affected
Guru status reached
- Joined
- Apr 26, 2013
- Messages
- 16,096
- Reason
- Lost a loved one
- Diagnosis
- 05/2013
- Country
- OZ
- State
- AU
- City
- lala land
My husband Chris was an incredibly active man who had the attitude of “come on let’s do it!” His attitude to what is important in life struck me early after meeting him, and his desire to jump in and experience everything we could soon swept me along.
For most of his working life Chris ran cafes or restaurants, and was well known in the community both for his food, amazing milk shakes and ability to make anyone who came in feel valued, welcome, and leave with a smile on their face.
We had this weird set of circumstances that led us along in ways that felt like something was smiling over us and guiding us to amazing places. We just went with the flow, and I will be forever grateful that we did, as we both thought we knew one never knows when their time is up, but we still never thought it would be up so soon.
Our dream property ‘bought us’ and it became ours on May 7, 2010.
He proposed to me on 10-10-10 and planted my favourite tree – a Moreton Bay Fig – as my “engagement ring” with a beautiful plaque he had designed to be placed under it. It was pouring rain but he insisted we go out and plant it as the plaque said it had been planted that day and we laughed as we sloshed about out there doing it.
We were married on the property on May 7, 2011. We were in bliss, we were making gardens and beautiful things like maniacs and we laughed constantly and he talked non-stop about anything and everything.
In June 2012 he began to have truly noticeable bulbar symptoms (though we know there were some beginnings of the monsters presence from years earlier, in hindsight), and by August 2012 he was becoming very scared, but I was in high denial that it was anything more than something really odd that the right doctor would pinpoint and all would be well. He had never been seriously ill a day in his life, had never had blood drawn, never been admitted to a hospital, and he knew that he had very unusual symptoms that were slowly getting worse and he had never known his body to fail him at all.
After a long process of being sent to the wrong kinds of specialists, who at least performed all the usual tests that show normal with MND, he was becoming depressed, his speech and swallowing were bad, his hands were failing, and could no longer work and I knew in my heart that we needed to be referred to neurology. A friend suggested we see a speech pathologist and so on April 17, 2013 we did that and within 5 minutes she solemnly said she cannot diagnose as she is not a doctor, but that she believed strongly that he was afflicted with bulbar onset MND.
I will never forget that day even if life became a true blur for the next couple of months. She got us booked in to see a top neurologist at an MND clinic on May 23, and the diagnosis was confirmed.
Chris felt he had to ‘fight’ the disease, but sadly with the involvement also of FTD, he could never put a clear strategy together, and was even less able to follow any strategy through, he became paranoid, lost his empathy, easily angered, and morose.
My heart was slowly cut to shreds as I watched this monster eat away both the body and the person my husband had been. I tried simply to honour his decisions, even if he changed his mind frequently on many matters.
He progressed rapidly, and on April 22, at the age of 55, just 1 year and 5 days after seeing the speech pathologist and not even a full year after official diagnosis, he was granted his wings to fly free, and cast the monster over a cliff.
I cannot believe that I was given so little time with him, however I am forever grateful I allowed myself to just take his hand and run with him, as I have so many wonderful memories of the short time we did have.
Fly free and high, soaring wherever you will my love.
Katrina (Tillie)
For most of his working life Chris ran cafes or restaurants, and was well known in the community both for his food, amazing milk shakes and ability to make anyone who came in feel valued, welcome, and leave with a smile on their face.
We had this weird set of circumstances that led us along in ways that felt like something was smiling over us and guiding us to amazing places. We just went with the flow, and I will be forever grateful that we did, as we both thought we knew one never knows when their time is up, but we still never thought it would be up so soon.
Our dream property ‘bought us’ and it became ours on May 7, 2010.
He proposed to me on 10-10-10 and planted my favourite tree – a Moreton Bay Fig – as my “engagement ring” with a beautiful plaque he had designed to be placed under it. It was pouring rain but he insisted we go out and plant it as the plaque said it had been planted that day and we laughed as we sloshed about out there doing it.
We were married on the property on May 7, 2011. We were in bliss, we were making gardens and beautiful things like maniacs and we laughed constantly and he talked non-stop about anything and everything.
In June 2012 he began to have truly noticeable bulbar symptoms (though we know there were some beginnings of the monsters presence from years earlier, in hindsight), and by August 2012 he was becoming very scared, but I was in high denial that it was anything more than something really odd that the right doctor would pinpoint and all would be well. He had never been seriously ill a day in his life, had never had blood drawn, never been admitted to a hospital, and he knew that he had very unusual symptoms that were slowly getting worse and he had never known his body to fail him at all.
After a long process of being sent to the wrong kinds of specialists, who at least performed all the usual tests that show normal with MND, he was becoming depressed, his speech and swallowing were bad, his hands were failing, and could no longer work and I knew in my heart that we needed to be referred to neurology. A friend suggested we see a speech pathologist and so on April 17, 2013 we did that and within 5 minutes she solemnly said she cannot diagnose as she is not a doctor, but that she believed strongly that he was afflicted with bulbar onset MND.
I will never forget that day even if life became a true blur for the next couple of months. She got us booked in to see a top neurologist at an MND clinic on May 23, and the diagnosis was confirmed.
Chris felt he had to ‘fight’ the disease, but sadly with the involvement also of FTD, he could never put a clear strategy together, and was even less able to follow any strategy through, he became paranoid, lost his empathy, easily angered, and morose.
My heart was slowly cut to shreds as I watched this monster eat away both the body and the person my husband had been. I tried simply to honour his decisions, even if he changed his mind frequently on many matters.
He progressed rapidly, and on April 22, at the age of 55, just 1 year and 5 days after seeing the speech pathologist and not even a full year after official diagnosis, he was granted his wings to fly free, and cast the monster over a cliff.
I cannot believe that I was given so little time with him, however I am forever grateful I allowed myself to just take his hand and run with him, as I have so many wonderful memories of the short time we did have.
Fly free and high, soaring wherever you will my love.
Katrina (Tillie)