Chapter 16 “Year in Review”

Happy New Years. May God’s blessing be with you and you have joy and peace in 2023.

I thought I would give you a 2022 year In review. Although I was having symptoms of ALS in Jan I still did not know. In the meantime I started my new job with the U S Capitol Police.

By March my speech was definitely noticeable and was having to repeat myself. I started to lose some weight but not much. Swallowing food was getting difficult and it would take me over an hour to eat.

In May i was officially diagnosed with ALS and enters into the VA ALS clinic. I got my feeding tube and lost about 10 pounds. I was still working and driving but was using my feeding tube at work.

From June to August thing were pretty stable although I was down about 30 pounds and the use of my right are was getting worse.

August was my first trip to the ER where they diagnosed I had pneumonia. Still losing weight and driving.

October I received my trach, second bout of pneumonia, my weight was down to 135 which was a total loss of 50 pounds. I stop driving and started working from home. My right arm was about 10% functional, lost strength in my legs and started our journey into home health care.

The last two months I continued to get weaker and need more ventilation support. I am pretty much house bound but can get out if needed.

ALSFSR-R is a scale use to get a picture of my current condition and gives approximate time left in the hour glass.

When I first started blogging I was doing ok with my ALS. My ALSFRS-R was a 42 and that’s not bad out of 48.  As the months progressed it was expected I would lose more function. Today my score is a 15, but what does that mean and look like?

In the simplest terms IAW the projection tool I have lost a lot of my abilities with only <25% remaining and have 9 months to live.

Now of course this is a projection tool and not absolute. No where in my mind do I see myself taking a dirt nap in nine months. Needless to say if you plan on a visit you might want to come soon.

I will start from my head to my toes explain the ALSFRS areas and scores.

I currently can no longer speak verbally I thank God man has developed tools that allow me text to speech and my Tobin Dynovox.

0 points

I have no ability to use my right hand and arm and my left hand is about 25% functional. I am down to one finger on my left hand to type.

1 point

I am now no longer dangerous cutting food and handling untencils , so bad if I tried to cut a stake  the cow would wake up and slap me.

0 Points

Laura has to help me dress, shower, shit and shave. I still can do some but not most, we all that money the Army spent on me learning these skills gone. 1 Point

Turning in bed and adjusting my blankets myself is tough but limited. 2 Points

Before going into the hospital I was walking fine, since returning I have lost leg strength, fell four time, require a cane and someone to be close. If my head was not as hard as it is , I would be worse off. 2 Points

Shortness of breath now occurs when walking to far, and that’s about 20 steps. no more 100 yard dashes for me. 3 points

I have not slept in my bed since the hospital. I sleep in a recliner at night and not able to lay flat. Which  means I no longer sleep next to my wife at night. I’m confined to the chair while on BPAP and my feeding tube. 1 Point

When I came back from the hospital I started using the BPAP at night to sleep. The first night several hours and since overnight. However recently I have been using it during the day as well.  My lung muscles are not as strong as they used to be and soon I will be on the dog leash 24/7.  This takes away my freedom to get up an walk when I desire. Planning and assistance is needed for another basic function. 2 Points

This past two months there have been many changes physically. I will not lie and tell you it doesn’t affect me mentally. I have moments during the day of frustration but also know God

has my back.  I need to keep focused on my mission to teach and bring a spot light onto ALS.  I ask you to share my blog, not for me but for those that need the information.