Update from Michelle

     It is amazing that it is already October. My dad has been home from his long hospital stay for a little over three months now. Much has changed since before his hospital stay, but I think we have finally found a "new normal" for now.

     I can't thank all of you enough for your prayers, notes of encouragement, meals, babysitting, and volunteering! We have been amazed at God's goodness during all of this. We can't imagine going through these hard times without the Lord and without our church family. You are a wonderful blessing!

     "The New Normal" may be difficult for some of you to hear. But I think it's important for you to know how significant the changes have been over the past several months. Prior to the long hospital stay my dad was in his wheel chair every day for most of the day. He could manage it himself, and would often enjoy "driving" into the backyard to read his kindle and enjoy the outdoors. Now, he lays in a hospital bed all day long in the living room. He is basically paralyzed from the neck down, and receives all his meals through a food peg. He requires a caregiver 24/7, and his speech is often hard to understand. BUT, he is in good spirits!

      Us kids are over there daily--visiting, helping, etc. And we have a wonderful crew of caregivers that allow my mom to sleep at night and take a bit of a break in the afternoons. We couldn't do it without them!
This past month we also received some encouraging news! There is an ALS Doctor here in Poulsbo! She doesn't advertise because she only takes on a few clients in order to be home with her kids when they are not in school. My dad's ALS doctor from the UW put us in touch with her, and she has accepted my dad as a patient. Not only that....she makes house calls!!! When we met with her she gave some great ideas of things we can be doing with dad. AND she thinks it might be possible to help build back up some strength in my dad's back and neck to allow him to sit in his wheelchair briefly each day. It will take some time, but I know we were all encouraged at the possibility!

     In the meantime my dad passes his time watching the news, listening to audio books, listening to music, and visiting with family. Please don't hesitate to drop them a note of encouragement. They enjoy hearing from you!

     He is still not taking many visitors. As you can understand he only has minimal energy to expend, and he wishes to spend it with his wife, kids, and grandkids as much as possible. Thank you for understanding.
Again, thank you all for the wonderful blessing you have been, and are, to the Pearson family. We are blessed.

Michelle

Recent Happenings:

We celebrated Marcelo’s first birthday yesterday with family and Marc seems to have the magic touch with Marcelo. Our son won’t kiss anyone else in the family but apparently Marcelo knows to take advantage of the time he has with his Papa!

Currently, Marc is reading (via caregivers) Case for Faith and Case for Christ. Next on the list is How to Win Friends and Influence People with Missy. Of course, The Bible is not too far out of his sights as well.  And JP just bought a joke book and when he reads them there is constant laughing from the two of them.

Well, it has been a while and much has taken place since the last blog. I (Mario) am writing this, and will be, on behalf of the rest of the family to keep you updated on us.


Many of you have experienced his decline in mobility until his retirement in November of 2009 and saw him go from walker to motorized wheelchair. Since retiring, he has not been able to be at church but this was because of some issues he was having with the motorized wheelchair that was to be compatible with the wonderful ADA certified minivan that the CMC congregation helped purchase for him. The process of getting the right wheelchair with all the right components was just one of the many hoops he has wrestled with during this time.

From retirement until the end of May, his decline was fairly slow. There were some moments that caused him to go to the hospital but there was nothing too unexpected. The end of May, however, found Marc in the Bremerton hospital due to a cough. After being there for 20 days, he was released to the Hospice Care Center where he stayed for five days before returning home. He still coughs and is congested, but we now have some tools to help deal with them that we didn’t have before the hospital stay.

Many people have asked, “How is Marc doing? Is he back home?” The answer is yes, but we hope you understand that this doesn’t mean that he is better, or back to where he was before the hospital stay. It means that with the help of caregivers, volunteers, and Hospice we feel we can currently manage to take care of him from home.

Currently, Marc has someone caring for him 24-7 to help him with his needs. He is able to get into his wheelchair for about an hour each day, and has really been enjoying the beautiful weather we are having.

We have been blessed with many volunteers and yet, there is always a need for more. Marc is not taking visitors at this point – while we know he loves people, he simply doesn’t have the energy to entertain or converse for very long right now. And what little energy he does have he desires to spend with family.

There have been some bright moments in the midst of the time passing and future blogs will offer some of those things. The goal in this one was to catch you up to speed so you wouldn’t feel so in the dark. I know that Marc has blessed so many, and many want to know how to help. Future blogs will also talk about this as well. In the meantime, pray for our family, in particular Marc and Carol as they go through this time of transition.

My son JP and I went to my three-month check-up at the Univ of WA Med Center - ALS Center yesterday. The #1 issue they check is respiration/breathing. #2 is the ability to swallow. These are the critical issues.

I took a computerized breathing test again. They want to see what my lung capacity is. The maximum is 100, and anything 80 and above is considered normal. I scored 95, the same as six months ago! And, my ability to swallow remains at 100%. Praise God.

Thanks for your ongoing prayers, love, and awesome support.

On the same day, two friends told me of a helpful website for those of us with ALS - www.patientslikeme.com. One learned of it in BusinessWeek magazine and the other on NBC News. I immediately signed up and now have access worldwide to others with ALS so we can share our stories and what we're learning about this disease. The first person I heard from was in England. We share what's been working and what hasn't. One of the most encouraging parts is that so many I've talked with on the site are believers who have many praying for them like I do.

Only about 300-400 have ALS in the entire state of Washington. 90% is random or sporadic while 10% is genetic or inherited. I am in that 10%. Carol and I are part of an ALS support group that meets locally each month, although we can't be there every time. The Evergreen Chapter of the ALS Association is simply remarkable. We are so impressed. But, when it comes down to what really matters - your prayers, love, encouragement and support are at the very top of our Thanks to God list!

Thanks for your prayers and concern for me. Carol went with me for my check-up at the UW Medical Center ALS Clinic Nov 12 and the news was very encouraging. As expected, I am losing some strength on my right side but they were pleasantly surprised that it had not progressed even more. They pulled and pushed and said, "Wow." This disease results in muscle loss, thus weight loss. Praise God when they weighed me Nov 12 I had not lost any weight.

So far, my progression has been slow. That is an answer to prayer. They checked my ability to swallow by eating crackers, applesauce, and cheese and drinking water. I still have 100% swallowing ability. Praise God. The speech therapist checked my speaking ability and it has not decreased at all. I still need to slow down and articulate clearly, and I'm doing the best I can, although I've spent most of my life talking fast (you think so?). This must be an answer to prayer by some of you who prayed, "Lord, please help Marc speak a bit slower." Your prayers are working on that issue, too!

For me, healing from the Great Physician includes more than a complete healing from this disease - I am wide open for that, and let's keep praying for it! It includes slowing the progression and minimizing strength loss and fatigue.

I could not have a more supportive wife in Carol and in my family. For those of you who know us, it comes as no surprise that we are dealing with this disease and its ramifications together. This is not Marc's disease, it's my family's disease. We've chosen to deal with it with eyes wide open, not denying anything but living in reality, and going on with our lives. That's why we traveled to Japan and Hawaii recently. We spend a lot of time laughing, enjoying our lives and talking about a great future. Further, I can't think of a more supportive and caring congregation than CMC. You continually lift my spirits.

Thanks again for seeking the Lord for us. God hears and answers prayer. He knows what's best and my heart rests in him.

Health Update - Sep 12, 2008

My last regular appt was Aug 25 at the UW Med Center. They tested the strength in my arms, legs and tongue and their official word – “Very strong.”

I was given a pulmonary test to determine my lung capacity and I scored 95% on 2 separate tests (80% is considered normal).

I am not losing weight – which is great news. No evidence of any swallowing problems, which often becomes a key issue for those with ALS.

I can’t begin to express what your love and prayers mean to me, Carol, and our family. Thank you and please keep it up – we know you will.