PLEASE READ THIS ENTIRE MESSAGE AND HELP IF YOU ARE ABLE.
As we all prepare to start a new year, I would like to ask my friends and family and all SCHS grads to pray for and consider donating to help two of my friends. Whether you can donate $1 or $50 you can make a difference!
Tony Surbaugh and wife Debbie have had several difficult years dealing with severe health issues. Both have been diagnosed with cancer. Debbie was in remission until earlier this year and has started her battle again. Tony and Debbie are raising their grandson Cohen.
Sadly, Debbie fell while visiting her son in Allentown for Thanksgiving and fractured her skull. She also suffered a stroke as a result of her injury and was in a coma for 13 days. She has been in the hospital for over a month and just started rehab.
She can't walk or talk, has a trach, is on a feeding tube, and is just starting to take her first steps. The doctors don't yet know the full extent of Debbie's injury or impairment.
Debbie's hospital in Allentown is 7 hours away from Tony and Cohen in my hometown of South Charleston, WV. Tony and Cohen travel to see her as often as possible while Tony continues to work and Cohen attends school. The medical bills are astronomical and the family is trying to survive on a single income. Debbie's recovery will take months, possibly years.
Earlier this year, Debbie held a fundraiser in my honor with the proceeds going to the ALS Association and I would like to help Tony and Debbie with the financial support that they desperately need. Kim and I have made a contribution.
Therefore I am asking all of my family, friends, and social media acquaintances to pray for this family and for Debbie's full recovery and contribute as you are able via the gofundme page set up at the following website:
https://www.gofundme.com/u35zq4
Thank you for your support and I wish everyone a better year in 2016!
Thursday, December 31, 2015
Saturday, December 5, 2015
Swallowing and Breathing
For the last few weeks I have had a lot of congestion affecting my breathing and sleeping. I was hoping it was my fall allergies, but I now believe it is a progression of my ALS symptoms.
I have a lot of thick drainage in my throat which makes breathing difficult, forcing me to constantly clear my throat and causing me to choke and cough. The coughing and choking often leads to gagging and panic and sometimes vomiting. In the last week I vomited three nights straight. The danger is aspirating stomach acid or vomit into my lungs.
I have been taking cold medicine and sudafed and robitussin to keep my throat clear with limited results. Nothing keeps me comfortable 24 hours a day.
My swallowing ability has also degraded and I have difficulty moving food from the front of my mouth to the back of my mouth. As a result I am not eating much these days. I have been losing weight.
For my December quarterly ALS clinic, Hershey offered to do an online telemedicine session saving us 4 hours driving time and the dilemma of getting me in and out of a vehicle. I haven't been in a vehicle since my last clinic in September and I really haven't been out of my 3 rooms for several months.We will have to send my diaphragm pacer down to be adjusted but I sleep better without it anyway.
I have a lot of thick drainage in my throat which makes breathing difficult, forcing me to constantly clear my throat and causing me to choke and cough. The coughing and choking often leads to gagging and panic and sometimes vomiting. In the last week I vomited three nights straight. The danger is aspirating stomach acid or vomit into my lungs.
I have been taking cold medicine and sudafed and robitussin to keep my throat clear with limited results. Nothing keeps me comfortable 24 hours a day.
My swallowing ability has also degraded and I have difficulty moving food from the front of my mouth to the back of my mouth. As a result I am not eating much these days. I have been losing weight.
For my December quarterly ALS clinic, Hershey offered to do an online telemedicine session saving us 4 hours driving time and the dilemma of getting me in and out of a vehicle. I haven't been in a vehicle since my last clinic in September and I really haven't been out of my 3 rooms for several months.We will have to send my diaphragm pacer down to be adjusted but I sleep better without it anyway.
Wednesday, December 2, 2015
Pain
I am in a fair amount of pain every day. My teeth grinding continues and my teeth are being worn away on the right side of my upper teeth pushing my jaws out of alignment to the right hurting both jaw joints. I sleep best with my head flat and to the right and often wake with a stiff neck.
Since I can't reposition myself in my chair or bed my arms, legs, hands, feet and neck often get into an uncomfortable position and sometimes cramp.
When I get transferred we use a rolling shower chair with a hard aluminum tube that hits me in the middle of the back and is terribly uncomfortable. We use a rotating transfer disk to stand me up and complete the transfer but lately the aides have been standing on it which twists my knee instead.
It has been three months since I have had a shower, much longer than we anticipated due to the time the renovations on the house are taking. I get a sponge bath sitting on the toilet after I do my business every morning after the aides get me out of bed each morning.
Since my core and neck muscles are very weak and I rarely end up squarely on the toilet it takes a lot of energy to remain sitting upright for the 45-60 minutes it takes to finish before I get to my recliner. This is when I suffer the worst. I often slump severely to the left because I am crooked on the toilet and my legs aren't positioned to keep my head upright and when my head is down my back hurts terribly. This also makes it difficult to use the bathroom. My head usually falls from upright to the bottom at least 6 times during my bath and feels like my neck is going to snap when pressure is added washing my hair when my head is down.
Nothing I can do to mitigate the pain until we move.
Since I can't reposition myself in my chair or bed my arms, legs, hands, feet and neck often get into an uncomfortable position and sometimes cramp.
When I get transferred we use a rolling shower chair with a hard aluminum tube that hits me in the middle of the back and is terribly uncomfortable. We use a rotating transfer disk to stand me up and complete the transfer but lately the aides have been standing on it which twists my knee instead.
It has been three months since I have had a shower, much longer than we anticipated due to the time the renovations on the house are taking. I get a sponge bath sitting on the toilet after I do my business every morning after the aides get me out of bed each morning.
Since my core and neck muscles are very weak and I rarely end up squarely on the toilet it takes a lot of energy to remain sitting upright for the 45-60 minutes it takes to finish before I get to my recliner. This is when I suffer the worst. I often slump severely to the left because I am crooked on the toilet and my legs aren't positioned to keep my head upright and when my head is down my back hurts terribly. This also makes it difficult to use the bathroom. My head usually falls from upright to the bottom at least 6 times during my bath and feels like my neck is going to snap when pressure is added washing my hair when my head is down.
Nothing I can do to mitigate the pain until we move.
Sunday, November 29, 2015
Happy Thanksgiving!
Dear friends and family,
I am thankful for you today!
You keep me from feeling lonely and hopeless! You buoy my spirit with your prayers ,positive messages, friendship and love.
I wish to thank Chuck, Eric, Ellen, KC and Paul and Mary for their recent visits. Also thanks to Bob Tim, Ellen, Loraine, Kathir, Robert, Lida, Andy, Bari and others for your recent messages and cards.
.
I am very thankful for my caregivers, especially Kim and Jean who have to put up with my Gemini moodiness and sacrifice so much. Kim is so strong even when I am having a bad day and grouchy.She has so much on her plate working full-time managing a department, taking care of me, managing the bills, managing the house renovations, organizing the aide schedules wth 3 different companies, and getting up to deal with my needs in the middle of the night, and dealing with her own medical issues. To say that her plate is full is an understatement!
The house renovations are going very slow and I am frustrated. I think we will be lucky if we get in before the end of December.
I am thankful for you today!
You keep me from feeling lonely and hopeless! You buoy my spirit with your prayers ,positive messages, friendship and love.
I wish to thank Chuck, Eric, Ellen, KC and Paul and Mary for their recent visits. Also thanks to Bob Tim, Ellen, Loraine, Kathir, Robert, Lida, Andy, Bari and others for your recent messages and cards.
.
I am very thankful for my caregivers, especially Kim and Jean who have to put up with my Gemini moodiness and sacrifice so much. Kim is so strong even when I am having a bad day and grouchy.She has so much on her plate working full-time managing a department, taking care of me, managing the bills, managing the house renovations, organizing the aide schedules wth 3 different companies, and getting up to deal with my needs in the middle of the night, and dealing with her own medical issues. To say that her plate is full is an understatement!
The house renovations are going very slow and I am frustrated. I think we will be lucky if we get in before the end of December.
Tuesday, November 10, 2015
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.
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.
Monday, November 9, 2015
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.
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.
Monday, October 12, 2015
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!
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!
Thursday, August 27, 2015
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
Friday, July 17, 2015
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.
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.
Saturday, July 11, 2015
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!
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!
Friday, June 12, 2015
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.
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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.
C 
TT
Wednesday, June 3, 2015
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!
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.
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.
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.
Tuesday, May 26, 2015
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.
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.
Monday, May 25, 2015
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.
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.
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.
Wednesday, May 20, 2015
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.
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
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| 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.
Friday, May 15, 2015
I Love to Read Books with Flawed Main Characters!
I mentioned previously that I am rereading many of my all time favorite series of fiction books. They all have one thing in common - a flawed main character who rises to the occasion and surpasses their own limitations and expectations. What does that say about my character? I was hooked by the first book in each series!
I am currently halfway through book 7 of the 10 book Chronicles of Thomas Covenant fantasy series by Stephen R. Donaldson. Thomas Covenant is a leper. The first book was published in 1977 and the last one in 2013. Before that I read Mordant's Need, a 2-volume series by Donaldson with Geraden as the main character. Geraden can't do anything right. Donaldson also has a 5-book series (The Gap) based in Outer Space. The Gap is very dark and I don't recommend for teenagers.
Other series and authors that I love and am planning to reread:
Opus, Berkeley Breathed - okay, Opus is a cartoon character who can't fly but you gotta love the humor! Dilbert is another favorite!
Odd Thomas, Dean Koontz - Odd sees dead people and the first book was made into a movie
Fortress Series, C. J. Cherryh - Tristen becomes a sorcerer eventually
Stephanie Plum, Janet Evanovich - if I was drinking something while reading about the misadventures of Stephanie and Lula I would have snorted it out my nose! I laugh out loud!
Bernie and Chet Series, Spencer Quinn - detective mysteries told from the viewpoint of canine crime solver Chet the Jet
A Game Of Thrones, George R.R. Martin - Also very dark and not for teenagers! I was a fan after the first book, which was released long before this series became popular on Showtime! With 2 books left to finish the series and George's health issues I'm not certain that either of us will be around to finish the last book. All of the characters are flawed but my favorite characters are Bran and Arya Stark, Jon Snow, and Tyrion Lannister.
Already read in addition to those listed above:
Christopher Snow series, Dean Koontz - Chris has XP and can only come out of his house at night
I have many other authors I have enjoyed collecting and reading which I will talk about in a future post.
This past weekend was the AAUW used book sale at PSU and this was the first year I didn't go in many years. I usually take my alphabetized missing books list for each author and try to fill in the gaps. Paperbacks range from $0.50-$2 and hardbacks from $2-$4, and the sale is always Mother's Day Weekend. If you live within 100 miles and are a book lover like me, this sale is not to be missed!
I am currently halfway through book 7 of the 10 book Chronicles of Thomas Covenant fantasy series by Stephen R. Donaldson. Thomas Covenant is a leper. The first book was published in 1977 and the last one in 2013. Before that I read Mordant's Need, a 2-volume series by Donaldson with Geraden as the main character. Geraden can't do anything right. Donaldson also has a 5-book series (The Gap) based in Outer Space. The Gap is very dark and I don't recommend for teenagers.
Other series and authors that I love and am planning to reread:
Opus, Berkeley Breathed - okay, Opus is a cartoon character who can't fly but you gotta love the humor! Dilbert is another favorite!
Odd Thomas, Dean Koontz - Odd sees dead people and the first book was made into a movie
Fortress Series, C. J. Cherryh - Tristen becomes a sorcerer eventually
Stephanie Plum, Janet Evanovich - if I was drinking something while reading about the misadventures of Stephanie and Lula I would have snorted it out my nose! I laugh out loud!
Bernie and Chet Series, Spencer Quinn - detective mysteries told from the viewpoint of canine crime solver Chet the Jet
A Game Of Thrones, George R.R. Martin - Also very dark and not for teenagers! I was a fan after the first book, which was released long before this series became popular on Showtime! With 2 books left to finish the series and George's health issues I'm not certain that either of us will be around to finish the last book. All of the characters are flawed but my favorite characters are Bran and Arya Stark, Jon Snow, and Tyrion Lannister.
Already read in addition to those listed above:
Christopher Snow series, Dean Koontz - Chris has XP and can only come out of his house at night
I have many other authors I have enjoyed collecting and reading which I will talk about in a future post.
This past weekend was the AAUW used book sale at PSU and this was the first year I didn't go in many years. I usually take my alphabetized missing books list for each author and try to fill in the gaps. Paperbacks range from $0.50-$2 and hardbacks from $2-$4, and the sale is always Mother's Day Weekend. If you live within 100 miles and are a book lover like me, this sale is not to be missed!
Thursday, May 14, 2015
Food!
With my weak jaws, degrading teeth due to constant clenching and grinding, and impaired swallowing capabilities, I am on a fairly limited diet and have been for months.
I have a lot of cravings that I can't indulge in. Pizza, cheese and crackers, potato chips, a chocolate bar, a sizzling steak, toast with butter and jelly, a stuffed omelet, a Philly cheesesteak, the list goes on and on.
Kim comes home for lunch every day to check in on us and to have a quick bite and to give me a Nutren 2.0 supplement. Most days she has a hot ham and cheese sandwich and some chips. I often sit there looking at what she is eating and wish I could take a big bite! The smell of the open bag of chips makes my mouth water.
For many months I made two eggs over easy before I went to work. They were easier to eat than the cereal, oatmeal or breakfast bars I ate every morning at work for many years. I ate a lot of soup or subway sandwiches for lunch. I ate sushi as often as I had a chance. I loved spicy food - Mexican, Chinese, Thai, the hotter the better. These days the only seasonings I use are butter, salt, sour cream, and every once in a while a little ketchup.
I was a pretty good cook. Mom taught all of us to bake and cook before we left home. I fixed food in a Mexican restaurant in Sunnyside called the Foxfire for over a year with my friend Tom Leachman and many talented cooks while I was in college. Sunday mornings at the Foxfire I was the sous chef for John Kiska for brunch. I learned how to cook and season food without making it too spicy hot so that Kim and my in laws would eat it. I must have made fresh salsa ala Foxfire more than 200 times over the last 28 years that Kim and I have been together, along with hundreds of pounds of chicken and beef burritos/tacos, refried beans (special ingredient cinnamon), hundreds of chicken parmigiana, and countless other favorites. Today I can't even hold a knife!
These days, everything I eat is either soft to begin with, mashed, or pureed in a food processor. I can't tolerate spicy food, don't use pepper (my favorite seasoning), can't drink coffee or hot tea, and don't drink tap water. I drink mostly Perrier or Other fizzy water (swallow easier for some reason).
For breakfast, I typically eat two eggs over easy, yogurt with pureed fruit, cream of wheats, or a smoothie. For lunch, tuna fish salad, chicken salad, soup, or cottage cheese with some fruit and flax oil. For dinner, I usually have some combination of pureed meat in gravy, steamed spinach, mashed potatoes, sweet potatoes, spaghetti squash and pasta sauce, apple sauce, etc. Every so often I treat myself to some Wegmans sushi, which isn't too bad pureed. I was doing almost weekly when they had their wild salmon sushi, now not as often. I don't eat a large volume since my jaws, arms, and hands are weak and the muscles get tired quickly. I would like to get more veggies into my diet but it is difficult to do.
Jean makes me a milkshake everyday to add calories. Thank you! Kim and Jean worry that I am not getting enough to eat. I rarely have much of an appetite and don't get much pleasure from eating.
I have a lot of cravings that I can't indulge in. Pizza, cheese and crackers, potato chips, a chocolate bar, a sizzling steak, toast with butter and jelly, a stuffed omelet, a Philly cheesesteak, the list goes on and on.
Kim comes home for lunch every day to check in on us and to have a quick bite and to give me a Nutren 2.0 supplement. Most days she has a hot ham and cheese sandwich and some chips. I often sit there looking at what she is eating and wish I could take a big bite! The smell of the open bag of chips makes my mouth water.
For many months I made two eggs over easy before I went to work. They were easier to eat than the cereal, oatmeal or breakfast bars I ate every morning at work for many years. I ate a lot of soup or subway sandwiches for lunch. I ate sushi as often as I had a chance. I loved spicy food - Mexican, Chinese, Thai, the hotter the better. These days the only seasonings I use are butter, salt, sour cream, and every once in a while a little ketchup.
I was a pretty good cook. Mom taught all of us to bake and cook before we left home. I fixed food in a Mexican restaurant in Sunnyside called the Foxfire for over a year with my friend Tom Leachman and many talented cooks while I was in college. Sunday mornings at the Foxfire I was the sous chef for John Kiska for brunch. I learned how to cook and season food without making it too spicy hot so that Kim and my in laws would eat it. I must have made fresh salsa ala Foxfire more than 200 times over the last 28 years that Kim and I have been together, along with hundreds of pounds of chicken and beef burritos/tacos, refried beans (special ingredient cinnamon), hundreds of chicken parmigiana, and countless other favorites. Today I can't even hold a knife!
These days, everything I eat is either soft to begin with, mashed, or pureed in a food processor. I can't tolerate spicy food, don't use pepper (my favorite seasoning), can't drink coffee or hot tea, and don't drink tap water. I drink mostly Perrier or Other fizzy water (swallow easier for some reason).
For breakfast, I typically eat two eggs over easy, yogurt with pureed fruit, cream of wheats, or a smoothie. For lunch, tuna fish salad, chicken salad, soup, or cottage cheese with some fruit and flax oil. For dinner, I usually have some combination of pureed meat in gravy, steamed spinach, mashed potatoes, sweet potatoes, spaghetti squash and pasta sauce, apple sauce, etc. Every so often I treat myself to some Wegmans sushi, which isn't too bad pureed. I was doing almost weekly when they had their wild salmon sushi, now not as often. I don't eat a large volume since my jaws, arms, and hands are weak and the muscles get tired quickly. I would like to get more veggies into my diet but it is difficult to do.
Jean makes me a milkshake everyday to add calories. Thank you! Kim and Jean worry that I am not getting enough to eat. I rarely have much of an appetite and don't get much pleasure from eating.
Wednesday, May 13, 2015
Update
It's been over a week since my last post, and I have no excuse!
Last week we started home health care 2 days a week, Monday and Thursday mornings from 8:30-12:30. My aide's name is Stacie, she is 23 and lives in Spring Mills, about 30 minutes away. She helps me shower and dress, does laundry, runs the vacuum and dusts, cleans my bathroom, and helps with food preparation.
We were supposed to close on our condo on Friday, but the mortgage is still in underwriting, so probably will move to early next week. We walked through with our realtor Kris Hanahan and a contractor last week to discuss renovations but haven't received his estimates yet. I estimated it myself and came up with $86K to redo the kitchen, master bath, replace sliding glass door to the patio with a French door, paint everywhere, replace all flooring, add a fireplace, and window treatments.
I had another fall last Thursday night in the bathroom around 11:30 as I was getting ready for bed. I did something stupid! I was standing in the middle of the bathroom not holding onto anything or leaning against anything trying to put a fresh piece of tape on my stomach to hold the feeding tube. I had pulled up my shirt, grabbed a piece of tape and was looking down at my stomach trying to tape it on when I lost my balance. Fortunately I fell sideways into the shower instead of the sink and granite countertop! I fell into the shower curtain before falling to the floor of the low entry shower, bruising my hip and wrenching my left shoulder. Fortunately Kim heard me and came charging upstairs to my rescue!
Ellen came for weekly visit on Friday and KC and Paul came for a visit Saturday afternoon. It was beautiful out both days so we spent some time both days on the patio catching some rays!
After 2 attempts to have a king mattress delivered ASAP to replace the waterbed, Kim has a new bed to sleep on! We were able to reuse the bed frame and got box springs and a new king pillow top mattress delivered and the waterbed removed for less than $800 from Tubbies Waterbed within 24 hours of ordering after the first company failed to deliver on Tuesday as promised.
My dad and I were debating a trip to Boston this weekend but decided to postpone until June when Kim can go with us and cousin Hilary will be home visiting from Ireland. We will celebrate my birthday and Fathers Day while we are there and Hilary's birthday is June 24th so we will celebrate her as well!
The 2015 Hershey ALS Walk for the Cure is 3.5 weeks away on June 6. I sent a goodbye and thank you email to my Baker colleagues yesterday and several people have signed up as a result. My family is coming in town from Denver, Charlotte, Grand Junction, and Kansas City. With my mom, brothers Forest and Chuck, Chuck's wife Leigh, sons Elijah and Benjamin, daughter Amelia, Aunt Geneva, and cousins Frank and Loraine, there will be a boatload of the Knudsons/Cooleys as well as the Harrises there to support us.
My physical condition is worse this week. I am having trouble standing up from a sitting position, and my legs, arms, and hands are weaker. I grieve for my lost capabilities that people take for granted. Jeans window in the family room overlooks Westerly Parkway and there are always people walking dogs, running and bicycling along the sidewalks. What I wouldn't give to be able to join them! It is time to think about a hospital bed, wheelchair, and lift chair and the additional help I I'll need as I continue to get weaker.
My friend Ellen talked to her pastor and I will email her to set up a time to come for a visit next week.
Mentally and emotionally I am doing okay. The Skypes with family, visits from friends, and emails do a lot to cheer me up and raise my spirits. Kim and I try hard to be happy for each other but it is difficult some days. It is difficult to be happy when all you can do is sit and read, go online, or watch Tv.w
Last week we started home health care 2 days a week, Monday and Thursday mornings from 8:30-12:30. My aide's name is Stacie, she is 23 and lives in Spring Mills, about 30 minutes away. She helps me shower and dress, does laundry, runs the vacuum and dusts, cleans my bathroom, and helps with food preparation.
We were supposed to close on our condo on Friday, but the mortgage is still in underwriting, so probably will move to early next week. We walked through with our realtor Kris Hanahan and a contractor last week to discuss renovations but haven't received his estimates yet. I estimated it myself and came up with $86K to redo the kitchen, master bath, replace sliding glass door to the patio with a French door, paint everywhere, replace all flooring, add a fireplace, and window treatments.
I had another fall last Thursday night in the bathroom around 11:30 as I was getting ready for bed. I did something stupid! I was standing in the middle of the bathroom not holding onto anything or leaning against anything trying to put a fresh piece of tape on my stomach to hold the feeding tube. I had pulled up my shirt, grabbed a piece of tape and was looking down at my stomach trying to tape it on when I lost my balance. Fortunately I fell sideways into the shower instead of the sink and granite countertop! I fell into the shower curtain before falling to the floor of the low entry shower, bruising my hip and wrenching my left shoulder. Fortunately Kim heard me and came charging upstairs to my rescue!
Ellen came for weekly visit on Friday and KC and Paul came for a visit Saturday afternoon. It was beautiful out both days so we spent some time both days on the patio catching some rays!
After 2 attempts to have a king mattress delivered ASAP to replace the waterbed, Kim has a new bed to sleep on! We were able to reuse the bed frame and got box springs and a new king pillow top mattress delivered and the waterbed removed for less than $800 from Tubbies Waterbed within 24 hours of ordering after the first company failed to deliver on Tuesday as promised.
My dad and I were debating a trip to Boston this weekend but decided to postpone until June when Kim can go with us and cousin Hilary will be home visiting from Ireland. We will celebrate my birthday and Fathers Day while we are there and Hilary's birthday is June 24th so we will celebrate her as well!
The 2015 Hershey ALS Walk for the Cure is 3.5 weeks away on June 6. I sent a goodbye and thank you email to my Baker colleagues yesterday and several people have signed up as a result. My family is coming in town from Denver, Charlotte, Grand Junction, and Kansas City. With my mom, brothers Forest and Chuck, Chuck's wife Leigh, sons Elijah and Benjamin, daughter Amelia, Aunt Geneva, and cousins Frank and Loraine, there will be a boatload of the Knudsons/Cooleys as well as the Harrises there to support us.
My physical condition is worse this week. I am having trouble standing up from a sitting position, and my legs, arms, and hands are weaker. I grieve for my lost capabilities that people take for granted. Jeans window in the family room overlooks Westerly Parkway and there are always people walking dogs, running and bicycling along the sidewalks. What I wouldn't give to be able to join them! It is time to think about a hospital bed, wheelchair, and lift chair and the additional help I I'll need as I continue to get weaker.
My friend Ellen talked to her pastor and I will email her to set up a time to come for a visit next week.
Mentally and emotionally I am doing okay. The Skypes with family, visits from friends, and emails do a lot to cheer me up and raise my spirits. Kim and I try hard to be happy for each other but it is difficult some days. It is difficult to be happy when all you can do is sit and read, go online, or watch Tv.w
Sunday, May 3, 2015
Waterbed Leaks
Kim got up yesterday morning and when she came upstairs she had a distraught look on her face. When she pulled the sheets off the bed to wash them they were wet. Turns out the waterbed mattress on her side has been leaking. We bought it in 1996 so it is almost 20 years old and has been in our bedroom in the basement for at least 10 years.
We briefly debated trying to patch it but decided it would be too difficult.
Jean has a king size bed so we will buy her a new mattress and move her old one downstairs for Kim to sleep on. We drained the leaking mattress and cleaned out the water in the liner using a wet vac. Kim will sleep on my side of the waterbed until a new mattress is delivered. We will go shopping today.
I went downstairs to supervise, first time I did the basement stairs in 2 months. It didn't go very well. I am much weaker now than 2 months ago and I won't be doing that again any time soon.
One benefit was Kim didn't sleep well last night and early this morning crawled into the double bed with me. We held hands and slept until 7:30. That was the first time we slept in the same bed in 2 months.
Home health starts tomorrow. We'll start with 4 hours Monday and Thursday mornings and add hours as needed. A long term care nurse will visit Wednesday to do an assessment and after a 12-week elimination period the insurance company will start to pay up to $283/day. I need to make a list of activities today for the home health aide to help with in addition to bathing and dressing.
I'll Skype with my family later today. We need to discuss plans for the Hershey ALS Walk in 5 weeks and dad and I are planning for him to visit in 2 weeks and will attempt a trip to Boston to visit my uncle and his family.
We briefly debated trying to patch it but decided it would be too difficult.
Jean has a king size bed so we will buy her a new mattress and move her old one downstairs for Kim to sleep on. We drained the leaking mattress and cleaned out the water in the liner using a wet vac. Kim will sleep on my side of the waterbed until a new mattress is delivered. We will go shopping today.
I went downstairs to supervise, first time I did the basement stairs in 2 months. It didn't go very well. I am much weaker now than 2 months ago and I won't be doing that again any time soon.
One benefit was Kim didn't sleep well last night and early this morning crawled into the double bed with me. We held hands and slept until 7:30. That was the first time we slept in the same bed in 2 months.
Home health starts tomorrow. We'll start with 4 hours Monday and Thursday mornings and add hours as needed. A long term care nurse will visit Wednesday to do an assessment and after a 12-week elimination period the insurance company will start to pay up to $283/day. I need to make a list of activities today for the home health aide to help with in addition to bathing and dressing.
I'll Skype with my family later today. We need to discuss plans for the Hershey ALS Walk in 5 weeks and dad and I are planning for him to visit in 2 weeks and will attempt a trip to Boston to visit my uncle and his family.
Saturday, May 2, 2015
I've Fallen and I Can't Get Up
Thursday night I went to the bathroom to get ready for bed after Jean was already in bed and Kim went downstairs to get ready for bed. I went into the recliner room to read and somehow lost my balance after I let go of my rollator walker. It was a slow motion fall. As my legs gave way I ended up partway in the desk chair and thought I might catch myself, but then fell off the seat and onto the floor, rolling backward. My head hit the carpet gently and missed the desk, fortunately.
Unfortunately, I couldn't get off the floor. I tried pounding on the floor with my heels as my fists don't generate much force these days. I tried yelling, but Jean's door was closed with the TV on and Kim was in the bathroom running water. I sent Kim an email expecting she would check her account on her iPad downstairs before turning off the lights and going to sleep.
I was eventually able to wriggle around so that my back was against the recliner, and tried to use the chair get my knees under me so I could use the chair to stand up, but my arms and legs were too weak. I continued yelling and pounding on the floor with my heels.
After what seemed like 30 minutes, but was probably only 15, I was starting to think I would spend the night on the floor. Eventually Kim heard me pounding on the floor and came to my rescue. We were able to get me on my knees after several attempts and then get me up and into the recliner after which I had an emotional breakdown. Eventually I calmed down and Kim made me take a lorazepam to help. After we cried and commiserated for a while I sent her back down to bed and told her I loved her and would be okay.
That night I placed an Amazon order for a waist belt to make it easier to lift me and a panic button I can wear around my neck that will notify someone in the house that I need assistance.
Unfortunately, I couldn't get off the floor. I tried pounding on the floor with my heels as my fists don't generate much force these days. I tried yelling, but Jean's door was closed with the TV on and Kim was in the bathroom running water. I sent Kim an email expecting she would check her account on her iPad downstairs before turning off the lights and going to sleep.
I was eventually able to wriggle around so that my back was against the recliner, and tried to use the chair get my knees under me so I could use the chair to stand up, but my arms and legs were too weak. I continued yelling and pounding on the floor with my heels.
After what seemed like 30 minutes, but was probably only 15, I was starting to think I would spend the night on the floor. Eventually Kim heard me pounding on the floor and came to my rescue. We were able to get me on my knees after several attempts and then get me up and into the recliner after which I had an emotional breakdown. Eventually I calmed down and Kim made me take a lorazepam to help. After we cried and commiserated for a while I sent her back down to bed and told her I loved her and would be okay.
That night I placed an Amazon order for a waist belt to make it easier to lift me and a panic button I can wear around my neck that will notify someone in the house that I need assistance.
Friday, May 1, 2015
Old and New Friends Visit
Last Saturday the Spokanes and the Hanahans came to visit. Dave Spokane, Kris Palmieri Hanahan, Tracy Hanahan, Kim and I all worked for HRB Singer here in State College in the mid-late 1980's. I worked on the B-2 Bomber simulator, then was assigned to the PSU Applied Research Lab. Both projects involved manipulating and displaying geographic information, which was the stepping stone to my career in the geospatial industry.
Dave and Julie Spokane and my pen pal daughter Olivia drove down from Nashua, NH to visit son Matt who attends Penn College in Williamsport. Kris and Tracy joined us for lunch - pizzas from Hiway Pizza, including a red stuffed pizza, my favorite.
Olivia and I started emailing after she donated money to the ALS Association last year in my honor, and is a beautiful, sweet, smart, and very energetic young lady! Matt is a very nice young man and he had us laughing often.
Kris and I worked together after HRB at Keystone Management Systems, a transportation GIS company/startup in downtown State College, and Kris is our realtor in State College. Kris and Dave both graduated at the same time in Computer Engineering at the Rochester Institute of Technology.
We had a wonderful visit and Olivia entertained us with her gymnastics outside when she grew bored sitting and listening to the conversation. We laughed a lot until everyone's cheeks hurt. It was wonderful time and the hours passed by quickly. It is a blessing to Kim and I to have reconnected with our old friends and made some new ones!
Thank you!
Dave and Julie Spokane and my pen pal daughter Olivia drove down from Nashua, NH to visit son Matt who attends Penn College in Williamsport. Kris and Tracy joined us for lunch - pizzas from Hiway Pizza, including a red stuffed pizza, my favorite.
Kris and I worked together after HRB at Keystone Management Systems, a transportation GIS company/startup in downtown State College, and Kris is our realtor in State College. Kris and Dave both graduated at the same time in Computer Engineering at the Rochester Institute of Technology.
We had a wonderful visit and Olivia entertained us with her gymnastics outside when she grew bored sitting and listening to the conversation. We laughed a lot until everyone's cheeks hurt. It was wonderful time and the hours passed by quickly. It is a blessing to Kim and I to have reconnected with our old friends and made some new ones!
Thank you!
Wednesday, April 29, 2015
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.
“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.
Tuesday, April 28, 2015
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.
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.
Tuesday, April 21, 2015
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.
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.
Sunday, April 19, 2015
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
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
Friday, April 17, 2015
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.
Sunday, April 12, 2015
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.
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!
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!
Saturday, April 11, 2015
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!
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!
Tuesday, April 7, 2015
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!
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!
Saturday, March 14, 2015
Long Overdue Update for Surgery and 4th ALS Clinic on 3/11
Kim and I sold the house in Mechanicsburg and closing is 4/10. Movers will be coming on 4/6 to pack us and 4/7 to move our belongings into storage. We have been looking for a house in State College but the market is a tough one. We will stay with my mother in law until we find something that will work for us.
Most of the week before and after my NeuRx diaphragm pacing system and PEG feeding tube surgery on 3/3 I spent a lot of time on Facebook asking for prayers and neglected my blog. I was very nervous as I only had one surgery previously and it was outpatient. I have included those posts here for readers who aren't my friends on Facebook. I was overwhelmed by the response of my Facebook family keeping me in their prayers!
3/2
Tonight we drive down to Mechanicsburg to get ready for my surgery Tuesday morning at 7:30AM to have a feeding tube installed as well as a diaphragm pacemaker to help my breathing since ALS has weakened my muscles.
If all goes well, I'll be back in State College Wednesday afternoon/evening and back online Thursday. I am scared.
Prayers requested for me, my wife Kim, our families, and the doctors, anesthesiologists, and caregivers at Hershey Med Center.
3/3, 1:49PM (we were at the hospital at 6, surgery was scheduled to begin at 7:30AM)
in my room, some discomfort, mostly because nothing to drink yet and can't breathe through right nostril. this too shall pass. your prayers took away my fears and helped me through it. love and thanks to all!
3/3, 7:04PM
Had a major pain spike in my left shoulder just after Kim and Kelly left (the diaphragm is connected to the shoulder?) that was a 10 out of 10 but Nurse Mindy came in and gave me something that stung when it went in my IV but quickly took the edge off and back down to a 3. Nurse Hannah worked the night shift and male nurse So came in the morning. All were very compassionate and caring. They closed my door to block out the light and noise to help me rest better. The hospital is not a good place to try to catch up on sleep!
3/4 7:29PM
Got home to State College at 2:30 today. The 2 hour drive on rough winter roads left me stiff and in a lot of pain. Had some dinner and moving around a little bit and feeling better. Still having severe pain in my left shoulder from the air pumped into my abdomen for the laparoscopic diaphragm pacer procedure, and the area around my feeding tube is very painful. Very grateful to be home and for the outpouring of all the love and prayers from my Facebook family! Dozed only briefly last night so a few hours of sleep tonight should help tremendously!
3/5, Noon
I slept well last night, up several times for meds or to go to the bathroom, but able to sleep deeply and dream. Your prayers work, and I thank you all from the bottom of my heart. Pain is much better today.
3/6, 6:16PM
Didn't sleep as well last night, afraid I wouldn't make it to the bathroom in time. Things finally resolved themselves successfully mid morning and I am feeling so much better I stopped taking any pain meds. Three successful tube feedings today so far and doing my second diaphragm pacing session now. When the pacer fires it feels like a rotary phone dial being turned in my lower abdomen. Have to do it 4-5 times a day and at the end of 4 weeks they want each session to be... a minimum of 2 hours each session.
Fourth quarterly ALS clinic is next week and they will check all of my surgery "scars" and make any necessary adjustments to the feeding tube and diaphragm pacer.
Will provide some updates and post some pictures of my new appendages on my blog this weekend. Thanks again for all of your loving and prayerful support for me and Kim and our families this week!
3/7, 10:46AM
Will provide some updates and post some pictures of my new appendages on my blog this weekend. Thanks again for all of your loving and prayerful support for me and Kim and our families this week!
3/7, 10:46AM
I slept much better last night! Dealing with several issues. First is sinus congestion. Needed to sit up straighter last night to breathe better.
Second, the recliner I'm trying to sleep in is manual, not quite long enough, and the lever is on the right. I have trouble working the mechanism since my right arm and hand is the weaker of the two. Also, the back doesn't lock in one position.
I slept good for more than 2 hours then woke up around 11:45 and watched the clo...ck for a few hours trying to get into a comfortable position and breathe through my nose. Around 2AM I got the leg rest down without waking Kim and went to the bathroom. When I came back to the room I decided to leave the recliner upright and pulled the office chair over to support my legs and feet. After that I slept well until 8:30 when I got up.
Second, the recliner I'm trying to sleep in is manual, not quite long enough, and the lever is on the right. I have trouble working the mechanism since my right arm and hand is the weaker of the two. Also, the back doesn't lock in one position.
I slept good for more than 2 hours then woke up around 11:45 and watched the clo...ck for a few hours trying to get into a comfortable position and breathe through my nose. Around 2AM I got the leg rest down without waking Kim and went to the bathroom. When I came back to the room I decided to leave the recliner upright and pulled the office chair over to support my legs and feet. After that I slept well until 8:30 when I got up.
Kim was happy since I didn't have to interrupt her sleep for the first time since I came home from the hospital. :)
Going to have to decide on a hospital bed or an electric recliner designed for sleeping.
Hershey Medical Center Experience
Overall, I had a very good experience with the surgery and hospital staff! I had a fair amount of pain but they took good care of me. The NeuRx DPS representative was very informative and we felt comfortable with leaving the hospital to return home. They sent us home with a week's supply of bandages, alcohol wipes, gauze pads, and a month's worth of formula (Nutren 2.0) for my feeding tube.
I woke up with a girdle on in my hospital bed to keep everything buttoned up and protected and only stopped wearing a girdle today after my shower. I now have a Velcro PEG Tube strap that keeps my tube coiled up and contained.
4th ALS Clinic on 3/10
Kim and I drove down Tuesday night and spent the night at our house in Mechanicsburg. She had arranged for the 2 potential movers to come and do an estimate for packing and moving our household into storage for up to 5 months. Unfortunately one of them showed up 2 hours late so Kim wasn't able to go to clinic with me. It was a very long afternoon. I was at the clinic at 11:10 and didn't get home until 4:30PM! And didn't have anything to eat the whole time I was there.
Both my PEG feeding tube and DPS surgical scars are healing very well. I thought Dr. Raheja would crank up the power on the DPS higher than the initial setting in the hospital but she indicated we would wait until my post surgery check on 4/11.
Because I have the most trouble breathing at night, they are ordering a bipap device to use at night to improve my sleeping.
Going to have to decide on a hospital bed or an electric recliner designed for sleeping.
Hershey Medical Center Experience
Overall, I had a very good experience with the surgery and hospital staff! I had a fair amount of pain but they took good care of me. The NeuRx DPS representative was very informative and we felt comfortable with leaving the hospital to return home. They sent us home with a week's supply of bandages, alcohol wipes, gauze pads, and a month's worth of formula (Nutren 2.0) for my feeding tube.
I woke up with a girdle on in my hospital bed to keep everything buttoned up and protected and only stopped wearing a girdle today after my shower. I now have a Velcro PEG Tube strap that keeps my tube coiled up and contained.
Home health care stopped in on Thursday to teach us how to use the PEG feeding tube and my weight is starting to stabilize. I lost more than 20 lbs in 2 months, which wasn't good. I now get 4 tube feedings a day of a carton of Nutrena 2.0, which is 2000 calories. The rest I try to get from eating, although I can only eat soft or blenderized foods at this point. Home health care will now come on Mondays and Thursdays to check in and see how we are doing.
I still suffer some left shoulder pain throughout the day, but it is nowhere near as bad as last week. I still have some extra gas in my chest that doesn't belong there and the diaphragm pacemaker can aggravate it also. Apparently there are nerves between the diaphragm and the shoulders and stimulating the diaphragm muscle with the pacing system can aggravate the shoulder nerves. I have to work up to 8 hours of pacing by the end of week 4 and then they will start raising the current level on the device. Eventually I will be using it fulltime.
Kim was very tentative helping me at first with cleaning surgical sites, feeding, and taking care of the DPS, but after a week and a half is very experienced, unafraid, and efficient.
Kim was very tentative helping me at first with cleaning surgical sites, feeding, and taking care of the DPS, but after a week and a half is very experienced, unafraid, and efficient.
4th ALS Clinic on 3/10
Kim and I drove down Tuesday night and spent the night at our house in Mechanicsburg. She had arranged for the 2 potential movers to come and do an estimate for packing and moving our household into storage for up to 5 months. Unfortunately one of them showed up 2 hours late so Kim wasn't able to go to clinic with me. It was a very long afternoon. I was at the clinic at 11:10 and didn't get home until 4:30PM! And didn't have anything to eat the whole time I was there.
Both my PEG feeding tube and DPS surgical scars are healing very well. I thought Dr. Raheja would crank up the power on the DPS higher than the initial setting in the hospital but she indicated we would wait until my post surgery check on 4/11.
Good news is that my lung capacity is about 72%. It was 84 in December. When they tested it pre surgery they measured it at 52. Apparently that is because my mouth doesn't make a strong seal on the breathing device, which is similar to a toilet paper tube roll. We used a mask yesterday to get a more accurate reading. So my forced vital capacity score didn't go down as much as originally feared.
My legs, hands and arms are noticeably and measurably weaker. My right hand strength measured 40+ pounds in December and was 20+ yesterday. I can barely write my signature and using a mouse and keyboard is much more difficult than it was. My left hand is still much better but hand strength dropped from 80+ pounds to 60+.
Physical therapy has proposed switching from the cane to a rollator walker since my legs and arms are weaker.
I talked to the doctor about a release to allow me to return to work part time next week but am still waiting for the release.
The past 2 weeks were the longest I went without a shower or shaving in a long time. Hope to get into a more regular schedule soon. Kim was sleeping across the hall for the first week but has moved back downstairs to allow me to sleep in the upstairs bed. Sleeping separately is very difficult for me but I recognize that it is best for Kim to allow her to get enough sleep.
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