Thank You

I would like to thank my many friends who read my blog and send us messages of support and encouragement!! You make my days easier and less lonely!

I receive a lot of support through emails and Facebook. My former coworkers from Baker, DEP, GeoDecisions, and the GIS community in Pennsylvania keep me smiling. Special thanks to Karyn and Heather who send cards from the 16th floor at DEP and Steve and Charity who send pictures from their nature walks.

I am looking forward to having my own PRC Accent system soon with stands so I can use the system in bed and my wheelchair in addition to the tabletop stand I currently use in my lift chair recliner.  You should see many more updates then.

November Update

Hi everyone,

I have been out of commision for a while since I had to return the tobii dynavox system a few weeks ago. I received a loaner system from Prentke Romich last Thursday and have been setting it up and getting used to it. It runs on Window 8 and is more sophisticated than the tobii. It has support for many more Windows programs than tobii. I also find that it is more accurate typing on the keyboard which means my eyes don't get as tired.

I like the system,although I miss my iPad. Apple needs to get a product in this market.

I am doing okay but not great. I am having some congestion and trouble breathing. I have no ability to stand on my own and very limted use of my arms and hands. My neck is very weak and I have difficulty holding my head up unsupported.

The good news is I am sleeping better than I have in months since I put a memory foam topper on the hospital bed and I sleep in bed every night now . Since I can no longer read on my iPad, Kim usually reads a chapter or two to me every night after I am in bed and getting a nebulizer treatment before Kim goes to bed.

My power wheelchair still is not comfortable or usable without assistance. I have been very disappointed with Dicks Medical because it takes a few weeks every time we call. After three Months it still isn't usable.

I have been blessed with regular visitors and emails cards and letters .I plan to start responding to you now that I have a communications platform.I also hope to be able to write more blog posts. Chuck visited in August , Forest in September , on and Helen in October ,and Chuck comes back for another visit this weekend. Other friends visit on a regular basis including KC and Paul, Ellen, and Eric.

Kim and I celebrated our 28th anniversary on October 24. I also had 2 years of symptoms the first week of November .Kim is an amazing and strong woman and has had to deal with her own serious health issues and major surgery the last few months .

As a result we now have 2 aides at all times.  Now in addition to Catherine, we also have Emily, Tim, Sherry, Cindy, Crystal, and Rebecca from 3 different companies.


Our house renovations are moving very slowly but the floors and painting are finished . The kitchen and master bathroom are started but a lot of work remains . It will be sometime in December before we can move.

october update

this is my first update since i lost my ability to use my hands to type.

i have now lost my ability to walk and use of my hands as well.

i am using a tobii dynavox system with eye gaze tEchnology to type each letter which is slow and tedious but better than not being  able to communicate.

it is a loaner to see how i like it. i tried a different system on friday that seemed promising also but i will be several weeks before i can have a loaner.

in the meantime i have tobii system for a while longer.  it tires my eyes but i get a little better every day.

 special thanks to jessica, elijia, andjamie from psu for providing more manual communications boards and facilitating the vendor demos and equipment loans!

Fall Update

Thanks for checking in on us.  This is Kim.  Typing has become a real chore for Jim, so, I volunteered to do an entry for him.

We can’t believe that it’s almost September!!  The summer just flew by.  We are very settled in with Mom – she’s a true blessing to us.  For better or worse, though, we closed on our new house last Thursday.  It’s about ½ block from Mom’s, so we’ll still spend lots of time with her!

We’re doing some updating before moving in – new paint, flooring, appliances, and a zero-threshold shower to allow Jim easy access.  Kelly (my wonderful brother – also indispensable) and I did some shopping last Friday – brought paint and hardwood samples home.  With everyone’s input, we have made decisions there.  Next are appliances, countertops, and some new lighting.  We’ll be all on one floor and the floorplan is very open- easy for Jim to tool around in!

Speaking of tooling around, his new power wheelchair arrived last week.  We’re slowly working our way into that – it needed to be adjusted to fit him and we’re struggling with finding an easy way to help him out of it – right now it takes assistance under each arm for him to stand up.  Most of the time there’s only one of us around for this.  Thinking maybe a tension bar in a doorway might give us the right leverage?  We’ll see.  It operates with a joystick.  Thank goodness Jim has spent “some time” playing video games - -who would’ve thought that that experience would come in handy!!

We finally have an aide Monday – Friday 8:30 – 4:30 (and M-F evenings 8 – 10).  Two WONDERFUL ladies.  It is such a relief knowing that Jim’s in such good hands when those hands can’t be mine!  Don’t know how they’re compensated, but whatever it is, it’s not enough! 

Jim is getting a bit weaker, but nothing too dramatic.  He gets extremely impatient when trying to type.  Threw a real temper tantrum the other night.  I haven’t laughed that hard in a really long time!!  He laughed too.  He’s moving a little slower and not as far as he did.  He’s been sticking to the back of Mom’s house – in “Bill’s Mancave” where my Dad used to hang out – TV, desk, recliner, his bedroom (with hospital bed), and bathroom.  Miss being in the main house with Mom, but I think she’s a little relieved – she wasn’t a fan of some of the television we watch!

The next quarterly ALC Clinic appointment in Hershey is next Wednesday (9/2).  Hope to see a speech pathologist – the first step in the process of getting the Tobii eye tracking technology – so he doesn’t have to type anymore.  It’s usually a long day.  They arrange for you to see all disciplines (from physical/occupational therapy and respiratory specialist to social worker and research staff) in one visit.

Please keep those cards and letters coming.  Jim was so used to such an interactive, gregarious lifestyle.  I know that he tires of looking at my mug all of the time!!  If you’re in the area, visits are welcome too.  My dear brothers, our friends KC and Paul, Eric Jesperson and Ellen have brightened his/our days with frequent stops.  As always, thanks to all for your thoughts and prayers.  We hear you!  Until next time - Kim & Jim

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!