09-08-2014, 05:51 PM
111
Re: What I've been up to
I know what you are saying Celyn and I do understand. At the moment Keith wants to fight this thing and we do get a lot of support. Further down the line I am sure that I will get my head around the fact that although research is going on it will never be enough. Keith really fears that when he is losing ability to communicate he will have put things in order and will have got some way to make his wishes known when it comes to his comfort and daily needs.Celyn Is your husband still able to communicate with you?
09-08-2014, 07:24 PM
112
Re: What I've been up to
Michael fights non stop Cate. This disease brings out the fighting spirit in thee person who has the disease. So many permutations of this disease. Keith may not lose the ability to communicate. Michael's voice is only now starting to go after 8 years. He has Dragon talk on his laptop which he controls with his mouth.Like you we explored every avenue in the beginning. It's a process I think we all need to go through. Michael wanted to go on research programmes but you had to have had the disease for less than 18 months to be accepted. Michael had had it probably two years when diagnosed by Professor Leigh at Kings College Hospital. We did travel up to London for a couple of years before it became to much. Getting into London was horrendous by road.
As I may have said to you previously at first I could not accept the diagnosis , as I was convinced we would be told they had made a mistake. Originally it was thought that it was a progression of a problem Michael had hand 30 years previously. For this very reason I didn't talk about it very much at first , to anyone, as I am sure in my head I thought if I don't mention it would go away and not be true.
I grew up with a father who had MS. His brother and first cousin had MS too. It seemed too incredible that my own husband would now have something that could be classed as similar or worse.
When Michael first developed symptoms my father was dying. I was sometimes travelling from Winchester to S.Wales every other day. Just after he was diagnosed my mother passed away. It was a lot for us to adapt to and take in. Overload comes to mind.
I am going on a bit better get on with the evening chores. When I can p.m. I think we can chat a lot more as I am sure we can help each other as we both understand the complexities of the illness.
09-08-2014, 08:38 PM
114
Re: What I've been up to
I am looking forward to the day that we can PM, I will then give you my email address and we can speak privately.Keith has just been speaking to a lady from the MND she was talking about Dragon and some other pieces of technology that will all together become a package for people with not only MND but MS Parkinson's and so on.
Meanwhile I will beg Mags, or Azz to give us special treatment and allow us to Private Messaging. If you will do that Mags or Azz I will be your best friend for ever. Promise.
11-08-2014, 12:24 PM
115
Re: What I've been up to
"Just a bit of an update re my husband Keith who has Motor Neurone Disease. We went to the Royal Preston Hospital on Wednesday to see the doctor who had first put him on a ventilator. The doctor was really pleased with Keith's numbers saying that if he didn't know that he had MND he wouldn't be able to tell from the oxygen and carbon monoxide stats in his blood"That's good to hear Cate, thanks for letting us know, and may I say full credit to yourself for always keeping the good side out, God bless both of you, you are always in my prayers.
11-08-2014, 01:53 PM
116
Re: What I've been up to
I am always glad that the day arrived when I joined the OFF the messages and kind words that I receive from you all is unbelievably comforting. Family and friends are there but 'we don't always put into words' what we are feeling. Here I can be what I need to be and know that I will receive support. Considering you are all complete strangers to me it makes it even better. Thank you all so much. Azz has allowed Celyn and me to PM so we will keep our conversations more private but I will always be back to let you know how things are going with me and Keith's life.
11-08-2014, 02:29 PM
118
Re: What I've been up to
Originally Posted by Cookiecate
->
I am always glad that the day arrived when I joined the OFF the messages and kind words that I receive from you all is unbelievably comforting. Family and friends are there but 'we don't always put into words' what we are feeling. Here I can be what I need to be and know that I will receive support. Considering you are all complete strangers to me it makes it even better. Thank you all so much. Azz has allowed Celyn and me to PM so we will keep our conversations more private but I will always be back to let you know how things are going with me and Keith's life.
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