My Speech Therapist

Speech Therapist Lindsey has visits bi-weekly.  She started in early December, 2019.  She is responsible for working with me on my swallowing, breathing and voice compromise (which is good) as related to my ALS.  

Lindsey also enjoys time with family.  She exercises physically and spiritually.  Her faith guides her personal walk.

Thank you, Lindsey, for using your gifts not only for myself, but for all the other patients you are still caring for.  May God keep you and your family safe and away from harm.  

Lastly, I also want to thank you for putting up with my creative responses to therapy.   Such responses as yelling the sentences back at you, and changing the word sentencing while consistently yawning.  I admit it was in my best interest when you told me I can no longer have popcorn with my butter.  Despite all the “parent to child” looks, you join laughing with me; and laugh often!

Today was my bi-weekly scheduled visit with Travis OT

Travis has provided occupational therapy since last December.  Travis has managed to adapt with my body changes.  

Today marks the first day since he started that I was able to lay on my own bed, ever so briefly. It was an emotional victory for me.  I need to be able to use the bed so my caregivers can dress me easier.  This is a result of having lost my strength to lean and pick myself up.  

Back to Travis.  He enjoys the outdoors, is a Sports enthusiast (includes Professional bull riding), cooks and enjoys eating no matter who cooked.

Thank you Travis for your commitment not only to myself, but to all the other patients you are still caring for.  May God keep you and your bride safe and away from harm.  

The accompanying picture was taken prior to the COVID-19 pandemic. This picture shows my brute force strength by breaking the yellow strap during stretching exercises.

Two years in the making, this surviving 1973 Mustang convertible is now roadworthy!

This father/daughter project came from the family of the original, and only, owner.  Words can’t express our appreciation for their kindness.   They allowed us to make this a special project for Rachel and I. 

Attached are photos of our inaugural trip in the Mustang with the top down!   Our trip lasted long enough to listen to 8-Tracks of Journey and The Steve Miller Band.

I repeatably told my family that if I ever get into a situation where I need my ventilator, just put me in the Mustang (with the top down) and let’s hit the road!  That would work for me even if I didn’t get to drive.

Digitally Preserving My Voice with Acapela

With my sincere gratitude, The Team Gleason Foundation provided “Voice First” by Acapela.  Acapela creates personalized digital voices to guide end-users throughout this new experience.  They create personalized digital voices matching your identity for all services, apps or devices that need to speak with high quality voices.

I have now reached the level where I can now listen to the digitized version of my Voice!  I can also use the different parameters, such as speeding up the rate and voice shaping under the “demo combo” section. 

Stay tuned on how this turns out!

March Marks the Two-Year Anniversary of My Initial Visit to NIH!

This morning I had the pleasure of having my six month follow up by phone with the NINDS members who host my participation in a very important C9orf72 observation trial.

The National Institute of Neurological Disorders and Stroke is an Institute within the National Institutes of Health.

NINDS group includes Research Nurse Jennifer Farren and Dr. Mary Kay Floeter.  I occasionally stay in touch with Dr. Bryan Traynor.  Dr. Traynor is responsible for finding the connection of the C9 Gene and its link to familiar ALS in 2011.  That is how we recently found that the C9orf72 is responsible for the Graham family passes to ALS and Dementia.  

If my notes are correct, I am the 50th participant, and the last, to enter into this observation trial.  

There is so much more I want to share regarding this gift and opportunity to participate in finding a cure.  Stay tuned!

One Year Anniversary

Today marks the one-year anniversary of the wonderful father/daughter dance that took place with Rachel.  The memory still bring me tears as it also marked the last day I stood on my own.  In fact, I would not have had it happen any other way.  

I am so pleased to find that many people viewed this story beyond my website and through other many forms of social media.  

Please scroll down to the July 12, 2019 post to revisit the “Time to Dance” story.  I especially recommend the reading for those who will read it for the first time.  

Lastly, this story was originally featured in a Faithful Fathering newsletter.  The link can be found at the bottom of the March 12, 2019 story.

I love my family.  And I thank God every moment we are together.

Chat and Pray

“Chat and Pray” came about accidentally on two occasions in the last two days where Mary Anne and I needed help. God sent two servants and allowed enough chat before we turned to prayer and praise. And yes… Dixie joined us!

Carry each other’s burdens, and in this way you will fulfill the law of Christ.”

Galatians 6:2 NIV

What opportunities, if any, do you see during a time of crisis?

What opportunities, if any, do you see during a time of crisis?

Up to now, I have treated the pandemic virus just like I would the flu.  I have followed all the normal protocols to minimize my risk.  That was until this new virus changed everything for everyone.  I understand that the new precautions in place are to keep me (and others) safe. 

The events of elevated safety has required a major adjustment in my attitude.  The idea of not being able to sit in front of anyone in person and give out hugs are emotionally contrary well-being.

I thrive on the interaction and engagement outside of my home.   Staying engaged is prescribed medicine for my overall health.

Fortunately, I was able to attend our home Church Service and our Sunday School class.  Something I have not physically been able to do for more Sunday’s than I can remember.  I am reminded that I had a choice and seized the opportunities gifted to me. 

Opportunities and Choices will present themselves not just today, but everyday.  With that being said….

What opportunities do you see? 

And how will you respond? 

Sincerely, Ronald

“Use me, God.  Show me how to take who I am, who I want to be, & what I can do, and use it for a good purpose greater than myself.”

Special Note of Thanks

Each day is new and unique.  I try to live everyday as though it is my last.  And I strive to get the most out of each day.  

We are very grateful for everyone God has placed in our path during this challenging time.  

Please stay in touch with me and my girls.  And be patient with our ability to respond in a timely fashion.  

God loves each of you.  And so, do we!

“There are two great days in everyone’s life. The first great day is the day you were born. And the second great day is the day you discover why.”

—Charles R. Swindoll

My Phases of Living with ALS C9

I sincerely appreciate all the notes, phone calls and visits.   Your show of love has been an encouragement and a true blessing.   

I also appreciate the number of people who have reached out to ask if I’m okay.  Some are citing concern over my lack of social media postings.  I am using this post to show how I am today after a brief overview of the history living with ALS C9.  Please note that I have “voice” texted most of this post.

I have seen and experienced several miracles from the unexpected changes in this body.  I continue to be rescued and sustained in the face of critical events.

To be truthful, this body’s serious challenges began last October.  And in recent weeks, I have entered yet another stage of decline. 

Here is an abbreviated timeline:

09/2017:  Official diagnosis of ALS C9orf72.

03/2018: Entered the NIH (National Institute of Health) C9orf72 ”observation” trial in Bethesda, Maryland where I remain an active participant.

06/2018:  Began Invention Clinical Trial in Knoxville, Tennessee.

12/2018:  Completed my Intervention Trial that started 6 months prior.  This dosing extended my life with no decline for six additional months. 

12/25/18: My body resumed a slow progression in decline.

03/2019:  The last time I was able to stand.  (See the “Last Dance” post)

09/17/2019: My ability to breath dropped to short breaths.  A ventilator and cough assist machine were introduced.  Amazingly, my breathing improved!

01/17/2020:  Feeding Tube installed. (For use as needed to supplement my diet).  

02/2020:  Sleep comprised for weeks.  Results in declines in overall health.  

Today:  Adapted routine so to be able to sleep 7-9 hours with minor interruptions.  My strength has declined considerably.  I use a Hoyer Lift for anytime I need to be transferred.  I am living in my power chair.  It has been some time since I have been able to sit up on my own.  

In home Speech and Occupational Therapies continues.  I am also seen weekly by a nurse to monitor my health.

Pain never goes away.   Pain management helps in most cases to keep it under control.

The hand cramping is increasing yet I can use them!  Issues in my hands flair up even to the point of dropping things.  Best news is that I can still hug even if it’s an “air” hug.

My ability to write and type are limited.  I am trending to voice texting and voice banking (more to follow).  Except for times of fatigue, my voice quality remains excellent.

“When our weaknesses drive us to God, He fills up what is lacking—and our faith is strengthened as we experience His awesome power in our lives.”

—Charles Stanley