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.
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
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
When looking at the past 12 months I have noticed all the patient waiting I have taken part in. It seems that the time of waiting is the hardest part of anything. Whether it is waiting on a medical cure, an employment decision, or an everyday event, waiting to see how things turn out is the greatest challenge.
In my days, I am forced to wait and see what I can accomplish due to available transportation. Each day involves waiting for a ride or waiting to see if anyone is available to give me a ride to complete tasks and or chores, like work, the gym, grocery store etc. The waiting for transportation also involves waiting to receive phone call that transportation is not available or has been canceled.
In addition, I have been applying for full time job opportunities everywhere from Charlotte, NC to Portland, OR and the hard truth of waiting is no different. The process of searching followed by the detailed effort of applying is all finished with a long term of waiting on email messages and phone calls. After questions are answered and an interview takes place comes the unbearable wait to hear of the final decision. It is all the nature of the business but telling myself that does not make things easier.
Similarly, waiting for a successful cure for Wolfram Syndrome presents the same restless wait. It is said that a cure, which stops the progression of Wolfram Syndrome, is the first step. The next step is taking action to repair damages that have occurred due to the breakdown of my central nervous system. While waiting to see how the possible cure turns out, I cannot help but dream of living without diabetes and kidney failure. Also, the possibility of a cure creates optimistic thoughts of obtaining 20/20 vision and being able to drive again. These thoughts and dreams only make the time of waiting seem like forever. All in all, the patient waiting continues until conclusions are discovered.
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 Foundation2014-06-02 17:20:512014-06-02 17:20:51Just Waiting Around – By Adam Zwan
Do you live a risky life or do you fly straight and narrow? After being diagnosed with Wolfram Syndrome I began paying close attention to my surroundings and the lives of others. Strangely, it became clear that individuals who live life without taking chances or making risky decisions end up with the dull side of the blade. Unfortunately for people who avoid trouble and mischief, consequences are paid with permanent life changes. On the other hand, those who live on the edge seem to have a little more fun in their lifetime; these individuals may be faced with consequences but the price is paid and the risky lifestyle is continued.
For instance, when someone bends the rules a little bit or even breaks a law, like drinking and driving, he or she gets caught, pays some fees, and is able to repeat the same mistake again. After paying the consequences a risky person will look back and say “it was fun and maybe I’ll try it again.”
For someone like me with Wolfram Syndrome risks may involve eating a certain food or exercising later in the evening. Thus, these small risks end in the emergency room with doctors telling me “it is a wait and see process and we cannot give you pain medication because it will make things worse.” I have never broken any laws or made my parents worry that I might cause trouble but I have experienced hardships, sacrifices, and limitations throughout my whole life. Whether it is a sibling, a friend, or someone you read about, it appears that lifetime consequences are faced by individuals who least deserve them.
When my mind is filled with thoughts of jealousy I just go to the gym sweat until my mind is clear, exercise until it hurts, and make sure I don’t have enough energy to think when I walk out the door. People tell me all the time that I am a good guy and do not deserve all the issues I am faced with. The only thing I can do is reply that life is not always fair and those who can rise to the challenge and beat the odds can make a wonderful difference in the community.
As a Wolfram Syndrome patient, I have learned that controlling my diabetes and my overall health can slow down the progression of any illness. Thus, I have become a huge advocate for fitness and nutrition as a means of promoting quality years of life. Health is a broad term that encompasses physical, mental, psychological, intellectual, and spiritual health.
When I was first asked to help teach taekwondo classes I was eager to help as well as improve aspects of my own physical health. As a trade off, I would assist in teaching classes and then be taught the art of taekwondo to help improve my balance, flexibility, and technique. After a few weeks of assistance I was shown that lessons of taekwondo can be used to teach various aspects of health. Members of the academy ranged from 2 to 16 years old and learned not only taekwondo but how to make a difference at home, in school, and in the community.
It is important to know how to defend one’s self and how to avoid danger but equally valuable to show respect, discipline, and self control. Behavioral attributes are woven into each lesson of taekwondo and prove to create amazing men and women for the future. The fast food industry targets children so that eating habits are developed early in life; the same philosophy is used in teaching taekwondo but in contrast, the members I engage learn proper manners, how to be respectful, and how to interact with others using a positive demeanor.
After several months of training and teaching taekwondo I see improvements within myself as well as the members who I have engaged. While I experience better balance and flexibility the members are bringing n progress reports with better grades, notes from parents explaining good deeds performed at home and in the community, and showing respect and discipline towards instructors and peers. Taekwondo has proven to be a valuable lesson in life that teaches not only self defense but behavioral attributes that mold bright futures for the next generation.
All great things are worth waiting for. Being patient has proven to be one of my greatest attributes and has served me well throughout life. No matter the task, managing time wisely and being patient has given me the ability to start things, do them well, and finish with satisfaction.
While in grade school, I would start assignments, projects, and other school work as soon as the task was given. Early in life, I discovered that procrastination always led to an overwhelming and rushed ending. My to-do list would get cluttered with assignments and I would have to rush to get things done on time. By 3rd grade I changed my tactics and began breaking things down and completing them little by little so that by the deadline I would only have to make the final touches. Working piece by piece I could patiently complete any task on time and in a manner that met all demands.
The next chapter in life involved college and driving. College went very well because I tackled the studying, work, and assignments the same way I did in grade school, with patience and good time management. Patience also helped me regarding college graduation. Instead of rushing to graduate and be done with school, I patiently completed course after course and made sure that each school semester ended with grades that I could be proud of. Fortunately, I was able to graduate with a grade point average that took my resume to new heights. In the same era, driving was a privilege that I valued and understood that by beginning a journey ahead of schedule I could patiently make my way to a destination and avoid rushed road rage. I always felt that if I was early, I was on time, and if I was on time, I was late.
Currently, I am patiently awaiting a successful cure for Wolfram Syndrome. The last I heard, drugs and stem cell research were showing successful results using mice and pigs; in approximately two years medical trials will begin on human patients. Patience will serve me well in this instance because if researchers are patient in discovering a cure, testing the cure, and proving that it works then the path of patiently waiting will end with a great outcome. By holding on and letting things take place as they should, I will be able to sustain the health I still have and look forward to successful repairs of damaged nerves.
All in all, patience has served me well in life and taught me that impatience can lead to unsatisfactory finish lines. Life’s lesson: all great things are worth waiting for!
Having confidence in one’s self is as important in life as breathing. Without an adequate amount of confidence a person suffers throughout life dealing with mental health. Having a lack of confidence may make it difficult to finish tasks, create new goals, initiate relationships, and can make a person feel severely depressed. One must be satisfied with one’s self before he or she can enjoy life.
As a Wolfram patient, I have struggled to increase and maintain self-confidence most of my life. Psychology claims that a child’s confidence is first developed in middle school (5th-8th grade). When I was a middle school student I was overweight, payed too much attention to what other students would say or do to me, and did not have an outgoing personality that initiated relationships. The next stepping stone took place in high school. I started eating right, becoming more physically active, and worked on my personality, which all helped me to boost my confidence. While helping out the baseball team and socializing more with peer students, I was feeling better about myself and my surroundings.
My level of confidence was decent while in high school and college but after graduating with a bachelor’s degree a few things changed. Transferring through three different colleges before graduating made it tough to develop a network of friends and contacts. Wolfram Syndrome began taking a toll and sending me to the emergency room for various reasons. With worsening vision, I lost the luxury of driving and independent travel. After numerous twists and turns, my confidence was again shattered.
Fortunately, I am too strong to just break down and quit. I continue to exercise everyday to clear my head of any negativity and jumpstart each day relaxed and refreshed. If I begin a task I make sure that I finish it and finish it well to emphasize the feelings of accomplishment. The next step in becoming satisfied with myself is to live in an area with a system of public transportation so that I may live and travel independently. Like most things in life, having a high level of confidence and perseverance will lead to great outcomes.
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.
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