Sue - Interview 31
Age at Interview:
Age at Diagnosis:
Sue is a retired business administrator, married with 4 children aged 37, 33 and twins aged 22. Ethnic background/nationality: White British.
Brief outline:Sue was diagnosed with bulbar onset motor neurone disease less than a year ago (2006). She is now unable to speak and uses a laptop with voice software. Her arms and legs are still relatively strong.
More about me...
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 ell's 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.
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 thought back over the previous few months for an explanation - could I have trapped a nerve in an attempt to do the exercise that was expected of me? The car hatchback lid dropped on my head 2 weeks previously - did this cause a trauma to my skull? I was suffering a certain amount of stress, in that I was main carer for my difficult mother-in-law - could this be part of the problem? My mother died in her 50s with cancer of the throat and for 4 years she could not speak. This is an uncanny connection. That was another fear for me - could this be predisposition to cancer?
In the previous year I had a vile reaction in my throat when the farmer was crop spraying opposite our house - could this be connected? Crop spraying had been going on for 30 years, but this was the only time I felt the reaction directly in my throat. My mouth remained sore after the spraying incident and it left me with sensitivity to strong smells, tastes, certain fruits, perfumes, some plants, chemicals, etcetera. I couldn't identify changes to any other parts of my body, simply the mouth and throat area. However, it suddenly opened my eyes to possible damage to our family's health; my husband suffered from neck and head aches for as long as I can remember and my twin daughters also have unusually sensitive muscles. Now, looking back, perhaps growing vegetables in our allotment alongside the treated field might well have put us all at risk.
I had face pain a few years ago connected with over-large fillings. When one was ground off a little after my protestations, the face pain disappeared. Was this a TMJ [temporo-mandibular joint] problem? Was the amalgam in my teeth leeching into my system? In 1999 I caught a virus and was unwell for one year and was advised to stop physical work and change my life style. Now, looking back, I believe I had ME [myalgic encephalopathy or chronic fatigue syndrome] - can this be a pre-cursor to motor neurone disease? In the light of my new problem, I went back to my dentist for his advice and he was certain that it was neurological rather than physical, even though he had to admit I had unusual face and neck aches over the years.
Many of us newly diagnosed patients search our memories for any clues as to what could have caused this neurological problem, such as genetics, lifestyle, environment, diet, harmful chemicals. Reading the website called 'Patients Like Me' it strikes me that MND patients never stop hoping for a cure and it's this that keeps them positive and able to cope with their worsening condition. We search for a cause from day one when our odd symptoms occur. Many people who suffer loss of limb function first of all focus on MS, ME, CFS etcetera, because these are the well-known disorders. This searching occupies their minds full-time and can become an obsession. Once diagnosed with MND (and probably this is the case with other neurological diseases as well) they continue the rest of their life searching for answers. Could old symptoms be a precursor to the disease, etcetera? In many cases they continue to wonder if they have been misdiagnosed.
I want to see more public awareness of this disease, which is by no means a minority illness if, as I am told, seven in 100,000 at any one time have it, or whilst people are at work today, three new patients will be diagnosed. We need the media to focus on it as they did with cancer to remove the misconceptions and to forge ahead with more research. I would like to see more attention paid to the iniquitous use of chemicals in our daily life - they are a hazard to our health and we are only just beginning to see what damage they can do. More research is needed urgently. The Agro-industry and the Government are shutting their eyes to a link between crop spraying and illnesses and they simply declare there is no evidence. But how do we know there is no evidence if there is no research into the effects of chemicals on our health? There are health and safety regulations to protect farm workers, but no means of protecting the public who live alongside the areas of spraying. The spray chemicals are designed to kill the insect's neurons. Chemicals used in the farming industry surely progress through the food chain from crops to livestock to milk and meat etcetera. This is one aspect of the environmental issue that does not seem to be of concern to politicians, but is a growing concern to the public.
Site map /
Contact us /
DIPEx is a registered charity No. 1087019 and a company limited by guarantee No.
Copyright © DIPEx 2008. All rights reserved. Website by Thinking Fish.