I went to Tristan Associates this morning to do a swallow test as a referral from the ENT doctor I saw 2 weeks ago. They flouroscoped my mouth and throat while I ate and drank different items treated with barium. I warned them about my gag reflex and the taste of the barium did set it off. Two fluoroscopes in less than 3 days, I am probably radioactive. I'll ask Kim to check if I glow in the dark tonight.
Regardless, the test indicating that my swallow reflex is still good and I am not aspirating any liquids or food into my lungs, great news. I told the speech pathologist who walked me through the test that the Dr. Fornadley had convinced me to agree to the PEG feeding tube which she agreed was a good idea.
I took Monday - Wednesday off this week for my tests, to spend time with Kim while she was off, and to work on the house. I have a large pile of things in the basement for the Salvation Army to pick up. By the time I get done it should fill up a medium sized truck. I decided not to keep all of my fiction books - I am keeping my favorites but getting read of the rest. I have to get rid of 3 5-shelf bookshelves to get down to the two I plan to move to State College. Mr. Packrat is finally getting rid of the pack!
We've only had one house showing so far. There is another scheduled tomorrow afternoon and a third one Saturday morning. Hopefully we will start to get more traffic and find a motivated buyer soon.
Wednesday, January 28, 2015
Monday, January 26, 2015
Tests passed! Surgery Ahead!
Early this morning I drove to Hershey Med Center for a "Sniff Test" Fluoroscopy X-ray series in the Radiology department and an Arterial Blood Gas test to determine if I am a candidate for the NeuRx Diaphragm Pacing System™ as well as a PEG feeding tube. You have to have adequate diaphragm movement and good lung function prior to the pacer being installed, which is the reason for the two tests. I got the results back this afternoon indicating that I passed both tests, so the next step is to talk to the surgeon.
I wasn't prepared for the long walks from the parking garage to the hospital, then to radiology, and then to the pulmonary center, and back to the garage, and I struggled a bit walking so far - weak leg muscles, not out of breath. I stopped on the way home and bought a lightweight aluminum cane to provide stability when I have to walk a long way or through the ice/snow/salt as I also had to contend with this morning.
They can perform the implantation procedure for both devices in the same surgery in the outpatient center at Hershey, so unless there would be complications I would be home the same day to start recovery. It will take a little bit of time to heal from the procedure, so I would not be able to go to work for a while, but I might be able to work from home. I previously asked if I would be able to swim or go to the beach with either device and was assured that would not be a problem.
I got some indication from work last week that they were willing to consider my request to work from home, so that is great news! They told me that they want me to focus on having the procedures done and whatever recovery is required before worrying about working from home. HR sent me the short term disability forms to fill out and to have my doctor fill out before the procedures are done.
The decision is made, I am moving forward. I wasn't ready in December, but I am now.
Another PALS published some information about a small ALS drug study for Genervon GM604 and started a petition on Change.org to encourage the FDA to fast track the drug for all ALS patients. Genervon is meeting with the FDA next month to discuss this, so please go to the Change.org website and sign the petition: FDA Accelerated Approval of Genervon's GM604 for Use In ALS.
I wasn't prepared for the long walks from the parking garage to the hospital, then to radiology, and then to the pulmonary center, and back to the garage, and I struggled a bit walking so far - weak leg muscles, not out of breath. I stopped on the way home and bought a lightweight aluminum cane to provide stability when I have to walk a long way or through the ice/snow/salt as I also had to contend with this morning.
They can perform the implantation procedure for both devices in the same surgery in the outpatient center at Hershey, so unless there would be complications I would be home the same day to start recovery. It will take a little bit of time to heal from the procedure, so I would not be able to go to work for a while, but I might be able to work from home. I previously asked if I would be able to swim or go to the beach with either device and was assured that would not be a problem.
I got some indication from work last week that they were willing to consider my request to work from home, so that is great news! They told me that they want me to focus on having the procedures done and whatever recovery is required before worrying about working from home. HR sent me the short term disability forms to fill out and to have my doctor fill out before the procedures are done.
The decision is made, I am moving forward. I wasn't ready in December, but I am now.
Another PALS published some information about a small ALS drug study for Genervon GM604 and started a petition on Change.org to encourage the FDA to fast track the drug for all ALS patients. Genervon is meeting with the FDA next month to discuss this, so please go to the Change.org website and sign the petition: FDA Accelerated Approval of Genervon's GM604 for Use In ALS.
Wednesday, January 21, 2015
Feeding Tube and Diaphragm Pacer
I was at Hershey today to talk to the dietitian and consult with the
physical therapist about my legs and my falls.
My weight has dropped and working fulltime it is difficult to maintain
it. I talked to the doctor again about
the surgery for a feeding tube and diaphragm pacer and decided to go for
it.
PT suggested that I buy a lightweight can for stability. Also tried a splint that fits in your shoe and straps around the calf to see if it might stabilize my walking. Walked fine with both and felt a little more stable.
ALS patients live longer if they can maintain their weight and maintain their breathing (and don't fall and injure themselves). The feeding tube will make eating less of a chore and the diaphragm pacer should keep my breathing as good as it can be for the long term. I was concerned whether I could still get in the water at the beach but the doctor assured me that was possible with both devices.
I have to take two lab tests next week to make sure my diaphragm is still working well enough for the pacer device. Then w e will be able to schedule the outpatient surgery. I will likely be off work for at least a week to give things time to start healing.
I feel like it will be difficult to continue working fulltime once I have the surgery, but we'll see how it goes. I can't imagine taking off my shirt at work to use the feeding tube. The pacer has an external box that has to be carried.
My good friend Eric J. stopped in for a visit yesterday and we had a nice talk. I think of Eric as my older brother, someone I respect, a great role model, willing to help others, and who has the best interests of the commonwealth at heart. While we were talking in my office overlooking the Susquehanna River he noticed something walking across the ice near one of the islands and when we used the binoculars I keep in my office, it turned out to be a large red fox. Quite a treat!
Our house is now listed and had one showing already. Hoping that it sells quickly. The virtual tour turned out very nice: http://Tours.360tourdesigns.com/438837
Kim's last day on her old job was today and she starts her new job at PSU in State College on 2/2. It will be difficult to get out of bed and go to work tomorrow morning while she sleeps in!
PT suggested that I buy a lightweight can for stability. Also tried a splint that fits in your shoe and straps around the calf to see if it might stabilize my walking. Walked fine with both and felt a little more stable.
ALS patients live longer if they can maintain their weight and maintain their breathing (and don't fall and injure themselves). The feeding tube will make eating less of a chore and the diaphragm pacer should keep my breathing as good as it can be for the long term. I was concerned whether I could still get in the water at the beach but the doctor assured me that was possible with both devices.
I have to take two lab tests next week to make sure my diaphragm is still working well enough for the pacer device. Then w e will be able to schedule the outpatient surgery. I will likely be off work for at least a week to give things time to start healing.
I feel like it will be difficult to continue working fulltime once I have the surgery, but we'll see how it goes. I can't imagine taking off my shirt at work to use the feeding tube. The pacer has an external box that has to be carried.
My good friend Eric J. stopped in for a visit yesterday and we had a nice talk. I think of Eric as my older brother, someone I respect, a great role model, willing to help others, and who has the best interests of the commonwealth at heart. While we were talking in my office overlooking the Susquehanna River he noticed something walking across the ice near one of the islands and when we used the binoculars I keep in my office, it turned out to be a large red fox. Quite a treat!
Our house is now listed and had one showing already. Hoping that it sells quickly. The virtual tour turned out very nice: http://Tours.360tourdesigns.com/438837
Kim's last day on her old job was today and she starts her new job at PSU in State College on 2/2. It will be difficult to get out of bed and go to work tomorrow morning while she sleeps in!
Saturday, January 17, 2015
Falling
In my last post I talked about only having fallen once. Apparently I jinxed myself because I fell
Saturday night after my post, again on Sunday, and again yesterday. Saturday night I was standing on the cotton
rug in front of my sink in the master bathroom getting ready for bed. Somehow I started to lose my balance and the cotton
rug on the tile floor slipped and I fell backward against Kim's sink on
the opposite side of the bathroom. I
banged my left arm hard against the vanity with a deep bone bruise and
tweaked my right knee, but that was the worst of my injuries. Woke Kim up and scared her - scared me
also! My knee pain kept me awake for a while but I eventually found a position
that relieved the pounding pain. The
next morning my arm bruise was turning green and purple but my knee didn't
hurt.
Sunday afternoon I went into the master bath and on my way back into the bedroom tripped on a pillow on the floor and fell, hitting the solid wood bed frame with my face/head. Fortunately, it was a glancing blow. My glasses cut my nose, my eyebrow swelled up and hurt like heck, and I tweaked my right knee again. Since I can't talk it took a while to make enough noise that Kim heard me, but she had heard the thump from the living room when I fell and arrived almost as soon as she heard my grunt. It still hurts a bit today, almost a week later. Again, I was very lucky not to have injured myself worse.
Yesterday was a tough day also. I spent most of my week onsite at the Turnpike Commission reviewing engineering files for conversion for the GIS. I had so many morning meetings that I didn't have a chance to eat anything and also only got one of my hourly supplement drinks in. After lunch I had to go to PennDOT for a meeting. I drove around looking for handicapped parking but didn't find any and had to park 3 blocks away. I made the same walk two weeks ago and didn't have any problem, but yesterday it was a real struggle.
When I got home yesterday afternoon I walked out to the curb to get the mail and tripped over the curb on my way back to the house and fell in the driveway. Fortunately I caught myself with my hands and didn't hurt myself.
I guess between my spastic walk and not lifting my knees/feet high enough I am now prone to tripping/falling and I will have to be much more careful. I contacted my nurse at Hershey and asked about getting a cane, and she suggested a quad cane for stability but they usually like to do a physical therapy evaluation first.
Visited the Ear Nose Throat specialist earlier this week. Have a swallowing test scheduled and a second appointment with the ENT doctor and speech therapist also. Still having major sinus issues during the day and at night and not sleeping well at night since I can't breathe through my nose. Hoping to eventually find something that helps my breathing.
Sunday afternoon I went into the master bath and on my way back into the bedroom tripped on a pillow on the floor and fell, hitting the solid wood bed frame with my face/head. Fortunately, it was a glancing blow. My glasses cut my nose, my eyebrow swelled up and hurt like heck, and I tweaked my right knee again. Since I can't talk it took a while to make enough noise that Kim heard me, but she had heard the thump from the living room when I fell and arrived almost as soon as she heard my grunt. It still hurts a bit today, almost a week later. Again, I was very lucky not to have injured myself worse.
Yesterday was a tough day also. I spent most of my week onsite at the Turnpike Commission reviewing engineering files for conversion for the GIS. I had so many morning meetings that I didn't have a chance to eat anything and also only got one of my hourly supplement drinks in. After lunch I had to go to PennDOT for a meeting. I drove around looking for handicapped parking but didn't find any and had to park 3 blocks away. I made the same walk two weeks ago and didn't have any problem, but yesterday it was a real struggle.
When I got home yesterday afternoon I walked out to the curb to get the mail and tripped over the curb on my way back to the house and fell in the driveway. Fortunately I caught myself with my hands and didn't hurt myself.
I guess between my spastic walk and not lifting my knees/feet high enough I am now prone to tripping/falling and I will have to be much more careful. I contacted my nurse at Hershey and asked about getting a cane, and she suggested a quad cane for stability but they usually like to do a physical therapy evaluation first.
Visited the Ear Nose Throat specialist earlier this week. Have a swallowing test scheduled and a second appointment with the ENT doctor and speech therapist also. Still having major sinus issues during the day and at night and not sleeping well at night since I can't breathe through my nose. Hoping to eventually find something that helps my breathing.
Saturday, January 10, 2015
Long Overdue Update
Dear friends, thanks for continuing to read. You make me very happy when you reach out in response to something I have written. It has been a long time since I provided an update so I hope you are ready for a really long one!
The holidays were very quiet for us. We missed Kim's dad Bill at Christmas and this was the first year nobody exchanged any presents. We missed having Mel with us also. Kim actually stayed up through the stroke of midnight this year. Usually I have to wake her up so we can see it together.
My condition continues to gradually worsen. But you have to remember that everyone who reported improvements said that they got worse before they got better!
I've lost strength and coordination in my right hand and my legs are weaker. I've fallen once (fell backward from a squatting position) but have come close a number of other times. My handwriting is very poor and very slow, which makes doing my job difficult. I can still type fairly well, but slower and with more typing mistakes. My biggest complaints are my teeth and my sinuses.
Due to the muscle spasms in my face and jaws, I grit and grind my teeth uncontrollably 24/7 and my teeth are wearing down and my jaws and teeth hurt all of the time also. My dentist tried to take a mold of my teeth several months ago but was unable to take an impression due to my gag reflex. Some nights I can tolerate a mouth guard for several hours but it is rare to be able to keep one in all night. And once I remove it my teeth immediately clench strongly and grind. I wake up some mornings with small pieces of mercury amalgam fillings in my mouth. I am afraid that I will start breaking teeth at some point in the next few months unless I can get some relief.
My sinus challenges make it very difficult to breathe at night. I have one position I can breathe comfortably in at night, lying on my left side, my head elevated in a certain position and angle. It's such a narrow range that if I cross my legs to the other side I can't breathe properly. I often spend a couple of hours a night sitting up in bed trying to sleep so that I can breathe through my nose. As a result, I am not getting enough sleep. With the really cold weather I have started having problems breathing through my nose during the day, also. I make noises now when I am trying to breathe normally - nose whistling, throat noises, etc. But that is nothing compared to the noises I make when I eat or drink.
I'm sure part of the problem is the loss of the seal between my throat and sinuses. That means I will probably never be able to scuba dive again.
I have an appointment with my ENT on Monday to see what they can find out and hopefully get some advice on things that may help.
The past week my excess saliva has been worse also. When I open my mouth to try to say hello to someone at work, I often end up drooling instead. Whether drooling, sneezing, coughing, or choking, I usually end up with something on my shirt and pants and am having to launder my pants more often. Gross! Have to increase my meds during the day to compensate for the increased saliva activity.
My Pseudo Bulbar Affect (PBA) is worse also. Last week I had a major crying jag in the morning as Kim was leaving to go to work. I often laugh inappropriately and smile uncontrollably. I wouldn't do well playing competitive poker! Sometimes when I laugh I spray also, which is awful for me and the person standing in front of me, usually Kim. I will have to ask for some medication to attempt to control these symptoms if they get worse.
I am a little frustrated with Hershey Med. I had a heavy metals blood and urine test in December. They called and left a voice message on the home phone saying that nothing showed up on the test results. However, they did not enter the test results into my electronic file and after repeated emails to try to get a copy they suggested that I call the Holy Spirit Lab where the test was done to get a copy for my records and to see what it really said. I want to see my numbers, dang it!!! Kim called the Holy Spirit lab and they said they will print a copy for me if I stop by. Fortunately it is in the same building as the ENT office so I should finally be able to see my numbers on Monday.
Kim and I have talked about having my amalgam fillings removed to see if that will help with my teeth grinding, sinus condition, and ALS symptoms. I hope to get an initial consult at the very least to see what they say and get an estimate for having them all replaced.
I am adding some new supplements based on recommendations in the ALS Diet book starting tomorrow. I already take a lot of pills for someone who has trouble swallowing, but have to keep experimenting until I get a positive response and slow my progression or hopefully, see some improvements. It may take 3-4 months or longer for any supplements to make a difference. I have been on the Deanna Protocol a little over 2 months and it is difficult to say that I have noticed any differences. But if I wasn't on it, would I be worse than I am today? Who knows...?
The ALS diet book has a lot of food recommendations that I am working on, such as ingesting 15 pounds of apples every 10 days - that's a lot of apples. I bought a juicer to make fresh apple and fresh orange juice and I just bought a 36-pound box of organic apples from a local farm.
I am definitely slower! The reduced strength and coordination in my right arm and hand has affected my ability to get ready to go to work in the morning. As a result, I seem to get into the office a little later each week. Shaving and brushing my teeth take longer. On Friday I tried using my left hand to shave and it didn't go too badly. Showering takes longer because I often drop the soap and drying myself takes longer with my reduced dexterity. I have difficulty with my fine motor coordination in fastening collar and sleeve buttons on my dress shirts and have had difficulty fastening some of my pants with buttons also. My belly bulge hasn't gone down any, although I have lost a little more weight, which is not a good thing. I am also having some difficulty eating with my right hand. I can't rotate my wrist and hand to come straight to my mouth so come in at an angle instead.
I eat breakfast at home every morning to try to keep my weight up and have to take my morning Deanna Protocol supplement drink and get out all of my supplements for the day. Before my new supplements arrived this week I had about 20 bottles to deal with and 30 pills. Once I am taking all of my new supplements the number of bottles will be more like 35!
I am still putting in a full 40 hour week at work but because I get into the office later than I used to I have to work later into the evening to put in my hours. I have asked for an accommodation to allow me to work from home part of the time so I don't have to struggle as much in the morning to get in to work to get started.
I filled out the paperwork for my Handicapped Parking placard and picked it up at the DOT this week, which will make the walk from my car into the building shorter. Some days I can walk fairly normally, other days I am very spastic. Going up and down stairs seems to be a little more difficult and I always hold onto the rail for stability and safety.
Have I depressed you? Maybe, but I hope not. Just keeping it real! Battling ALS is a daily struggle, but I am very much in the fight and I am still expecting a turnaround. It's just not happening as quickly as I would like for it to.
I have apparently been polluting my body with poor diet, bad food, lack of exercise, alcohol, sugar, and toxins for 40+ years now and I can't expect my body to bounce back in 2 months just because I have changed my diet and lifestyle. It is going to take longer than that!
Well you've read this far, thank you for hanging in on a long post. Now for some good news! Kim applied for a job at PSU in State College in early November after some difficult discussions and a lot of persuasion and arm twisting by me. She interviewed the week after Thanksgiving. The Applied Research Lab (ARL) offered Kim the job, and this week she received her official offer and accepted the position.
That means that Kim and I will be moving back to State College, where we first met, fell in love, and lived before moving away due to my career needs. Now we are moving back for Kim's career, which seems right and fair. She will finally have her dream job - working at PSU and living once again in Happy Valley. We last lived there in 1993!
It is a good move for us because it will be helpful to live closer to family who can help us and it will be good for Kim's family to have her close by as well. In addition to family we still have some close friends there, more than we have in Mechanicsburg. Kim will live with her mom and I will probably continue to live in the house until it sells for as long as I am able to work and live here safely. One of us will commute on weekends, maybe alternating between State College and Mechanicsburg. Once we sell our Mechanicsburg house we will live with Jean until we figure out where we are going to live in State College. One of the components of the PSU job offer was a relocation package, which is a major benefit for us and certainly helped make a decision.
I've talked to my supervisor about the possibility of working remotely some of the time now. It would be helpful to me to be able to work some of the time from our house in Mechanicsburg or Jean's home in State College instead of getting ready and driving to the office every day. For now, I am capable of commuting to Harrisburg from State College for meetings at the office or with customers if needed. How long I am able to do that is questionable, but if the time comes that I can't safely commute then we will do what we have to do. I am hopeful that we are able to work this out because it would be much less stressful and I would be much more productive if it didn't take me 3 hours from the time I get out of bed to the time I get into the office.
We met with a realtor friend today and our house will officially be on the market early next week. We have a lot of cleanup to do before we are ready for our first showing, but started working on it today.
Please keep your prayers coming! They make a difference! Please pray for strength, patience, healing, to maintain my weight, and for my supplements and diet/lifestyle changes to slow my progression and to recover my capabilities.
It is an exciting time for Kim and me - more new beginnings. New job, new living arrangement, new geography.
Next time I will talk more about my diet and supplements. Stay tuned!
The holidays were very quiet for us. We missed Kim's dad Bill at Christmas and this was the first year nobody exchanged any presents. We missed having Mel with us also. Kim actually stayed up through the stroke of midnight this year. Usually I have to wake her up so we can see it together.
My condition continues to gradually worsen. But you have to remember that everyone who reported improvements said that they got worse before they got better!
I've lost strength and coordination in my right hand and my legs are weaker. I've fallen once (fell backward from a squatting position) but have come close a number of other times. My handwriting is very poor and very slow, which makes doing my job difficult. I can still type fairly well, but slower and with more typing mistakes. My biggest complaints are my teeth and my sinuses.
Due to the muscle spasms in my face and jaws, I grit and grind my teeth uncontrollably 24/7 and my teeth are wearing down and my jaws and teeth hurt all of the time also. My dentist tried to take a mold of my teeth several months ago but was unable to take an impression due to my gag reflex. Some nights I can tolerate a mouth guard for several hours but it is rare to be able to keep one in all night. And once I remove it my teeth immediately clench strongly and grind. I wake up some mornings with small pieces of mercury amalgam fillings in my mouth. I am afraid that I will start breaking teeth at some point in the next few months unless I can get some relief.
My sinus challenges make it very difficult to breathe at night. I have one position I can breathe comfortably in at night, lying on my left side, my head elevated in a certain position and angle. It's such a narrow range that if I cross my legs to the other side I can't breathe properly. I often spend a couple of hours a night sitting up in bed trying to sleep so that I can breathe through my nose. As a result, I am not getting enough sleep. With the really cold weather I have started having problems breathing through my nose during the day, also. I make noises now when I am trying to breathe normally - nose whistling, throat noises, etc. But that is nothing compared to the noises I make when I eat or drink.
I'm sure part of the problem is the loss of the seal between my throat and sinuses. That means I will probably never be able to scuba dive again.
I have an appointment with my ENT on Monday to see what they can find out and hopefully get some advice on things that may help.
The past week my excess saliva has been worse also. When I open my mouth to try to say hello to someone at work, I often end up drooling instead. Whether drooling, sneezing, coughing, or choking, I usually end up with something on my shirt and pants and am having to launder my pants more often. Gross! Have to increase my meds during the day to compensate for the increased saliva activity.
My Pseudo Bulbar Affect (PBA) is worse also. Last week I had a major crying jag in the morning as Kim was leaving to go to work. I often laugh inappropriately and smile uncontrollably. I wouldn't do well playing competitive poker! Sometimes when I laugh I spray also, which is awful for me and the person standing in front of me, usually Kim. I will have to ask for some medication to attempt to control these symptoms if they get worse.
I am a little frustrated with Hershey Med. I had a heavy metals blood and urine test in December. They called and left a voice message on the home phone saying that nothing showed up on the test results. However, they did not enter the test results into my electronic file and after repeated emails to try to get a copy they suggested that I call the Holy Spirit Lab where the test was done to get a copy for my records and to see what it really said. I want to see my numbers, dang it!!! Kim called the Holy Spirit lab and they said they will print a copy for me if I stop by. Fortunately it is in the same building as the ENT office so I should finally be able to see my numbers on Monday.
Kim and I have talked about having my amalgam fillings removed to see if that will help with my teeth grinding, sinus condition, and ALS symptoms. I hope to get an initial consult at the very least to see what they say and get an estimate for having them all replaced.
I am adding some new supplements based on recommendations in the ALS Diet book starting tomorrow. I already take a lot of pills for someone who has trouble swallowing, but have to keep experimenting until I get a positive response and slow my progression or hopefully, see some improvements. It may take 3-4 months or longer for any supplements to make a difference. I have been on the Deanna Protocol a little over 2 months and it is difficult to say that I have noticed any differences. But if I wasn't on it, would I be worse than I am today? Who knows...?
The ALS diet book has a lot of food recommendations that I am working on, such as ingesting 15 pounds of apples every 10 days - that's a lot of apples. I bought a juicer to make fresh apple and fresh orange juice and I just bought a 36-pound box of organic apples from a local farm.
I am definitely slower! The reduced strength and coordination in my right arm and hand has affected my ability to get ready to go to work in the morning. As a result, I seem to get into the office a little later each week. Shaving and brushing my teeth take longer. On Friday I tried using my left hand to shave and it didn't go too badly. Showering takes longer because I often drop the soap and drying myself takes longer with my reduced dexterity. I have difficulty with my fine motor coordination in fastening collar and sleeve buttons on my dress shirts and have had difficulty fastening some of my pants with buttons also. My belly bulge hasn't gone down any, although I have lost a little more weight, which is not a good thing. I am also having some difficulty eating with my right hand. I can't rotate my wrist and hand to come straight to my mouth so come in at an angle instead.
I eat breakfast at home every morning to try to keep my weight up and have to take my morning Deanna Protocol supplement drink and get out all of my supplements for the day. Before my new supplements arrived this week I had about 20 bottles to deal with and 30 pills. Once I am taking all of my new supplements the number of bottles will be more like 35!
I am still putting in a full 40 hour week at work but because I get into the office later than I used to I have to work later into the evening to put in my hours. I have asked for an accommodation to allow me to work from home part of the time so I don't have to struggle as much in the morning to get in to work to get started.
I filled out the paperwork for my Handicapped Parking placard and picked it up at the DOT this week, which will make the walk from my car into the building shorter. Some days I can walk fairly normally, other days I am very spastic. Going up and down stairs seems to be a little more difficult and I always hold onto the rail for stability and safety.
Have I depressed you? Maybe, but I hope not. Just keeping it real! Battling ALS is a daily struggle, but I am very much in the fight and I am still expecting a turnaround. It's just not happening as quickly as I would like for it to.
I have apparently been polluting my body with poor diet, bad food, lack of exercise, alcohol, sugar, and toxins for 40+ years now and I can't expect my body to bounce back in 2 months just because I have changed my diet and lifestyle. It is going to take longer than that!
Well you've read this far, thank you for hanging in on a long post. Now for some good news! Kim applied for a job at PSU in State College in early November after some difficult discussions and a lot of persuasion and arm twisting by me. She interviewed the week after Thanksgiving. The Applied Research Lab (ARL) offered Kim the job, and this week she received her official offer and accepted the position.
That means that Kim and I will be moving back to State College, where we first met, fell in love, and lived before moving away due to my career needs. Now we are moving back for Kim's career, which seems right and fair. She will finally have her dream job - working at PSU and living once again in Happy Valley. We last lived there in 1993!
It is a good move for us because it will be helpful to live closer to family who can help us and it will be good for Kim's family to have her close by as well. In addition to family we still have some close friends there, more than we have in Mechanicsburg. Kim will live with her mom and I will probably continue to live in the house until it sells for as long as I am able to work and live here safely. One of us will commute on weekends, maybe alternating between State College and Mechanicsburg. Once we sell our Mechanicsburg house we will live with Jean until we figure out where we are going to live in State College. One of the components of the PSU job offer was a relocation package, which is a major benefit for us and certainly helped make a decision.
I've talked to my supervisor about the possibility of working remotely some of the time now. It would be helpful to me to be able to work some of the time from our house in Mechanicsburg or Jean's home in State College instead of getting ready and driving to the office every day. For now, I am capable of commuting to Harrisburg from State College for meetings at the office or with customers if needed. How long I am able to do that is questionable, but if the time comes that I can't safely commute then we will do what we have to do. I am hopeful that we are able to work this out because it would be much less stressful and I would be much more productive if it didn't take me 3 hours from the time I get out of bed to the time I get into the office.
We met with a realtor friend today and our house will officially be on the market early next week. We have a lot of cleanup to do before we are ready for our first showing, but started working on it today.
Please keep your prayers coming! They make a difference! Please pray for strength, patience, healing, to maintain my weight, and for my supplements and diet/lifestyle changes to slow my progression and to recover my capabilities.
It is an exciting time for Kim and me - more new beginnings. New job, new living arrangement, new geography.
Next time I will talk more about my diet and supplements. Stay tuned!
Wednesday, January 7, 2015
Subscribe to:
Posts (Atom)