True Love

I showered tonight, currently a twice a week event whether I need it or not. Trust me, I need it!

Kim has to dry me off these days because I have trouble holding the towel and a getting it up high enough to dry my head and shoulders.  Because of my diaphragm pacing system she wraps my torso with Saran Wrap to keep it dry.  Otherwise we have to replace the Tegaderm and gauze that covers it and the bandage with the clip that the electrode snaps into.

That's the easy part...

The hard part for Kim is clipping my fingernails and toenails.  I never clipped them in front of Kim or even within earshot in our 27+ years of marriage, because it  grosses her  out.  She doesn't like to clip her own toenails, and she has always filed her fingernails, never clipped them.

Tonight she did fingers and toes for me. That is true love and I am a very lucky man!  I love you, Kimmy, and thank you!

Quote about Living from the Dalai Lama

One of my Indian friends in the geospatial industry sent me an email this week about his father's heart bypass surgery and experience with the Indian healthcare system in Pune.  Srikant finished with a quote from the Dalai Lama that I felt was particularly poignant.

“Man surprised me most about humanity. Because he sacrifices his health in order to make money. Then he sacrifices money to recuperate his health. And then he is so anxious about the future that he does not enjoy the present; the result being that he does not live in the present or the future; he lives as if he is never going to die, and then dies having never really lived.”

It took me a long time to realize how precious life is and how I let it slip by every day without fully participating in it and taking advantage of being in the moment and mindful about how lucky we are and how loved we are. We get so caught up in the distractions of work, school, and personal problems or the news on TV that we forget why we are here and what is important!

The hugs, love, and time I share with Kim, family, and friends these days are mindful and I cherish those moments.  Yes, I am scared and lonely, and I know that my body is failing rapidly, yet I try to live in the moment, experience joy whenever I can, participate in decisions about our life and a new house, and try not too worry too much about tomorrow.

I try...  I am not always successful, and I get depressed and sad sometimes about what is happening to me/us.  Sometimes I have to turn off the TV because the news is too depressing.

I read a lot these days, and that helps me cope and escape.  I have been rereading some of my favorite authors and series like Stephen R. Donaldson, Dean Koontz, and others.  Right now I am reading the Second Chronicles of Thomas Covenant by Donaldson.  In addition, I am reading the Alcoholics Anonymous book that my brother gave me for Christmas and the Bible.

I also have some fabulous friends who come to visit and email regularly.  Ellen F. is coming tomorrow morning for another visit and to show me pictures from her european river boat cruise.  This past weekend Dave Spokane and his family drove down  from New Hampshire to visit their son in school in Williamsport and stayed for several hours.  I will have a  separate post with pictures this week.

Back Pain

Last week I started having low back pain.  Was bound to happen sooner or later.  I'm not getting any exercise and about all I do is sit.  My muscles are getting weaker all over, my core muscles aren't getting any exercise except getting up from the couch or chair to my walker, my posture is poor, and I can't really go anywhere.  I strain to move around in bed and have started using a pillow for my lower back for those nights I try to sleep in the recliner.

I'm having much more difficulty getting to my feet from a seated position, and I have almost fallen several times in the last week.

There is a Pilates exercise machine downstairs, but I haven't been downstairs in over a month. It's too large to be upstairs.  We bought a more compact vibration plate exercise machine that was delivered a week ago and Kim's brother Pat put it together for me last night and is set up in my bedroom.  I hope to start using it some this week.

I had Botox injected into my cheek muscles when we were in Hershey a few weeks ago go see if it would help with my jaw clenching and teeth grinding, but it didn't make any difference.  I feel like I am about to break the rear molar on my upper right jaw.  I can't wear a mouth guard due to my gag reflex, so I should just go ahead and see a new dentist in State College so when it does finally crack or break I have someone who can extract it for me.

Home Health Care

As my limbs continue to get weaker I am needing more help.  Kim and Jean have been wonderful, but they could use some respite also.

My right hand is becoming non functional quickly.  My two rightmost fingers are pretty much useless and don't move much.  At night my hand pretty much folds closed.  I really can only use my index finger or thumb to type on the keyboard.  I have great difficulty grabbing a Kleenex out of the box.  I have to tape my feeding tube onto my stomach.  I can't rip the tape and can barely use scissors to cut a piece.

I bought a special pen so I can sign my signature when a I have to.  One is a ring pen, the other is a stubby pen that fits my index finger.  I can no longer hold a spoon or fork the way you do.  I have to grip it in my fist and then struggle to raise it to my mouth.

I can no longer get a shirt over my head without help.  I can barely get one off.  I can lift a 5lb dumbbell with my left arm but not with my right.

Because my fingers are so weak I can't button jeans or pants, so I wear sweatpants.  I can barely zip a zipper sweatshirt.

I bought a portable floor pedal exerciser that I can try to use to exercise my legs or arms but my legs shake when I use it.  I used a cane for about 2 months but had to get a 4-wheel rollator walker that I now have to use all the time.

We contacted a home healthcare organization 3 weeks ago and they put us on a waiting list and we haven't heard back.  We met with Home Instead tonight and will hopefully start getting some help this Friday three days a week.  I need help showering, dressing, and fixing food at this point.  This should take some of the pressure off Kim and Jean and will help me also.

Eventually I will need help 7 days a week and around the clock, but we're not there yet and hopefully won't be for a while yet.  I may be in a wheelchair in the next few months instead of a walker if my rapid progression continues.

We just ordered a vibration plate exerciser that I can use upstairs that may help me preserve my remaining limb strength a while longer.  Also plan to start walking with my walker around the parking lot next week when home health is here.  I need to get in shape for the 2 mile ALS walk on June 6!

We sent my completed Long Term Care claim form in this past Monday.  Once approved and after a 12-week elimination period we will have a daily benefit to offset the costs of some of my care needs.

Feeling better!

My toe is finally feeling better today, and I slept all night for the first time in a week!  I guess the prednisone is working and it really is gout. What a difference a full night of sleep and being able to walk without pain makes!  The sun is shining and the trees are starting to pop leaves, although it is to be rainy and cool again this week.

Talked to Forest on Skype (he talks and I respond on Skype chat) this afternoon.  He closes on his first house this week and is excited and we are excited for him!

My Skype handle is jimmyk3pa if anyone wants to video or voice chat.

Going to talk to my dad tonight at 8:30.

I posted my Team Knudson page today for the Hershey 2015 ALS Walk for the Cure on June 6.  Kim and I would be honored to have you join us and our families for this year's fundraiser and to raise awareness for ALS.  I hope to walk part of the course with some help from my friends but I won't be able to walk the entire course this year.  Both of my brothers are planning to come to Hershey for the walk this year, and my youngest  brother is bringing his entire family and my mom.

Last year we had 20+ walkers and raised more than $3000.  Our goal this year is 40 walkers and $5000.

The website to sign up to walk or contribute a donation is: Team Knudson Page

What a week!

We bid on a ranch condo new listing across the street from Jean this week and after several counter offers came to an agreement on a fair price.  It was built in1991, one owner, and is a mess, but the location is great, it has a nice level lot, a nice patio out back, a little less than 2000 sq ft on the first floor, and a large unfinished basement.  Inspections will be done next week.

That was the good news.

This week started spring allergies.  Fortunately my loratadine takes the edge off.

My legs have been spasming a lot this week, especially at night.  The spasms actually lift my legs off the bed when lying down, which makes it difficult to sleep.

Add to that a swollen and extremely painful big right toe.  It came on overnight Tuesday and was painful to walk on Wednesday.  I thought it might have sprained or broken it somehow.  Yesterday it was much worse, causing my leg to spasm almost continuously.  It was so bad last night I hobbled into the kitchen with my rollator walker at midnight to get the remaining oxycodone pills from my surgery to get some relief.  

After 2 hours, my leg stopped spasming enough to calm my toe pain so I could get some sleep in the recliner.  This morning we decided to have my doctor look at it.  Fortunately we were able to get in to see Dr. Hale at 10.  The pain was so bad we had to use the transport wheelchair for the first time to get me  into Kim's car and into the office..  He took one look at my red, swollen and very painful toe and indicated he was almost certain that I had gout!

Went downstairs to draw blood to confirm the diagnosis then went to RiteAid to fill my prednisone prescription.  Hopefully should work quickly and be completely gone within a week.

So this afternoon I'm relegated to the couch with my leg propped up to reduce the swelling and waiting for the prednisone to kick in, and will read some more of my book.

My Work Life Is Over

Friday marked my last day of work for Michael Baker International and was the end of my 27.5 year professional career.  Tomorrow morning I am on disability full time.

I worked for 7 different organizations and traveled to 4 continents as an IT and geospatial professional.

HRB Systems, State College
Keystone Management Systems, State College - U.K., Brazil, Canada
Advanced Technology Solutions (now geographIT), Lancaster - Alaska, Puerto Rico
GeoSystems/Mapquest.com, Lancaster - Wales, Australia
GeoDecisions/Gannett Fleming, Camp Hill
Commonwealh of Pennsylvania, Harrisburg
Michael Baker International, Harrisburg

I made good friends at each company, and I worked hard.  Each company felt like family.  I had some fantastic managers and a few not so great managers.

It was a great career and I will miss it, but the time has come to say goodbye and focus on remaining as healthy as possible for as long as possible.  Tomorrow is a new day in my life.

Northwestern Mutual Update

I stated in an earlier blog post about the comfort that Kim and I felt by having worked with Northwestern Mutual for disability insurance, life insurance, and long term care insurance.  That was one thing we didn't have to worry about when I was diagnosed.

We started working with a very young Tim Mulroy and Paul Torchia in 2003 when I took a job with the commonwealth and no longer had disability insurance from my employer.  We had lived in the house we built for 18 months and had a hefty mortgage.  That led to a review of our overall insurance, financial goals, and retirement plan, all of which were crafted to ensure that if either Kim or I got sick or died that the other would be taken care of and not lose our house.

We started with Life Insurance and designed a plan of term and whole life insurance.  Since I was the higher earner, we converted some of my term insurance a few years ago to whole life so that it would earn some cash value if we needed it later on.  It became our second highest monthly bill after our mortgage payment.

Our next concern was long term care, and we wanted to ensure if we got sick and needed home health or nursing care that we would have adequate coverage.  Kim and I both have 6 years of coverage as a result, and I am likely to start using it in 3 months after our 12 week exclusion period is over.  I already don't meet 2 of the 6 activities of daily life (ADL's) and we are working on hiring a home nursing care company.  We are on a waiting list for the company we really want but aren't sure when they will be able to start so we are searching for another company.

The big news is that NMFN sent us a letter last week indicating that due to my loss of speech in June last year after my diagnosis they were classifying my disability insurance as a presumptive loss, and would be paying my monthly private disability insurance in full retroactively back to June 1, 2014.  Also, since my life insurance policies also carry a disability clause, they indicated that they would be refunding our monthly premiums since that time and waiving all premiums on my disability and life insurance moving forward.  We received a substantial disability check in the mail and the insurance premium refund will go directly into our checking account.  They are also converting the rest of my term policy to whole life so that it will have cash value that increases on an annual basis.

Paul had told us when he first met with us after my diagnosis that all of these things could happen but that it took time and he couldn't guarantee that any of those actions would happen.  

Well, they have, and it made us realize that NMFN is a company unlike many others.  They try to find a way to help and pay their clientele unlike other companies who try to find reasons not to pay.  Our choice of companies was very fortuitous!

Post Surgery Appointment and Pacer Tune-up

Kim and I drove down to Hershey for my one month post-op checkup with Dr. Pauli and a quick stop at the clinic for Dr. Raheja to adjust my pacer.

I had some granuloma tissue around my PEG tube that Dr. Pauli burned off with a silver nitrate stick. He indicated that should clear up the leakage around my tube which Kim has had to clean up the last month.  Unfortunately, he was running late, which made us late for our appointment at the clinic.

Dr. Raheja turned up the gain on my diaphragm pacer to a much more noticeable strength.  It felt like a rotary telephone dial turning in my left side but couldn't feel much on my right side.  I wore the pacer for about 10 hours last night with no shoulder pain, so hopefully it should be an easy adjustment.  She will adjust it again when I go back for my regular Clinic appointment in 2 months.

Finally got done around 2pm (instead of noon), and stopped at Panera's for lunch before driving back to State College.

We closed on our house in Mechanicsburg Friday morning, so another chapter closed.  It is bittersweet because Kim selected the design and we built the house to our specifications.  However, the builder took some shortcuts that we subsequently had to fix and I always felt like the house was trying to kill me - leaky windows and doors, leaky basement, and a tornado!  We finally fixed everything by putting a new roof on last Fall.  Now the house is someone else's problem.  I hope that they enjoy it as much as we did!  I will miss our gas fireplace and the beautiful sunroom!  Now we just have to find a house in State College to live in!

Saliva Happens!

One of the annoying symptoms of ALS is excess saliva.  Coupled with a weak mouth and trouble swallowing, it means I leak all the time. 

Before my surgery it wasn't too bad and I was typically taking one glycopyrolate tablet in the morning to give me pretty good saliva control for the entire day.  Now I take as many as 4 a day with limited saliva control.  I used to carry some paper towels around with me for occasional use.  Now I carry a hand towel everywhere and I just bought some cotton terry bibs because I am always dripping on my shirt and pants.  Gravity is not my friend.  When I am walking or standing and tilt my head down I usually leave saliva on the floor.

Frequently, when I laugh at something, I spray.  I hate this, but have no control over it. Kim has been the recipient of the worst of this, unfortunately.

Yesterday I had such a difficult time by dinner my lips were so chapped that it really hurt when I tried to eat dinner.  I put on several coats of Chapstick last night and it was a lot better this morning.

I received my Zoloft prescription yesterday and started taking it today to see if it will help with my pseudo bulbar affect and uncontrollable laughing and crying.

I finally got a haircut last night!  It had been 2 months and I refused to cut it until we sent hair in for a metals and minerals/antioxidant hair test, which we did earlier this week.  Kim is much happier because my hair looks a lot better (except for a few bald spots where Kim cut hair samples) and my eyebrows are no longer a Jumbled mess!

Moving Day!

The reason you haven't seen any blog updates for a while is that today was moving day!  The movers arrived yesterday to pack our belongings and loaded the truck today and moved everything into storage until we find a suitable house that we can afford in State College.  Slim pickings so far but we're hopeful to see more as we get closer to the end of the PSU semester.

The last 3 weekends were spent in Mechanicsburg at the house deciding what shouldn't go to storage and what to give away.  We were blessed to have Kim's mom Jean, Kim's twin brother Kelly, and brother Pat to help us  We brought several full carloads home every weekend and created a huge pile to donate to the Salvation Army.  Unfortunately Kim had to take yesterday and today off from work to be at the house with the movers which was unexpected, we only found out this past Saturday that it was a requirement.

Kim got home safely tonight at 7:30 PM, exhausted. They had trouble getting our solid wood king size platform bed out of the bedroom.  When the bedroom suite was originally delivered more than 10 years ago they brought it around the back of the house and through a door directly into the master bedroom that we took out several years ago when the door started to leak.

I wasn't able to help much post surgery and with my weakened arms and legs.  I did have a fall in the basement as I was trying to sit down in a chair to type a message to Kim.  I tripped over the dehumidifier hose.  Fortunately instead of falling on the concrete floor and breaking some bones I fell on top of some boxes of books that cushioned my fall and only ended up with several severely stoved fingers and broken blood vessels in my left (good) hand.

The week of 3/23 I went back to work halftime for two weeks.  I was supposed to finish up last Friday but developed a nasty head cold at the beginning of last week that kept me from sleeping much, and working.  I am not able to blow my nose due to the loss of the seal between my throat and sinuses so I was miserable! Finally found a combination of things that enabled me to breathe better, sleep, and recover - Theraflu severe cold, Sudafed, and Afrin nose spray and back to sleeping sitting up in the recliner.

So this week I am finishing up my working life and 27.5 year IT/geospatial career and next week I start full time disability.

My friends have been amazing in supporting and reaching out to me electronically to help with my loneliness and to show their support.  I love my wife's family and they are very good to me but I have been a very social person my entire life and I have severe cabin fever and am missing my friends, work and neighbor interactions.

I am hoping as the weather gets better I can spend more time outside and get my rollator walker out to get some exercise and start working on being able to walk 2 miles at the Hershey ALS walk on Saturday, June 6.

I have a lot of people on my prayer list these days, and I am truly blessed have hundreds of people praying for me.  Seems like I add 1-2 people every day.  Know that I am thinking about you often, praying for you diligently, and wishing God's peace, love, strength, and favor for you, your families, and those around you!