A bit of background

My name is Katrina Jeffery.

I cared for my husband Chris through the combination of MND/ALS and FTD. Chris was diagnosed in May 2013 with bulbar onset MND/ALS. At the time I knew so little about this disease I did not realise that he was a classic presentation and yet it took us six months to get to diagnosis due to a total lack of understanding of the disease in our medical community.

It began with me realising that my perfect man was changing and I thought he was mildly depressed. Chris was most adamant he was not, and yet I noticed a change in both his personality and mood creeping along. I admit, I didn't think too much about it as our lives were very full and busy and he would state there was absolutely nothing wrong. This began during early 2012.

By mid 2012 he began to experience sporadic slurring of speech and trouble swallowing water. It caused a lot of joking in the cafe he owned, but he found that he would break into hysterical laughter he could not control. Even staff began to quietly tell me they thought he was becoming very strange.

Within a few months he was slurring all the time and needed to be very careful with swallowing and I insisted we seek medical attention. We had not made any connection with the fact that he had also developed twitching (fasciculations) in first one, then both upper arms. We had noticed them, and had a laugh at them (they were extraordinary), but did not think much about them.

After six months of doctors, not only was his speech becoming seriously impaired, he had sold his cafe and was having a lot of trouble with fine motor skills in his hands and could barely pick up a pillow.

Finally a speech pathologist saw through to the issue within minutes and we were sent to a specialist neurologist who uttered the words that changed our lives forever.

The behavioural changes rapidly progressed and the man I loved was quickly gone, wasted away just as his body was wasting away in front of my eyes. Eleven months after diagnosis the monster took him from me - 22 April 2014.

When I was caring for Chris I would have said that once he died I would be running as hard as I could and hope never to hear of MND/ALS ever again. I surprised myself as I found great comfort in giving support to carers and people with the disease. I had received incredible support from other present and past carers online, and I began to realise that it had become my turn. I had not only survived, but I had overcome facing the worst loss to the cruellest monster.

I live on the Far North Coast of NSW, Australia on an idyllic 14-acre property where I am regenerating native habitat for the koala.

I have written a book about my own experience as a carer to offer support not only to carers, but to help family and friends understand what the day-to-day struggles of this disease encompass, especially when FTD is involved. It is available online in both hard copy and ebook!

However this web site is being packed with free information to lend practical support that I can update and add to. It is a legacy to my husband Chris, who lost everything to this disease. Until there is a cure, there has to be support. Online support groups are the most practical way to get support if you are a carer.

I noticed as I researched and looked for practical help as a carer for Chris that there just weren't any real 'down to earth' resources out there. There were lots of sites returned for searches, but I got tired of reading the same thing over and over - you need to look after yourself, you need to have help. No real meat about how to look after myself, and of course I needed help. So I aim for this web site to share more of the strategies that I learned to use to provide an incredibly high level of care to Chris, and survive the despair that constantly threatened to engulf me.

So my mission now is to provide practical support, but within that EMOTIONAL support to help carers overcome the loss and pain they are suffering, and often pushing aside. UNTIL THERE IS A CURE!