Tag Archive for: living with wolfram syndrome

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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 – Lauren Gibilisco

It’s been 10 years since I graduated from High School. We had our 10th year reunion this last weekend. I had to find someone who could help lead me around. I love my mom but going to a reunion with your mom is just not cool, so I asked my friend Meredith to take me.

The first festivity was a float in a parade. The class reunions are always during our town’s celebration weekend. As much as I wanted to sit on the float with my classmates, I knew it would be impossible. The weather was 85 degrees which is way too hot for me to be outside long and then there was the problem of needing a restroom. We had to line up on our float an hour before the parade and then the parade was an hour long. I can’t go that long without needing the restroom. It really disappointed me but I’ve learned there are things I just can’t partake in.

The next festivity was out at a cabin.   I talked with my mom and decided it would just be too hard for me to walk across an uneven surface, be outside in the heat, and again needing the restroom. So we decided to just skip that also. Then my friend Meredith said she was only going to stay out there for an hour and would help guide me around. I was very excited about that. I really did want to go but didn’t want to be a burden to anyone. But Meredith insisted that I wouldn’t be a burden and she would be glad to take me there. I was really happy I went. I got to see a lot of my classmates. Well I couldn’t SEE them but I was able to talk with them and say hello. Meredith took me around and let me know who was there so I could say hello to everyone.

Then that evening there was a dinner banquet. Meredith again took me there and helped me to the table. Unfortunately not many of my classmates came. So I was really glad I was able to go to the cabin because I saw many more classmates then I would have been able to see at the banquet.

After the banquet everyone was heading to the bar to celebrate. There was a live band playing and it was less than ½ block to my house. Unfortunately by this time I was getting very tired. That darn fatigue was getting in the way of my continuing the celebration. I told everyone that I would be the designated driver to drive them home but no one took me up on that one. I wonder why? But overall it was a great experience and I’m glad I went and I’m glad that my friend Meredith took the time to help me enjoy the celebration. I am very grateful to her.

Image of Lauren Gibilisco's class reunion.

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Living With Wolfram Syndrome – Lauren Gibilisco

For once I can say that I have had a busy couple of weeks. It was really nice.  My sister took a vacation to Cancun. We got to dog sit Emmy, my sister’s dog, for a whole week. I have written about her before so I know you know her. It was fun to have extra company and someone to play with. But there were some problems.

Wolfram syndrome patient Lauren GibiliscoEmmy needed to be taken out to go to the bathroom. I couldn’t do that. First of all, I couldn’t see to put her leash on and hook her up to the stake. I also couldn’t see if she went to the bathroom. I am also not allowed to go outside by myself because I can so easily lose my direction and have trouble finding the house again. That was the rule put down after I got lost outside my house for an hour and 15 minutes in a tee shirt and shorts when it was 28 degrees. So my mom had to come home every couple of hours to let Emmy outside.

Emmy was very distracted while outside. My mom said she was a city dog in the country. My mom would tell her to go potty and she would start to but… oh a bird, I hear an owl, there are kids playing, leaves are blowing, etc. It did not take much to distract her. It would sometimes take a half hour to get her to settle down and go potty.

The other problem I had with Emmy is that she is very energetic. She liked to play a lot. I get tired in the afternoons and need to rest. But Emmy would bark at me to play. She wouldn’t let me sleep until I played with her. Luckily I didn’t have to play a long time. Overall, the rest of the time she was Emmy, my favorite dog and great company for me.

Here is the great news. I found another volunteer job. I am going to work at our local museum helping to catalog, fold clothes and put away special papers to preserve them. It is really fun. I work with this lady called Deb. She likes to talk as much as I do so my nonstop talking doesn’t bother her. It is very interesting the things we are preserving. A lot of the items I have never heard about or know how they were used, so it is fun learning about history while working. We have been folding linens this week. Although I can’t see them, Deb describes them to me and I feel the textures of the fabric. It is amazing to wonder how those people back then could create such intricate work.

I work at the museum on Tuesday, Thursday and Friday afternoons for about 4 hours. Then I am still working Wednesday morning at the telephone company. This will really help keep me occupied and I won’t be stuck at home being bored. Although I am not getting paid, it is so great to be out around people again and having someone else to talk to than just my mom. There is only one problem. My mom thought that when I got this job I would be talking to other people and so I would not have to talk to her so much. Oh she was so wrong. I come home and have stories to tell and conversations to repeat. So although I am not bored anymore, my mom unfortunately is still stuck with me talking non-stop.

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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 – Lauren Gibilisco

When I was 13 I saw a low vision specialist. He was trying different devices on me to get my vision a little better. Then he told me “you will never ever drive.” Well that about told me what my future was going to be like.

Me and my wonderful Mom.

Me and my wonderful Mom.

But I was going to prove the doctor wrong. My mom took me to a very large, empty parking lot. There I was able to satisfy my need for speed. I would go very fast and then slam on the brakes so the car would spin around. Then my mom would take me out into the country and I would drive fast on the gravel roads. One day she said “Lauren look out for that ditch,” and I said, “What ditch?” I was heading straight for it. My mom said that was enough. No more driving on the country roads or parking lots. My dad asked my mom if I would be a good driver if I could see. My mom said “No. The way she likes to drive fast she would get a whole lot of speeding tickets.” After our driving attempts I think that was when my mom started coloring her hair. Riding with me turned her hair gray.

This week on TV I saw something that may change my life. They are coming closer to having cars that drive themselves. I knew there were already cars out there that could parallel park. Could you imagine me trying to park between two cars? Well now they actually have cars that drive themselves. You just tell it where to go and it will drive you right there. They say it will be a lot safer driving than some of the people on the roads today. This would solve my problems. Right now I am reliant on my mom to drive me everywhere. She takes me shopping, out to eat or go to our many doctor appointments. Now I would be able to just jump in the car and say “take me there.” How cool would that be?

So technology has come a long way. They have come up with things that can really help people like me. They have talking watches, talking alarm clocks, talking scales, talking meters and many more. So there are great possibilities out there in technology that will make our life easier.

The only downfall I can see right now to getting a car that drives itself, is that I would probably visit the ice cream store a whole lot more.

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Living With Wolfram Syndrome – Lauren Gibilisco

blood sugars scaleThe Blood Sugars Balance

By: Lauren Gibilisco

I had a few weeks where my blood sugars were unstable. If I ate something that would make me go high, I was still low. This happened for about 2 weeks. Now the bad thing about the timing of low blood sugars is that I’d probably be able to have a lot of ice-cream since it usually makes me go high. But I gave it up for Lent and couldn’t indulge. L Since then the blood sugars have been erratic. I could eat the same thing at the same time and do the same thing and my blood sugars were very different from day to day. Now unfortunately this was a problem because I was going to have another Botox injection into my bladder. I couldn’t eat or drink anything after midnight. So not knowing how my blood sugars would be, I ate a carb full supper. I ate pizza and did not give any Humalog and cut my Lantus down by 5 units. We had to drive into Omaha for the surgery which is 2 hours away. We were afraid that I would be low and get lower on the drive. So cutting down on the insulin would really help keep me from going low. After all this my blood sugar was only 199 which aren’t great but considering everything I did it was something we were comfortable with. By the end of the time I was in the hospital, which was about 10 hours, my blood sugars were 128. Thank goodness my blood sugars cooperated that day.

Now when I was in the hospital they asked me if I wore a pump. I told them “no” because I can’t see it and they said they didn’t think about that. Right now I am totally independent in taking care of my diabetes. I use pens to dispense the insulin and I have a talking meter. Now I know the pump would be very beneficial to me but it would make me dependent on someone again. I’m not quite sure how they work but I think someone would have to dispense the insulin in. I know it also beeps to let you know if you are going high or low. That is something else I would have a problem with. Right now one of my hearing aids seems not to be working well. I also believe my hearing has decreased again. I am having a very hard time hearing. When you are blind you rely on your hearing. But with me being hard of hearing I can’t rely on my sight. So unfortunately it makes it very difficult to use the pump and remain independent. They have talking meters; hopefully someday they will have talking pumps. But they would need to have the volume be very loud. Now mom WHAT did you say????? Sometimes it is very convenient to not being able to hear your mom.

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What It’s Been Like – Living With Wolfram Syndrome

Hello, Hola, Tung, Ciao, Bon Jour!

Photo of Lauren Gibilisco, Wolfram syndrome patient

In honor of the upcoming St. Patrick’s Day holiday. This was me from last year.

Recently I was contacted by someone who works with me. Her nephew’s girlfriend needed to write about someone with a disability. Of course she thought of me. Who better to pick from then someone with more than one disability?

I received a phone call from her and she introduced herself and told me what she needed for the report. I told her I had Wolfram syndrome. Her first questions were at what age I was diagnosed which I said was 12 when I was finally diagnosed with Wolfram syndrome but had diabetes mellitus at age 2, hearing loss age 5, vision loss and diabetes insipidus age 11.

She wanted to know if I had been treated differently by anyone because of my disease. I told her yes. In High School the teachers were great and made accommodations that I needed. I only had a few friends in high school. A lot of kids thought I was faking. They were nice to me but only a few went out of their way to help me. No one offered me rides home and to go shopping or to go to school activities. I was home alone a lot. You see my disabilities weren’t VISIBLE. They didn’t know how much was wrong with me because all the problems were inside of me. If I had lost a leg then people can see and will help you. They didn’t know all my problems with choking, ataxia, heat intolerance, seizures, fatigue, bladder issues, hearing loss, vision loss, etc. All of these problems at that time were invisible. Then in college I didn’t start using my cane until my last year. It wasn’t that I couldn’t see some but had become adept at counting doors, counting steps and feeling my way around. My Human Service Director thought I was even faking because I could do things so easily. I was able to have my text books downloaded and had computer software then read me the words. In spite of my disabilities I was able to have been ranked 8th in my high school and was a member of Phi Theta Kappa in college.

I told her about the lack of research when I was first diagnosed and now how much research is being done in St. Louis with Dr. Fumi and his team. When I was diagnosed there was very little written about Wolfram syndrome. My mom spent hours on the computer researching it and was able with another Wolfram parent to start the very first web page with a support group. It was how we were able to meet more people. I also told her that now I have several friends from all over the world. They are in England, Spain, Switzerland and Italy, Canada, Australia and of course the US. What is great is that I can actually see them and talk with them through Skype. It is fun talking to them although their accents sometimes make it difficult to hear. I also told her about the Snow Foundation and my blogs on their website so she could read them and get a better feel of who I am.

I told her of my desire to be a cop but I didn’t think they would give me a car or gun since I am blind.   When I was younger I had different dreams for myself but sometimes you have to change your dreams to fit life.

She asked me how I am doing now in my life. I said “As far as I see”, I am doing well. Haha.

Goodbye, Adios, Tung, Ciao, Au Revoir

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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 – Lauren Gibilisco

Lauren to the Rescue

images-1I have been feeling pretty well. But the last few weeks my toes have hurt on one foot. I think it is from overdoing it on the exercise. I exercise whenever I’m bored so I exercise a lot. My mom told me to take it easy on the exercise until my foot stopped hurting. So now I have been a little more bored, if that is possible, because I’m not exercising as much. Oh well, that just means I get to talk more which drives my mom nuts. Ha-ha.

A couple of weeks ago we got a lot of snow here although not as much as the Boston area. We got 18 inches of snow with winds blowing 40 miles an hour and wind chills 20 below zero. That morning my dad was putting the snow blower into the back of the truck to take to the store and he slipped on ice and broke his arm. He just had surgery on Friday. They couldn’t do it any sooner because of the swelling. He broke his right arm so he can’t do much. I feel very bad for him and keep praying that it will heal soon.

I’ve had to help my dad button his shirt, put on his socks, open the pop up and open up containers with his pills in them. The only thing he is able to do with his arm is to write if possible. Other than that he cannot use it at all. It was a very bad break and they had to order a special plate and screws to fix it up. So the doctors were very clear to him that he could do NOTHING with it.

So thanks to him I’ve got a new job to do. I don’t mind it at all. It gives me something to do. It also gives me someone else to talk to. I feel very useful and I haven’t felt like this in a long time. I like feeling this way. It makes me feel good to help someone else.

There is one more thing my dad needs help doing, and that’s driving. Now I tell everyone that I am his new driver. Ha-ha. (Not too bad for someone living with wolfram syndrome.)

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