Conversations Down Under (4)

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

27 February 2011

Dear Ed,
I just had to show you these two darling koalas my sister found in her backyard tree.  They were gone the next day  but it reminds us how lucky we are to have such beautiful wildlife in our area. 
 Thank you for remembering that I had contacted you a few   months ago. ( I had actually forgotten, which isn’t unusual  for me these days ) and I would like to thank you for putting  the ALS video on your blog site.  There are so  many  neurological diseases and for each one that is  highlighted it is a reminder that we are not alone, isolated  yes, but not alone.  Thank goodness for the internet,  because it allows us an insight into the many problems  each of our families and ourselves have to endure.
I’m glad you mentioned the Baclofen medication and the problems it caused you, I found I could not take Levodopa  (which is sometimes recommended for us) I only took one and I was awake for 40 hours straight.  Definitely not good for someone who needs their sleep.  So it goes to show that we are all individuals, and one medication is not suitable for us all.
As for me,  I had a terrible week last week.  I had, what I would call an episode, during which I lost most of my motor functions again.  I couldn’t keep my eyes open, hold a spoon, find my mouth or walk more than a couple of steps and my speech was slurred and I thought this is it, the beginning of the end, but a couple of days later I started to get my motor functions back and while I am still a bit wobbly and my speech is not the best I am getting back to where I was before.   I feel now I am beginning to understand my body and what is happening, although I would like to know how fast this disease progresses.
I’m glad you are looking at a wheelchair.  It certainly is a mental thing to get used to having to have one, but it has helped me immensely and if you learn to use it now, while you still have a lot of your cognitive abilities, then its easier to manoeuvre when you need it, ( and its definitely not as easy as it looks ).  I left it a bit to late to learn how to use mine,  I get confused and its easier to just let my husband push me.
Thank you for sending me the links to your radio programmes,  my physiologist listened to them and she was very impressed, especially with how much its able to help me.  We were able to get your radio programme last week, the wireless connection actually worked.  Its on at 7 p.m. here.  Its wonderful to think we are so far away from you but we are able to listen in real time and Lance is wonderful to allow time on his programme to help bring awareness to this horrible disease.
And as for you Ed, keep up your wonderful work.  I can imagine how hard it would be at times, but your a wonderful inspiration to us all.
All for now. 

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