2015 Hershey ALS Walk for the Cure

Sorry that it has taken me so long to post this.  It has been a tough week for me physically.

My brother Forest flew in from Denver Thursday afternoon and drove to State College from Pittsburgh.  Brother Chuck drove his family and mom up from Charlotte Thursday night to Hershey.  My Aunt Geneva and cousin Frank flew in from Grand Junction and cousin Loraine flew in from Kansas City.

We were joined by Kim's mom Jean and Kim's brothers Pat and Kelly plus many good friends.  Many of my coworker friends from Baker walked with us, 5 of my friends from the Commonwealth walked, 2 of our neighbors from Mechanicsburg surprised me, and Kim's best friend KC and daughter Paige made the trip from State College.  I was honored and deeply touched by those who showed up to support us and also the many donors who made contributions.  Thank you from the bottom of my heart!

My hands aren't working well these days and it is getting harder to write the  blog so I am going to publish this incomplete and work on updating it later.

 

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ALS Clinic 6/1 and TMJ Therapy

Last Friday I had my first therapy session at Atlas Therapy.  Since I can't lie down and breathe and my allergies limit reclining capabilities, I sat in a chair for some massage therapy for my jaw and teeth clenching, grinding and pain.  It was somewhat painful but at the end of the 30 minute session I was able to open my mouth 2-3 times wider and smile better.  Kim and Jean were amazed at the results in my face.  We have  2 sessions scheduled each of the next 2 weeks.

Monday was my fifth ALS Clinic, and it was a long day.  We left the house at 8am and our first stop was at Baker to drop off my work computer, iPhone, badge, and credit card.  We also stopped at our realtors office to pick up something from the house the movers left behind.  Then we headed to Hershey for our clinic visit.

Didn't finish the respiratory testing due to a coughing/gagging episode, so didn't get a new FVC score.  Legs and arms were significantly weaker.  They recommended we start the process for an electronic wheelchair since it takes several months.  Right hand measured 10 instead of 20 in March, and left hand measured 20 vs 80 in March.  Since the Nutren 2.0 formula has been bothering my stomach they gave us 2 different cases of formula to try.  They both have fiber which the Nutren doesn't.

We checked in at the clinic at 11:45 and didn't walk out the door until 5pm, just in time for rush hour traffic.  Nothing to eat since we left the house.  We finally got home at 7:15, exhausted!

Friends and Spiritual Counseling

Jean had to go to Hershey on Wednesday last week so aide Stacie was here in the morning and friend Ellen came over to spend the afternoon with me.  Ellen and I talked for 2.5 hours and the time passed quickly!  Ellen also asked her pastor if she would be willing to visit me, and we both agreed to do so. Thank you Ellen for your friendship and compassion, and thank you to husband Bob also for time away from you and Christi!

Friend KC came over today to take me out for a walk.  It has been a week since my last walk outside and we took (for me) a long walk up to see our future condo.  It was nice, about 61 and breezy.  Walked for about 30 minutes and KC, Jean and I had a nice visit afterward.  KC and daughter Paige will join us at the walk this Saturday.

I have many friends who email me regularly.  Unfortunately with the move my Verizon email died, and my primary email is Jim.Knudson@gmail.com.

Rev. Susan and I met for the first time last Friday, and we're very comfortable with each other.  I have been wanting spiritual counseling for over a year, and I look forward to Rev. Susan's ministering and guidance.  She will come back next week to continue discussions and serve communion.

Many of you who read my blog are praying for me and have added me to your prayer circles and lists.  Please keep me and my family, especially Kim and Jean in your prayers.

Dentist Visit

Kim picked me up today at 11:30 to take me to my noon appointment with Dr. Carder, who was my dentist 20 years ago when we lived in State College.  I was very nervous because I have been grinding my teeth uncontrollably 24/7 for at least the last 6 months, and my allergies have been Terrible the past 2 weeks. My last dentist appointment was only 6 months ago, but my condition has radically changed since then.

When they took my blood pressure it was 150/102, very high!.

Because I have had a bad overbite all of my life, and ALS muscle deterioration has caused my lower jaw to recede, and I suffer from muscle spasms in my jaws, I grind my teeth uncontrollably 24/7.  I have a place on each side of my upper jaw where my lower teeth have worn away upper teeth and the lower ones now make contact with my gums.  I was very concerned that I would learn that I immediately needed to have some teeth pulled.  I am very happy to say that I do not!

Dr. Carder gave me a very thorough exam of teeth and muscles and determined that although worn, my teeth are still sound and he believes that I would benefit from physical therapy and massage.  Kim said that I looked 10 years younger and I left all smiles!  We have a referral to a practice in town to start therapy and I look  forward to receiving some relief from my chronic jaw and teeth pain!  Hopefully I will soon be able to open my mouth wider, then go back for a cleaning and other mouth care.

Holiday Weekend

Beautiful weather this weekend, makes me thankful for the end of the cold weather this week!  Hopefully we will similar weather for the walk in 2 weeks.

Kim's brother Pat and wife Nancy came down for the weekend and it was great to see them.

Kim was busy in the kitchen for several days preparing awesome food for the weekend.

We put in an offer on a condo up the street from Jean's condo (6 houses away) this weekend after seeing it on Friday and it was accepted today.  It was in amazing condition and won't need as much work as the one we walked away from this week.  We're not sure when the lady will be moving out but will start scheduling inspections and restart mortgage paperwork.  We will paint, renew flooring, change out the kitchen countertop and do some work in the master bath.

Having good days and bad days with allergies.  Yesterday went well but today I had a rough start.

Kim and I did laps around the parking lot yesterday and today.  Yesterday she helped me organize and file photos.  We enjoyed a nap together this afternoon!

I go to the dentist tomorrow for a check up and to see if I have teeth that need to be pulled.  It seems like I always go when I have my worst allergies!  I am nervous because I expect bad news, gagging is at an all time high, and I can't spit.

A  week from today I go back to the ALS clinic.  It's amazing how much my body has degraded during that period of time!  My right hand was weak, but functional, I walked with just a cane, I was able to eat well, I showered myself daily, I could do steps with no problem, and I could use a computer mouse with my right hand.

This Week's Update

I had another anniversary week before last - my one year diagnosis on May 8.  It passed without realization by me until Kim mentioned it.

On Friday last week when we were originally scheduled to close on the house across the street we learned that the bank appraisal came back as "uninhabitable".  We haven't seen the appraisal, but believe it is due to the mold in the basement that the seller refused to remedy.  We had plans to remediate this and some other issues that the inspection identified.

First the mold.  From the appraisal we learned that it was in the floodplain.  The bad appraisal was the final straw - somebody is telling us not to do it!  So on Monday we terminated our agreement of sale since the lender wouldn't give a mortgage based on the appraisal.  We should get our earnest money back eventually but it may be as long as a year since it was after the inspection period.  Our house search has begun anew.

Allergies are horrible this week.  I forgot how much worse they were here since we lived away from State College for 20 years.  The first thing I do when I get up each morning after a visit to the bathroom is grab some Kleenex and take my allergy pill.

My right hand weakness has progressed to the point I no longer attempt to read the newspaper.  I can read most of the things I am interested in online.  I am having trouble with books also but they are more compact and a it easier to deal with.

This has affected my eating also and I have started using my left hand in addition to my right hand to hold a spoon.  We are also having difficulty finding things I can eat with my degraded teeth and finding the right consistency of food that doesn't stick to my tongue or the roof of my mouth.  I have a tooth that is starting to hurt and will probably have to be pulled so we are looking for a dentist.

I am doing a little better this week getting to my feet from a seated position.  I am using the vibration plate exercise machine every day so maybe that is helping.  I did 4 laps around the parking lot Monday morning with Stacie, my home health care aide.  This is week 3 of the 12 week long term care elimination period, so after 9 more weeks my insurance policy will kick in with a daily limit of a little less than $300 and my insurance premium will also be waived.

NMFN disability pays for a service to help file for Social Security Disability Insurance, and we had a call at lunchtime today to fill out the application.  Once SSDI is approved, Medicare is also approved.  The SSDI payment will reduce my NMFN monthly payment.

2015 Hershey ALS Walk, Saturday June 6

2014 Hershey ALS Walk for the Cure Team JFK

The ALS Walk is 2.5 weeks away!

We have raised about 28% of our goal of $5000 and have about 20 walkers out of our goal of 40.  Both of my brothers will be there, as well as my sister in law, niece, nephews, mom, aunt, 2 cousins, several friends, and 5 people from work (so far).  Several of us will be in wheelchairs, including me, my mom, and possibly my aunt.

Thank you to everyone who has signed up to walk and has donated to date!  If you haven't yet but would like to, please visit the Team Knudson website.