Jim has passed. It was very sudden, but very peaceful. I can't imagine a world without him in it, but the sun did come up this morning.
We are having a get together on Sunday (6/5) afternoon from 2 - 4 at The Penn Stater in State College to celebrate Jim's life. Please feel welcome to come and share our grief and joy.
Kim
Thursday, June 2, 2016
Tuesday, March 29, 2016
March Update
I have been trying to type a new post for several weeks but have had difficulty sitting upright and getting a good calibration with weakening neck muscles. I have started using a neck pillow to support head positioning when I sit in my recliner lift chair. We identified a new stand that will fit around my recliner and ordered it last week. Has to ship from Germany and will take about two weeks. It is expensive, almost $1000.
The big news is that the movers are came on Friday to move our stuff out of storage after 12 months to the new house whether Dave was finished with the renovations or not. When we built our house in Mechanicsburg it took less time than the renovations. It will take a few days to unpack to the point we can move in and have to move my hospital bed and other equipment.
The most exciting part for me is to be able to take a shower for the first time in 7 months. We also installed a ceiling lift and 3 tracks for the bedroom, bathroom, and family room to eliminate manual transfers and the number of body slams I endure on a daily basis. Kim, Jean, Kelly and KC have been busy unpacking the last few days and Verizon came Saturday to hook up our TVs ss
Chuck came for a visit earlier this month and Forest did also. Dad will come for a visit in two weeks and will be our first guest in our new home.
Our new address will be:
1244 Westerly Parkway, Apt.28
State College,PA 16801
The big news is that the movers are came on Friday to move our stuff out of storage after 12 months to the new house whether Dave was finished with the renovations or not. When we built our house in Mechanicsburg it took less time than the renovations. It will take a few days to unpack to the point we can move in and have to move my hospital bed and other equipment.
The most exciting part for me is to be able to take a shower for the first time in 7 months. We also installed a ceiling lift and 3 tracks for the bedroom, bathroom, and family room to eliminate manual transfers and the number of body slams I endure on a daily basis. Kim, Jean, Kelly and KC have been busy unpacking the last few days and Verizon came Saturday to hook up our TVs ss
Chuck came for a visit earlier this month and Forest did also. Dad will come for a visit in two weeks and will be our first guest in our new home.
Our new address will be:
1244 Westerly Parkway, Apt.28
State College,PA 16801
Monday, February 22, 2016
February Update
It has been a log time since I posted an update because I have had difficulty using the eye gaze system and I have been depressed for many months.
I received my own eye gaze system about six weeks ago and Jessica and Megan from PSU came over a couple weeks later to help adjust it and it was working great. Then the lady from PRC came in to pick up her loaner and try to make it work with the floor stand we bought, but it didn't work with my lift chair recliner where I spend my days.
So I am still using my tray table and table stand but she messed up the positioning Jessica had perfected. Every time I get up or reposition have to recalibrate and depending on the height, angle, tilt and glare dictates whether I get a good calibration or not. If I don't get a good calibration then I can't access all the keyboard or all of the screen which frustrates me quickly. Usually all I can do then is use the kindle reader.
I stopped eating at the end of November when I started wearing as much as I was able to swallow because I was no longer able to move the food from the front of my mouth to the back of my mouth. I am still able to drink my Perrier.
I also had an emotional breakdown at the end of November. After spending four months in Bill's mancave and only a window that looks at the house next door and mostly blocked by a shrub I was sick of being isolated and staring at the same four walls. So we moved my recliner out to the family room where I am not isolated and have lots of windows to look out. Waiting for our house to be completed has been more tolerable as a result.
Physically a lot has changed. The muscles in my arms and legs continue to atrophy as he family roomy motor neurons die. I can make small contractual movements but cannot lift them or extend them. I cannot move my fingers at all My cheeks have weakened so my mouth won't stay shut. My mouth dries out quickly resulting in dried saliva leaving a sticky film on my teeth, tongue, and roof of my mouth. During the night this becomes more of a problem when my mouth, throat and airways dry out and I start coughing until someone (Kim) has to get up, swab my mouth, and give me a drink.
My teeth and jaws continue to be a problem as my lower teeth are now digging into the roof of my mouth and shredding the gums behind my upper teeth.
My neck muscles have gotten very weak over the last few months to the point I cannot hold my head up. This makes it more difrficult to use the eye gaze with the table stand. I use a neck brace when I am on the toilet but it doesn't work well and my neck is often torqued at a large angle to the right when the aides don't set me squarely on the commode, which occurs 90% of the time.
I still experience constant muscle tremors and spasms in all of my muscles. Lately my eyes have been affected, making it that much more difficult to use the computer.
Dick's medical came by to let me try a head array to try to operate my power wheelchair but my neck doesn't have enough strength or mobility to operate the switches that control on\/off and chair mode selection (speed, up /down seat control, etc.). I have pretty much given up on being able to operate the chair independently.
The house is getting closer to completion still waiting for kitchen and bathroom sinks and countertops. Hopefully we will move in by the end of March. What we hoped would be an 8-week renovation will end being an 8-month ordeal.
We are going to install some ceiling lifts to reduce and hopefully eliminate manual transfers that are hard on me and the aides. I can barely lock my knees for a second or two before they start to buckle and the two aides have to bear my entire weight. A round trip to the bathroom requires four manual transfers.
I received my own eye gaze system about six weeks ago and Jessica and Megan from PSU came over a couple weeks later to help adjust it and it was working great. Then the lady from PRC came in to pick up her loaner and try to make it work with the floor stand we bought, but it didn't work with my lift chair recliner where I spend my days.
So I am still using my tray table and table stand but she messed up the positioning Jessica had perfected. Every time I get up or reposition have to recalibrate and depending on the height, angle, tilt and glare dictates whether I get a good calibration or not. If I don't get a good calibration then I can't access all the keyboard or all of the screen which frustrates me quickly. Usually all I can do then is use the kindle reader.
I stopped eating at the end of November when I started wearing as much as I was able to swallow because I was no longer able to move the food from the front of my mouth to the back of my mouth. I am still able to drink my Perrier.
I also had an emotional breakdown at the end of November. After spending four months in Bill's mancave and only a window that looks at the house next door and mostly blocked by a shrub I was sick of being isolated and staring at the same four walls. So we moved my recliner out to the family room where I am not isolated and have lots of windows to look out. Waiting for our house to be completed has been more tolerable as a result.
Physically a lot has changed. The muscles in my arms and legs continue to atrophy as he family roomy motor neurons die. I can make small contractual movements but cannot lift them or extend them. I cannot move my fingers at all My cheeks have weakened so my mouth won't stay shut. My mouth dries out quickly resulting in dried saliva leaving a sticky film on my teeth, tongue, and roof of my mouth. During the night this becomes more of a problem when my mouth, throat and airways dry out and I start coughing until someone (Kim) has to get up, swab my mouth, and give me a drink.
My teeth and jaws continue to be a problem as my lower teeth are now digging into the roof of my mouth and shredding the gums behind my upper teeth.
My neck muscles have gotten very weak over the last few months to the point I cannot hold my head up. This makes it more difrficult to use the eye gaze with the table stand. I use a neck brace when I am on the toilet but it doesn't work well and my neck is often torqued at a large angle to the right when the aides don't set me squarely on the commode, which occurs 90% of the time.
I still experience constant muscle tremors and spasms in all of my muscles. Lately my eyes have been affected, making it that much more difficult to use the computer.
Dick's medical came by to let me try a head array to try to operate my power wheelchair but my neck doesn't have enough strength or mobility to operate the switches that control on\/off and chair mode selection (speed, up /down seat control, etc.). I have pretty much given up on being able to operate the chair independently.
The house is getting closer to completion still waiting for kitchen and bathroom sinks and countertops. Hopefully we will move in by the end of March. What we hoped would be an 8-week renovation will end being an 8-month ordeal.
We are going to install some ceiling lifts to reduce and hopefully eliminate manual transfers that are hard on me and the aides. I can barely lock my knees for a second or two before they start to buckle and the two aides have to bear my entire weight. A round trip to the bathroom requires four manual transfers.
Thursday, December 31, 2015
Please Help!
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!
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!
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.
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