Statistics are only numbers but for me they are motivation to stay physically active and nutritionally sound.
After 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.
Wolfram statistics are also motivation for me to live every moment to the fullest. I do not want to regret not taking chances or missing once in a lifetime experiences because numbers show that dying next year is a possibility. Each day I am faced with hearing difficulties, visual difficulties, spontaneous kidney infections, and glucose fluctuations due to metabolic problems. All the while, I’m facing each moment head strong and beating back all problems with Greek yogurt and dumbbells.
http://thesnowfoundation.org/wp-content/uploads/2019/06/snow-foundation_logo.svg00Adam Zwanhttp://thesnowfoundation.org/wp-content/uploads/2019/06/snow-foundation_logo.svgAdam Zwan2014-09-30 22:48:072020-09-07 20:10:36Experience Life and Enjoy the Now! – Adam Zwan
I’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.
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.
We 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!
It 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.
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.
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.
http://thesnowfoundation.org/wp-content/uploads/2019/06/snow-foundation_logo.svg00The Snow Foundationhttp://thesnowfoundation.org/wp-content/uploads/2019/06/snow-foundation_logo.svgThe Snow Foundation2014-07-27 23:15:042020-09-07 20:10:38Long Time No See
The 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.
Everyone 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
I had a wonderful week spending time with my family at Sherman Reservoir in Nebraska.
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.
Here I am explaining what Wolfram syndrome is and how I handle living with the disease everyday.
The American Diabetes Association (ADA) held its annual convention in San Francisco this year at the Moscone Center. Having never been to California, I was thrilled when asked to attend and help work the booth for the Jack & J.T. Snow Foundation. I was told that the purpose of the booth was to increase awareness and funding for Wolfram research; I had no idea the Snow Foundation and I were going to be so successful.
The first day the exhibit hall was open a gentleman named Jose worked the booth while everyone else attended a game at the AT&T Park (Giants vs. Rockies). If ever in San Francisco the AT&T Park is a must see. I felt like a VIP while watching the baseball game from a corner suit overlooking the baseball park as well as the bay where just as much action was occurring. I could view home runs and passing yachts at the same time. During the game I was taken and introduced to the private AT&T country club. I was informed that members had to be season ticket holders and pay annual fees to enjoy their own bar, dining room, movie theatre, and bowling alley. Feeling like a spy, I walked through the AT&T country club like I owned the place.
Food in San Francisco is worth fighting for. The meals I had pleasure enjoying were some of the best things I have ever eaten; steak, seafood, poultry, and various veggies all cooked to perfection. Regardless of preference, vegan, carnivore, or vegetarian, there was something available for any and all taste buds.
Lodging at Hotel Fusion was not a disappointment at all. The hotel was just four blocks away from the Moscone Center so I enjoyed walking for the next two days to work the Wolfram booth. While in San Francisco experiencing the scenic route and walking around is not a bad idea. While walking the streets of San Francisco I was surrounded by diversity; various accents, nationalities, languages, and cultures. The diverse population makes San Francisco seem like a multicultural union. Whether European, Asian, Latin, or Middle Eastern each population category has its own selection of department stores, restaurants, and information centers.
The Jack and J.T. Snow Foundation had an amazing booth and did what it came to do; spread the word about Wolfram and reach out to interested donors. While working the booth I met amazing physicians, researcher, and domestic attendees. I was successful in teaching people what Wolfram is and how to join the research clinic at Washington University. On the other side, other exhibitors were successful in teaching me about new technologies and resources for diabetic patients. For example, there is a new insulin therapy that will hit the market in the near future; an insulin patch that can deliver insulin by absorption daily and or weekly.
One evening was spent at the Hamlin Mansion on Broadway Street. This event was all set for Wolfram research donations and increasing awareness. The attendance for this event was remarkable and would please any Wolfram patient in seeing that so many people are interested in Wolfram and supporting research efforts. The evening was a success in raising money from auction items and generous offerings. Everyone enjoyed great food while listening to a live musician and watching a bar tending competition. Near the end of the event Wolfram was explained by Stephanie Snow Gebel’s video, a speech by Dr. Urano, and myself, which brought both tears and laughter. All in all, if I had the trip to San Francisco to relive I would not change one thing.
00Adam Zwanhttp://thesnowfoundation.org/wp-content/uploads/2019/06/snow-foundation_logo.svgAdam Zwan2014-06-30 16:28:322020-09-07 20:10:39My First ADA Convention – San Francisco
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.
http://thesnowfoundation.org/wp-content/uploads/2019/06/snow-foundation_logo.svg00The Snow Foundationhttp://thesnowfoundation.org/wp-content/uploads/2019/06/snow-foundation_logo.svgThe Snow Foundation2014-06-08 12:00:432020-09-07 20:10:39I Have The Best Sister In The World – By Lauren Gibilisco
After 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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