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What It’s Been Like – Living With Wolfram Syndrome

Hello, Hola, Tung, Ciao, Bon Jour!

Photo of Lauren Gibilisco, Wolfram syndrome patient

In honor of the upcoming St. Patrick’s Day holiday. This was me from last year.

Recently I was contacted by someone who works with me. Her nephew’s girlfriend needed to write about someone with a disability. Of course she thought of me. Who better to pick from then someone with more than one disability?

I received a phone call from her and she introduced herself and told me what she needed for the report. I told her I had Wolfram syndrome. Her first questions were at what age I was diagnosed which I said was 12 when I was finally diagnosed with Wolfram syndrome but had diabetes mellitus at age 2, hearing loss age 5, vision loss and diabetes insipidus age 11.

She wanted to know if I had been treated differently by anyone because of my disease. I told her yes. In High School the teachers were great and made accommodations that I needed. I only had a few friends in high school. A lot of kids thought I was faking. They were nice to me but only a few went out of their way to help me. No one offered me rides home and to go shopping or to go to school activities. I was home alone a lot. You see my disabilities weren’t VISIBLE. They didn’t know how much was wrong with me because all the problems were inside of me. If I had lost a leg then people can see and will help you. They didn’t know all my problems with choking, ataxia, heat intolerance, seizures, fatigue, bladder issues, hearing loss, vision loss, etc. All of these problems at that time were invisible. Then in college I didn’t start using my cane until my last year. It wasn’t that I couldn’t see some but had become adept at counting doors, counting steps and feeling my way around. My Human Service Director thought I was even faking because I could do things so easily. I was able to have my text books downloaded and had computer software then read me the words. In spite of my disabilities I was able to have been ranked 8th in my high school and was a member of Phi Theta Kappa in college.

I told her about the lack of research when I was first diagnosed and now how much research is being done in St. Louis with Dr. Fumi and his team. When I was diagnosed there was very little written about Wolfram syndrome. My mom spent hours on the computer researching it and was able with another Wolfram parent to start the very first web page with a support group. It was how we were able to meet more people. I also told her that now I have several friends from all over the world. They are in England, Spain, Switzerland and Italy, Canada, Australia and of course the US. What is great is that I can actually see them and talk with them through Skype. It is fun talking to them although their accents sometimes make it difficult to hear. I also told her about the Snow Foundation and my blogs on their website so she could read them and get a better feel of who I am.

I told her of my desire to be a cop but I didn’t think they would give me a car or gun since I am blind.   When I was younger I had different dreams for myself but sometimes you have to change your dreams to fit life.

She asked me how I am doing now in my life. I said “As far as I see”, I am doing well. Haha.

Goodbye, Adios, Tung, Ciao, Au Revoir

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Are You Trigger Happy – by Adam Zwan

How to Avoid Trigger Foods

Trigger FoodsPortion 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.

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Living With Wolfram Syndrome – Lauren Gibilisco

Lauren to the Rescue

images-1I have been feeling pretty well. But the last few weeks my toes have hurt on one foot. I think it is from overdoing it on the exercise. I exercise whenever I’m bored so I exercise a lot. My mom told me to take it easy on the exercise until my foot stopped hurting. So now I have been a little more bored, if that is possible, because I’m not exercising as much. Oh well, that just means I get to talk more which drives my mom nuts. Ha-ha.

A couple of weeks ago we got a lot of snow here although not as much as the Boston area. We got 18 inches of snow with winds blowing 40 miles an hour and wind chills 20 below zero. That morning my dad was putting the snow blower into the back of the truck to take to the store and he slipped on ice and broke his arm. He just had surgery on Friday. They couldn’t do it any sooner because of the swelling. He broke his right arm so he can’t do much. I feel very bad for him and keep praying that it will heal soon.

I’ve had to help my dad button his shirt, put on his socks, open the pop up and open up containers with his pills in them. The only thing he is able to do with his arm is to write if possible. Other than that he cannot use it at all. It was a very bad break and they had to order a special plate and screws to fix it up. So the doctors were very clear to him that he could do NOTHING with it.

So thanks to him I’ve got a new job to do. I don’t mind it at all. It gives me something to do. It also gives me someone else to talk to. I feel very useful and I haven’t felt like this in a long time. I like feeling this way. It makes me feel good to help someone else.

There is one more thing my dad needs help doing, and that’s driving. Now I tell everyone that I am his new driver. Ha-ha. (Not too bad for someone living with wolfram syndrome.)

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Living With Wolfram Syndrome – Adam Zwan

flyinointmentFly in the Ointment

My uncle was the head baseball coach at Tulane University for a little more than 20 years and he, my aunt and I attended the Tulane alumni event in New Orleans, LA. When I was younger I used to be the equipment manager for the Rick Jones Tulane Baseball camp every summer for about 12 years. Thus, I got to know the players, coaches, and several alumni in previous years that also attended the 2015 Tulane alumni event. I had a fantastic time but simultaneously I felt like a man surrounded by worry.

Between glucose levels, food availability, catheterization, and Gastro Paresis there was always a question and or worry in the air. I was asked every hour how I was feeling and what my glucose is. Each day and night the meals occurred at the same time to the minute making sure I do not cause any problem because I strayed off from my routine. Like usual, restaurant choices and food offering were analyzed prior to dinning so that I did not run into issues with my digestive system. Each night my aunt was adamant about having peanut butter, orange juice and crackers on standby in case hypoglycemia occurred. Before attending the alumni baseball game my aunt pointed out that she was bringing her purse packed with peanut butter crackers, orange juice, protein bars, and bottled water; I made her fall out laughing when I said “let’s forget sitting in the stands and just tailgate in the parking lot.”

All in all, I had a wonderful time talking, laughing, and seeing faces I have not seen in many years. Even though I felt like a fly in the ointment and Mardi Gras was taking place, which made it a little tough to get around, I had the time of my life and would relive it just the same.

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Living With Wolfram Syndrome – Adam Zwan

Running Out of Senses

Image of 5 SensesWolfram Syndrome patients, like me, suffer from optic atrophy and deafness. It’s a belief that deaf and blind individuals rely on their other senses to experience life. A great example is Helen Keller because she had to depend on taste, smell, and touch to accomplish all of her lifetime endeavors. Unfortunately, vision and hearing are not the only senses that Wolfram patients struggle with.

In my case, I have lost most of my sense of taste and smell so those are two areas I cannot rely on to live a daily routine. As far as food and drinks go, it’s not really the taste that helps me distinguish what’s for dinner but the texture. When I cook a meal I use seasonings not to change the taste of my food but to create a crispy coating that satisfies my mouth with a crunchy texture. When it comes to drinks, I’m not able to acknowledge how sweet, salty, or spicy a beverage is but how silky, smooth, or grainy it feels on the tongue.

My sense of smell is even weaker than my sense of taste but I try to think of it as an advantage in some cases. Sometimes when I am preparing some food for myself there is an aroma that everyone except for me can sense. Whether I am burning my food to give it a crispy texture or I am gathering roses for Valentine’s Day my sense of smell makes no difference. On a lighter note, I am thankful I can’t smell after my father eats Mexican food and or a person smells like he or she works in a perfume factory. If I live past the life expectancy of 28-31 years-old there is a chance that Wolfram nerve damage will spread to my brain stem and result in paralysis, which would end my sense of touch. Again, it is unfortunate that I cannot rely on any of my senses except for touch but I make it through the day by reminding myself of every positive factor associated with Wolfram Syndrome, like not being able to smell rotten eggs on Easter.

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Living With Wolfram Syndrome – Lauren Gibilisco

Wolfram syndrome patient Lauren GibiliscoSometimes it’s doing the simple things in life that someone with Wolfram syndrome has trouble doing.

One morning last week my mom was going to work and she was going to drop me off at work. We were heading out the door when she remembered she didn’t put back on her wedding rings. She went into the office where she took them off last night. Well, they weren’t there. She then went into the kitchen to see if she had taken them off there. They weren’t there. Now she was starting to get frantic. She checked in the living room, the bathroom and the bedroom. They were not to be found. All this time I hear her rushing back and forth. So what could I do? Absolutely nothing. If I tried to help her look I would probably knock something off a counter and it would break and I would just cause her more problems. I felt so bad that I couldn’t help her. So I sat there and did the only thing that I could do. I started praying. I prayed to St. Anthony who is the patron saint of lost things. I asked for his help in helping my mom find her rings. She kept saying I know I took them off in the office. She sat in the office chair just feeling devastated. She looked around closely to everything in the room and finally said “I know where they are.” She then picked up a bottle of jewelry cleaner. Last night she put them in the solution to clean the rings. My mom was so happy now. I just whispered my thanks to St. Anthony.

I get really bored at home. My mom told me my sister was going out of town for several days and we get to keep Emmy, her dog. We were going to pick her up on Friday. That week I worked on Wednesday and Thursday. I was so excited to get her. Riding home my mom asked me if I wanted to hold her. I really wanted to but I was just so tired I had to sleep on the ride home. Then when we got home that night and I was still so tired that I had to go to bed right after supper. I still had Saturday and Sunday to enjoy her. Unfortunately they were no better. I was still tired and although I played with her some I couldn’t really enjoy her because of my fatigue. But there was one thing I could do that really helped out. Emmy is a very good dog and obeys commands except for when you say “come.” She thinks it’s a game and goes running around. Both my mom and dad have so much trouble catching her to put her in the kennel. I wish I could see what they look like but I can imagine from hearing them running around so out of breath. She will never let them catch her. So my mom yelled at me to sit down and call for Emmy. So I sat down and said “Emmy come here.” Emmy walked over to me and sat in my lap and I was able to pick her up so we could get her in the kennel. Emmy has always been that way for me. It’s like she knows I can’t see her so she makes it easy for me to get her. They always say dogs can sense things. So sometimes I guess it’s a blessing to be blind.

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Living With Wolfram Syndrome – Adam Zwan

All Gassed Up

wolfram syndrome and gas issuesNerve damage caused by Wolfram Syndrome results in many lifelong complications, some minor and others very severe. Eating and drinking has been one of the never ending issues I have struggled with. Regarding food and drink, issues experienced by Wolfram patients consist of glucose fluctuations, mood swings, low tolerance for specific food groups, as well as metabolic problems.

In the past few years, my metabolism has suffered from nerve damage making eating and drinking feel like a chore. My diagnosis is called Gastro Paresis and it is caused by pancreatic and metabolic nerve damage. After the pancreas has experienced nerve damage, the body runs into a deficiency of metoclopramide, which is a pancreatic enzyme that promotes proper contraction in the metabolism. The symptoms I have experienced are gas, bloating, nausea, acid reflux, heart burn, and indigestion. I have been prescribed a metoclopramide pill but unfortunately the symptoms still exist. The purpose of the medication is not to defeat my symptoms but to prevent my metabolism from falling asleep and resulting in a hospital visit due to constipation.

I experience gas, bloating, acid reflux, heart bun, and indigestion each time I have something to eat or drink so eating and drinking is more painful than pleasurable. I know that my circumstances could be better but they could always be worst. I just remind myself to count my blessing and be thankful that I can still chew and swallow because a feeding tube is the next stage.

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Living With Wolfram Syndrome – Lauren Gibilisco

Wolfram syndrome patient Lauren GibiliscoWith Wolfram syndrome, I continue to have problems with my vision.

Through 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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Living With Wolfram Syndrome – 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.

Beginning with Halloween and finishing with a New Years Day meal the eating is something that always brings my family together. With diabetes, gastro paresis, and low tolerance for fiber eating well takes on a whole new meaning. As a Wolfram patient, times of eating seem more like a chore than an enjoyable event. A Wolfram patient, like me, has to put a lot of time and effort into measuring, avoiding, and denying foods because eating the wrong thing could mean a visit to the hospital. Also, due to my increased sensitivity to insulin, gaining ten or so pounds results in glucose fluctuations. However, thinking about research efforts and searches for a cure help health struggles seem like just an event on the timeline.

Furthermore, my holiday season was filled with stories of life experiences that brought smiles, inspiration, and or jealousy. In my case, jealousy was a common feeling while family members spoke of vacations, relationships, and living independently. I’m 27 years old and listening to stories from family members makes me ask myself whether I have really lived yet. Reason being is that almost all of my stories pertain to health issues, hospital visits, and longing for changes in life. Happily, if research continues and success is achieved then I will be able to tell stories of my vacations, relationships, and independent living. All in all, the 2014 holiday season, minus a few health worries, was a memorable one.

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Living With Wolfram Syndrome – Adam Zwan

Wolfram syndrome patient Adam Zwan and family at Christmas time

The Zwan family celebrating Christmas with their festive holiday sweaters.

A Little Worried?

I feel lucky to have a family that loves me as much as they do, but like everything in life, there are some consequences. Before being diagnosed with diabetes and then Wolfram Syndrome, I could visit family members and make it an enjoyable event. I still enjoy seeing family, but my presence has changed from a pleasant visit to a worrisome task.

In previous years, I would pay visits to parts of the family and there would be lots of food, fun, and laughter. In the past few years I have felt guilty for creating so much fear and worry that I think twice before packing a bag to stay the weekend at someones house. The fear and worry that I speak of is due to my health and its complications, creating this mindset of “I hope nothing goes wrong while he’s here.”   My visiting experiences are filled with “Can Adam eat this?  Has Adam eaten enough?  Is Adam in pain?  Does Adam need to go home early?  Lord I hope nothing happens while Adam is here.” I have had one or two issues with glucose levels during the evening that no longer occur, but each time I stay somewhere, my family is adamant about using a baby monitor and/or sleeping on the sofa next to me just to make sure nothing occurs while I’m asleep.

I am very thankful to have a family love me as much as I do, but pleasant experiences have certainly changed due to Wolfram Syndrome. When I get the feeling that I am a fly in the ointment and not a pleasant visitor, I just grit my teeth and say that it could be worse and accept it and count my blessings. I try to stay optimistic by hoping and praying that something will change for the better in the near future.

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