Tag Archive for: living with wolfram syndrome

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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 – 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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Living With Wolfram Syndrome – Lauren Gibilisco

Photo of Lauren Gibilsco at ChristmasMerry Christmas Everyone!

I 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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Living With Wolfram Syndrome – 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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Living With Wolfram Syndrome – 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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Living With Wolfram Syndrome – Adam Zwan

Tired But Can’t Sleep

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. 

It has been suggested that I participate in a sleep study so that some solutions to restless nights of sleep can be developed.  However, part of my problem is not only the sleep patterns but the health issues I struggle with.  Due to Wolfram syndrome, I have to wake up each night to catheterize relieving discomfort, wake up every two hours to check my glucose, and try to relax a cold body that sometimes deals with shivering.  As always, it is not simply solved with one thing like sleep medication but bigger helping hands like an accurate continuous glucose monitor (CGM).  Something like a Dexcom CGM would relieve my body from having to wake up every two hours and relieve my alarm clock from mandatory overtime.  The only thing allowing me to continue daily routines is a 20 minute power nap every day.  It may be possible to obtain a Dexcom sensor in the future but until that day arrives I will continue going to bed each night eagerly awaiting the 5:00 A.M. alarm signaling that it is gym time.

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Living With Wolfram Syndrome – Adam Zwan

Counting My Blessings

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. 

The rapid aging and deterioration of my central nervous system has resulted in many health complications that usually occur later in life.  These health complications I am troubled with are prevalent in the lives of almost all Wolfram patients beginning at birth.  In my own lifetime, I have experienced Diabetes, chronic kidney failure, decreased vision, decreased hearing, loss of taste, loss of smell, and a weakened immune system making me more vulnerable to the everyday free radicals.  My aging central nervous system is probably why I can relate so well to elderly individuals; conversations always contain “yes sir, been there, done that”, and “yes, I have that problem too.” 

Wolfram may cut my life short but it just reminds me to be thankful for what I do have and count my blessings.  Not being bed ridden, still having brain activity and still being able to use my legs and arms makes me realize that Wolfram syndrome may be a tough bullet to chew but things could always be worse.  So long as the Wolfram research and the Snow Foundation are doing well, I choose to keep fighting and hoping for new developments. 

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Move Forward and Keep Fighting the Fight

Barclay and I are moving forward! As parents you want to do everything possible to provide the best life for your children.
Raquel TV

Easier said than done when one of them has a life threatening disease.  If you pray hard enough for the strength to just move forward, somehow, the good Lord will provide!

This past weekend Barclay took Raquel to Best Buy and bought her a TV for her bedroom.  He mounted it on the wall next to her bed and with it’s swinging arm,  she can move it right in front of her face.  It has been at least nine months since she has watched TV.  After her dad installed it, her eyes light up and she was so excited to sit and enjoy the TV like everyone else.  She just wants to be like everyone else.

This week I  had a meeting at school with about 12 other individuals from Raquel’s school to discuss her progress. It was a bit overwhelming to walk into a conference room and see all these people sitting around a huge conference table to discuss the needs of you child.  I am very grateful that Raquel attends such a great school district and I am even more grateful that Barclay and I are accepting the fact that Raquel has special needs.  Her needs keep us fighting; fighting for change, and fighting for a CURE!

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