Muscle Spasms

When I visited Dr. Laza in April I didn't have any muscle spasms below my neck.  They were mostly confined to my face and neck.

Now both of my arms spasm almost constantly above the elbow, and I have noticed one on my back and one on my chest, although sporadic.  I have also felt a few in my legs, not constant, but worrisome.  I haven't noticed any muscle weakness yet.

My speech is steadily declining, although in a quiet setting like lunch with my former commonwealth boss Phil yesterday I can still carry on a conversation, although I often have to repeat what I was trying to say until the other person understands it.  Kim is getting pretty good at guessing what I was saying since she has to do so every day.  Haven't started exploring Text2Speech apps on my iPad yet, but should start soon.

Today I had my first monthly blood test at the lab for Riluzole.  They need to make sure my liver is handling it okay.  Should know in a few days.

Since I am thinking about traveling in September to Colorado with my brothers, I had to change the date of my next ALS Clinic, since it fell in the middle of the week that Forest has off.  Still not sure it is going to happen, but hopeful.  I haven't been to Colorado in more than 5 years, and I want to visit Crested Butte where I spent 2 summers as a teenager ('74 and '75 - slept in a covered wagon at Skyland Camp), do some hiking, horseback riding, and see my family.  Cousin Charlie Kirk and wife Helen are just south of Denver, and my Aunt Geneva and Uncle Frank and cousin Frank and his wife Margie are in Grand Junction.  Forest indicated his interest in driving over to the Tetons, also.  We'll see what we can do in a week's time if it happens.

I shared my bucket list with Kim last week, and she shared it with her friends at work.  One of them has a dirt track sprint car and offered to let me drive it.  Kim just booked me on a Gotham Cars fantasy drive in July where I get to take a Ferrari or Lamborghini 3 times around an indoor track.  Some of her work friends offered to take me fishing, also.  I am such a lucky man!

I received an amazing letter from my friend and Baker work colleague Mike from the Beaver office.  I was totally blown away by the awesome things he said about me.  Thank you, Mike - you made my week, and I am honored to have you as my friend!

Trying to connect with my friend Bob from MapQuest while he is in town this week and next week.  He lives in Iowa but is visiting and staying up at Mt. Gretna, which we have never visited.

Chuck called tonight and we discussed some yard work I would like to have him help me with next weekend when he visits as well as some fun things we can do while he is here.  I have 4 large evergreen bushes that were damaged this winter and need to be chopped down and bagged.  Would take me a full day by myself but with 2 people will go much faster.  We'll probably go kayaking on the Susquehanna, and may attend the annual WVU alumni picnic also.

This Friday is my birthday, and we're heading to State College for the weekend to celebrate with Kim's mom Jean and Kim's twin brother Kelly.  Looking forward to it and some boneless ribs from Clems!

I apologize to everyone who hasn't received a thank you card from me yet (and yes, that is everyone) for the ALS walk participants, donors, Eddie and Celeste for organizing the party last weekend, and to everyone that has sent cards and letters.  I finally have thank you cards and will get started on them this week.  No more procrastination or excuses for not getting them done.

Finally, my current work at PennDOT is starting to wind down.  Looking forward to taking on some new projects at the PA Turnpike, finishing the PennDOT proposal I am working on, and being back in the office more.  I have enjoyed the past 4 months at the DOT, but I miss seeing my friends at work, also.