It was the neurologist who first suggested that I write about my life with motor neurone disease (MND). Other medical professionals, friends and family agreed. I started to believe I could, but in the back of my mind was the thought they were just humouring me. After all, when you have a degenerative disease like MND, everyone is more than nice to you. How I long to go back to people treating me as they did before. I forget I cannot speak now, although my brain still appears to work in the same way it always did.
September 2004
On holiday with my husband in Portugal. I was bending down to put on my shoes when the room spun round. I spent the rest of the holiday feeling dizzy and had noises in my ears. When we got home I saw an ENT specialist who diagnosed tinnitus.
October 2004
My speech is sometimes slurred and my tongue seems to be in the way. I contacted the ENT specialist who, when he saw how my tongue was quivering, said I needed to see a neurologist. Now I know something is seriously wrong.
Many months later
Have seen the neurologist many times and have had lots of tests. Recently I have been biting my tongue while eating and choking on water. Now the biting also occurs when sleeping. Saliva is becoming a problem, sometimes running from my mouth.
15 July 2005
A hot sunny day, but the day my world collapsed. The neurologist told me the news I had been expecting. I asked if it would shorten my life expectancy and he kept saying he was sorry. I drove home in a daze. I thought how am I going to tell the children? My husband and I both cried. The only positive thing was my resolve to fight to keep things as normal as possible for as long as possible: I must carry on playing golf and begin my teaching career in law in September. MND seems to have a mind of its own on how quickly or slowly symptoms appear.
Telling friends and family is hard and I keep Kleenex in business, not so much for the tears but to control salivation. Visitors keep coming and although there are many tears I try to keep everyone cheerful. People often show kindness that takes your breath away. Being touched and hugged is a hazard of having an incurable illness: I have experienced some extremely funny moments from people who have ‘clasped me to their bosom’ in sympathy with my plight. I am adept at dodging bear hugs.
I am getting angry and questions keep going around in my head: ‘Why have I got this awfully cruel disease? What have I done that was so bad?’ I feel guilty for bringing all this upset to my husband and two daughters.
I have started to swear which is most unlike me. Now everyone who reads this diary will know I am not the lady they thought I was!
I had an MRI scan to exclude a tumour. It may sound ridiculous but I am disappointed that no tumour was found because perhaps that could have been zapped. Anything but MND.
A cousin has suggested I obtain a second opinion: I saw another neurologist in London with the agreement and help of my own neurologist. The second doctor agreed with the diagnosis of bulbar palsy-onset MND but warned me to be realistic as progression is inevitable but may be slow to affect limbs and breathing.
January 2007
Finally had to give up work last month. Now I have to make a decision when to have a gastrostomy. My neurologist advised me to have it soon because swallowing is becoming more difficult and it will make me feel better by increasing fluid intake. The thought of having a hole in my body when I am so vain is not easy.
Mid 2007
I had a gastrostomy in February but had severe pain after the procedure which lasted months; finally the cause has been diagnosed as nerve damage at the tube site, and I have been treated. I have to learn not to overdo it. It has always been hard for me to admit I need help. I realize as time goes on that this is a silly attitude as it makes things harder for those I love. BUT I don't want to slow down. I want to pack as much as I can into the days I have left. I don't want to wait around to die. I don't want strangers coming into my home to look after me. I want to live my last years with dignity.
The morbid stage has slowly passed and I am really trying to be more positive. My neurologist said that I should enjoy every day. At first I couldn't understand how anyone could enjoy every day with this disease hanging over them but slowly I have been able to enjoy more and more days.
Late 2007
My arm strength has started to deteriorate; pulling a piece of toilet paper is an effort. I have resigned from the golf club, I can no longer cook or do any domestic chores. My neck has also become a problem due to muscle weakness and I have been in some hilarious situations because of it!
I find some things funny but of course there is the serious side. Problems include going to the toilet, trying to get food into my mouth, lifting a cup, spilling and dropping things all the time, being unable to pick up anything from the floor. It is hard for me not to be able to keep things tidy; it drives me mad but I turn a blind eye realizing it is not important.
June 2008
Although I have lost my speech I talk to myself in my head, making myself do things, especially if I am going out, because I am always worried about dribbling or needing the toilet. Although I sleep well, sometimes I pray I will die in the night because I want to make the lives of my husband and daughters easier. How will they be when I am not here?
July 2008
It was suggested I use a wheelchair. My eye expression made it clear what I thought of the idea but I finally agreed.
15 July 2008
This is the third anniversary of the definitive diagnosis. Time has gone quickly and changes have crept up on me. I have gone from being independent to being totally dependent on others to do the simplest things. However, I am still stubborn and in control of organizing my needs while my husband tries to sort out what I want.
It is now impossible for me to be understood: as a family we have learned some signs but as my hands and arms deteriorate even this is becoming difficult.
Early 2009
I can only manage one finger on the computer supported by the other hand. It is a good job my eyes are expressive: I could never be a poker player.
I wish I could be treated as an individual by all the healthcare people. We are all individuals who cope in different ways with traumatic events. I don't want to be bothered by people regularly wishing to see me unless I want to see them. Being offered counselling is something, we, as a family, do not want but some healthcare practitioners have ignored our wishes. My philosophy is to get advice as symptoms appear.
I have total faith in my consultant who has not stopped looking for alternative diagnoses. He has been caring and a willing listener. My general practitioner has been very good, coming to the house when I have needed him. The district nurse has also been invaluable and always at the end of the phone.
I want my husband and daughters to know they have been amazing and because of them I have been able to keep strong. When I have gone I don't want them to feel any guilt. It is my wish that they carry on their lives as before.
My father's motto was ‘live and laugh’. I have been called brave, stoic and amazing, but I am not. I have just tried to live my life to the full, with a smile.
Sadly, Felicia passed away, aged 58, on 17 June 2009.
Footnotes
DECLARATIONS —
Competing interests None declared
Funding None
Ethical approval Not applicable
Guarantor JV
Contributorship Both authors contributed equally
Acknowledgements
None