November Update

Time for our rather belated November Update.

First things first. With the support of all our friends and family, we were able to raise $2324.00 for the ALS Association. We had over 50 people who joined us in the walk as part of the ‘Spiro Fight Club’ team. Special thanks to Marcy Fox and Jenn Legg from my work, who organized the team and made T shirts for all of us.



Next ...our bathroom renovation. Thanks to the hard work of Marc Fortier, our floor and walls are tiled and showers have been a working ever since. Woohoo!! John is able to be wheeled in on a shower chair and once again enjoy a hot shower. We still need to paint, put up mirrors and a few other things but we are so grateful and so enjoying our new bathroom. Thanks Marc! Joe Mori, Dave Leo, and others have been very helpful in doing other projects (like installing a new door, plumbing, etc) that has helped make life easier.





ALS update, after getting counsel from various people we have gone ahead and made the change from Johns Hopkins ALS clinic to the George Washington University ALS clinic. Our primary reason for this is our desire to be seen by a Neurologist and we were not able to do that at Hopkins. So on December 7th we will be taken, courtesy of the ALS van, to the GW clinic down in Washington D.C. Perhaps by now they’ll be able to give us A firm diagnosis and make us eligible for some trials. This past month had a couple of rough weeks where John was fighting a lung infection that left him especially weak. This combined with the ALS made it impossible to transport him out of bed so after a week, several phone calls and lots of heavy lifting with the family we were provided a sling lift by the ALS loan closet. It’s been such a blessing and would have cost us thousands to purchase. It’s helped us so much in transfer from bed to the chair etc....... Sometimes its difficult to plan ahead for the new equipment that we’ll need so we’re very grateful to have one now. After a trip to the doctors office and several rounds of Antibiotics he seems to be much better. We need to be especially vigilant against future lung infections as its very difficult for John to cough deeply due to loss of diaphragm and other muscles.

Thanks to John’s longtime friend Joe Mori and other friends, they have come up with the idea of “bringing church to John“ as its often too difficult to make the trip. Once a month on a Sunday evening we are treated to a wonderful time of worship. It also serves as a chance for John to visit with many of his friends he doesn’t often see. We’ll include some pictures of these times in future blogs.

One of the youth groups at our church showed up on a Sunday afternoon a few weeks ago and cleaned, organized and did yard work that we were unable to finish this fall. God has continually provided just what we need when we need it. The care and support of our friends continues to amaze us!!

This past weekend we made our traditional trek to pick out a Christmas tree. While the family picked out a tree, we ran it by John who was in the ALS transport van giving a thumbs up. After that we met at the mall where we enjoyed lunch together, followed by a couple hours of walking around the mall. It was so great to be OUT together as a family!!!



We have much to be thankful for and God has showed us his love, care and provision in new ways everyday. John says daily that regardless of his temporary condition, his greatest problem and “disease” has been taken care of by his Savior’s finished work at the cross, and we are never without hope!!