The local Hospice has been marvellously supportive; within a matter of weeks after diagnosis I had a call from the specialist nurse for palliative care at the hospice. She described herself as a ‘cage rattler. She came to visit, and has done so every three weeks to give medical and moral support. I very quickly learned about the ethos behind the hospice and why I had been put under their care. It is NOT a place to die, as I had thought. It is a place where there is immense kindness and support for anyone with a life-threatening condition. They offer emotional support to the patient, their carer and families, and respite care and, ultimately, palliative nursing care. It was a revelation to me that they work in conjunction with the whole patient team – the specialists, the GP and community nurses. The nurse suggested I have a weekly visit at home from the hospice’s aromatherapist to help my weak face muscles. Then she arranged for a representative from their Welfare Department to talk to us about finance and a Living Will (ADRT), which is something I was keen to set up. The Living Will (ADRT),is put into the Emergency Services database, so that if they are called out they will be informed of my wishes regarding resuscitation. These are all areas of the patient support network at the hospice. The welfare assistant was able to ‘spearhead’ the benefit system through the maze of forms and jargon, which would have defeated us. Because the applications are made on our behalf by the hospice, the Pensions Department hurry the decisions through. All the benefits have kicked in and were backdated some months.

I have only had one hospital stay so far, for gastrostomy, and I suffered a bad reaction – the recovery time was 3 months. The gastrostomy was thought to be necessary because we were planning to have a holiday of a lifetime to New Zealand and the hospital considered it would be sensible to have the stomach tube in place beforehand. The procedure was horrendous. I know everyone is different, and of course had I known too much beforehand I might have refused it.Months further on, I believe improvements need to be made to prepare patients for the gastrostomy procedure. I am saying this for the benefit of improving care for future patients.

The ward nursing staff seemed to be unpractised with speech impaired patients, possibly due to temporary ‘bank nurses moving from ward to ward. But considering the ward is experienced at RIG and PEG procedures for MND patients, I was surprised they weren’t more aware of how to handle a patient with speech loss.

I was in severe pain for 24 hours following the insertion of my stomach tube and, with my inability to talk, I was not given pain management until a young doctor witnessed my distress. Imagine being in severe pain and not being able to tell anyone about it. In fact I was ignored pretty much. On the sixth day the consultant wanted me gone, saying I would recover quicker at home and clearly MRSA was a real worry on the ward, but my husband refused, saying I was too ill, and the nursing staff agreed. So I stayed one more day and I was given an enema before I left. They insisted it was bad luck and probably due to the gas and constipation. If constipation has a major effect on the patient’s recovery, could it not be organised through the GP and district nurse that prospective patients have an enema at home a day or so before surgery?

No one asked if I could eat or not, and presumably had no information about my pre-op condition, since I was not offered food, nor was I asked by nurses if I could eat. Early on they twice attempted food by a slow drip into the tube but my painful stomach rebelled. I was not offered food by mouth, but towards the end of my stay I requested some, because I was hungry. It would have been helpful if soup had been available at any time if I felt I could eat it, but it was not an option. I would have liked the staff generally to have been more aware of my condition and considered my difficulties. There were not enough skilled nurses.

The speech therapist and dietitian were caring and helpful and monitored my progress on the ward frequently, but the release letter from the ward did not arrive with the GP until almost a week later. We had to chase up the district nurse. There was no system in place for me.

No one seemed particularly concerned about trying to get me up and moving ahead of my departure from the ward. A physiotherapist should have been involved, because seven days of pain lying in bed made me extremely groggy and my diaphragm was weak. Perhaps I am expecting too much from the NHS.

I was told the stomach tube inserted was a RIG. It is done by a doctor in the Radiology Unit with nurses to assist. Gas is pumped into a tube via the nose to inflate the stomach to make for accurate placing of the tube. All the while I was able to follow the procedure on the monitor. Four injections of local anesthetic are given around the site, and the contraption itself is pushed through the numbed skin straight into the stomach. The connection cap is fitted on the surface of the skin just below the rib cage.

Four months on from the gastrostomy, the fog lifted and I felt more in control of myself again. I got back into dog walking every day, albeit only short distances, and also cooking meals.

We had to cancel the trip of a lifetime because I felt unwell after the gastrostomy and we considered it would have been a huge risk. However we have just had a very successful five-day driving trip to Germany. Because the roads are so smooth, it was not a tiring way to travel.

Within a few weeks of the diagnosis, friends had provided me with a lightweight laptop with a text-voice programme using American software. I now have an English voice, ‘Audrey’, and she is speaking now. Because I have been a typist for years, it was second nature to convert to this way of communicating. Within 6 months I had forgotten what my own voice sounded like, and while typing I could forget my disability more or less. The amazing thing is that a young friend of mine (now 19), who as a child was unable to communicate effectively, heard of my diagnosis and felt a kinship with my new disability. It was he who found the software programme which enables me to speak via the computer. Trial voices can be downloaded fromwww.NextUp.comand tried for a short period free of charge. The software including the English voice costs under ‘100. The company is very helpful and prompt with their replies to queries. I have experienced mixed reactions from friends. Some consider Audrey is not unlike my old voice. But some friends prefer to sit alongside me and watch the typing on the screen, and have a conversation that way. I really do miss not being able to laugh or call or shout, but whilst I have the computer in front of me it does help me to forget that I cannot speak, and I feel less frustrated. Obviously it is not suitable for all occasions because of its size and the need to be sitting. For example, I cannot take the laptop into shops or out walking. But it is so useful for hospital and doctor’s appointments. I can tell them in my own words rather than scribbling my questions and answers. I was offered a ‘light-writer’ at the Hospital which is free to patients and is funded by the MND Association, but it is old technology now and wasn’t right for me because I am a typist [laughs]. The next generation are growing up with computers so future patients will need to be offered laptops and not ‘light-writers. I hope the MNDA will help fund them.

My message to other people living with MND is to learn to type because it is likely that as your illness progresses, you may lose the ability to speak. For people caring for a family member diagnosed with MND, try to be patient and sit down with them for conversations each day even if they can’t communicate through a computer like me. Not being able to talk is so isolating. I really miss not being able to talk on the phone to my grown-up children and join in the family discussions over the dinner table. My 6-year-old granddaughter said just recently she misses the old Nanny, and followed it up with a lovely letter saying that she knows I may not get better and she is finding it difficult to talk to my computer. She is an excellent reader and she prefers to watch the screen. We have little games with the various American voices, listening to how words and numbers sound. This helps break down the barrier.

Six months on I have cranial-sacral therapy, acupuncture, and aromatherapy massage on my face. My energy is improved with these treatments. Also the circulation to my hands is better and my sinuses are clearer. This is to improve my wellbeing and to cope with the MND. When I over-exert myself, I produce excess saliva. This is very troublesome and drags me down. At night I suffer from a dry mouth which is equally distressing.

I have tried various medications to relieve the excessive saliva, but none are effective. I am currently experimenting with eye drops taken orally. There is a slight relief which wears off by the afternoon. It is not troublesome when I am sitting or lying, so I conclude it’s nature’s way of telling me to rest. It comes on distressingly when I am exerting myself. By late afternoon it is worse. Tomato juice and eating by mouth seems to pacify it. By the time I was diagnosed in mid 2006, my laugh had changed. Currently, my laugh is a hilarious sound and people are unsure if I am crying or laughing. It is an uncontrollable noise, very loud, strange, and most embarrassing [laughs]. Crying is very distressing because it increases the saliva and it is easy to choke on it. When the saliva is really bad I become emotional.

I wear magnets at night to help breathing. These were offered by the local hospice and are invaluable. Apparently they have an anti-inflammatory effect so I use them to target muscle aches. I take Echinacea daily to boost my immune system, and Bach flowers – Oak and Star of Bethlehem. These help mood. I am also taking Vitamin E and make sure I have a glass of orange juice daily through the [PEG] tube.

I first noticed symptoms in February 2005. I was actually partaking in a fit-ball class rather like pilates, in that it strengthens the core muscles. For years I had been suffering with muscle aches in neck and arms, mainly (I thought) due to my work. I had been part of my husband’s garden design business and carried loads far too heavy for me and suffered tennis elbow. Because of all this I had frequent treatments from a sports therapist who suggested that the class would improve my neck mobility. It didn’t really help; I found the exercises very difficult and would strain my neck to lift it off the ball. On one occasion, the last, I felt strange in my neck and jaw; it was slightly locked. When I went to speak, the words wouldn’t come out right – very slow and slurred. It was an enormous effort. This symptom worried me; it was certainly not just tiredness and I feared I had damaged a nerve in my neck.

By mid March 2005 speaking was an effort. I had to compensate all the time. Actually I was not aware that I was doing it – the brain clearly accommodated the disability; I realized this some while later. My slurred speech gave the impression I was drunk, and in fact my boss was the first to comment, when he rang into the office one day and I answered with the usual company name (with two ells in the word). He said, Sue, have you been on the bottle I was worried but tried to laugh it off by saying something had gone awry.

I went to my GP and she noticed immediately something was wrong. She guessed it to be neurological and possibly a stroke. I couldn’t see that being a likely cause, since nothing in my health would back up that theory. I was recommended to a neurological consultant, but had to wait 3 months. At this time, my mouth was very sore on one side only. Eating was starting to be arduous; I noticed when I was tired, my tongue didn’t have the mobility it should.