Independence and ALS/MND

Disability and independence go hand in hand. They are the milestones of ones life and the indicators of how we are feeling. To be independent at a time when you are usually in good health is the yardstick we use to measure the welfare of our bodies.
But when that yardstick has been broken with a disability like ALS/MND then we as individuals have to reconsider our independence in the wake of ever growing pressure from the world around us. To come to realize that we, as people with a condition that can cause stress, anxiety, inability to do most things, frustration, lack of sleep, cry and laugh and a whole host of other every day actions then we must take the upper hand and declare to the world that we can act for ourselves and become independent in our own rights. It means that we have to restructure the way that we live and think and
off course this action involves not only yourself but those around you, family, friends, caregivers. To be involved with someone who has ALS/MND, depending on the degree of disability will at times take more than just a few minutes of your time and your own ability to react, one to one with the person concerned.
And it is quite often that closeness, that feeling of satisfaction and knowing that the person with the disability is trying his or her best to not only help you but to help themselves in a situation that is not of their asking.
For me to be independent means that I can still do most things for myself, like having a bath or spreading a sandwich, use my laptop for contact, dress myself ( pulling on socks can take a while ), make a cup of coffee and get the milk from the fridge using my walking frame ( What a wonderful asset ) Even stand against the kitchen bench and wash the dishes. That’s fun..
But that independence is slowly being eroded away and I will accept help as and when it is needed. Having said all that the one action I really enjoy is getting out in my power chair. BOY….the feeling of freedom and independence is a real boost to ones confidence. My ability to go where I want to go, within reason, to meet people like myself who are also out in their chairs, to get to go out with your spouse ( in my case she is riding a bike ) and enjoy the day. To go into town or visit the local shops and to be able to buy an ice cream, these are all actions that indicate to people your independence. A visual indication if you like that you are still out there, still enjoying life as much as you can . Still meeting the world head on and knowing that there are others like you doing the same.
And I would like to say to those others.. Keep on keeping on with what you are doing and show people that those with a disability like ALS/MND can be a part of the community, can take responsibility for their own actions and most of all be proud of what they are doing..

Look for your own inner strength and bring it out into the world…