Tag Archive for: diabetes

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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

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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Rare Disease Day and Francis Collins Raise Awareness For The Snow Foundation

Last week, in honor of Rare Disease Day, the Snow Foundation was interviewed by the St. Louis ABC affiliate, KDNL ABC 30.

The story focused on Stephanie Gebel and her fight for a cure for Wolfram syndrome and to revolutionize the diabetic world. Here is the story featured on the Jamie Allman Show.

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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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We Can Be Like The Big Foundations

Photo of Snow cousins

(Left to Right): My nephew Shane Snow, my son Jack and my nephew Jake Peters

Since my nephew’s diagnosis of Neuromyelitis Optica (NMO) I was curious if there were any foundations representing NMO, after all, this is a rare disease just like Wolfram syndrome.

My sister sent me a link to a foundation called Guthy-Jackson Foundation. When I read about this foundation, I was a little envious of what they had accomplished in six years. They have started clinical trials, have a beautiful website, patient days and even a book written by the mother and daughter who has NMO. My initial reaction was relief for my nephew; there was network out there and in LA of all places where he lives. On the other hand, I was envious. Guthy, yes the famous Guthy-Renker infomercial founder and Jackson, the Victoria Jackson makeup line and infomercial guru are the parents of the child who was diagnosed with this disease. This power couple has an open checkbook to make what needed to happen, happen. People have to understand that in order to discover a drug to stop the progression of a disease and to find a cure, science and research has to take place and that takes millions and millions of dollars. What upsets this “mom on a mission” is that these patients are suffering and dying because of a lack of funding. My goal for 2015 is to find the right donors that can help us get this job done.  It will happen, mark my words…IT WILL HAPPEN.

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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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Prayers For My Nephew Jake

Diabetes and NMO haven't gotten Jake Peters down.I am writing this from an airplane on my way home from Southern California after visiting my nephew, Jake, who has been lying motionless in a hospital bed for the last 16 days.

Jake is an unbelievable 17-year old, great baseball player, as well as a type 1 diabetic. He has had diabetes since he was 20 months old. He could not breath the afternoon of December 15th and told his dad he was loosing sensation in his feet. He later collapsed and has been on a ventilator and unable to move his arms and legs since. He was diagnosed with an autoimmune disease called Neuromyelitis Optica (NMO).  NMO is a rare relapsing autoimmune disorder that causes inflammation in the optic nerve and spinal cord.

I went out to California to support my sister and to love on my nephew. Everyone thinks they have problems, I am the first to admit, especially watching my daughter struggle with her Wolfram syndrome. However, when you sit in a hospital room all day and watch your 17-year old nephew lie there limp, unable to move anything, we should all be thankful for the problems we have because someone else always has it worse.

It broke my heart because three of his best friends and teammates came over to see him after baseball practice and they all asked him how he was doing. He mouthed, “I can’t move.”  He should be the one in that uniform worrying about baseball, what he is going to do on Friday night, homework, etc., not wondering if he is ever going to walk again, use his arms or breath on his own. But for now, all we can do is wait, hope and pray.

A Caring Bridge page has been set up for Jake Peters where you can follow along with his story and progress.  We welcome any prayers, thoughts and get well wishes for Jake.  Thank you!

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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

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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