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.

Hershey ALS Walk Day

Thank you to all of my friends, family, and coworkers who made it out on this beautiful morning to walk with us in support of the Hershey ALS Walk for the Cure!  And thanks to everyone who prayed for us and those who contributed financially to support the ALS Philadelphia Chapter! 

• Jeff Bergsten
• Esther Betancourt and Dave Fekete
• Dex Bouasanouvong and Laura
• Lisa Clark, Liza Clark, and Galen Dorman
• Lida Derk and Ann Weaver
• Andrea, Bob, and Erik Hanson
• Jean Harris
• Kim and Jim Knudson
• Eric Orndorff
• Kathir Ramalingam
• Charity and Steve Rosenberry
• Tom Sloniger and Tracy Sayers
• Danielle Spriggs
• Todd Trautz

We completed the 2-mile walk in about an hour, then many of the walkers joined us for lunch at the Subway.  It was a very nice morning for Kim, Jean, and I.  I thank you from the bottom of my heart.

 

 

One week until the ALS Walk for the Cure!

Thanks to everyone who has signed up to walk with us.

The walk begins at the Neurology Center at 30 Hope  Drive, Hershey.  Get off 322 at the Hershey Medical Center entrance.  You have to drive about 3-4 miles to get to the East Campus, passing the Hershey Med Center main building, passing the Ronald McDonald House, and the Hershey School.  The right lane road has a right turn only lane, so stay to the left.  Turn right onto Cherry Drive and right again onto Hope Drive.  There is lots of parking behind the building.  Drive past the building, turn left, and turn left again to park.

If you have not done so already and plan to walk, please register on the Team JFK page.  You have to click through the release agreement and you will need to sign in the day of the event, so preregistration is important.

The walk starts at 10AM, with registration from 9-10AM. This year they are taking pictures after the walk, so please join us for a team picture after the walk.  We hope that you will join us at Subway for lunch afterward, also.  It is on the right as you drive back toward the main entrance of the Hershey Med Center.  Kim and I are buying if you can join us.

They indicated that the buildings will not be open this year, so they will set up porta potties for the event.  The walk will go on regardless of the weather.  If it is sunny, you should bring a hat and sunscreen as we will be in the sun from about 9:30 until close to noon.

We will probably finish the walk around noon, and Kim and I would like to take everyone to lunch afterward if you are available, so please plan to join us.  More details to follow soon.

Grateful!

I have a lot to be thankful for!  I have felt really good since my appointment at the Hershey ALS Clinic on Wednesday morning.  I cut down my caffeinated coffee to one each morning, but no headache.  I feel less stressed, stronger, and am definitely less worried.  I have had fewer gagging/choking events the past few days, and I am very grateful to have some relief!  I don't know if the Riluzole can act that quickly, if I am experiencing a placebo effect, all of your prayers are being answered, or if my body has finally relaxed a little bit, but regardless of the source/sources, I am very relieved to not be suffering the same effects! 

Thank you for your continued prayers!

We have already exceeded our team goal for the ALS Walk for the Cure on June 7 at the Hershey Med Center!  Three people have signed up to walk with Kim and me.  A sincere thanks to everyone that has donated or signed up to walk with us!  The Team JFK page is open and accepting new walkers and donations.  Kim and I will match the total donations up to $1000 total to thank you for your generosity.

Reading about the Brainstorm Clinical Trial in Boston, where they will be testing the safety and efficacy of a stem cell therapy that has had excellent results outside of the U.S. for a product called NurOwn, based on harvesting the individual's mesenchymal stem cells, treating them, and then reintroducing them into the individual's body again.  There is another stem cell research project in Atlanta, called Neuralstem.  Since ALS is a brain/spinal column/motor neuron disease, it makes sense to me that stem cells may hold promise for a future therapy or a cure.

Enjoying the long weekend so far!  I got up at 2:45AM to try to see the meteor shower, but it was completely overcast.  Oh, well!  Hope that some of you were able to see it.  They were predicting between 500-1000 meteors/hour, which would be phenomenal.

Doing a little bit of work, interspersed with reading my book, sitting and holding Kim's hand, talking to Jean.  I brought Jean some of my purple Columbine, which has been spreading at our house over the past 10 years.  She planted them this morning - I hope that they survive.  They are a beautiful color!

I learned that my Uncle Frank in Grand Junction, CO fell this week and may have had a minor stroke.  He is at the VA hospital for now and my Aunt Geneva is living alone in their apartment.  Our prayers for both of them and I hope that Frank recovers quickly, regains his strength, and gets home soon.

For our traditional Memorial Day weekend cookout tonight we are having hamburgers, hot dogs and Kim's famous hot dog sauce, Pasta salad, baked beans, and deviled eggs.  YUM!  I'll cook them on the grill shortly.  Have a nice bottle of red wine I am going to open in a minute to let it breathe before Kelly and his dog Liam come over.

I hope that all of you have an awesome weekend, spend quality time with your family and friends, and make some good memories.

Hershey ALS Walk, Saturday, June 7

Dear friends,

If you are interested in joining me Saturday morning, June 7, at the Hershey Med Center East Campus for the Walk for ALS, please join Team JFK at the following website:

Team JFK

The walk is about 2 miles on gently rolling paved walkways and sidewalks on the Hershey Med Center East Campus and the fundraising goes toward ALS research and supports the Philadelphia ALS chapter, which the Hershey ALS Clinic is part of.

If you can't walk with me but would like to sponsor the Team, you can contribute on the page also.

Registration starts at 9AM, and the walk starts at 10AM.  It usually takes about 2 hours as each team is photographed not too far from the beginning of the walk.

Thank you for your support!
Jim