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.
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