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 […]
Maybe or Maybe Not Originally, 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 […]
Fly 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 […]
Running Out of Senses Wolfram Syndrome patients, like me, suffer from optic atrophy and deafness. It’s a belief that deaf and blind individuals rely on their other senses to experience life. A great example is Helen Keller because she had to depend on taste, smell, and touch to accomplish all of her lifetime endeavors. Unfortunately, […]
All Gassed Up Nerve damage caused by Wolfram Syndrome results in many lifelong complications, some minor and others very severe. Eating and drinking has been one of the never ending issues I have struggled with. Regarding food and drink, issues experienced by Wolfram patients consist of glucose fluctuations, mood swings, low tolerance for specific food […]
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 […]
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 […]
Health Glitches Thanksgiving 2014 was a fun filled day of food, family and laughter. The meal felt like a Golden Corral 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 […]
Chasing the Numbers Wolfram syndrome makes it more difficult to treat and control all other more common illnesses. A Wolfram patient has to deal with diabetes, kidney failure, optic atrophy, and deafness but all these conditions are further complicated due to Wolfram syndrome. Currently, one of the most troubling tasks in my life is trying […]
Tired But Can’t Sleep Have you ever experienced full body exhaustion but cannot fall asleep? Fellow Wolfram syndrome patients may know exactly what I am talking about. A snapshot of this sleepless exhaustion is lying in bed with a severe case of yawning while closing the eyes as tight as possible wishing for at least […]
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