I was born in Dublin but I have lived in London since 1988. I am married to Deirdre ( http://deirdre-amonkeyonhisback.blogspot.com ) and we have two children Kate(21) and Tom (18). I can't say exactly when I developed ALS, I had symptoms from late 2007 including the shakes, cramps and a slowly developing left foot drop. I finally went to the doctor after two heavy falls and when he put all the symptoms together he referred me to a neurologist, I was diagnosed within 6 months. I'm 51. I have since progressed to the edge of physical decrepitude.
I worked with the homeless in local government for 25 years, but retired a year ago, in July 2012. I often see my friends from work, they have been faithful to me and my family.
Prior to diagnosis I sat - volunteered - on the local council, specialising in adult social care, I have now moved from critic to user! Because of my work on this body I was aware of what was/is to come for me and my family....in fact, one of my last roles in this capacity was to report back on the conference where the merits and demerits of dying at home as against in hospital/hospice was the principal topic. I exercised a lot and loved going to the gym, I really miss spinning both for physical exertion and the mental clear out it brought. Now I concentrate on family. I was the trade union rep at work too. Funnliy enough since I became ill I found I was getting more agreement in my TU negotiations on individual isssues, and members seemed much more willing to take on board my suggestions about how to solve their issues for themselves. Empowerment reigned! Conversely, I feel that staff in HR were not exactly helpful to me, I have concluded that they remember the tussles I had with them in past times, and didn't seem capable of moving beyond them.
On retirement, I worried about whether I would be able to fill my time. Of course there were also money concerns with such a decision. In the end I felt I was giving too much in work and had too little to give when I got home. At present, September 2013, my condition is fairly extensive. My legs are significantly affected and my arms are losing strength rapidly. I feel at present that it is the strength in my arms which is giving up fastest, I have concluded that it will be this lack of arm strength which will stop me standing and walking, nae stumbling, about. I have significant problems lifting my arms and generally have to push them together in the hope that they will squirt upwards.
My lung capacity is diminishing that this is affecting my ability to talk, eat and swallow. With my voice slowly diminishing I don't know for how long I will be able to effectively use voice activated technology. This problem is significantly enhanced by my fine motor skills (especially in relation to typing) diminishing at the same time.
I use voice activation technology (Dragon). Whilst I made significant progress at first, I am having diffiulty mastering it. It doesn't get the Irish Accent nor does it seem capable of ""learning it"", as it is supposed to do. However, it is of enormous assistance to me. I also use various voice recognition apps on the IPhone/pad but these all suffer from a voice correction tool and will not, as a consequence suffice, when I can no longer correct by keyboard.
Kate has now finished her degree and is home with us at present. I think she intends to stay with us a year whilst she plans for the future. She went to Exeter, 200 miles away. I'm glad she felt comfortable going to live so far away but but it has helped her enormously in her development as a person. My son Tom, who has lived with us all this life, is now embarking on his university education. He is heading off to Southampton (70 miles away) to study. He has been an enormous help to us over the last few years, it's difficult to see how we will manage without him. He has always been willing to help me in the most difficult circumstances, I'm having difficulty learning to expect the same sort of personal help from my daughter. It's clear that she is willing to provide this help butt I've not yet gathered up the courage to accept it. I realise this is a bit primitive of me, and I hope I'll get over it, but it's difficult, at present, to see the light.
Healthwise; I'm still walking/stumbling (rollater!) but only just, I am unable to take a single step without something to hang on to, full time in the chair wheelchair beckons. My arms are deteriorating quickly. Whilst I am still able to eat easily I have difficulty getting the food into my mouth, such are the shakes, lack of strength and spasticity that I have to endure. I have lost 20% of my body weight since diagnosis and even though I can still eat and swallow, my nutritionist has advised me to consider a peg. Needless to say, I'm not enthusiastic.
The work on our house is finished (for now!).the move downstairs has been completed (jan 2011) and I am suprised that I feel no loss about the fact that upstairs is now out of bounds. This involved extensive renovations which we had to pay for, as there is no central government assistance available. The local MND/ALS Association made us a £2,000 grant and the local council(government) funded some of the wetroom fittings including a ""bio bidet"" for the toilet. The funding provided from the various sources was a drop in the ocean compared to the overall cost. Consequently our savings are shot. Each month or so brings a new challenge; more grab rails, raised toilet seat, different seats, new ways of doing simple things and most recently the addition of a standing hoist to the battalion of devices we have in the house. So far, there has always been a way but I worry about the challenge that has no solution.
I currently employ two personal assistants for 27 hours a week, this enables my family to get out to work/school/college. This is very important to us all.
I constantly worry about the fact that I will live long beyond my ability to mobilise. Some might think this is odd but I fear a life of total dependence particularly in terms of toileting, communication and burden to others. It is clear to me that voluntary euthanasia is on the horizon but I fear it won't come in time enough for me.
The Governments time of austerity has hit home in the UK.. Though the G men say there are no cuts to frontline services the reality is the opposite. They think that if they say it often enough it will become so, but those - like the disabled - on the fringes of normal society, have good cause to believe that these utterances are weasal words served in snake oil.
Dependence is creeping up on me, today I cannot manage new things on my own. However,I have come to realise that whilst there is an abundance of evil and hatred out there, it is tiny and inconsequential compared to the the overwhelming tidal wave of love and compassion that I have encountered since diagnosis. I find this in even the smallest things, the people on the street, the shopkeepers, ex-workmates; both friends and ""rivals"", but most especially in friends and family, who standby - day and night - to help in any way they can.
We are trying to be normal in as many ways as we can. We had a Christmes party in 2010 when all my brothers and sisters came over for the weekend, we kept going until 3 am and, f**k me I was able to stay up!! Christmas 2011 came and we did it again, we combined it with the celebrations for my 50th birthday on 27 Nov. And now we have did it again in 2012 and now the plans are in motion for 2013!
In June 2009 I firmly believed, and in a perverse way hoped, that I would be dead by now. However, I'm truly glad I have been given extra time to adjust, endure and move on .... time and time and time ..... Again!