Hi! I've never blogged before but here I go.
I use Speechless Mary as my "name" because the first symptom of ALS or Lou Gehrig's disease for me was deterioration of my speech. Major bummer because I liked to talk, a lot. I have a form of ALS called bulbar-onset; more on that later. Now I am speechless in the conventional sense. However I e-mail, write notes, and now this blog. I can "talk" using a small Windows-based device that always me to enter what I want to say and then actually says it in a voice of my choice. Slower than normal speech but at least I can speak, sort of.
If you don't know about ALS a good basic description can be found at: http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_amyotrophiclateralsclerosis.htm#What%20is%20amyotrophic%20lateral%20sclerosis
Loss of speech was just the beginning. I have decreased strength on my left side resulting in very poor balance and a tendency to drop things from my left hand. Before I got a walker and now my fancy power wheelchair I "fell down and went boom" a few times. The last time was in January and I couldn't get myself back up for the first time. My hubby called 911 and several handsome firefighters came to help. The biggest embarrassment for me wasn't falling, it was that I was only wearing a nightgown! That made the whole situation very funny later.
Despite having ALS for almost five years I am trying to as much as I can for as long as I can. We have been to the coast of Maine, gone on an Inland Passage cruise in Alaska, and spent some time in New Mexico. I love to travel and will tell you more about that in the future.
Although being in a wheelchair requires more planning a lot of things are still doable. I even found a big perk. Seeing Stevie Wonder is on my "bucket list" and I never thought I would be able to see him but he is coming to Summerfest in Milwaukee (I live there) on opening day. http://www.summerfest.com/flash/ My hubby got the best seats anyone could get and they are for handicapped people. The seats are in the first row right next to the stage. The area is raised for a better view. We have to be escorted by security under the stage to get to our seats. How cool is that? I am a VIP!
That's it for now. Thinking and typing tire me out, especially the thinking part.
Mary
