Saturday, June 7, 2014

From Luther

Luther asked me to post this for him:

Lynn and I have talked several times about me posting to her blog or starting one of my own. So I'm going to share my typical day.

I've been waking up early lately which is strange because I've been going to bed later. I guess it's just another part of the disease. The first thing I do after I wake up is lower the foot of my hospital bed and throw my feet over the edge. The weight of my legs helps to get me in a sitting position but occasionally I have to use the hand rails to pull myself up. I then go outside and smoke a cigarette before coming back in and settling into my recliner. If it's too early I just sit quietly and use my phone to check email and catch up on Facebook, I don't want to disturb Lynn so I try not to turn on the TV before 8.

I spend most of the day watching TV. My home health care person comes on Monday, Wednesday and Friday from 10 to 1. It's nice to have someone to watch TV with and make small talk. She also does range of motion exercises with me and makes sure I get lunch. Lynn fixes my lunch and leaves it in my fridge in the basement. I'm pretty much confined to the basement now. I'm comfortable in the basement and have most everything I need; small fridge, microwave, hospital bed, TV and my recliner, all the comforts of home in 500 square feet.

I usually take a nap in the afternoon after lunch whether I want to or not. Trying to find something entertaining on TV can be a challenge. I'm not into the celebrity reality shows or all the conspiracy shows that are on. I try to watch one of the national news shows and the local news just to stay in touch with what is happening in the world. Dinner can be something Lynn prepared that I can heat in the microwave, something someone brings over or something Lynn picks up on the way home.  I spend the evening watching some more TV before I turn in around midnight.

So that's my typical day it's quite a change for someone that was used to working 40+ hours a week. It's been almost a year now since I had my first noticeable symptom. It took about 6 months from the onset to diagnosis. I really thought things would progress slowly but I've been rather surprised how fast the disease has advanced. I don't notice a change everyday, they just suddenly appear. I've lost the use of my arms and my right leg is becoming more useless on a weekly basis. 


from Lynn:

in good faith, I want to leave my comments to myself and let Luther's words speak for himself even thought it's really really hard for me to not comment.


  1. Luther, we have met just once and I must say you struck me as a good guy. I know you are Lynn's Brain - like me, she met a man she never expected to meet and fell in love and you two were planning this life together. Then, very unlike us ALS came into your lives. No way to sugar coat that, it sucks but if something like this was going to happen to you then I am glad you are with someone who loves you so much. I am glad for Lynn, too because she is getting to know that sort of love. Thanks for sharing your world with us Luther.

    1. Lenore - although our paths don't cross all that often, your words have been really supportive - thanks for that! I've always admired the bond you and Brian have. I hope we can get together soon.

    2. Me too! That would be awesome. I know you have much to do now, but maybe you can set aside an hour for a cup of coffee :)

  2. Lynn, please let Ed know that all of us at VSP care for him, and wish you the best and thank you for your love and care for him. Ed will probably tell you he doesn't know a Hope, but this is my "internet alias". (My real first name means "hope"). Coming from a CCH background, he'll know why I use an alias. We worked together for 18 years. Please let Ed know I pray for him, and as God prompts I share my prayers with my church on Wednesday evening. And we thank you for sharing in this blog.

    1. I just saw this now, Hope, and I will definitely let him know you replied. I imagine he's already seen this but I just wanted you to know how much we appreciate your thoughts and prayers. Thank you!!