Monday, February 20, 2012

Update on Steve's condtion

A lot of you have been asking me for an update on how Steve is doing with his fight with ALS.  I got his permission to write a very raw & honest post updating y'all on his health.  Initially the symptoms exhibited in his right hand, which eventually worsened, and spread to his left hand.  This added with him having loss of balance and other general weakness is what lead to his diagnosis.  Might sound weird, but we are truly blessed the ALS has started in his hands (there are several different types of ALS one can have, and the one that typically spreads the slowest begins in your hands.)

As things have slowly but eventually gotten worse, he has gotten more weak and tired (and had several rough falls) so we decided it was time for him to stop working, and follow through with the application process for disability.  This is a nightmare in itself...He got denied for short term disability AND put on a 6 month waiting period for disability & Medicare.  Since staying home he has gained some of his strength back, mainly because he doesn't have to spend the hour + that it took him to get ready for work.  Steve's unable to safely shower himself, we got a shower bench, however it still takes him a lot of energy so it is easy for me to bathe him.  We also got a raised toilet seat so it's easier for him to use the restroom, as well as a portable bidet as he has no interest in me wiping for him.  Steve now needs help to cut his food up, he is able to feed himself slowly & with some frustration, but is able to still do it.  Thankfully he is still able to walk, and pray for that to continue! Although sometimes needing asisstance, he is able to walk slowly on his own. Also, he still has a strong voice, although it is getting slower he is thankfully still able to talk and communicate well.  Steve's breathing has stayed pretty consistent, it has only gotten slightly worse.  Steve is no longer able to button his shirt (we leave them buttoned), zip his pants (now has velcro),difficulty standing up without help, unable to get a bottle top off, open a coke, squeeze mustard out of a container, or put deoderant on.  All things we take for granted.  One definite positive is that Steve's weight has stayed the same.  This is the most important thing when battling ALS, losing any weight increases the progression of the disease.  Also, if Steve loses ANY weight he will need a permanent feeding tube.

Each day is different for Steve, he could wake up with more energy walking a little better than the day before, and somedays he wakes up so discouraged that he feels almost like he can't walk at all.  It is important day by day for Steve to remain positive, as we have both noticed (like all people) when he has a good day mentally he also typically has a good day physcially.  Steve has a lot of things he does daily to help prevent the symptoms from worsening as much as possible.  He takes SEVERAL different vitamins (some pills and some drinks) daily.  If anyone is interested in a list contact me & I can share what has seemed to help.  We aslo put gloves on him each night with popsicle sticks in them to keep his hands straight, sleep on an electric blanket, and rub melted cocunut oil on his muscles.  Steve also has some stretching and breathing exercises he does through out the day.  We are very blessed to have his family & some very close friends that live close & are able to come check on him often.  It is helpful if someone comes to see him daily, to help raise his spirits, help with anything he may need, help him with lunch, play with the dogs, etc.  Unfortinately I still have to work (now even more than ever with the wait for disability to kick in) so I am unable to stay home with him.  If you ever wanted to know the main way to reach out & help Steve, I would suggest a visit during the week if you can.  I'm so thankful for all those whom are able to come visit. 

This is just some insight for those who were asking for an update.  Like I said every prayer, phone call, text, email, facebook post, visit, surprise lunch, etc helps.  We appreaciate all that everyone has done for us, and ask for continue prayer for strength & peace. 

Lots of Love!


  1. Dear Hope,

    Just a note to tell you that I will be praying for you, Steve and your families as you continue you on your journey. I watch Say Yes to the Dress every week and saw your story this weekend. I lost my Dad to ALS when I was 17 after he fought a short 9 month battle with the cruelest disease known to man. I understand too intimately every detail of this post. If you have not reached out to your local MDA chapter for resources, I hope you will. They were immensely helpful.
    I can think of no better prayer than strength and peace. My prayers for you will continue.

  2. Thank you so much we have been connected with our local chapter and you are right they are so helpful. Thank you for your prayers & thoughts we appreciate them.

  3. Hi Hope,
    I am writing to you because I saw your and Steve's episode on Say Yes to the Dress. My grandmother had ALS and I was shocked to learn of Steve. It is a true love story and a testimant of your character. I had some of the best times with my grandmother during her battle with ALS and it was the best decision we ever made to spend time and take care of her. I am praying for Steve and you and pray for God's hand in your marriage. God Bless.
    Vanessa from Savannah

  4. Hope,
    I was supposed to be studying for finals today and instead saw your episode on "Say Yes to the Dress." I was touched and filled with hope at the same time. My son is 21 and has been battling Leukemia for the last thirteen years. His Leukemia is extremely agressive and he has relapsed four times. He is currently in remission and doing well but struggling with some fear and uncertainties about his future. I am sorry to go on so long about my son but what I wanted you to know was that as his mother, I would be so proud and thrilled if he finds an amazing woman to love him the way you love Steve. You have a beautiful soul and a beautiful love for Steve. He is lucky to have you and you, him. Life is uncertain and sometimes does not go the way we would like it to go but you already know that. I just wanted you to know how you touched me and on those hard days, don't ever, ever give up or doubt yourself. Thank you for reinforcing that lesson for me today.
    Brenda from Memphis

  5. Hello Hope,
    I actually watched your episode on "Say Yes to the Dress" several months ago. I searched the internet today to find out how you & Steve were doing. The love ya'll share I am proud to say I finally have as well. My sister was diagnosed with Multiple Sclerosis in 1975 and then rediagnosed with ALS in 1979. She was told she only had 3 to 5 years to live. That goes to show you that although doctor's are quite wise, they aren't God.....she lived until 2010. Keep smiling and always find the humor in the day to day discouragements. My Sister, Vanessa Moses always said "I'm healed on the inside". Her story is featured in the book "Journeys with A.L.S. : PERSONAL TALES OF COURAGE AND COPING WITH LOU GEHRIG'S DISEASE". I'll continue to pray for a cure!
    Sharon Kendall
    Yorktown, Virginia