- Tommy Maker
- Sex: M
- Data Quality: 3 stars
- ALS: 5 yrs
- Bi-Pap Wheelchair
- Bulbar: mild
- Arms: moderate
- Chest: mild
- Legs: moderate
- Tommy Maker
- Male, 51 years
- London, United Kingdom
- Primary Condition
- First symptom
About Tommy Maker
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 in July 2012. I had difficulty going to work in the wheelchair, I don't know why because when it came to it, it was a piece of cake, made all the sweeter by my friends and colleagues.
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, April 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 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 am improving but not as quickly as I would like. 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 is now at university completing her third year. She's at Exeter where she is studying history, she loves it. Its nearly 200 miles away, so it's not too close. She was reluctant to go so far away, she's worried about the manner in which I am diminishing, she's worried that, for her, my deterioration is happening in chunks; I'm worried too. I'm glad, however, that she took the best option that she had, I'm happy that my MND did not influence the final decision she made. She did get extremely upset when she was home over Easter, I feel she saw a level of disintegration which she was not expecting. She stayed with us over the summer and we travelled to to Dingle which is on the south-west coast of Ireland. the idea of the holiday frightened me, I was concerned that being away from my comfort zone would cause distress and associated powerlessness. In the end the holiday was a terrific success.
I am also concerned about my son Tom, I think he relied upon Kate when he became confused about my illness. He's 18, he has had to to deal with the situation without his sister being immediately to hand, he won't want to bother his parents, he's a brave guy. But I feel, he because of his close proximity is more able to cope with the situation and at times provides the consolation for Kate. he does sometimes become surly and uncooperative but I feel -and hope -that this is more to do with him being a 18-years old rather than the difficult situation he faces at home. I am hopeful solutions will - as is often the case - present themselves, he's a resourceful fella. Facetime and mobile phones help them to help each other but there's nothing like 121. We now have to consider the fact that by the autumn his help may no longer be available at home as he is now considering university offers.
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 able to eat easily and without difficulty the problem I have is 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 25 hours a week, this enables my family to get out to work/school/college. This is very important to us all.
Whilst my mobility is severely affected my breathing is still good. Consequently I ""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 is beginning to 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, 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 done it again in 2012 though we feel that this year might be the last such was the effort involved.
I finally decided that I have to apply for disabled access to football, why the hell did I not do this earlier? Why the pride of refusing to accept that one is disabled?....what a plonker!! So I have become a disabled member at The Arsenal. Why I did not do this before is beyond me; disabled entry costs 34 sterling with carer free as against £60 x 2 for the ""norms/stiffs"". Hard to say no particularly as we are going to win the title next year....Gooners....!! I do hope that one day, before I depart this mortal coil, that I will meet the Professor - that's the Arsenal Manager to those of you out there who are not up to speed!
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!
- Profile Activity
- 21,015 Views
- My CareTeam
Tommy Maker's Dragon Speech Recognition is for:
- Improve communication
Tommy Maker has not reported any side effects for Dragon Speech Recognition.
|Dragon Speech Recognition (augmentative speech device)|
|Every Other Week May 05 - 05, 2010|
|Every Other Week May 05 - Jun 02, 2010|
|Weekly Jun 02 - Aug 02, 2010|
|As needed Aug 02, 2010 - Jan 01, 2011|
|Daily Jan 01, 2011 - Last Update|
|Date||Dosage||preparing for future deficiencies Perceived effectiveness||helping to stay working Perceived effectiveness||Improve communication Perceived effectiveness||Side Effects||Adherence||Burden|
|Jul 15, 2011||Daily|
|Oct 06, 2010||As needed|
- Jul 15, 2011
- Advice & Tips
- easy at first to get into the workings of the software, but it simply cannot proceed beyond the initial intermediate stage. Too many bugs in the system, the costs of proceeding further with the device is not sufficiently in correlation with the benefits which accrue. The support package is hopeless, staff at dragon always blame other applications which I have loaded. I have this system loaded at home and at work and have the same problems at both locations.
- $200+ monthly
- Oct 06, 2010
- Advice & Tips
- This is a fantastic piece of equipment, however, it's important to start learning as soon as possible. The Motor Neurone Disease Association in the UK advised me to start training as soon as possible, I regret that I took some months before following that advice. I worry, however, that I may not be able to carry on using the equipment in the event that my voice fails, this however has not happened to me yet. It is difficult to set up, and I often trip over at the cables but I'm learning that there are wireless adaptations for most things. The bonus for me is that whilst learning about the dragon in work, I have learnt how to use it at home. The frustration is that the dragon takes different commands depending on what computer you are on, but it's easy to get over this, it just takes time. It saves me a huge amount of time and allowed me to continue in work. I recommend it 100%.
- < $25 monthly