E-Mail Conversations with Alison Bevon – CBD Survivor South Australia
Mon 14 February 2011 – Valentine’s Day: 7h30 am
I found your drawing of a brain in your last blog and your scrap of paper with your possible diagnosis quite recognisable. Its a problem that I wish the medical profession would acknowledge and that when a person has a terminal illness diagnosed we are given as much information as can possibly be given. As I wrote before I was given a
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Mon 14 February 2011 – 9h04 am
If you are wondering what was happening with my last email, I pressed the send button instead of the save to drafts button. Sometimes as you know we get jerky fingers and mine jerked at the wrong time.
What I was trying to say was I understand the stress of getting the news of your condition via a sketch or just given a name like CBGD. If I could do anything Ed, it would be that anyone diagnosed with a terminal illness could be given as much information as possible and given support as soon as possible without that terrible wait where you are on your own with that awful news.
Because like me you were possibly trying to explain it to your family by just having the information you gained from the internet. As I wrote before my neurologist gave me a computer printout containing medical terms that I couldn’t understand and we had to go home and look them up on the internet so we could thoroughly understand what was happening to me.
I was interested to hear about your medication. Isn’t it strange how everyone reacts differently to the medication we are getting. I found that the Baclofen has really helped with my muscle spams, but if I remember correctly it took me a couple of weeks to get used to it and for it to start to work properly.
I have gone to your web page and its looking very good. I feel that it will help a lot of people, and anything that gives people an insight into the various brain malfunctions is a wonderful idea.
My palliative care physiologist came for a visit today and she listened to your radio programme where you mentioned me and she was very pleased that I helped you and that you were helping me with dealing with this disease. She said to say hello to you and said she was very glad again that she had read your Heathrow article.
All for now Ed,
Wishing you well