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!
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