February 2023

 From the Caring Bridge Journal Jan. 17th post:

We had our first appointment with Dr. Sharlin this week.  Over the course of two days, we received lots of information…and I gave lots of blood.  The team was encouraging.  We spent time with Dr. Sharlin (neurologist), a dietician, and a health coach who did some education on stress and breathing.  The breathing tips were especially helpful as breathing continues to be tricky for me, especially when I’m around certain odors/irritants (a dusty room, food cooking, perfume, etc).  We came home with a dietary plan, a HeartMath therapy device, a couple of books, and several supplements.  The diet and supplements are focused on removing toxins and providing what’s needed for gut and cell health.  The goal is to heal the mitochondria in my cells which are dying/malfunctioning as well as get my body as healthy as possible so that it can fight the disease.

Next month after the results have come back from all of the blood and saliva tests, we will meet with Dr. Sharlin and his team again.  Those test results will help customize our treatment plan to address the specific deficiencies and needs of my body.

One surprise that we came home to was that a good friend and co-worker of mine has created some ways for people to help us on this journey.  He set up a GoFundMe page for Carisa and me.  We’ve had several of you ask how you can contribute to the costs we are incurring.  We’re so humbled and grateful for your love for us.  If you’re inclined to help in that way, the link to the GoFundMe page is below.  In addition, for those who live in Greenville, the guys I work with are organizing people who would like to walk/run in the Green Valley Road Race (a local run that raises support for ALS research).  There’s also a link to that below.  I want to give a special “Thanks!” to Lucas and the other guys on the Ryan Homes warranty team for both of those.  Your support means more than you guys know.

January 28, 2023

Journal Entry by Paul Curtis — January 28, 2023

I want to write a note saying how grateful we are to those who have sent notes of encouragement and prayer and who have supported at GoFundMe.  I'm amazed and humbled by the fact that over $10k has been raised in about a week.  That doesn't count a gift that Crossroads Christian Church sent in December.

This week I was struggling.  The treatment plan is not easy.  It's requiring a complete lifestyle change, a new way of thinking, and lots of time, effort, and sacrifice.  It's a bit wearying.  It also requires faith.  Doubts were creeping in this week, "Is all this going to make a difference?  Is it worth it?"  During those difficult moments I thought of everyone who is praying for us and supporting us.  What came to mind was the passage in Hebrews 11-12 that describes a "great cloud of witnesses" cheering on persecuted believers so they won't "grow weary and lose heart."  My situation isn't the same as theirs, but all of you are a great cloud of witnesses to me.  Cheering me on.  Pleading with God for my healing.  Investing in my healing/success.  This week as I've wondered to myself, "Is it worth it?", my health and life have not been my only motivation.  I also don't want to let you down!  How can I not give this everything I have with so many friends pulling for me??  Whether you realized it or not, you have been spurring us on.  Thank you.  Carisa and I have been touched deeply by your love, prayers, and generosity.

 

The race crew:  (Left to right)  Mr. & Mrs. Eric Rodman (Paul knew Eric from Trail Life and works with him at Ryan Homes) In front of them is Ellis from Ryan Homes.  In front of him is Mark, Paul's good friend from his small group and who he works closely with at Ryan Homes,  Lucus (Paul's boss from Ryan Homes), his 2 kids and wife Christie,  someone else from Ryan Homes, PAUL, Me & Diane.  Behind us is someone I don't know and Peter from Paul's small group at church. Rob (Paul's small group), Sarah (my small group) and Sam from church.  Cameron (another boss from Ryan Homes) took the picture and that's his wife on the far right.  The guy behind her isn't with our group! :-)

The winners in their age groups!  There weren't very many people in each age group. :-)

Caring Bridge Journal from February 11th:  Today was the 5 mile run for ALS.  One of the guys from work promoted and organized to get 19 of us out there, with the purpose of supporting Carisa and I and raising awareness of our journey.  It was a fun morning.  We had several people from Ryan Homes and church along with family, most of whom were wearing shirts with "#59" on the back.  It was representative of the two groups (church and work) who have become like family to me.  Their encouragement and support has been so inspiring.  And "thank you" to everyone who has supported the GoFundMe to help with my treatment.  We're over half way to the goal, simply amazing.

Next week, we go to Missouri for our second appointment with Dr. Sharlin, the FM/Neurologist.  It's a two day appointment.  They will go over the results of all the tests taken last month.  We'll evaluate the treatment plan and customize it based on the results found.

As far as symptoms go, not much new.  Still no significant impact on my lower motor skills.  I finished 2nd place in my age group at the race today.  Ok, there were only two in my bracket!  But no issues there.  I still have some fasciculations (muscle spasms) in my abdomen and cramping in those same muscles are a bit more frequent.  My speech and breathing are still problematic, but not much worse than a month ago.  Overall, progression of symptoms has slowed considerably compared to Oct-Dec.  I'm looking forward to hearing the results of the tests and personalizing my treatment plan.  We appreciate your prayers!

My Valentine flowers

We went back to Missouri in February.  On our stop in Memphis we got a surprise.  Our nephew, Noah, decided to be rebaptized and he wanted Paul to help!

Noah giving his testimony.

The doctor appointments are 2 days each time.  Either in the morning or the afternoon each day.  So we have time to do other stuff while we're in Ozark. We visited the original and biggest Bass Pro Shop in Springfield.

February 25, 2023

Journal Entry by Paul Curtis — February 25, 2023

We had a good visit with Dr. Sharlin and his team this week.  Lots of good information.  I will give you the highlights below, but in order to appreciate them it might be helpful to share a metaphor that Dr. Sharlin used.  ALS and other neurodegenerative diseases are like having a roof with 38 leaks.  Traditional medicine (he is a board certified neurologist, so he has a foot in that world) tends to offer a couple of medications that offer little in the way of hope because they only plug one or two holes.  At the end of the day you still have a leaky roof.  Functional medicine looks at the bigger, holistic picture to discover where your body is not healthy and why it is not healing itself.  In ALS, motor neurons are damaged or dying.  So the focus is on what the body needs to build and maintain healthy cells (including motor neurons.)  As you may remember, we left our first visit with a generic plan for overall brain/cellular health, but we had several tests taken to find out what my specific deficiencies and toxins are.  This week we went over the results of those tests and customized my treatment plan.  We came home with nine different areas that needed attention, but a couple of them were of particular interest to me:
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1. A flat cortisol curve.  My cortisol levels are low throughout the day.  Cortisol is a stress hormone.  It activates when under stress.  You might think it's GOOD to have low cortisol, but in healthy people cortisol levels peak in the morning and gradually taper down throughout the day. A flat curve like mine can be caused by long seasons of high stress.  During those seasons the cortisol damages cells (including motor neurons).  Eventually the brain tells the adrenal gland to stop producing it, which causes the flattened curve (low all day).  I won't pretend to know all the ramifications of that, but I know that it can inhibit muscle growth (an issue with ALS).  There are ways of regulating cortisol levels through diet, exercise and supplements.  What makes this item so interesting is that the supplement used to regulate cortisol (Ashwagandha) was found in clinical trials with mouse models of ALS to increase longevity and increase motor neurons.
2.  Vitamin B12.  My B12 levels weren't far from normal, but there were levels of other things that were low/high that prevent the cells in my body from fully accessing that B12.  This one was interesting because several of the other ALS reversal stories mentioned B12 as significant component to their healing.  Knowing that my body is not taking the B12 in well seemed to be a confirmation that this could make a difference.  The negative to this one is that one of the treatments for this is a regular high dosage of B12 by injection.  But Dr. Sharlin said it was not a big deal...because I can administer it myself.

There were several other deficiencies like Vit E, Omega 3, Choline, and others.  All were addressed with the revised treatment plan.  There were no significant levels of any toxins that were tested for.  By the end of our time there, they were giving me diet and exercise suggestions for building muscle again.  (The ALS clinic told us that with ALS your body can't build muscle!)  Our next appointment will be virtual via Zoom in a couple of months.

On the mental and emotional side, Carisa and I are doing well overall.  Some moments we feel overwhelmed.  Most of the time we feel blessed that God has provided us with such incredible support and resources.  Your encouragement and prayers have made such a difference.  My employer and co-workers have been amazing.  The GoFundMe support has blown us away.  We love you all!