Friday, August 31, 2012

An update

We have not been keeping up with the blog posts very well... and we have no good excuse. We have been busy though! It was an extremely busy summer, which was wonderful, but made it seem so short. And now school has started again. That makes time move really fast and really slow at the same time somehow... but all of that is really no excuse. Everyone is really busy in their own way, and everyone has their own burdens to bear.

I decided that it might be time for an update though. We have blogged about our adventures, but not the down and dirty of our daily lives... things have changed quite a bit in the last few months.

When Tony broke his arm in early June, that led to an expected change in how much assistance he needed. I needed to help him in the shower, help him get dressed, and help cut his food. What wasn't completely expected is that nearly three months later, I am still helping him do those things. It seems that the arm break coincided with a decline in functionality in his arms due to ALS. The bone has healed, but he will never regain the strength and range of motion he had before.

So our daily routine is quite a bit different now. In the mornings, I get the girls up, dressed and fed; and then I get Tony up, and help him get showered and dressed. He has Jake to help him during the day. Then in the evenings, I cut up his dinner and modify the way I serve it to make it easier for him to eat. He almost always uses a straw to drink instead of picking up the glass as well.

And all this of course starts to effect his work too. He has a harder time typing, and his arms tire more easily. That is one of the biggest reasons we are slow with the blog. I am supposed to type for him while he dictates, but we are often too tired at night to work on it.

He has started to notice other effects too. After sitting for awhile, it takes several steps before he regains his balance. He has also noticed an increase in the amount of saliva, which is a common symptom of ALS.

So all that leads to the emotional side of things... and there have definitely been changes there too. It is very difficult to stay positive, and sometimes we don't succeed. I know that is to be expected. I always try to stay positive and get him to look at the bright side, even if I don't completely agree with myself. I wonder at times if that is the right thing to do, but I feel like the best thing is to keep him positive. I think he does extremely well considering the circumstance though. I cannot imagine myself being so graceful in the face of something as monstrous as ALS. The other night we had a brief but difficult conversation. He told me that he has noticed even more weakness in his arms, and that that is quite demoralizing. Then we talked about the nearly inconceivable reality of losing the use of his arms... 

... it's really hard to even keep typing after that. My husband is, and always has been, my hero. I think of him as the guy who can do anything: play a fierce game of soccer, build a house or tackle any home improvement project, know exactly what to do in nearly any situation, light up a room with his laugh... the list goes on and on. He is still that same person, his body just isn't cooperating.


  1. Thinking of you and Tony and the girls always. And know that you are doing a fantastic job of keeping on!

  2. My heart goes out to you.
    Love, Steph

  3. I vote to keep up the positive thoughts....the mind can be a very scary place sometimes. You guys are in my thoughts, my prayers and my heart. Della

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  5. Lesley and I feel so useless being so far away.

    Remember, you have to look after yourself too. Don't do stuff around the house that doesn't need doing! :-)

    If you have folks or friends who are offering to do things for you, no matter how small, then rope them in! People like to help.

    If the blog is still important for you then set your nurdy friends on the trail of some good quality speech recognition software.

    Or sort out some free web storage and upload Tony's dictation as an mp3 for somebody else to download and type up. Send it to me if you like, I'll do it for you. (Speak to John for email)

    Remember - you are a mother, and mothers are the toughest creatures known to science. :-)