Thursday, April 4, 2013


I know I have written about this before, but some things have happened that inspired me to write on perspective again.  Recently Steve's chair (he uses a Jazzy) died.  We then had him use a few other borrowed chairs with out much success.  Even after having a newer chair a little customized, it is still not functional for him.  We are still not sure if his Jazzy is repairable and if it is going to be something that we can afford, as the repair company is not able to get to us until tomorrow.  My prayer & hope is that it is something that is a quick affordable repair, however if not we will have some new challenges to face.  Steve has tried several different chairs but do to the progression of his ALS his arms & hands do not work the same and he is unable to drive the chair with the ease he is able to with the Jazzy.  

I never gave much thought to just how much a change of a wheel chair can be such a set back, but for someone with ALS who already experiences such limitations in mobility to all of a sudden not be able to move on your own or have to try to use something else is very difficult.  It gave me some much need perspective about being grateful for my mobility & my independence.  I know sometimes it's hard because I went from being the girl who went out every night to the girl who stays home (when we aren't traveling) most days to not feel like I'm "missing out";  then things like this happen and make me realize that in reality I'm blessed that I am capable to walk on my own, I'm capable of being able to drive, to talk on the phone, to text or write an email.  Here is Steve in a wheel chair that won't move, having to ask me to type for him (although he is able to do some, it just is hard for him),  take him to the restroom, shower him, feed him, wipe his nose, etc---and to now not having a working wheel chair.  It's opened my eyes yet again to realize that I never have any reason to complain----ever.  

I'm asking that everyone please pray that the repair goes well tomorrow and that it is something that is affordable and fixable.  If that's not the case please pray we are able to find him a jazzy to replace his current one.  This is a huge burden for Steve & while he feels bad that he's letting a chair get him down; it's completely understandable.  On the outside looking in some may think that he should just try the other chair that was provided until he gets used to it, but being here seeing the frustration & pain it causes Steve to not be able to use the chair properly I understand.  

This is just a small glimpse on to the things an ALS patient goes through---and the independent mobility was the one thing that kept Steve positive.  He was able to wheel around the house or easily get in the van for us to go somewhere with the Jazzy and now he's not able to independently do anything.  

Thanks again for all the constant support & prayers.  Thanks for letting me come to y'all when we need something.  I will hopefully have more answers tomorrow and will either be calling on y'all for help or giving a very excited update.  

Much love as always. xox


  1. Many prayers sent your way that everything works out with his chair. Also, Im wondering if there is a company or "craigslist" type of place that would donate a jazzy-type chair to you guys. Sometimes the replacement parts are as expensive as the chair itself. I hope his chair isnt getting him down in the dumps too much but you must get his chair fixed because nice weather is soon to come!!!! :) Keep your heads up <3 jen & josh cesario

  2. thank you both. Jen we have some ALS organizations on the look out for a new jazzy but so far they have no signs of one being available. I know things will work out usually but sometimes the waiting for it to is stressful.

  3. Hope, prayers are coming from the Powers household on Friday, April 5th! God will provide, as He always does. Stay faithful and trusting, praise Him even in the bad times (which is really what you are doing in your post!). Blessings and joy in abundance is my desire for you two. Love & Peace!

  4. C'mon everyone!! Let's do some sort of fundraiser and get Steve a new Jazzy!!! Hope, you have hundreds of followers on Facebook. Post something! If each follower donates $5, Steve will have the correct chair by the end of the day!

    And this reminds me of one of issues with the ALS organizations out there. They fund research and such, but do not help individuals with equipment, meds, or supplies. :(

  5. thank you all for the prayers & out reach. The wheel chair repair company should be here anywhere from 2-5 today so we are anxiously waiting to know any news. Also, yes we did get a few borrow chairs from the ALS association but unfortionately it was the type of chair that Steve was unable to use because of the progression he's had in his arms/hands. We have everyone on the lookout for a jazzy and I will update everyone as we know more. Thanks again!

  6. Dear Hope and Steve, as Dan's mom, I pray for you every day. I know what a heart-wrenching, cruel disease ALS is, and I know how you struggle to meet the unrelenting expenses associated with it. That being said, please, please invite people to join your site from "Our Friend Dan". The donations being sent to you indirectly from that site may not be reaching you. I know a lot of people who would like to give to you but want your address rather than sending money via "Our Friend Dan". Meanwhile, God bless you for being such a dedicated wife to Steve, Hope, and may God guide the hands of scientists as they search for a cure. Love and prayers, Lynn