Conversations Down Under (2)

E-Mail Conversations with Alison Bevon – CBD Survivor South Australia 

4 February 2011

Dear Ed,
Sorry to hear about your wiring problems on your blog.  You explained that so well. 
I admire you so much for  being able to communicate so well.   Its very confronting to see your medical problems in print but what you do is so helpful to people like me, suffering this horrible problem and also for the general public, who really don’t understand what CBGD is.  My husband thought your blog was very helpful and we both had a laugh at the end of your article. 
I, too have had an awful week.  We have had so much humidity here this week, and I suffer horribly in the humidity.   I feel like I have a muscle and brain meltdown.  Nothing works together.  I have to have the air conditioner on all the time to make me feel a little better. 
I hope my last email wasn’t too confronting for you and your readers.  I tend to forget that some people have different views regarding end of life issues and I would hate to think that I caused you or your family any distress.   My husband took awhile to accept my decisions, but he has accepted them now and I know he will not go against my wishes and even he was the one who suggested that I donate my brain for medical research after death.  So we researched that together and made all the arrangements and I feel so much better knowing that I have done something to help other people with this disease and also because my Mother died from the same symptoms as I have now. 
She  was diagnosed with Miniers disease when she was in her fifties and had regular bouts of dizziness and nausea.   It wasn’t until she was 75 that they realized she was having seizures and it wasn’t Miniers disease,  by then she was also diagnosed with dementia and a few weeks before her death, her right arm was wandering up and down, she couldn’t talk, walk or swallow.  So, I believe she had the same symptoms as I have but she wasn’t diagnosed properly.  She didn’t have an autopsy.  I wish she had, it would have answered a lot of questions.
 So that is why I had my DNA taken, so the family can keep track if any more of us come down with similar symptoms.   They did find an variant of uncertain significance in the PGRN gene. They were only checking for frontotemporal dementia and it should become clearer in the next few years whether this is related.  Although you don’t seem  to  have  dementia because you write and speak so well.  Do you any have cognitive problems?  I hope you are one of the lucky ones to escape that part of this disease. 
I wish you well Ed, and I hope the doctors have helped you with your medication.  Look after yourself and try not to get too hot or too tired. 
Thinking of you


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