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.

Finally!

Kim told me to not talk so much about work...  But I finally had a major breakthrough with the PennDOT HPMS deliverables today.  I finalized the state road mileage with the PennDOT staff today so they can put together the mileage certification letter for the PennDOT Secretary to sign, which has to be sent to FHWA on Monday.   YEAH!  That's all I've worked on for the last 2 weeks.  It required a number of 10 hour days and it took a lot of focus and effort to get it just right.  Down to the wire, but DONE!  A success worthy of celebrating!  The 2 million data records are due in 2 weeks time, and we will start reviewing the data and the updated HPMS Console application next week.

Team JFK for the ALS Walk for a Cure is shaping up to be a large contingent and the donations are still coming in.  Pray that we have good weather!  Thank you to the 12 people signed up to walk with Kim and me next Saturday and for the 17 people who have donated!!!  Kim and I greatly appreciate the support that you have provided to us and the Philadelphia ALS Chapter! 

We're planning a Knudson Family Reunion in August.  Choices are Florida and North Carolina.   I'm hoping for the mountains of North Carolina.  Florida would be really hot in August!  May try to get together with both of my brothers in September in Colorado if we can work it out, also.

Thank you God for giving me the strength, persistence, and intelligence to be able to get the HPMS mileage completed today for PennDOT!  It feels good!

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 Clinic and Good News!

Kim and I spent an exhausting morning at the Hershey ALS Clinic today, but came away with some good news.  We arrived at 8AM and finished about 12:30.  We were both starving because we didn't eat anything before we left home.  We had a nice lunch at Panera's in Hershey before driving back home and then going to work.

 

The clinic is designed as a One Stop Shop.  We saw the following:

• Respiration Therapist
• Head Nurse
• Pastoral Nurse
• Research Coordinator
• Speech Pathologist
• Nutritionist
• Nurse Counselor
• Phlebotomist (Blood Draw)
• Physical Therapist
• Dr. Simmons

The only person we didn't see who is usually at the Clinic was the Social Worker.  Her daughter graduated from kindergarten this morning, but she had called me last week to talk.

We received information about text to speech programs for the iPad, which I will start exploring.

The Hershey ALS Clinic staff are a great team!  We didn't sit for very long before the next person came in to talk to us, and Tammy and Sue were in multiple times to see if we were okay and needed or wanted anything.  Everyone was very sympathetic, kind, caring, and professional.  They talked to both of us and made sure that all of our questions were answered.

When I asked how many ALS patients they served, they indicated about 200, covering the area between Pittsburgh and Philadelphia where there are other ALS Centers.  That is a lot!  The average number of new ALS cases in the United States each year is 5000.

They talked to us about some of the ALS research.  The Boston BrainStorm Stem Cell research project just got off the ground.  Dr. Simmons is involved in a lot of research and is world-renowned.  His staff can't say enough good things about him!

 

GOOD NEWS!

First and most important, my lung function has not diminished in any way so far.  I am at the normal/average range for a man of my age and weight.  That is one of the most important things with ALS.

 

Second, while my swallowing has been impacted, it is still very good, and they have no concerns at this time, just make sure not to choke or aspirate food or liquids into my lungs.

 

Third, they think the Lorazepam will help with my morning gagging/choking.  I haven't filled the prescription yet but will do so.  Just since we went to the Clinic this morning my throat feels more relaxed.  I think part of it has been panic/stress.

 

Fourth, the doctor says I can drink one cup of caffeinated coffee every day and can have an alcoholic beverage also, contradicting the information in the Riluzole medication document.  I will have a monthly blood test to monitor how my liver is doing.  Let me tell you, Kim is VERY relieved to hear this news. :)

 

Fifth, they want me to increase my calorie intake to 2700-3200 calories per day to maintain my weight.  I get to eat more and not worry too much about it.  My internist has been trying to get me to lose weight for several years.

 

They will see us again on September 10 at the next clinic, and we have staff phone numbers and emails if we need to contact them in the meantime.

 

Kim and I both were nervous this morning about what we might find out, but both felt relieved to gain a better standing of the disease progression and some of the good news above also.

 

My friends and extended family members have been very supportive and sent cards, emails, and messages of encouragement.  Thank you, Loraine, for your heartfelt email.  My good friend and former manager Connie G stopped by at PennDOT this afternoon to visit and give me a hug and my good friend Robert M sent me a very nice email from Abu Dhabi.  All of you have certainly lifted our spirits during these difficult days and I feel the love!

A big THANK YOU to everyone that has signed up to walk with Kim and I on June 7 for the Hershey ALS Walk for the Cure and to everyone that has sponsored us with their financial support!  Together, we can find a cure!

 

Finally, my high school friend Linda V sent me a link to Team Gleason's Blog and Facebook page, which I have been exploring.  It is difficult for Kim and I to think about this possible future, but Steve Gleason is very inspiring.  Steve is a former professional football player for the New Orleans Saints, who was diagnosed with ALS several years ago and fights every day to survive and live life to the fullest.  He is much younger than I am, having just turned 37, with a wife and several young children.  Steve is in the hospital having a tracheotomy, and we send our prayers to him and his family.

 

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

Progress

Another good day today!  Warm and sunny outside.

 

Got lots done at PennDOT – debugged and fixed some queries in the backend, gave the developer some initial assignments, added several of the new traffic data items, compiled the new validation stored procedures, and copied 1.6M records to the master data table so that we can test the application this week with this year’s data.  I have about 50 data records to manually compare so I can determine why their mileages are different than the SAS mileage report we created as a source for comparison.  Not too bad considering there are more than 100,000 source records.  BTW, the backend rewrite started the second week of April, so we have accomplished a lot in six weeks!

 

Left PennDOT a little early this afternoon to visit the Baker office.  Had the chance to see my manager Dave F, Eric O, Bob H, and Danielle S, my good friend Grant E from the City of Philadelphia, and Jeff T, who took over the City project from me since I was going to be onsite and fulltime at PennDOT for a few months.  Jeff gave me a demo of the project progress and Bud L and the technical team have been doing a great job!

 

Another busy week.  Will spend some hours the next few nights this week reviewing some documents and rewriting some of the 100+ validation queries I wrote last year for the HPMS project as part of the initial build.  We simplified the PennDOT HPMS data model this year, so I can clean up some of the stored procedure queries so that they run faster.  We are trying to wrap up the PennShare (PennDOT ArcGIS Online) project and are working on finalizing the project whitepaper this week.  Thursday night I have the Township Sewer Advisory Board meeting, which I chair.  I have learned a lot about poop the last few years!

 

Looking forward to a long weekend in State College with my mother-in-law and brother-in-law.  Kim’s family has been through a lot in the past two years! L  Haven’t heard if Kim’s older brother and his wife will be there, but it would be nice to see them also.

 

Going to close now before this one gets too long.  I wanted to share a very nice and meaningful verse my good friend Bruce S sent me a week ago.  I have it posted at my desk at PennDOT as well as some other spiritual verses my friend Stuard G gave me also that I read every morning.

 

Thanks, Bruce!

 

GOD's PROMISE

 

God has not promised

Skies always blue,

Flower-strewn pathways

All our lives through;

God has not promised

Sun without rain

Joy without sorrow,

Peace without pain.

 

But God has promised

Strength for the day,

Rest for the labor,

Light for the way,

Grace for the trials,

Help from above,

Unfailing sympathy,

Undying love.

 

 

 

 

 

Beautiful Day!

I thought this would be a shorter posting, but it got long, anyway.

I got up early to read the Sunday paper in the sunroom and enjoyed watching the squirrels and male and female cardinal outside the windows flying back and forth from my bushes to the neighbors' trees!  It was a chilly morning, but sunny.

Kim spraywashed the deck and patio this afternoon while I filed bills, financial and insurance statements in the office filing cabinet upstairs and started cleaning up the basement and going through a lot of boxes of my accumulated "Stuff" (thanks to George Carlin for putting a smile on my face).  Actually, Kim has quite a few boxes of stuff down there too, but that will be her burden.

As I shared with you previously, I am a packrat.  I have boxes full of college course notes in the basement, two boxes of bulk photos I haven't done anything with for 20-30 years, and a whole lot more.  I probably have one box from each company I worked at - a total of 7 (9 if you count my 3 different jobs at the Commonwealth of PA).  I made some good progress this afternoon, but lots more to do. 

I have a whole corner full of shelves of "garage sale stuff" that I'm just going to set out by the curb over several Friday mornings.  There are usually a couple of guys in pickups that drive around before the garbage and recycling trucks come, and I'm sure they will take everything I put out.  I have several boxes of books to drop off for next year's annual used book sale at PSU - giving some back for resale that I bought there in the first place.  I believe in recycling - my wife would probably call me a recycling fanatic - she usually asks before she throws something in the garbage to go to the landfill.

It was easier than I thought to part with my old history - I will take some of my old computer books to work to see if anyone wants them and I'll take some of my old travel guidebooks, railroad stuff, and maps to PennDOT to see if anyone will adopt them.  I have one large bag full of papers to go into the curbside recycling bin next Friday.

I was going to tackle the winter damaged bushes and shrubs this afternoon also, but held off.  Kim and I decided we will probably have to cut them down and replant something else - they are just too damaged to recover.  I noticed today that my crepe myrtle hasn't shown any life this spring either.  I need to throw some Holly Tone around the base to shock it this year, apparently.  I didn't have to the last two springs, but it's still dormant after the harsh winter cold and snow.  The smell of the creeping phlox is wonderful, and the clematis is climbing and will bloom next month.  I got the grass cut late afternoon and felt good afterward. 

With the deck and patio cleaned and the grass cut, the back of the house looks great.  Sides still need some work, and I have some other dead bushes out front that will need to be dug up and something else replanted. 

We're going to get an estimate this week for a new roof - had a leaky spot again this winter that was wet after spring rains also.  The house is only thirteen years old, but it's time.  Took three subcontractors to finish it when were building it - not a quality job.  Also have a continuing leak under the bay window in the front of the house I want to get permanently fixed so that the basement will finally be dry - I am so tired of having to clean up after every hard rain!  We've tried to patch it several times with no success.  We are going to have to dig it all up, take off some of the stone work, and waterproof it properly so that it doesn't leak in around the sill and damage the drywall in the garage - I've had Lamar repair that 2 times already and it needs it again.

I made the time this afternoon/evening to send a personal message back to all of the friends who reached out to me this past week.  I was truly touched and blessed by the outpouring of emotional and spiritual support, friendship, hope, energy, thoughts and prayers, encouragement, and love.  Thank you to each of you that touched me this week.  I return your blessings and love to each of you also.

A little work to do yet tonight so that I am prepared tomorrow morning.  The developer we have on the PennDOT project starts his second development sprint tomorrow and I have to write 8 more validation scripts for him so that he has everything he needs from me and I don't hold up his progress.  I'll write and compile the skeleton for each of the new Oracle Stored Procedures so that he can program against them and call them.  I can modify them to work properly when I have more time later this week.  We only have him for 2 weeks, so every day counts!  I hope to finish validating the state highway mileage tomorrow, then will populate the production table the HPMS Console application uses with the 2M records so that the business analyst and developer can start testing with this year's data.

Art Stephens, the State CIO (my former boss) told his staff in 2005 that we should tell those who are important to us what they mean to us on a daily basis, so I send my love to each one of you and hope that you enjoy a good night's sleep, a wonderful day tomorrow, and that you don't take any of it for granted, as I am learning to do.  

Thanks for reading!

Giving up my Sins

Maybe the title should be "Guilty Pleasures" instead of Sins.

Week one down living with diagnosed ALS.  I received my new prescriptions last week - Riluzole, the only ALS drug approved by the FDA, and Glycopyrrolate, which is to help with the excess saliva that results from the disease.  Nice, huh?

This posting is going to show my human, petty side.

As I suspected, the Riluzole drug information indicates no alcohol consumption.  I have to have a blood test every month to see how my liver is tolerating it for the first 6 months.

No alcohol is a tough blow for a wine collector.  I normally have one beer, mixed drink, or glass of wine with dinner every night.  Supposed to be good for you, right?  Everything in moderation.  I have cellared about a dozen bottles of wine for 10+ years, waiting for a celebratory event with friends to open them up and enjoy them.  I probably have about 120 bottles all told, 10 cases of wine in my two wine refrigerators.

I have had a bottle of Yuengling Porter with dinner most of this week and had 2 glasses of my favorite mixed drink last night - black spiced rum with club soda.  The club soda adds fizz but without sweetening the rum and allowing the delicate flavorings of the spiced rum to come through.  I think we may go to Carrabbas for dinner tonight so that I can have my last Blackberry Sangria - so good!

I will stop drinking any alcohol Tuesday night before I go to my first ALS Clinic meeting at Hershey on Wednesday morning, and will take my first dose of Riluzole Wednesday morning. 

To add insult to injury, I can't have caffeine anymore either.  Caffeine tends to cause too much Riluzole to build up in the body. 

I admit to being a coffee snob, having had a Keurig K-cup machine at home and at work for more than a dozen years.  I can't drink the stuff they serve at work - I tried it once and it was just slightly flavored brown water.  I normally drink 2 cups of caffeinated coffee every weekday morning and 3-4 on weekends.  Several years ago Kim bought me a T-shirt that says "Instant Human - Just add coffee!", which is very appropriate for me.  Kim will tell you that I get grouchy when I don't have my caffeine - that will be an adjustment for both of us.  I also love chocolate, which has caffeine.  I'll have to ask the doctor about chocolate this week.  I can probably tolerate the switch to decaf coffee, but life without chocolate is too much to bear.

So, having surrendered two of my guilty pleasures to ALS, that only leaves two - bacon and sex.  I told Kim to be forewarned. ;-)  Two weekends ago we drove up to Pitman, PA, an hour and 40 minutes each way,  to buy fifteen pounds of smoked bacon that we really like - 10 pounds for us and 5 pounds for my mother-in-law, Jean.

Looking forward to a good day working around the house.  Hoping it gets warm enough to do some work outside - my bushes and shrubs are leaning sideways after the harsh winter and need to be tied up and staked to pull them back upright.  I can't get the lawn mower past them easily at this point.

P.S. - I realized after I posted this morning that many years I would be at Tom Leachman and Laura Hillenbrand's house near Cooper's Rock outside Morgantown WV this day sharing good food, drinks, and stories with my former roommate Tom, his sisters, Laura, their dogs, and many of my WVU/Morgantown friends from my 6 years in Morgantown.  I am thinking of all of you and hoping you had great time and weather this year as you celebrate Tom's birthday.  I hope that I can be there next year to share it with you.

Completely Overwhelmed!

WOW!  I never expected such an outpouring of love and concern from everyone.  I usually monitor my personal email at work, but I had to close it up today because I was so overwhelmed by all of the messages of support, concern, and hope from all of you.  It wasn't just my oversensitized emotions that made me verklempt today, it was true amazement and a feeling of love. warmth, and friendship from all over the world.  Several of you shared your personal stories with me today also - thank you, it really helped me, especially Susan.

I appreciate everyone's kindness and I share your love, friendship, and caring back with each of you tenfold also!  You really made my day, month, and year!

It is overwhelming some moments of every day to have a diagnosis of ALS and know that the end of my life is much closer than I ever imagined, but I rarely have the time to sit and ponder.  I have lots of time to live, love, laugh, and make lots of good memories with everyone.  Kim and I plan to do a fair amount of traveling in the next 2 years to see many of you and my widespread family across the U.S. and several continents.  We're working on a family reunion later this summer and we plan to start visiting family and friends in the coming weeks.

It was a good day at work.  I made some good progress on fixing my complicated program, although it was slow and painful and occasionally frustrating.  I have 4 of the 6 road type state mileages already approved by PennDOT, but the state highways are the ones I have been struggling with and there are about 100K segments that all have to be checked in terms of mileage calculations.  I finished up a little after 5, left the program to run so I can check in the morning to see what remains, and I beat the rain storms home.  Glad that I got my grass cut earlier this week - would have been 8 inches today, no doubt.

I am working on writing some of the new HPMS data validations tonight and I have to update the City of Charleston weekly project status report.  Once I have that done I can go to bed, play a few hands of WSOP Texas Hold Em on my iPad and read my book.

I told my longtime friend Frank DeSendi , the PennDOT GIS manager, about my condition this morning, and he was genuinely at a loss for words.  It is still very difficult and emotional for me to tell anyone, and I usually end up crying.  It's not that I am not strong willed, but ALS has made me an emotional hot  mess.  I can just barely speak in a high pitched voice when that happens.  The doctor indicated I could take some Valium to help with that affect, but so far I have tried to function without it.  I thought it would get easier to tell people with time, but so far it hasn't.

FYI, PennDOT is my home away from home - I have spent almost 10 years of my career doing work for them, with a good portion of that time onsite.  There are about 10 people on the floor working on project from GeoDecisions, where I spent 5 years of my career prior to joining the state, and 2 of my close friends and colleagues from MapQuest in Lancaster also.  Many of the PennDOT staff on the floor I have known for more than 10 years and I consider them part of my extended family.  It is a pleasure and a privilege to be back and helping them with HPMS submission again this year!  I love my work and my PennDOT family!

I haven't told all of my clients and work colleagues about my condition yet but am slowly getting the word out.  I don't want their pity, just their understanding that my communication and physical condition will get worse instead of better.  Fortunately, my weakness is limited to above the shoulders at this time, but the doctor indicated that the EMG revealed some fasciculations in my right arm and leg, although minimal at this time.  He indicated I would almost certainly end up in a wheelchair at some point.  I'll tell you about the EMG test some other time...

I am still a talented project manager and client contact, and I have a lot to offer in the coming years for as long as I am able to work.  While ALS affects the brain stem and motor neurons, causing muscle weakness, it doesn't affect the brain's cognitive capabilities, thankfully.

I plan to talk to the Hershey staff next week about what text to speech communications apps for the iPad they have found to be the most user-friendly.  I will start planning knowledge transfer to other Baker staff in Harrisburg so that I can share my knowledge and mentor some of our staff on what I know and so that they can help me with some of my workload and assist our clients when I am no longer capable.

I have decided to put together a team for the Hershey ALS Walk for the Cure on June 7 and I hope to have some of my friends join me for the 2 mile walk around the Hershey Med Center campus to help raise money for the ALS Association.  If you are interested in joining me, please let me know.  I participated 2 years ago with team N1 (Star Trek "Number One") after my friend Don Farrell from DEP was diagnosed.

A plug for my PA Turnpike colleague, Brian Hart.  He left for Alaska today after 3 years of training with 4 of his friends to climb Denali over the next 3 weeks.  He has a blog that I plan to monitor to see their progression and ascent.  Be safe, Brian!  For more information, tune into: www.denaligroup.blogspot.com 

Thanks for reading, and thanks for your messages!  I am deeply humbled.  I'll try to keep my posts a little shorter. :)

Your friend,
Jim

Work/Life Balance

I am still crazy at work with multiple PennDOT and PA Turnpike projects in addition to a big project with the City of Charleston, WV.  I worked late tonight onsite at PennDOT, leaving at 6:15. 

My inbox is as full as it ever has been in my current job, and I really struggle to keep up with it.  Hard to believe that for most of my 8 years at the commonwealth I tried to keep the number of emails in my inbox to 100 or less every day.  How did I do that?

The work onsite at PennDOT has been quite rewarding, although very challenging.  I am rewriting the entire backend for the Oracle Highway Performance Monitoring System (HPMS).  I get to use my technical database skills and writing Oracle Stored Procedures to create the 2M record HPMS data set that has to be reported to the FHWA in June. 

I made some major changes to the program yesterday because I realized I wasn't splitting the records properly so that I would get the correct mileage numbers for the Urban Areas.  That set me back a few days and I inadvertently caused some errors that I am now trying to fix so that I can give the PennDOT management team the updated road mileages for the State Mileage Certification Letter that is due June 1.  All of the data that we deliver 2 weeks later has to be within 1 mile of that number, which is not an easy thing to accomplish.  Unfortunately I was out of the office at the Turnpike today twice for Asset Management meetings, which took away from my ability to get the programs debugged.  That's where I start again tomorrow morning.

Kim and I had planned to work outside around the house this weekend, but sounds like we're going to get lots of rain.  May be time to clean up the basement - it is a mess, and I need to start going through things and pitching them so that Kim won't have to some day.  That sounds a bit morbid, but I am a packrat, and have boxes of college books and notes downstairs plus many hundreds of books from the authors I read and collect.  FYI, I just added 60+ new books last weekend at the Penn State AAUW Used Book Sale. :)  I'm getting ready to turn in for the night and (re)read The Talisman by King/Straub.

I may lose my ability to speak in the next year if the progress continues at the same pace and will be forced to depend on a computer to help me with verbal communication.  The nurse at Hershey assured me that "There is an app for that!"  My ability to speak clearly comes and goes - today was a pretty good day altogether for speaking, but my capabilities are definitely declining due to my partially paralyzed tongue, vocal cords, and face.

My family and friends have been wonderful and amazing.  The unfortunate thing with my disease, Bulbar ALS, is that it affects your emotional state quite severely, so I am often so moved by the smallest kindness that I am moved to tears and become verklempt (thanks Mike Myers).  Same with sappy TV programs.  I really struggle to communicate.  I told PennDOT today of my situation and they were very kind and compassionate. 

My dear friends and family, thank you for your prayers, emotional and physical support over the past months and especially over the past few weeks as I have struggled to communicate and arrive at a diagnosis. 

I have received a lot of spiritual guidance and support from many people.  Kim and I have not been active in church, but I am still a believer.  I think it will be helpful to find a church and become a more spiritual person in the days and months ahead.  Lord knows I need a lot of help to be a better husband, brother, son, coworker and friend.

Please forgive my ramblings, I'm tired.   But it was a good day, and I know that there is a lot of work for me at PennDOT and the PTC in the next 12-24 months if I am capable of working that long.

We moved my meeting with the Hershey team to next week.  I thought it was just with the speech pathologist, and Kim told me it was with the ALS Clinic team - SP, doctor, nurses, social worker, nutrionist, etc. and would take several hours.  Kim was right, and I was wrong, of course.  Maureen was kind enough to move it to next week so that I could take care of my work commitments this morning.

Thanks for reading, and I hope that some of this information is useful to you as writing it is helpful and cathartic to me.

Diagnosis ALS

My first symptoms started in early November 2013, just after I got my annual flu shot at work on my Anniversary, 10/24.  I woke up one morning, and my speech was slurred and I noticed muscle spasms in my face and neck at night when I was sleeping or waking. 

I thought it was related to my stress at work and maybe the flu shot.  I told my doctor as much.  We decided to wait and see if it cleared up.  I started googling slurred speech and its causes and found lots of things  it could be, but I never figured it would be ALS.  I didn't know that ALS has a form called Bulbar, that tends to start above the shoulders.  I just learned that about 1/3 of ALS diagnoses start this way, the other 2/3 start in lower limbs like arms, hands and legs.

Of course I procrastinated going to see the doctor.  I'm a mutt of Norwegian and English/Irish descent, so I am stubborn and hardheaded - just ask my wife Kim or my family.  I have the usual stubborn streak for a Knudson - a mile wide and a mile deep.  We were dealing with my father-in-law's nursing home stay and driving to State College from Mechanicsburg every weekend to help with Bill Harris at Hearthside and Jean at home and had been for 16 months at that point.  Work was crazy, lots of projects, some that needed to be done by year end, and lots of hours on weekday evenings and weekends. 

I saw my doctor again before our week in Jamaica with family and friends at an all inclusive resort.  We agreed that if my relaxation didn't fix my problem that we would go the next step and refer me to a neurologist.  I though at first it was better during the early part of the week, but it was back and getting worse again by week end.  I went back to Dr. Young the following week and he gave me a neurology referral.

Dr. Young sent me to a very good neurologist at the new PinnacleHealth West Shore Campus, Dr. Liana Laza.  Dr. Laza told me that based on my symptoms she thought I could have the Bulbar form of the disease.  She helped prepare me for the eventual diagnosis so that confirmation wasn't as difficult as it might otherwise have been.  Three weeks after my initial visit, I went back to Dr. Laza for an EMG test.  The lower portion of my body was good, but she couldn't get a reading with the electrode on my partially paralyzed tongue.  So, a referral to Hershey Med Center and the Neurological Center, which also has an ALS Clinic.

I saw Dr. Velazquez (de Espana) and Dr. Simmons Thursday morning 5/8 for over an hour.  They ordered blood tests across the street and asked me to come back at 12:15 for another EMG test.  This one was conclusive, and they diagnosed Bulbar ALS based on the fasciculations they saw on the EMG machine.  A fasciculation is a non-normal electrical response from the nervous system, a misfiring, if you will.

Seven months later, work hasn't slowed down much, if any.  I have about 7 different projects/initiatives I am involved in between 4 different clients and have been spending three to four days a week onsite at PennDOT since February with a project that has to be completed in June so that the Department can submit their annual mileage and roadway information to FHWA.

I am a workaholic.  I admit it.  I have lived to work instead of working to LIVE.  That changed last week on Thursday when I was diagnosed with Bulbar ALS.  While things are still crazy for the moment, I have to make time for myself, my loving wife Kim, my family, and my friends.  That means making lots of plans immediately for the next 2 years and making lots of lasting memories for the rough days that will be ahead - both for me and my family and friends. 

I have a positive outlook, and I think I am a strong man, but my faith, my body, my patience, and my loves, family, and friends will likely be tested in the years to come.

Next: Speech Pathologist on Wednesday morning this week.