started taking Vitamin B. Although I still do sleep a lot at night, I am only taking one nap a day instead of 3. That is a big improvement and I think it means I am also sleeping better at night.

When I first went to go to the hospital to get the oxygen machine, the nurse was showing me how it worked. It didn’t take long and I told her I had a rare disease, Wolfram syndrome, that only one person in 500,000 develop. Then she said enthusiastically “oh, can I shake your hand? I have never met a rare person.” I told her she would probably never meet another one like me in which my mother replied “thank God.”

I had a wonderful Thanksgiving Day. Most of my family was able to come down to our house. It’s hard to get everyone together. My cousin had just returned from his second tour of Afghanistan. We all were very thankful to have him with us.

It was hard to hear though. Too many people in one room. Too much noise for someone with hearing aids. I really couldn’t hear the conversations so I just sat there just enjoying their presence. I also had real trouble tasting what I was eating. Sometimes I really did not know what I was chewing. I can’t see it and have trouble tasting it or smelling it so I rely on my memory of what that food tasted like. That is one thing I really missed. Getting up in the morning on Thanksgiving Day and smelling the turkey.

But as I said, the most important thing was being very thankful and having most of my family with me that day. My grandparents are getting old so I treasure every minute with him. I really enjoyed spending time with my cousins and aunts and of course, with my family. My sister brought along her puppy Emmy and I was very thankful for that. I really, really enjoy playing with her.

I hope you all had a very nice Thanksgiving. We all have so much to be thankful for.

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Health Glitches – Adam Zwan

What a person with Wolfram syndrome cannot eatThanksgiving 2014 was a fun filled day of food, family and laughter. The meal felt like a Golden Corral buffet without the Golden Corral. Thanksgiving used to be a favorite holiday of mine but due to Wolfram Syndrome it has become my least favorite. The family getting together and enjoying one another is a great event but the food is another story.
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Vision Loss and Wolfram Syndrome – Adam Zwan

Eye see you…no I don’t!

Photo of Adam ZwanOne of the many struggles a Wolfram Syndrome patient will experience, is vision loss. As a young man going through grade school, I noticed my vision quickly getting worse. In a classroom amongst individuals my age, I stood out from the crowd by always sitting in the front row, squinting to see the chalkboard, and having to get close and personal with any reading material. Before being diagnosed with Wolfram Syndrome, doctors were unable to properly treat and diagnosed my visual difficulty.
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Happy Birthday to Me! – Lauren Gibilisco

Lauren with birthday cakeIt’s been an exciting week for me. On Sunday my mom and I went to the grocery store. After we were checked out my mom remembered she needed one more thing. She gave the keys to the sacker and told her to take the groceries out and get Lauren into the car. She also told her where her car was and what color. The sacker led me around to the front seat of the car and I got in. When I was in the car I thought the door seemed a little different. I felt the door handle and thought it felt different. So I got out of the car and when I did two people who were friends of mine were walking past and stopped to say hi. I said to her what color is this car? She replied it was black. I asked her if it was a SUV and she said it was a station wagon. The sacker was just standing there waiting to put the groceries in the car. My friend said I think that one is your car. She checked the key with the lock and it was. And they call me the BLIND one.

I also was able to Skype with one of our new members from Italy. It was Frederica. My mom and I talked to her and her parents but they didn’t understand English. I was luckily able to hear her well. I have trouble hearing people with accents. But she spoke good English and we were able to share information with her. I am looking forward to scheduling another Skype visit with her soon.

My mom had to go out of town last week to care for my sister after her surgery. My mom does all my pills so I had her fill them up for the entire week in case she couldn’t get home. She was in a hurry but took the time to do it. The next day I felt my pill organizer. We have a locator dot or bump put on the side of the organizer that symbolizes my morning pills. I took my pills out for the morning and discovered that there were a lot of them. I started to count how many there were and realized they were the evening pills. So I felt the night pills and confirmed that they were the morning pills. Again I ask you “who’s blind here?”

Sunday was my 28th birthday. I ended up having more than 60 people wish me happy birthday. That made my day much more enjoyable that I received so many wishes from my friends. Every year on my birthday I celebrate that I have made it through another year of fighting Wolfram Syndrome. It’s another year that I am here and I cherish every minute.

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Chasing the Numbers – Adam Zwan

Adam Zwan struggles with his glucose levels.Wolfram syndrome makes it more difficult to treat and control all other more common illnesses. A Wolfram patient has to deal with diabetes, kidney failure, optic atrophy, and deafness but all these conditions are further complicated due to Wolfram syndrome. Currently, one of the most troubling tasks in my life is trying my best to control diabetes.
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Last week I visited my neurologist – Lauren Gibilisco

Photo of Lauren Gibilisco

Lauren Gibilisco


Last week I visited my neurologist. He asked how I have been feeling. I told him that I have been feeling fine but I am very tired. I sleep 12 hours at night and I take two hour naps a day. He said maybe my problem is that I am sleeping too much which can cause you to feel tired. I told him that I cannot stay awake.

He asked what I do during the day and suggested that I do more activities. I told him I do exercise a lot all through the day. He asked what type of exercises I do. He said it was important to get my heart rate up during exercise. I told him I can’t do that. Because of my heat intolerance I can only do short bursts of exercise throughout the day. He asked what else I do. I told him I watch movies but I get tired of watching the same thing over and over again. It does me no good to watch a new one because I can’t see what is happening.

I told him I like listening to music and dance around but again I can’t do it for long because I get hot. He told me to take a walk outside. But again I told him I can’t because I have to have someone to guide me along because of my ataxia. I can’t walk straight and get lost real easily. He said I needed more brain stimulation. He asked do you do braille? I told him I did learn but because of my neuropathy in my fingers from poking them for blood sugars for 26 years, it makes it very difficult. I read very very slowly and put myself asleep waiting for the next word. LOL. He suggested I walk on the treadmill slowly and for a longer time and try to work up my endurance. And lastly he suggested taking Vitamin B12 every day. With all my health problems I could easily be deficient. He also wanted me to test my oxygen saturation levels wearing a clip on my finger for 24 hours. I’m going to get that done tomorrow so I can tell you the test results next week.

At that point he scooted back and said “you are a challenging patient.” I told him “thank you very much.” He laughed and I said “I enjoy being different.”

This should tell everyone how different we WS people are. I can’t stay awake and Adam wrote in his blog last week that he can’t get to sleep. We should switch for a day then he could get some sleep and I could stay awake.

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Tired But Can’t Sleep – Adam Zwan

Image of sleeping manHave you ever experienced full body exhaustion but cannot fall asleep? Fellow Wolfram syndrome patients may know exactly what I am talking about. A snapshot of this sleepless exhaustion is lying in bed with a severe case of yawning while closing the eyes as tight as possible wishing for at least a few minutes of sleep.
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