Living With Wolfram Syndrome – Lauren Gibilisco

Last week I visited my neurologist.  He asked how I have been feeling.  I told him that I have been feeling fine but I am very tired.  I sleep 12 hours at night and I take two hour naps a day.  He said maybe my problem is that I am sleeping too much which can cause you to feel tired.  I told him that I cannot stay awake.

He asked what I do during the day and suggested that I do more activities.  I told him I do exercise a lot all through the day.  He asked what type of exercises I do.  He said it was important to get my heart rate up during exercise.  I told him I can’t do that.  Because of my heat intolerance I can only do short bursts of exercise throughout the day.  He asked what else I do.  I told him I watch movies but I get tired of watching the same thing over and over again.  It does me no good to watch a new one because I can’t see what is happening. 

I told him I like listening to music and dance around but again I can’t do it for long because I get hot.  He told me to take a walk outside.  But again I told him I can’t because I have to have someone to guide me along because of my ataxia. I can’t walk straight and get lost real easily. He said I needed more brain stimulation.  He asked do you do braille?  I told him I did learn but because of my neuropathy in my fingers from poking them for blood sugars for 26 years, it makes it very difficult.  I read very very slowly and put myself asleep waiting for the next word.  LOL.  He suggested I walk on the treadmill slowly and for a longer time and try to work up my endurance.  And lastly he suggested taking Vitamin B12 every day. With all my health problems I could easily be deficient. He also wanted me to test my oxygen saturation levels wearing a clip on my finger for 24 hours.  I’m going to get that done tomorrow so I can tell you the test results next week. 

At that point he scooted back and said “you are a challenging patient.”  I told him “thank you very much.”  He laughed and I said “I enjoy being different.”

This should tell everyone how different we WS people are.  I can’t stay awake and Adam wrote in his blog last week that he can’t get to sleep. We should switch for a day then he could get some sleep and I could stay awake.