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!
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