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!

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.

Living With Wolfram Syndrome – Lauren Gibilisco

Photo of Lauren Gibilsco at ChristmasMerry Christmas Everyone!

I dressed up in a Santa hat and wore a bell when I went to work. The bell jingling as I walked down the hall warned my fellow employees that I was coming. My bosses liked this because then they knew where to find me.

But this gave me an idea. I was going to have to be home by myself with my sisters dog Emmy for a few hours. I worried that I wouldn’t be able to know where she was. She is very nosy and likes to get into everything. She even unwrapped some of my sisters presents at home. We of course needed to get Emmy some toys for her first Christmas. While we were looking around I came up with the idea to get bells to put on Emmy so I would know where she was. My mom found a Santa collar with 3 bells on it that we could put on her. This worked great as I was able to hear where she was. Sometimes you have to be creative and come up with solutions to problems.

I had a very nice Christmas. On Christmas Eve it was just our family and that was nice because it was quiet so we could talk and hear each other. We opened our presents that night. I received 8 new tops, some for dress and some for casual. My mom and sister picked them out. It is the only way I can stay current with fashion. I rely on them to tell me if is really looks good on me or not. They did get me two long sleeve shirts but the material was very light and thin so even with my heat intolerance I shouldn’t have problems wearing them.

The next day on Christmas we went to Church and then up to Omaha to see my mom’s side of the family. My mom had to take me up to the table and tell me what desserts there were for me to try. She has to tell me because I can’t smell them and barely taste them. My tests from St. Louis reported I have no sense of smell anymore. Since it is Christmas time I am going to indulge myself with a few sweets. In order to do this I will need to ramp up my exercise routine and work off those extra sugars and calories. I am not familiar with my aunt’s house. I went to use the restroom and thought I was walking straight but instead ran into the door. Luckily I didn’t hit the door too hard. The only sad part of the party was that my grandparents were not able to come. They were both very sick from Influenza and they couldn’t come and we couldn’t visit them. But I was able to talk with them on the phone.

Of course I was keeping the true meaning of Christmas in my heart.

National Diabetes Month

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.

Living With Wolfram Syndrome – Adam Zwan

Health Glitches

Thanksgiving 2014 was a fun filled day of food, family and laughter. The meal felt like a Golden CorralWhat a person with Wolfram syndrome cannot eat buffet without the Golden Corral. Thanksgiving used to be a favorite holiday of mine but due to Wolfram Syndrome it has become my least favorite. The family getting together and enjoying one another is a great event but the food is another story.

Before Wolframs and its complications took a toll, I could enjoy splurging a little and try each dish that was served. However, this year was low carbohydrate and low sugar for diabetes as well as low fat and low fiber for gastroparesis. When the feast was prepared and served buffet style, family members piled up plates of turkey, ham, pork tenderloin, casseroles, dressings, and stuffing. Finally it was my turn to say turkey breast please and……ok, turkey again please. The feast ended with cakes, pies, and puddings. I went against my morals and had a sugar free cheesecake cupcake. The smiling, laughing, moaning, and groaning made the holiday even more memorable. Two hours later did not occur as pleasant for me.

Later in the day, while family members were sprawled out in the den, my stomach decided to empty its contents and spike my sugar. With the little bit of food I ate my metabolism slowed down and held on to everything I consumed. Gastroparesis is a fancy term for delayed stomach emptying, so after my insulin did it’s, work my stomach empties without any insulin to combat the contents. This glucose spike lasted through the night and was finished by Black Friday. On a lighter note, anytime glitches in health occur, I just read successful research blog entries by Dr. Urano to give myself hope for the future.