ALS, disabled and other bloggers

When I started following certain blogs I knew for a certainty that the blog would eventually end. What I didn't know is how. Would the blogger become too debilitated to continue writing or die? Would the family do the final entry or would the blog become idle? I just didn't know. Reading the entry made by her daughters a few days ago I knew for a fact she had died, I seen her obituary. ALS had stripped away many of her abilities but not all. When I first found her blog and started reading it was because of the mention of DIGNITAS. She decided not to go that route because she would be forced to go too soon. She was losing small abilities here or there but the progression was slow at first. She learned to cope with each new loss with humor and grace. And then the motor neuron disease would accelerate before coming to a plateau. She adjusted with each loss learning new ways to continue living independently. Therapist and carers taught her ways to cope with each loss by learning new ways to do things.

It kind of reminds me of how I had to learn to do things differently after my back injury to prevent further injury. Now when I do things I'm no longer reminded of how far I've come or how I used to do things. I just do it. With therapy I knew my life would improve and I could be more active. But providing therapy for someone with Amyotrophic Lateral Sclerosis made no sense until I started reading blogs especially hers. One of goals of therapy for someone with ALS/MND is dignity and longer independent living. Each new thing taught allows the person to do activities of daily living (ADL) longer. Because of the uncertain nature of ALS the therapies is less aggressive and the goals aren't long term. Or the therapist evaluates the person for Orthotics such a braces or splints, or whatever they need at that time.. Sometimes therapist recommended adjustments to the home to allow longer independent living. PT, OT and ST along with the other members of the health care team are important for anyone facing ALS or any debilitating condition. With ALS the debilitation can be slow or very fast, so the person might be evaluated more often.

Her life didn't end with her diagnosis. She volunteered, painted and drove a car until several months ago. She prepared her own meals until a few months ago. She traveled. She created new memories with her children and grandchildren. The most important she did was give people hope that a shitty diagnosis didn't prematurely end her life. She continued to live, learn and get pleasure from the small things most of us take for granted. She is already missed by me and many others who followed her life with ALS/MND.