Total Dependency

It has come to the point in my illness that I am totally dependent on my caregivers for all aspects of my daily needs.

Just 5 months ago I was living and working independently in our house in Mechanicsburg, walking with a cane, shopping, eating regular meals, taking care of all of my personal needs, driving, running up and down  stairs many times a day, carrying heavy boxes, and working out on the treadmill.

Everything changed drastically after my surgery on 3/3 and my illness has progressed very rapidly since then.  The doctors warned me that in some percentage off ALS patients thus happens.  Whether it was the anesthesia or the recovery period when I was inactive, it seems to have happened.

Today I need help for everything and can do nothing for myself.  My caregivers have to help me in and out of bed and to reposition in bed, dressing and undressing, going to the bathroom, eating, drinking, getting to my feet from a seated position, showering, mouth care, medications, walking, and picking anything up.

For several months Jean and Kim were my caregivers but we quickly realized we needed more help.  We connected with Home Instead and had a young lady start 2 mornings to help me get up, shower, and do my laundry and help with other needs, cleaning my bathroom  and performing other light housekeeping tasks.

We started our 12 week elimination period for long term care eleven weeks ago, and are getting ready to start our final week of paying out of pocket for my aides.  We now have 2 aides Stacie and Catherine, who are here 28 hours during the weekday and 2 hours each weeknight.  Hopefully we will have 40 hours of weekday coverage soon in addition to the 2. Hours weekday nights.

The 2 hours at night has been very helpful to Kim so she can get to bed an hour earlier so she can get more sleep and is less stressed.  The help during the day frees up Jean to walk Liam, run errands and go to lunch with friends instead of being house bound worrying about me.

It has been very humbling to give up my independence and become totally dependent on others for every aspect of my existEnce!   Last week we went to the DMV to turn in my drivers license and we now need to sell my car.

My legs, arms and hands continue to get weaker.  We heard this week that my power wheelchair was approved by insurance but without all of the features that were requested.  They are contacting MDA and the ALS Association to determine if they will contribute, otherwise we will have to pay several thousand dollars out of pocket.  We will get a Hoyer lift this week to get me off the floor when I fall and to help with transfers when I am no longer strong enough to assist.

The power lift chair has helped a lot to get to my feet to use my rollator walker, but I am more wobbly than ever, slowing down and taking smaller steps.  I had a bad fall last week when I lost my balance in the dining room and fell backward from a full standing position.  My head hit so hard that my glasses cut my nose and then flew 4 feet in the air. We had to call Kelly to come over to help Kim lift me off the floor.

We also heard from Social Security this week that my application for Social Security Disability Insurance was approved with payments starting in October and Medicare kicking in at the same time.

Through it all we remain as upbeat as possible, connecting as often as possible with family and friends, and trying to fill my hours of sitting with emailing, reading, updating my blog, sorting through boxes (with help), and watching Netflix.

A busy month!

Two trips last month took its toll on Kim and me but wouldn't have missed either one!  Thank you everyone who walked and/or donated to the Hershey ALS Walk and supported us from afar!  And it was wonderful to have the Cooleys join us for a Godby family reunion.  While we saw Aunt Geneva and Cousin Frank in Grand Junction last September we had not seen Cousin Loraine for almost 30 years.

My hands don't work well these days as my right hand is a claw and my right index finger no longer is straight enough to type.  As a result I have not sent any thank you notes and it is harder to write blog posts with a singLe finger.  I can no longer hold the larger iPad Air so I bought an iPad mini that is lighter and has a smaller keyboard for one finger typing.

THe Boston triptwo weeks later amounted to a Knudson family reunion and was the first time in.many years that we were all.together.  My butt hurt for 2 weeks after the long train rides.

In between the 2 trips we spent a weekday running all over town to HealthSouth for a power wheelchair evaluation, to the doctor, to Dicks Medical to select a lift chair, and an evening visit to the PA GIS Conference InfoSwap happy hour where we were graciously welcomed by many friends, former coworkers, and the Pennsylvania a geospatial community.  It was heartwarming to be received and supported by so many colleagues and your outpouring of love and kindness.  Thank you! Special thanks to Eric for honoring me and to Ashis for driving up just to see me!

A lift chair was delivered last week as I am having much more difficulty getting to my feet.  We have also increased hours for home healthcare aides to 3.5 days a week and 2 hours every weekday night to help get ready for and get into bed. This is week 11 of our long term care 12 week elimination period, so in 2 weeks we will no longer be paying out of pocket for the aides.

At my last doctors visit I requested physical therapy and occupational therapy and both were approved by insurance and started last week.  In addition we are ordering a Hoyer lift nsow as I have had some more falls recently and it is difficult to get me off the floor.   Thank goodness I have such a hard head!

June 19-22 Boston Trip

For my birthday and Fathers Day we took a weekend trip to Boston to see my Aunt Esther, Uncle Jim (my namesake), cousins Kristin and Hilary (visiting from Ireland), and Kristin's husband Michael and son Ian.  With me were Kim, father Don, and brothers Forest and Charles.  Dad flew into Pittsburgh and drove to State College. 

We got up early the next morning and drove to Harrisburg.  We took Amtrak from Harrisburg to Boston on Friday and returned on the train on Monday. 

We celebrated my birthday, Fathers Day, and Hilary's birthday early (24th), had a wonderful visit and shared many laughs, good food, memories, looked at old photos and made some new memories.

It was a difficult trip physically for me but worse for Kim.  Kim had to reposition me in the king size bed multiple times each night, so neither of us slept well for 3 nights.  My strong brothers helped a great deal with vehicle transfers and the hotel provided a wheelchair.  Thank you to my brothers and dad for making the trip and especially to my loving wife Kim for her sacrifices!

To all of my Facebook friends who wished me a happy birthday, thank you! 

  

 

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.

 

;; 

Th

 

C 

T

T

   

T 

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.