So, I’m trying this new website, called Writing Streak in an effort to regularly get my word count going. It’s a pretty neat place. For starters, it lets you decide what days you are going to include word counts. I took Sundays off. I’m also starting off slowly, I only want a minimum of about 100 words per day. When I consistently do that, I can increase my minimum “bid.”
I’ve been off-line since my last Spinraza treatment. I’m sick. I have one of those horrid summer colds!
Yesterday, my niece was helping me turn, and she had her hand on my rib cage. She said, “Your breathing feels like a cat purring.”
The sad thing is… She’s RIGHT! I had been saying that I sound like I inhaled an aquarium, but I like her description better.
Earlier this week, I had my final loading dose of Spinraza. Now I will go back every four months…
Barring complications, that is…
I admit it, I am addicted to true crime TV shows and books. I think I like the fact that (on TV, anyhow) the slow accumulation of details leads to the truth of the matter. The police involved are usually portrayed as honorable characters with occasional flaws, who try to do their jobs well and serve justice.
Yes, it is kind of the opposite of another addiction, FILM NOIR, but I am a contradictory person.
One of my favorite real life characters is a retired detective from Colorado Springs. Joe Kenda has a quirky way of telling his stories, drawn from over 300 solved murders. He paints the victims and the perpetrators as three-dimensional human beings, but his sympathy lies with the victims and their families.
One of the things that I most admired in his mannerisms is the way he “gave notification” of death to the families. He didn’t try to “make it easy,” because there is no way to say that someone you loved is never coming back. He never said that it would be okay. He never said, “Don’t cry.”
Sometimes you just have to let people grieve and be angry!
Anyhow, about a year ago… Joe Kenda wrote a book. I knew that I would want to read it, and I finally got around to doing just that.
it is a real kick, his ghostwriter makes him sound EXACTLY like he comes across in the TV show. I thoroughly enjoyed learning more about his wife and kids. Kathy is probably the biggest hero in this book, but wives are kind of like that.
I’m guessing that a new season will be coming up in the fall. I will be watching and HE WILL FIND YOU!
Ralph W. Braun. Rise Above: How One Man’s Search for Mobility Helped the World Get Moving . The Braun Corporation. Kindle Edition. 2016.
I thoroughly enjoyed this book, but I’m a sucker for biographies about people who DO stuff. Two of my favorites, immediately to mind. The first is a two-volume tome about Winston Churchill’s mama, Jennie: The Life of Lady Randolph Churchill.
The second is MAVERICK: The Story of Robert Six and Continental Airlines. (I certainly miss the days when flying in an airplane was a TREAT!)
RISE ABOVE is a lot like MAVERICK. It chronicles the life of a dreamer who was in on the ground floor of a new kind of business. Ralph Braun was in the forefront of accessible vans, and I think him for that! He is also a businessman who learned from his mistakes.
I learned a lot from all three of these biographies. I highly recommend them.
My Spinraza Loading Dose III is in the rearview mirror. Yes, it went well, again. While I don’t think I will ever consider a lumbar puncture to be ROUTINE, it was pretty much a routine procedure.
So far, I haven’t had any ill effects. Although today, my lower back feels “tired,” and my right leg feels like it woke up from being numb.
It isn’t pain, and I can live with that!
The progression of Spinal Muscular Atrophy is stopped, or at least slowed. (That seems to be what the literature shows, anyhow.) On Thursday morning, I was able to open and close my left hand. I haven’t been able to do that in… I don’t know how long. While I haven’t mastered that superpower in my right hand, my index finger can grip a little bit.
Saturday evening and today, I’m not quite as strong with either of those. But they are still better than they used to be.
Where do I go from here? My final loading dose is towards the end of the month. I will continue to rejoice in the life I have and any small gains that this medicine has brought me.
By: Arthur Conan Doyle
This was another L-O-N-G audiobook, 58 hours to be specific. It didn’t feel that long, though. It is a collection of short stories and novellas about the great detective. It looks like it contains most, if not all of of Sherlock Holmes works from the Victorian age into the 1920s. Most of them were like familiar old friends that I haven’t spent time with in a while. A few were more like new acquaintances, a couple of these felt kind of awkward.
There were several stories where Sherlock Holmes himself was the narrator. Nary a Dr. Watson in sight!
By the time I had finished the entire 58 hours, I was kind of tired of living in the Victorian/Edwardian mindset. Well I read it again? ABSOLUTELY yes. I put it on my cell phone for a while I am waiting in doctors’ offices…
The second loading dose of Spinraza is in the rearview mirror and the third dose is in front of me.
It went smoothly again. I don’t know that I will ever think of transforaminal lumbar punctures as ROUTINE, but I might be able to get comfortable with them. It’s a good thing… Spinraza isn’t a magic bullet. It’s not “one and done.” It’s a little bit more like insulin is to the diabetic.
I can live with that!
I do think I am seeing benefits. Granted, I’m not benchpressing anything yet. I have not been climbing ladders or stairs.
Things are much more subtle. I had WAY more than 50 years of muscle disintegration. It’s a bit much to expect instant superhero.
My breathing is better. I think my thumbs have fractionally more strength. It’s possible that my digestive tract is becoming more manageable.
All wins, in my book!
I’m tracing the issues as we speak. Let me know if you see anything weird…