Lifestyle...living with Motor Neurone Disease

How do you live with MND. How do you cope with the everyday chore of trying to get ones body to do what you would like it to do. Every new day is an adventure into life, a life where nothing is normal any more and for you to realize that normality has gone out the door.
For me it is the fact that just to wash the dishes is a problem in that my balance will not allow me to stand upright and away from the sink. As long as I lean against it I am OK. To even grasp what ever is lying in the sink with hands that cramp up can also take up time and it is amazing the amount of energy that is used by doing this everyday task.
We humans I'm afraid take so many things for granted...walking, eating, dressing, bathing. They are all operations where someone with ALS/MND has no choice but to find alternative ways of doing things. If not by yourself then with the help of support people.
If you are a woman and find that your arms and hands will no longer cooperate with the act of putting on your bra you most likely find it easier not to wear one and let it all hang out, so to speak. Both sexes find it easier to do away with buttons and wear garments that are loose fitting, ie, sweatshirts and track pants. Shoes can also be a problem but when you have to wear a splint (as I do on one leg) then they have to be as comfortable as possible.
But our biggest enemy is energy..even the simple act of riding your power chair can take it out of you. Moving from one end of the house to the other, cutting one's meat when eating, getting on and off the loo. These are all problems that are surmountable but with effort.
Without energy the body slows down, becomes sluggish and everything is looked on as something that you would rather not do. With AL/MND then, the problem becomes twofold. If you have the willpower and the drive to try and beat your bodies condition and to make the most out of a bad situation then you are halfway to making your living/lifestyle more comfortable.
I am at the stage where as yet I do not need help with the everyday tasks of living but I know that will change. I will accept and acknowledge that fact and get on with life as best I can. But as I have stressed in other entries on my blog I find it helps to be positive...this can also make living with ALS/MND more acceptable, not only for you but for those around you.
And if you have access to a computer (and if you are reading this then you do ) then there are support groups all over the world that you can tap into. Chat rooms are also a great means of helping and dealing with your condition. You will find that there are people out there who have no one in their everyday life to talk to and a chat room where all the people have the same condition as yourself is a great boost not only for the mental aspect but the physical as well. We are a community of men and women of all races and religions from every country on the planet and the computer is our main means of communication.
So a lifestyle where you can be yourself, with decreasing limitations and acknowledging the fact you have ALS/MND can be had. But also knowing that you are not alone in this world of ours is probably the biggest factor and that help is only a keypad away. Enjoy life as best you can ( as I am ) and talk to people..talking to someone can alter your lifestyle for the better......for a while.