Imagine travelling in China for four years and never hearing any English. Then one day, someone arrives and converses with you in English. What excitement!
Well, that’s how I feel – I am so excited – because this week I have found someone who understands what I am experiencing:
For the first time since I was diagnosed with CBD just short of four years ago, I have had direct correspondence with someone else who also has the illness. Her name is Alison Bevon from South Australia and, with her permission, I am publishing her email to me:
Thank you for replying to me. I do feel like I have known you for a few months now. I have been reading your blogs regularly and I have attempted to listen to your radio programme, but because I live in South Australia and we do not have a very good wireless broadband system where we live its hard to keep it from dropping out, but your blogs have been an inspiration to me. I feel like I have come to know when your feeling down, and its hard to keep your spirits up. Maybe sometimes you feel like me and think you can defeat this illness and its not going to end up being the disaster we know is coming. That’s why your article waiting at Heathrow or Deathrow, meant so much to me. I have been trying for ages to try and put into words how I am actually feeling but finding words isn’t easy for me now. So now I have shown my family your posting and it all makes it easier for them to understand . As much as you can understand without actually being in our position.
As for me, I am 59 years old, married ( for 41 years) female diagnosed in February 2010, after I had what we thought was a slight stroke, and I lost control of my right arm. I could move it but it really wasn’t responding to me and I was very unsteady on my feet and my speech had slurred. I had a previous one a few months before but that had resolved itself but I had begun to lose parts of my ability to calculate problems, couldn’t follow a recipe and I was forgetting to for example hang out the washing which I had forgotten I had done. My G.P. decided I had depression and was testing me for that, even though I was adamant I wasn’t depressed. I was also being treated for a stomach problem where the nerves around it weren’t working properly and couldn’t compress. Now that had been put down to my condition.
I was sent to a neurologist and had an MRI which showed diminished frontal temporal lobes and a few white spots which shouldn’t have been there, as well as Multi System Atrophy. Then he came up with CBGD, which I had never heard of, but he gave me a medical computer printout of the condition and said he was very sorry but that now I was on my own journey and that it was terminal, but I thought that was ridiculous, I would prove him wrong but as the year has gone on and my symptoms have increased, I have accepted it and let my wonderful support team be there for me.
My support team consists of Disability services, which will supply any equipment I may need at home and a wonderful palliative care team ( which consists of doctors, nurses, and a physiologist) who all cater to my needs as they come up. ( All for free, because we have a great medicare system here ) . I have been to a Rehabilitation Centre where they taught me how do my exercises to keep my poor aching muscles stronger and strength training for my fingers which were becoming quite useless. I also have a speech pathologist who will help me when I lose my ability to swallow correctly and I go to hydrotherapy once a week. So as you can see I am being well catered for and I have my made an Advanced Medical Directive for my future treatment in writing so that my family doesn’t have to make any discussions for me which I know will cause them distress, because I dont want to have any medical intervention. No CPR, or peg feeding, or any thing that will prolong my life.
I have had my DNA taken and I have donated my brain to the brain foundation. So as you can see Ed, I am well prepared. I feel like now my bags are packed, my affairs are taken care of and I’m in that waiting room. So now I am just waiting, waiting for the next symptom to arrive or for the next phase of my life. Whatever that may be.
I have joined the CBGD Carers Support Organisation in America on the internet and I find that very informative. I have posted a couple of times, but I feel like it then becomes about me, and carers have different feelings and concerns than I have and Robin who runs the forums always comes up with very informative information which I love to read.
As for my symptoms now, I have trouble walking. I have a wheelchair when we go out. I couldn’t manage a walker because I have cognitive problems and I cant manage to coordinate everything. I cant hand write anymore. I was right handed but now I try to scribble with my left hand, and my right hand seems to wander a lot. I have had trouble with night-terrors, waking up five times a night screaming, but my palliative care doctor prescribed Rivotril drops ( I dont know what there called in South Africa ) because she said I was having small seizures and the drops have helped me alot. I take Baclofen for muscle spasms, Moltilium for my stomach problems and it helps stop the nausea, when I get dizzy, and Pariet medication for Barretts disease. As well as PanadolOsteo for my general aches and pains. My right eye gets very jerky at times, and I have trouble conversing with people face to face or on the phone, however, I can still type and I can still get my thoughts to paper. Which is not bad for a person with a form of dementia.
I forgot to tell you about my wonderful husband, John, who is now my carer. He has gone from a person who couldn’t boil water to someone who now has to cook, clean, push me around in my wheelchair, wipes my tears, taken over all the household duties without complaint. I don’t know how he does it. He also had a triple by-pass three years ago so he also has that medication and problems to deal with as well. I have an adopted daughter who is 25 years old now. She doesn’t live at home any more she only moved out a few months ago. She tries to deal with my problem as best as she can, but its hard to deal with. Another wonderful family, the family of a friend of hers, has taken her under their wing, and I am very happy that they include her in all their family, grandparents, uncles, aunties, cousins, so I wont have her to worry about her, when I cant be there for her anymore.
Apart from all that Ed, and you said to write, give it to you all so I hope your coping alright with all my writing. There’s a lot more information I can give you but you probably need a rest from reading and I definitely need one from writing, but today I’m in a very happy place. I feel like I have found a friend in you, because I knew no-one with this disease before I started reading your wonderful blogs I love your stories and I love your pictures. So I really feel like I know you well. Thank you for taking the time out, of what seems like a very busy schedule, to write to me.
P.S. My palliative care psychologist, took a copy of your wonderful Heathrow article, after I showed it to her to let her know how I was feeling. She said it was truly inspirational and would help her understand what many of her patients are going through.