I was born in Dublin but I have lived in London since 1988. I am married to Deirdre who writes a blog on being a carer (
) , we have two children Kate (23) and Tom (21). 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 54. I have since progressed to the edge of physical decrepitude.
I worked with the homeless in local government for 25 years, I was medically retired 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 government council as a member of the scrutiny panel, 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 a 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, eventually my life insurance paid up and things became a wee bit more relaxed financially (many such policies pay up if they determine the insured is within a year of death). At present,my condition is fairly extensive. My legs are non functional and my arms are losing strength rapidly. I am no longer able to weight bear.I have significant problems lifting my arms, without leverage, 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 am lucky that I have retained my voice and can 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 too well nor does it seem capable of ""learning it"", as it is supposed to do. This problem has eased since Dragon version 13 areived. Despite these difficulties It has been 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 for a few years 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, it has helped her enormously in her development as a person. My son Tom, who has lived with us all this life, has now embarked on his university education. He goes to Southampton (70 miles away) to study, though he is living elsewhere he is only an hour away. He has been an enormous help to us over the last few years, it was difficult to see how we would manage without him. He has always been willing to help me in the most difficult circumstances, I had some initial difficulty learning to expect the same sort of personal help from my daughter. She was willing to provide this help but it took some time for me to accept it.
Healthwise; I'm now full time in the wheelchair. Whilst I am still able to eat I am unable to feed myself. I have lost 30%+ of my body weight since diagnosis and even though I can still eat and swallow, I am very slow. I had the PEG fitted on Feb 5th 2014, and supplement my calorie intake through it (around 50 %).
The work on our house is finished (for now!). The move downstairs has been completed and I am suprised that I feel no loss about the fact that upstairs is now out of bounds. This involved extensive renovations (converting some of the living space into a bedroom, digging the kitchen out and converting it into a wet room, and building a new kitchen) which we had to pay for, as there is no central government assistance available. The local MND/ALS Association made is a small grant, and the local counci ((government) funded some of the wetroom fittings including a ""bio bidet"" for the toilet. The funding provided from the various bodies was small compared to the overall cost. Consequently our savings are shot. Each month or so brings a new challenges; new ways of doing simple things - the latest being how to pee whilst remaining in the wheelchair.
My breathing has deteriorated to the extent that I am currently using the bipap all night and sometimes for a few hours during the day. It has been of enormous help.
I currently employ a personal assistants for 80 hours a week, this enables my family to get out to work/school/college. This is very important to us all. This is funded through NHS Continuing Care. It does take time to become accustomed to new people about the house but these difficulties are small compared to the benefits which accrue.
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 weasel 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.
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!