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!