Some photos from our GW trip!

Our driver, Joe.




Going around the block checking out George Washington University.



On our way home!

Update from GW ALS Clinic

Our visit began with seeing our Pulmonologist. The lung capacity test revealed that John was at 40%. It had gone down from 60% 3 months ago. The doctor recommended that he try using the B Pap device at night. This will hopefully help him to not work so hard breathing at night, will allow him to sleep better and have more energy during the day. They will be fitting him for that soon. After that we were seen by our Physical and Occupational Therapists, as well as our speech therapist, Neurologist, social worker, ALS association rep, medical equipment rep and last of all our psychiatrist. John entertains most of these young fresh out of college therapists and they don't quite know what to do with him. We had a new ( our 3rd ) shrink this time so we were able to once again share with her all the ways we are being cared for, the hope we have within us in Christ and the joy we are experiencing in the midst of this illness. She was quite taken aback and said " what a happy story, that is not the norm". What joy it gave us to declare God's goodness towards us. What a change we have seen in our own hearts as we are not only not dreading going, but are actually filled with anticipation as to who we can share with while we're there. This a work of grace and the result of all the prayers on our behalf when we are there. Thank you!

The waiting room is a mixture of people of various ages who also have ALS. Lord willing, we want to try and introduce ourselves to some of them next visit. Having Amanda along worked out really well as she's the primary caregiver when I'm at work and the PT lady was able to show her how to stretch out John's arms and legs. The Medical equipment rep is looking into getting John a device that supports your arm when you can no longer lift it on your own. This could be helpful for eating and drinking.

Due to fluid build up in his hands and feet his wedding ring was very tight and unable to be removed. Our Neurologist was so concerned that she tried to slide it off using soap right in the exam room. After than didn't work they sent us down to the hospital ER to see if they could remove it. But we realized this would take too long and our ride would be there soon. So, thinking we'd take care of it next week we headed home. That night our friends Marc and Terry joined us for dinner and as we mentioned it and they saw John's finger which by now had even become more swollen, Marc got his heavy duty wire cutters and a pair of plyers and cut away. Woohoo! There was just enough room that he didn't cut John's finger. At times these ALS clinic visits may tempt us to be a little discouraged because of the "semi-'futile" nature of the care that is available for this condition. BUT, the reason we are not is that we really believe God in His sovereignty has a purpose for our participation. Again we thank you so much. We feel your prayers!

John's Testimony at CLC

John was asked to give his testimony at Covenant Life Church. Here's the link if you'd like to watch the video.

Summer Update

Dear Friends,

Sorry for my lack of an update. After much prodding from friends, here it goes!

Back in May we had our GW ALS clinic visit. Thank you so much for your prayers. Once again, we felt them and know they made all the difference. We didn't learn anything new at this visit, however, had a couple of stories to share.
Our day began with a new driver from a new Cab Co. picking us up. I say this because, I liked their cab better and told the woman driver how much I liked it and commented that our whole family would be able to be in the van at the same time, and how nice that would be. Anyway, she then said to our surprise, " Oh, did you know we sell used ones all the time for a very reasonable price?". We then asked her how much she was talking about and she said usually under $5,000.00. We had never really prayed about a van because it seemed like an impossibility ....... real people of faith :), but now this opened up a potential for actually getting a van. We were so encouraged and told our driver how God had arranged for her to drive us that day and how she was being used by God. She then offered to call her boss and find out whats available right now. On Monday she got back to us and said that nothing is for sale right now, but things change quickly, and for sure some will be available in December. Woohoo! We hadn't even begun our drive and were praising God for the prayers of the saints and for God going before us and providing what we need before we even ask. This would change our lives dramatically. As it stands now, we have to pay about $40.00 to attend church using a cab and that makes it difficult to also go on Date Nights, Youth Meetings and other events John would like to attend. So, this would be something we are excited about and now in total faith for and would appreciate you joining us in praying for a van to become available as quickly as possible.
Our first stop is Pulmonary where we check in and pay our co-pay. So, I'm standing there with John next to me and really I don't think John or I had spoken much of anything, maybe I asked him if he had his insurance card. Out of the blue Tawanda, the individual checking us in said "how long you two been married?" I told her 23 years and inquired why she was asking. She then said, "Oh you two just seem comfortable and I can tell you're in love". THEN, she elaborated and said "You asked him a question and he answered". Who would have known that simply not grunting would be such a testimony!

On to present day.

Since that visit, the disease continues to progress, to where John now has a hard time feeding himself. As a result of this progression, it is difficult leaving him alone for long periods of time. Amanda has quit her job in order to stay home with her dad and be available for his needs - from preparing food, to adjusting his chair, picking up things that are dropped and the list goes on.

We are hoping to find some willing volunteers who could assist us on a more regular basis. This could include afternoon visits or stopping by to help with other personal needs. You don't need medical training, just a willing heart! If anyone could serve us in this way, please contact us at jakaspiro@gmail.com

Even if you are not able to do anything regularly, drop in visits are much appreciated - please call John's cell prior to coming over: 301-437-1510.

We will be returning to the GW clinic at the end of August for our quarterly visit. We don't ever expect to learn much from this visit. It is more a monitoring of the progression of the disease. There is no treatment. The hardest part of these visits is the reality of all that is being lost and our "normal" keeps changing.

"But we have this treasure in earthen vessels, so that the surpassing greatness of the power will be of God and not from ourselves; we are afflicted in every way, but not crushed; perplexed, but not despairing; persecuted, but not forsaken; struck down, but not destroyed; always carrying about in the body the dying of Jesus, so that the life of Jesus also may be manifested in our body." 2 Corinthians 4:7-10

We continued to be sustained by grace. We are so encouraged and thankful for every prayer, note and gesture of care on our behalf. Thank you.

~Kathy

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!!

October Update

We know its been a while since we gave an update so here goes.......OCTOBER UPDATE

We know its been awhile since an update. We will try and do one every couple of weeks but at minimum every month. Much is going on and we are truly overwhelmed by the care and support of our friends and family.

We saw our primary care Physician recently and discussed with him the potential for this being Lymes's disease. So many of you have suggested we check it out and believe me, we would love nothing more than to to hear that diagnosis, but so far, none of our Neurologists or Doctors have been keen on following up with the tests. Our doctor agreed to do one more blood work up and see the numbers. We are so grateful to all our caring friends who have provided doctors names, books, etc. related to this and just know that we have looked into the possibility and all the tests results have come back negative. ( Including Western Blot, CD-57, etc.... So, after this final test result is received, we need to ask that you join us in putting that possibility to rest and not provide more doctors or possible tests. Thanks so much for your understanding!!. Our biggest need at this point is to find a Neurologist to oversee our care and provide a definitive diagnosis. This will allow me to possibly participate in some clinical trials that are available.

It seems there's always a new necessary renovation project happening in the Spiro house to make things more accessible. Our next big project is the renovation of our master bathroom. This has grown increasingly more difficult or impossible to use. This renovation will allow easier access to the sink, shower, etc. Some of our good friends who are contractors are donating much of their time to do this, for which we are incredibly grateful, words cannot express. When Danny and Liz Dustin from our care group heard that we were making some minor alterations to our bathroom they very generously offered to pay for the cost of a more extensive and nicer :) renovation. We are humbled by their kindness and generosity! Work on this should begin soon and we'll post pictures of the extreme makeover! Thank you Danny and LIz!!

We'll be returning to Johns Hopkins ALS clinic at the end of November for a follow up. If we receive a confirmed diagnosis at that time, we may have access to future drug tests and trials. Our very dear friends Dr. Javed Khan and his wife Carolyn are kindly helping to counsel us in some of these areas. Again, God has brought us so many caring, and equipped friends who are stepping in to help during this time. Both practically, and otherwise. Javed noted that John didn't have an IPOD and thought that listening to hymns and other great music would feed his soul, so not long after that Javed gives John a new IPOD filled with many songs to help him keep his heart fixed on the promises of God. This will be especially helpful when he wakes up often during the middle of the ngight. Of course John will likely add Miles Davis and other jazz greats to add to the mix. Thank you Javed!!

We're thankful and gratefully relieved that this week our insurance company notified us that they are covering the full cost of our power wheelchair, minus our deductible. Woohoo!! Recently, John has had many opportunities where the Lord has allowed him to encourage others who were going through trials of their own. Some of these trials may be physical, financial, or emotional but the same God and Savior who is sustaining us is available to them.

We are also so grateful to God for our wonderful and willing children who have each stepped in to serve us when needed. It's a big change for all of us and requires much time and sacrifice, some days more than others. Amanda is taking a lighter load so she is more available to serve John at home. Joe is attending Watkins Mill High for an additional year of school and also will allow him to also be home more, rather than our original plan of sending him away to Job Corps. Gabriel is attending the University of Maryland Baltimore County (Universities at Shady Grove campus) which is keeping him close, though his time is the most limited during his 3rd year of college. We're so glad God gave us 2 strong sons who are there to literally help lift John when needed, which is more of late.

We are so very aware of God's grace and presence as we walk through this. Thank you so much for your prayers. One of our greatest challenges is that we adjust and get used to one level of difficulties , only to have to readjust and get used to a greater level of disability. Our new normal keeps shifting. As an example, the power wheelchair has made much of John's getting around so much easier, but now we are facing the challenge of transferring from the bed to the chair, from the chair to the car.......you get the idea. So..............after a few falls both in public and around the home where it required 2 -3 people to get him back in his chair or his car, we are hoping to find some able bodies servants who could occasionally help out.

Thank you so much to all our friends who have come by for visits, brought dinners, sent notes of encouragement and served us in so many ways. We could not go through this alone. It's been very humbling to be the beneficiaries of so much love and care. We are so touched by getting the weekly cards from our pastors letting us know they prayed for us, and love the weekly visits from Adam as well as some other pastors. We can't thank you enough!

Lastly, my dear friends at work have decided to join a Walk for ALS that will take place in Frederick, Md in honor of our family. We are deeply touched by their thought and initiative and; Kathy, Gabriel, Joseph and Amanda be will be joining them in the 3 mile walk. We are including the information below if you choose to contribute any money towards our goal or decide to enjoy a nice Fall walk in beautiful Frederick. It's on October 31st at 10:00 am starting in Baker Park. We will be getting T Shirts for Team Spiro so if you sign up as a part of our team, we'll get you a T shirt. You can sign up for what they have titled "Spiro fight Club". There is no pressure to gather a certain amount of money, and they make the whole thing easy for sign up. The numbers are growing so if you would like to join us, go ahead and click the link to the left. If you want to walk, you need only put down a small goal amount. Feel no pressure at all as there's no minimum amount necessary and the awareness if what is most helpful to the ALS association.


With love and Gratitude,

John and Kathy

Happy Birthday to John!

Tomorrow (Sunday, the 6th) is John's birthday! He'll be serving in children's ministry (events center) tomorrow if you'd like to stop in and say hello. If you'd like to send him a birthday greeting, their email address is: jakaspiro@gmail.com.