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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 someone’s 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 ate 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 when using a baby monitor and or sleeping on the sofa next to me just to make sure nothing occurs while sleeping.

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 so 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 – Adam Zwan

In January 2013, Adam Zwan was featured by the NBC affiliate in his hometown of Wilmington, North Carolina, WCET News. The story was to show what it is like for Adam to live  with Wolfram syndrome. That night, Adam began to experience severe abdominal pain and was rushed to the hospital where he remained for a week. Despite the delay from Adam’s hospital stay, the news team came back to finish their story.  Here is the five minute video on our good friend, Adam Zwan, where you can see for yourself the courage and spirit Adam exudes every day.

http://youtu.be/ElJXKyf1gf4

 

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Living With Wolfram Syndrome – Adam Zwan

How to slow Wolfram Syndrome progression?

Steps toward a cure for diabetes and Wolfram Syndrome are being made and successful results are occurring in scientific research.  The treatments are not yet available for Wolfram patients so it’s wise to attempt slowing Wolfram progression until treatments are available.  In addition to being a Wolfram patient I am also a huge advocate for correcting one’s health on one’s own without the use of prescriptions.

From the age of 7 years old to 16 years old I was placed on nine different prescription drugs to treat my various ailments, ranging from diabetes to kidney failure to elevated cholesterol.  Upon my own research, I discovered that each prescription drug will eventually require an additional prescription for resulting side effects. I took it to heart and disciplined myself to edit lifestyle and correct health issues without the use of medications; today I am down to three prescriptions and doing very well.

Diabetics without Wolfram can experience nerve damage simply due to uncontrolled glucose levels.  Thus, a Wolfram patient, whose central nervous system is genetically experiencing nerve damage, along with uncontrolled diabetes will be faced with hurried progression of kidney failure, vision loss, and hearing damage.  Therefore, I have spent a great deal of my life in becoming physically active and nutritionally sound so that I may more closely take control of my diabetes, my health, and my life.  Through a daily exercise routine and a low sugar/carbohydrate diet I have successfully kept my blood glucose levels, cholesterol, blood pressure, kidney function, vision, and hearing at a stable and satisfactory quality.

In my visits to Washington University of St. Louis during the annual Wolfram research event doctors have told me that my lifestyle choices have proven to slow the progression of nerve damage caused by diabetes and Wolfram Syndrome.  In short, I was told to keep doing what I have been doing.

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Living With Wolfram Syndrome

Maybe or Maybe Not

image of a golf cartOriginally, I was told that Vocational Rehabilitation could provide financial assistance towards a street legal golf cart. When I first heard these words I was exhilarated to think that independent transportation is a possibility. I am still not full time at the wellness and rehabilitation center I work for so financial assistance is needed to acquire a street legal golf cart. It was explained that I must obtain a quote for a golf cart, add it to my file, Vocational Rehabilitation would purchase the golf cart, and then Vocational Rehabilitation would receive a tax rebate. It was all planned out and I was feeling optimistic that a Wolfram Patient, like me, could increase level of independence. Although, I try my best to be cautiously optimistic by saying that it may happen or it may not.

The next stop I was making was at the Vocational Rehabilitation office to add the golf cart quote to my existing file. While in the office a close review of the vehicle purchase policy took place and it was discovered that only 15% of the total vehicle value (down payment) could be offered. This information seemed logical but was and still is a slight stretch for me financially. Secondly, it was discovered that a street legal golf cart requires registration, tags, auto insurance, and a valid license. Obviously, the golf cart scenario has put on hold. It is times like these when I tell myself to “count my blessing, cope with the hand I was dealt, and keep pressing on.”

On a lighter note, my next eye appointment is on July 10th and it will provide me with details as to where my vision stands. I know that rapid aging and detonation of my central nervous system (Wolfram Syndrome) is a tough hand to me dealt in life but I do my best to stay optimistic and keep a realistic outlook in life. It’s one of my favorite clichés: “It may happen and it may not.”

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Living With Wolfram Syndrome – Adam Zwan

New Beginnings

a group of children in the sunset with a sign that says HOPE above them.Wolfram Syndrome is a rapid aging and deterioration of the central nervous system. The damages consist of diabetes, chronic kidney failure, deafness, and blindness; it’s not anything to be ashamed of, it’s just not something worth bragging about on the first date.

Throughout life I have experienced my fair share of health issues, some resulting in hospitalization, some ending with a seizure, and others finalized with constipation. I now look at all my past complications and can comfortably say it is water under the bridge because there is hope in the future for improved living. Things started improving when I first decided to move out on my own. Next is the golf cart I will acquire through vocational rehabilitation that will provide independent transportation to and from work. The next thing I hope will happen is a clinical trial for Wolfram syndrome. I understand that there are multiple hurdles before the trial starts. If trials are successful (first in the U.S. since 1938) then my mind will be put at ease from thinking that health struggles will continue getting worse. Thus, I will be forever grateful to The Snow Foundation and Dr. Urano for making such a life-altering path.Road sign that says the future is now.

All in all, I have proven to myself as well as people I come in contact with that patience is a virtue and perseverance can pay back in full. I will maintain hope and keep on being patient until the trial starts. It is amazing to imagine what the future may hold and that I may now start setting long term goals to be accomplished decades from now.

 

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Living With Wolfram Syndrome – Adam Zwan

Independence

wolfram syndrome independenceI recently moved out of my parents’ home to live on my own in an apartment all in an effort to gain some independence and self-sufficiency. It has been a start to the next chapter in my life with both pros and cons. It feels good to depend on myself to fulfill everyday tasks but it will take some time for my family to relax and feel confident that I can fend for myself.

The whole scenario was made possible after acquiring the Dexcom continuous glucose monitoring system with Share. This device accurately monitors my glucose levels and through Bluetooth communicates with five chosen followers who can also see what my glucose levels are. For the first time in my life other people can see part of what my body is experiencing. As some may have guessed, when my glucose level is below 150 mg/dL all my following family members believe that my glucose is plummeting and I need assistance. The drama has settled somewhat and they now see that an assistant is not needed to feed me orange juice and peanut butter but I am fully capable of serving myself.

Next in line is the cell phone chaos. When my glucose falls a little bit I receive phone calls from three or four of my followers, regardless of the time of day. If I do not have my phone by my side, I am in the shower, using the restroom, or in the gym and someone is trying to call me but I am unable to talk it is all perceived that I am in trouble. Thus, a family member is dispatched to my apartment or 911 is called and then canceled when I become available. I know I should just be thankful that I have a family who cares for me as much as I do but it make everyday living a bit difficult. Although, the yo-yo effect my glucose readings go through is mostly my fault. It seems the harder I try to control my glucose levels the harder it becomes. The exercise I participate in six times a week, my Gastro Paresis, and my limited diet all play a part in my frequent glucose fluctuations.

Everyone has a story and everyone has something he or she struggles with, my struggle in life is health (Wolfram Syndrome). I remind myself everyday that challenges in life are a given but coping and pushing forward are choices. My prayers rest with the Snow Foundation to fund research and Dr. Urano in finding a treatment for Wolfram Syndrome.

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Living With Wolfram Syndrome – Adam Zwan

Worst So Far – My Hypoglycemic Seizure

Moving out on my own in April 2015 is a chance for me to increase my confidence and begin experiencing more of life’s treasures. On the other hand, there are some health risks and family worries due to my taking a chance on my own. I tell myself to be thankful to have such a close-knit family that loves and cares as much as they do.

Diabetes is the cause of most worries and I make the best of it by saying “that’s just the hand I was dealt in life.” On April 2nd this year I moved into my new one bedroom apartment where everything I will need is in walking distance. In order to relieve my father having to take me to the gym every morning as early as 5 a.m. I moved into an apartment located only one mile down the street from the gym. Along with the gym there is a Wal-Mart, doctor offices, and restaurants just beyond the parking lot. Obviously my mission was accomplished moving within walking distance of necessities. However, a health glitch occurred due to my slight change in routine upon the move in day.

Image of hypoglycemic seizureMy everyday routine, regarding exercise and nutrition, was altered resulting in a hypoglycemic seizure. My glucose dropped as I was home alone and the orange juice I drank did not do the trick. I ended up getting exhausted and after taking a shower I decided to lie down for 20 minutes. Two hours later I woke up to a room filled with family members and EMT. I was lying in bed in a puddle of sweat with an IV in my arm. I was told that I survived one of the worst seizures I have ever had and that due to the seizure I got dehydrated.

Further, the seizure was explained in detail informing me that this was the first time my heart rate plummeted and I lost consciousness. I was given a glucagon shot that caused my liver to release glycogen and increase my glucose level. An ambulance ride was offered and I declined because all was fine after gaining my bearings. Knowing what happened and why made the whole occurrence a learning experience. I now know how important it is for me to follow routine and stay regimented.

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Living With Wolfram Syndrome – Adam Zwan

PHD: Pray, Hope, & Don’t Worry

Wolfram syndrome moving vanMy whole life has revolved around health status and trying to control the progression of Wolfram syndrome. Even though the harder I try, the more difficult it seems to get. I decided to take a big chance and try living on my own. It has been made clear to me that everyone around me worries regardless of the circumstances. Thus, worrying will continue the rest of my life so I must make a change and do something for myself.

Wolfram syndrome is just a diagnosis of lifetime worrying: diabetes, kidney failure, deafness, blindness, and paralysis; it’s like a never-ending story. The worrying began for me at age seven and only became worse as of today: food, glucose levels, seizures, kidney/bladder infections, gastro paresis, sanitary conditions for catheterization as well as visual and hearing difficulties. I made a pact with myself to stop worrying about making others worry and try to broaden my horizon by enjoying life. It all starts with the first decision I have made, on my own behalf, of moving out and getting a place of my own. Sure living on my own will be difficult at first, but life as a whole is difficult and coping is something I have done since the beginning.

In the end, I will be able to boost my confidence by saying, “living on my own is a possibility and I am proving it.” Increasing awareness and funding research at Washington University in St. Louis is a fantastic venue but today I must rely on myself to slow progression as much as I can through fitness and nutrition while I experience the now. However, if living on my own does not work out I give everyone permission to say “I told you so.”

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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 – 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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