Here is Loretto’s own Story of her Journey with MND:
It all started when I couldn’t move the fingers on my left hand. I let it go for a couple of months thinking it was a trapped nerve. I found I couldn’t lift heavy objects; things that I could usually lift became a problem, even a shopping bag. I kept dropping things. Going up stairs became very difficult for me. I thought that it was just because I was reaching middle-age. My fingers would freeze for only for a couple of seconds. My muscles would twitch. I went to the doctor she sent me for tests which were all clear so she then sent me to a neurologist in the Mater hospital. I was diagnosed with MND last March.
Overtime my limbs got weaker. I now spend 99% of the time in a wheelchair and I don’t have much use of my hands. I can still type with a couple of fingers which is great because that means that I can still work. I work on the IT help desk in Arthur Cox. I told them when I was first diagnosed and they have been incredibly good to me. They pay for taxis to bring me to and from work; they paid to put a stair lift to my house. I have voice recognition on my PC which I’m sure the others in the office find distracting but they are too polite to say so. They’ve taken down walls and put in sliding doors into my office. If they were not so good to me I wouldn’t still be working. Every week they ask me if there is anything they can do for me. I never imagined that they could be so considerate and kind to me. And I will always be grateful to them for making my last few months working so pleasant. I think it’s important to work because it allows me get of the house for a few hours every day. Let’s me interact with people and it gives my parents a break.
I feel I have deteriorated quite quickly but I know that this disease affects everybody differently so I don’t have anybody to compare myself to but I just know that in March last year, the week before I was diagnosed I was in London for a weekend. I walked around London, up and down the stairs of the tube but within a couple months walking long distances and climbing stairs were completely out of the question. Physically the thing I worry most about is my breathing I know 90% of MND patients die from breathing difficulties and my breathing has deteriorated quite quickly since last October. I am using a BiPap Machine at night. I find it a little bit difficult but I have to use it. Every time you face a new challenge you find a way to deal with it. Weather it is getting your Dad to hold the hairdryer and point it in your direction or asking your mother to put on your makeup. Sometimes I think it is unfair that as well as dying young you have to waste away slowly.
I never had any pain which I always thought was a good thing because I always thought there can’t be anything seriously wrong with you if you have no pain. I used to say that to doctors until one doctor told me that they worry when you have weakness and sensation but no pain.
Mentally I’m quite relaxed about my diagnosis, I always was. When I was waiting on my appointment I wondered if it could be something serious so I googled the symptoms and it kept coming back to MND. So you think maybe I have it but you don’t think that you do have it until it is confirmed. After the diagnosis was confirmed my family were devastated. We’ve always been a very close family that has talked a lot about everything so it helped to know I was not alone and I had the best support I could wish for. I believe that every family has some cross to bear and this is our cross. We are very lucky as a family, we’ve been very happy, we never wanted for anything. We’ve had some sad times but we’ve been able to get through them with the help of each other. People ask me how I am and I say I’m great because I do feel great. I am the same person I always was I just know that I will be dead in a couple of years. Everyone has to die of something and if I had a heart attack I would be gone already. Just because I can’t physically do things doesn’t mean I can’t do the things I enjoy doing. I don’t think I am reacting any differently from other people. No one knows how they will react. You can’t say “Actually I don’t want MND. I want to give back thanks, I kept the receipt”. So you have to get on with it and deal with the challenges it gives you. It’s like the old saying what doesn’t kill you makes you stronger and you are not going to be sent anything you can’t handle. People don’t know what to say to you when they hear about your diagnosis. I always say “it’s okay, I understand there is nothing you can say”. If there were words that anybody could say to help me they would’ve already been said.
I don’t really think about dying. I think about my parents and how they will cope after I am gone. They are very fit and healthy which is great for me to because they have to do everything for me and I hope looking after me doesn’t wear them out too much. I think about my niece and nephew and how I hope they will remember me. I want them to miss me. If one day they have children I want them to tell those children about me. I know it’s really really easy to forget about people.
Probably one of the worst things mentally is I think about things that are never going to happen. Things like I’m never going to retire to Florida, which is something, I had planned to do with my sisters. I’m never going to see my niece and nephew get married and have children. Even little things like I am never going to cook again, I’m never going to drive again which I’m told is probably not a bad thing for other road users, I’m never going to win Masterchef. It was never really going to happen but I could still dream. I’m never going to win the lottery but one doctor did say the odds of me getting MND were the same as winning the lottery.
I think one day there is going be a cure for this disease. There are some really intelligent people working on a cure. There should be no limits to the amount of funding they are given to do their jobs properly. Nobody knows what causes the disease. I read somewhere that statistically athletes were more prone to get it. I was certainly never athletic but finding out why people get it would be a step in the right direction towards a cure.
The IMNDA is really good about giving you tools, advice and equipment to help you cope with the disease. Electric wheelchairs, hoists, eye gaze for the computer and even an arm attached to the table so you can feed yourself rather than having somebody feed you, these all help to improve your quality of life and to keep you as independent as possible for as long as possible.
We joke a lot about MND. I have a sister who we call Betty Davis, because I am convinced that one day she will served me up a rat for dinner like Bette Davis did in the movie “Whatever happened to baby Jane”. The same sister says she is convinced I don’t have MND; she says I’m just being lazy and I am pretending to make her push me around in a wheelchair.
My niece once asked me if I had any regrets. I told her the only regret I had was spending so much money on anti-ageing cream. I don’t have a bucket list. All my life I’ve done everything I wanted to do. I have travelled all over the world. When you are terminally ill you don’t worry about things that you used to worry about. You don’t think about money, you don’t think about having a nice car. All I want to do is to spend quality time with family and friends. I am very grateful for the friends I have. They have made great efforts to spend time with me.
