Wednesday, July 30, 2014

A bittersweet and emotional day

Today was my last day onsite at PennDOT for the HPMS project, which I have worked on mostly fulltime for the past 5 months.  I was very emotional about leaving this afternoon and almost in tears, and I had a difficult time keeping my composure.  I have noticed a change in my emotional state over the past few weeks, not sure if it is just a progression of the disease or if I was anticipating today.  The next few weeks should tell.

I left today knowing that PennDOT is in a good place for next year's HPMS submittal.  I worked very hard this year and had a very short amount of time to rewrite the programs.  I did make some mistakes and didn't have all the information I needed to do the job properly and PennDOT had to do some rework as a result, which I felt bad about.  However, I think we worked out all of the remaining issues in the past month, and I wrote a lot of helpful documentation which will help the persons who have to support the project next year.  I know in my heart that there are very few people who could have done what I accomplished for them in the past few months, and I feel good about my contribution.

I have always loved working onsite at PennDOT, and I will miss my extended family on the 6th floor and my friends on the 8th floor of the CKB.  It was very helpful to have a challenging project to focus on when I was diagnosed with ALS on May 8th, and my PennDOT friends and family showed great compassion to me and buoyed me up.  My friend Stuard ministered to me and helped me back to a closer relationship with God through the most difficult days.  Thanks to all of you for your kindness, friendship, and prayers.  I will miss seeing you on a daily basis, and I hope to be back again to help out on some other projects in the future.

Kim and I also met with our financial planner from Northwestern Mutual this afternoon, Paul T.  When he called last week to check in, he was speechless when I told him about my diagnosis.  We prayed together tonight and he was very helpful this afternoon in explaining to us the excellent plans we put together over the past 15 years.  We received excellent advice from NMFN over the years and layered long term disability, life insurance, long term care, and a great retirement plan into a cohesive and comprehensive portfolio. 

Kim and I have always paid ourselves first and NMFN made sure we had great products and plans, coverage, and a safety net in case the worst happened.  Those plans make what comes next for Kim and me a little easier and a little less worrisome.  It was a difficult discussion to have and very emotional, and all three of us cried this afternoon because it is scary to think about what will happen over the next few years.  Paul contacted one of his other clients whose husband died from ALS and provided Kim and I with her contact information.  She also had wonderful things to say about the Hershey ALS Clinic, doctors, and staff.

I have lots of work waiting for me back at the Baker office, and will enjoy seeing more of my Baker friends and family over the next few months.  I still plan to get downtown on a regular basis and have lunch with my friends, and I have promised lots of visits to people that I need to fulfill now that I will have a little more freedom.  I look forward to the transition and catching up with my friends!

I had to call the Computershare Investor Centre help line tonight for the second time this month.  They didn't fix my problem the first time I called two weeks ago, hhich got me a little steamed.  I have been unable to see my stock portfolio balances since my last successful login on June 30.  Unfortunately, the person on the other end of the phone couldn't understand my speech, so I got frustrated and passed the phone over to Kim.  Kim didn't get any farther with the person on the phone, so maybe it wasn't just me...  After 30 minutes on the phone, she finally told us to call back tomorrow.  That is NOT good customer service!

Monday, July 28, 2014

How I Am Feeling

Two for the price of one today!  :)

Kim suggested that I let everyone know how I am feeling and doing, both physically and mentally.  Honestly, I am really feeling great! :)

Like everyone over the age of 50, I have my struggles with my body, but mostly minor ones.  I have been blessed with good health most of my life.  I have had a lifetime of dental work, TMJ, chronic, year around allergies (not good in central PA), and my wife says that I poop too much.  She's just jealous!

My TMJ and allergies have been compounded by my ALS symptoms so that I am not sleeping as well as I once did.  My jaws and teeth ache in the morning, I have a terrible gag reflex, and I have trouble finding positions where I can breathe easily in order to sleep well.  My mouth seems dry during the day, but I have excess saliva at night, especially with a mouth guard, so I keep a drool towel handy.  Excess saliva is one of the symptoms of ALS.  I have a prescription to help with that, but because I only seem to experience it at night, haven't started taking it yet.

This morning I went to my dentist for a TMJ consult.  I have carried my stress in my jaws all of my life, and until I started having muscle spasms in my face, throat, and jaw, I was able to keep it fairly well under control.  When it got bad, I would wear my night guard for a while until it passed.  Now, it is constant.  I finally decided to do something about these issues so that I feel better, don't grind my teeth away, sleep better, and have less jaw and tooth pain.  Fortunately, Dr. Carney says he can help me and is going to bypass a lot of the expensive TMJ testing they would normally do and move directly to getting me fitted for a dental appliance I can wear during the day and another one at night to address the issues and deal with my apnea and receding lower jaw (another ALS symptom) to deal with the apnea and help me breathe and sleep better.  When I can't breathe through my nose at night, I don't sleep.

The muscle spasms caused by my ALS in my arms and legs are sometimes difficult to ignore, especially when I am trying to sleep.  I have some weird localized pain that may or may not be ALS-related, like in the heel of my left foot.  Of course, every new pain makes me wonder if it is ALS-related and worry a little bit.

The biggest issues that have manifested with my ALS so far are my dysarthria (unclear speech), and issues related to eating and swallowing.  I have to chew more with my mouth open because of the partial paralysis of my tongue and jaws, and I have some difficulty swallowing some things.  When I drink or swallow, I gulp some air, which makes me burp.  I cough more frequently, either from swallowing saliva or drink or food.  I seem to yawn a lot more than I used to, and I don't know if that is an ALS-related symptom or may be caused by my major reduction in caffeine intake.  It takes me a lot longer to eat a meal than it used to, and I have to cut my food up in smaller pieces.

My gag reflex seems to be somewhat better.  I bought some small sugar-free (stevia) mints and menthol lozenges that I use often, which seems to help - not sure if it repositions my tongue or why it may work, but it certainly does help when my throat starts to tense up to have something to fight that feeling.

Although my arms and legs are constantly spasming, I don't think that I have lost any arm strength yet.  I feel that my walking gait may have changed a little bit, although that could just be my hypochondria.  I don't have any real trouble walking or taking stairs at this time.  I used to get up most mornings and walk on the treadmill, but I stopped doing that because I don't want to wear my muscles and motor neurons out any faster than I have to.  However, with my trip in September and planning to do some hiking and horseback riding, I think I need to start walking again - maybe not as fast or as long, but I don't want to be completely out of shape at high altitude.

My friend Steve suggested that I get a Lyme test, because sometimes Lyme can cause ALS symptoms.  I did get a test and it came back negative, darn it!  If it had been Lyme, it would have been treatable.

My TMJ dentist today suggested osteopathy to help with some of my other symptoms and offered to investigate to see if there is someone in the are he would suggest.  I am also considering acupuncture to see if that might help reduce some of the spasming, help reduce TMJ, or help with my chronic allergies.

I did find a paper on the NIH website about 2 ALS patients treated with acupuncture and a homeopathic liquid called Enercel in Florida.  I have made some inquiries, but am not sure they are on the up and up.  They didn't conduct any clinical trials.

I also checked out the BrainStorm/NurOwn research studies in Boston last week and attempted to contact the 2 lead doctors to find out when they may start accepting patients - the website indicated that they had not started to do so yet.  I figure if I was accepted in either Boston trial, I could drive or ride the train, plane, or bus to Boston from Harrisburg if I needed to or stay with some friends or family or hotel close by when I needed to be there for longer periods of time - such as when they harvest the bone marrow from your hips in order to gather the stem cells required for the NurOwn treatment.  It is a treatment, not a cure.

Kim found some articles on diet this weekend that I need to look at closer - Ketogenic diet.  May help ALS patients.

My friends, coworkers, and family keep me buoyed up with their kindness, caring, thoughts, actions, and prayers.  My wife fills my days and nights with love.  I am indeed a lucky man!

Medical breakthroughs happen every day, and I am hopeful that we will see a breakthrough for ALS treatments and maybe a cure in my lifetime.

So, overall, I am feeling fine, mentally and physically.  If I can get some help for my TMJ and allergies so that I can sleep better, I will be very good, indeed!

A Quiet Weekend at Home

Kim and I enjoyed a nice, mostly quiet weekend at home, marred only by some major thunderstorms Sunday night.  We spent many hours writing thank you notes for the Hershey ALS Walk for the Cure last month and mostly emptied out the DVR. 

We sat outside briefly on Saturday afternoon but it was too hot and humid to stay long.  I also spent time working on cleaning up my mess in the basement and made a good dent in the papers and correspondence I have kept over the last 40 years.  Did I mention that I am a packrat and a slob?  I have everything filed in folders now at least so that I can review when I have time.  I also brought some of my college notes from my geology classes upstairs.  I took notes in class and then rewrote them legibly, and I am looking forward to revisiting Dr. Heald's mineralogy classes and Structural Geology again soon.

It was a fun trip down memory lane reading some of the notes from family, old high school friends, and other campers I met at Skyland Camp in Crested Butte, CO the summers of 1974 and 1975.  I now plan to work my way through the folders of letters from family and friends.

I started a Facebook Group for Skyland Camp a few years ago and have reconnected with a number of my friends through that collaborative effort and enjoyed sharing my pictures and memories and viewing theirs.  I found my "Kangasheep Card" from 1975, when I went on 4 different backpacking trips, the longest being the only 5-day backpack in camp history.  The card says that I ascended 37,726 feet in 6 weeks time, and I believe that I climbed seven different 14,000+ foot mountains.  That amounts to an average of 900' vertical climb for each of the 42 days I was at camp!  It was grueling, but an awesome adventure with the counselors and campers, sliding down long snow slopes in August, getting snowed on one night at our 12,000' camp sight, fording streams, eating gorp by the handfuls, mixing orange Tang with snow, and seeing some amazing sights! 



So, one of our stops in Colorado with my Dad and brothers Forest and Chuck in September will be to the Crested Butte area.  Most people are familiar with Crested Butte because of the spectacular skiing on the western slope of the mountain.  My dad worked on a ranch in the area when he was a young man, and the camp was built on the south side of Mt. Crested Butte.  The girls slept in Quonset huts and the guys slept in covered wagons with canvas tops.  I haven't been back to the area since 1975, so I am eager to see what the area looks like now and ascend to the top of the mountain via the chair lift and then hike to the summit like I did in both '74 and '75.  We ascended to the peak by walking back then as the ski lift wasn't open in the summertime, and it took a large portion of the day.  We also took a whole day horseback ride around the base of the mountain, which was a blast!  I'd like to do a half-day horseback ride here if we have time.  May also have to try the zipline course at the ski area also while we are there.  There are a few other ziplines across the state I hope to visit, experience, and take some pictures at for the blog, making great memories along the way!

Wednesday, July 23, 2014

A Tribute to Don Farrell

I wrote in one of my earlier blog postings about my friend Don Farrell, whom I worked with at PA DEP and who I walked with/for in the ALS Walk for the Cure in 2011.

I finally got around to reading all of Don's Blog postings and am going to buy his eBook.  Don passed away in late 2013.  His blog website is: Love is Real.  It is well worth a read.  Don was a master wordsmith and an active advocate for ALS.  RIP, my friend.

I had a very nice lunch on Monday with my new friend Teri J.  We talked about working for the Commonwealth and OA/OIT and I shared information with her that I hope will help her with her interview this week as CIO for one of the state agencies. 

Down to my last few days at PennDOT on the HPMS project.  I have one day planned next week and that should be it unless they request some additional support before 7/31.  When I was leaving yesterday I walked through the PennDOT lobby and visited the agencies at the state Innovation Council presentations.  I stopped and talked to my PennDOT friends in their booth/display.  As I was walking through the agency booths, I heard someone call my name and turned around to see my old friend Mike R., who I learned is now Deputy Secretary for Procurement at DGS.  Also saw my friends Earl S. and Craig S. from DCNR and Heather from PEMA.  I had hoped to get down at lunchtime to see who was there but was too busy of a day to get away.

Not sure what we're doing this weekend.  I feel I should do some more cleanup work in the basement - I have the carpet filled with piles of papers, photos, and other things that need to be looked at and either tossed for filed.  Should plan something fun, also.

Our planned trip to NC for the Knudson family reunion got a little more challenging.  Chuck and Leigh sold their house and are closing on the new house the Monday after our weeklong trip.  Chuck has asked us to stop by and pick up mom on the way down and take her home also so that they can focus on packing and moving.  Otherwise Chuck would have to spend 16 hours in the car to drive up from Charlotte to Charleston to pick her up and return to Charlotte, and repeat the round trip to take her home.  Our original drive down was straight down I-81 and less than 8 hours.  Our modified trip will be 9.5 hours instead of 7.25 hours.  Kim is dreading the extra time in the car (not a good rider), but I don't see much of a choice.

Thanks for reading!

Tuesday, July 22, 2014

Another fun weekend!

Kelly and Jean came down for the weekend with Liam.  Kim signed Kelly and I up for Gotham Dream Cars on Saturday afternoon and we got 1/2 off using GroupOn.  I drove a Lamborghini and Kelly drove a Ferrari.  What a blast!  They had an autocross course set up at the Farm Show overflow parking lot.  We got to drive 4 laps with an instructor - a slow first one to learn the course and 3 fast ones.  It was amazing to feel that much horsepower between your legs.  I took the first lap at a pretty good clip, getting a feel for the car and the course and turns.  The first half of the lap was mostly straight away and the second half of the lap was mostly S-curves. 

The Lamborghini handled like a dream - didn't have to upshift or downshift.  I had it up to almost 90mph on the straight away on the last lap and the pedal mashed to the floor.  I was laughing hard and enjoying the ride, hard down the straightaway and as hard on every inside corner as I could get without running over the cones.  I had the tires squealing around the curves every chance I got.

It made driving my Kia Optima on the way home a joke, but I drove like I was still driving the Lamborghini, knowing I had new tires and taking the curves hard and mashing the pedal down hard. :) 

As part of the package they give you pictures.  They photographer didn't do a very good job capturing my face while driving but caught a great picture of Kelly.  Kelly and I both agreed we would do it again!







Kim and I saw the new Dawn of the Planet of the Apes movie Sunday afternoon in 3D.  Neither one of us really liked it that much.  Had a nice dinner at Black n Bleu afterward.

 

Tuesday, July 8, 2014

Time Flies...

Wow, it's July already - time flies!  And I've been slacking again on my blog.  I have been very busy at work again - I worked all weekend on a PennDOT proposal that was delivered today - ouch!  From now on, I'll be a contributor but no more being the proposal coordinator.  I was very stressed out yesterday and had trouble with my gag reflex all day long.  I delivered the proposal to PennDOT today at 11:30 and my stress improved immediately.

Kim and I have to decide what we're doing next weekend - going to the Zac Brown Band concert in Burgettstown on Saturday night or going to State College to see Kim's family and attend Arts Festival.  I've had our tix on sale at StubHub for a few weeks, but no takers and concert tickets are still available.  I think we are going to State College instead.  So, if someone wants tickets to see Zac Brown outside of Burgettstown next Saturday night, please let me know. 

The following weekend Kelly is coming down on Saturday and we're going to drive dream cars at the Farm Show in the afternoon.  Should be a blast.  May drive a Ferrari, Lamborghini, or a Maserati.

Also have tickets on sale for Steely Dan on August 8 at the Seneca Niagara Casino (American side of Niagara Falls) if anyone is interested.  Kim and I were looking forward to this concert, but my family reunion was scheduled starting Friday through the following Thursday.  So instead of driving North and seeing the Falls, we'll be driving South to North Carolina.  So, if you would like to visit Niagara Falls and see an awesome band in concert, please contact me.

Looks like a week in Colorado in September with the Knudson men is also going to happen.  Dad and I have our airplane tickets already.  Can't wait to see the quaking aspens, rocky and rugged mountains, revisit the town (Crested Butte) where I sent two summers at Skyland Camp as a teenager (haven't been back since),  and visiting family in Littleton and Grand Junction.  Hope to do some hiking, horseback riding, and ziplining while we're there.

Back to PennDOT tomorrow - first time in a week.  Wrapping up the project at the end of the month, just a few days left.  Starting to get busy with PA Turnpike work again.