Catching Up!

Wow, time flies when you are having fun!  Sorry it has been so long since I last updated my blog.  It has been a busy 2 weeks...  Here's a summary.

FUN

We had a wonderful time with the Knudson Clan in Newland, NC from 8/8-8/13.  You can see the pictures from our 5 days together on my Facebook Page under the Knudson Family Reunion 2014 Album.  Thanks to Allyson Cooksey for allowing us to use her Cooksey Mountain House!  I'll have a separate post just about the trip.

We did some planning for our September Knudson Men trip while we were together and have a basic itinerary for our road trip across Colorado:

• Thursday 9/4 - Dad and I arrive in Denver around 4:30PM, hope to have dinner with dad's Cousin Charlie and wife Helen.  Chuck gets in around midnight.
• Friday 9/5 - Meet up with Chuck and have breakfast and spend the morning with Charlie and Helen.  May try to visit the family cemetery and have our picture taken in front of Knudson Hall on the Denver University campus, named for Grandpa Clarence.  We'll leave Friday afternoon and drive to Grand Junction.
• Saturday 9/6 - Visit Uncle Frank and Aunt Geneva Cooley and cousin Frank and wife Margie.
• Sunday 9/7 - Visit Uncle Frank and Aunt Geneva Cooley and cousin Frank and wife Margie.  Drive to Crested Butte, CO in the afternoon.
• Monday 9/8 - Explore Crested Butte.
• Tuesday 9/9 - Explore Crested Butte.  Leave in the afternoon to drive to Granby.
• Wednesday 9/10 - Enter Rocky Mountain National Park from the back entrance and drive the Trail Ridge Road to Estes Park for the night.
• Thursday 9/11 - Explore RMNP.
• Friday 9/12 - Drive back to Denver.  Drop Chuck off at the airport.  Visit with Charlie and Helen.
• Saturday 9/13 - Dad and I fly home.

We went to State College this past weekend to see Jean and Kelly.  Didn't do much, relaxed and visited.  We probably won't get back up there until after my Knudson Men vacation. 

Bucket List - We (Mel H and I) rescheduled our tandem skydiving to this coming Saturday morning.  Hope to have better weather than 2 weekends ago when they called and cancelled.  YIPPEE!  Can't wait to freefall and then float down to the ground - a dream come true!  I'll have a video to show that I actually did it. :)

MEDICAL

Went back to work on Thursday.  Friday I had my second acupuncture treatment, and it seems to be helping some.  The muscle spasms in my arms don't seem to be as constant and are of lesser strength.  That is good, because the intense spasming will wear out my motor neurons faster.  I go back again for my third treatment tomorrow (Tuesday) and will continue until I can't derive any more benefit. 

I am seeing a Chinese medical doctor who specializes in acupuncture and has offices on both the east shore and west shore.  She has suggested that I try some Chinese herbs also, but I need to consult with my doctor first.  Some of the needles hurt, most don't.  Dr. Williams figures out the placement, then taps the needle in.  Usually that is the worst, but sometimes they hurt longer.  She put four in my face/nose to try to improve my chronic sinusitis.  It does seem to help someWhen she twirls the needles after 15-30 minutes that occasionally hurts.  Friday I was there for over 90 minutes over my lunch hour and late to my afternoon meeting at the PA Turnpike Commission.

I went to the lab today to have blood drawn for the third time since starting on Rilutek/Riluzole.  I started taking glycopyrrolate medicine last night because my salivation has increased over the past month, one of the ALS symptoms.  Side effects include double vision and dizziness, so I am starting with a low dose to see how my body tolerates it and if I have any issues.

While in Newland, NC, I found out about the ALS Ice Bucket mania from my sister Amy.  It is amazing how much money has been raised so quickly, all of it going for ALS research!  Several of my friends have mentioned me (Andrea M.) or done it my name (Amy B., Jon C.).  T HA N K   Y O U! 

Amy challenged me, so I went to Lowes and bought a 5-gallon bucket tonight.  I will make another large donation and will have Kim videotape me when I dump the icy water over my head this week.  My friend Karen M. is participating in a Walk to Defeat ALS in D.C. 

If you are reading this, please accept my challenge to participate in the ALS Ice Bucket Challenge to raise awareness and funding for ALS research to defeat this terrible disease and help find treatments and a cure.

The Department of Labor and Industry Office of Vocational Rehabilitation is providing 5 hours of consulting to help with my speech issues.  It is very challenging to be in the IT Consulting business and be successful as a Project Manager when you can't communicate verbally.  I am meeting with Schanzenbach next Wednesday to start exploring assistive technologies.

WORK

Just two work items.  The City of Charleston asked for a new PM for their stormwater project because they can't understand what I am saying when I talk on the phone.  I don't blame them at all and respect their decision.  I have a bad case of mush mouth.  It has been a difficult project and I will be glad to pass the stress on to another Baker PM. 

Some good news on the proposal I worked on last month, we were selected for negotiations, and I am the designated PM for the 18 month initiative.

Also working on my long term disability claim package for Northwestern Mutual.  They ask for a lot of documentation, and I need to get documents to all of the doctors who I worked with (3) in the past few months.  Paul advised that I would be better off filing the paperwork now whether I accept any disability payments any time soon or not since NMFN may pay my future insurance premiums.

Received a package from Gannett Fleming last week offering a one-time lump sum payout on my pension, so we will consolidate and roll that money over to NMFN.  Will make it easier to have fewer but larger retirement income accounts for Kim and me and we'll have more control over the funding stream instead of the monthly payment from the pension plan.

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.