One Year Anniversary!

A lot has happened for me in the past year, and not just COVID19!

• My hair grew back…but like an alien! So, I’m rocking short hair for now, maybe forever!
• We made a BIG move from Port Washington, New York in the middle of a pandemic and hurricane Isaias! We said some very hard goodbyes to really great friends!! Oh, and the sunsets on the water!! My heart!!
• We have taken a break from our globe-trotting and landed back in Dallas, in a 22^nd floor condo with a view to Oklahoma!
• We are taking advantage of every minute being near family again and reconnecting with ‘old’ friends!
• So far, Mike and I have managed to keep healthy as my immune system was rebuilding! Blood counts are great now!
• I found an exceptional personal trainer that specializes in mobility issues! Shout out to Daniel at Special Strong!!
• I’m on a 45-day streak of workouts in The MS Gym (online PT for MS)!! MS doesn’t take a day off, so I now battle the beast with NO DAYS OFF!
• I have joined book clubs and Bible studies, and started painting for fun!
• I found new doctors that I love, even a neurologist at UT Southwestern that believes in HSCT!!

But…I can’t wait to tell you about TODAY!

Before I give you my exciting update, let me fill you in on what led up to today. My recovery has had some really low points, mixed in with a few good days. Behind closed doors, I was getting depressed, disappointed and feeling defeated! I was struggling with extreme spasticity in my legs that was getting worse by the day/night! I started taking magnesium which helped, but only a little.

And to add insult to injury, I have fallen 3 times in the past few weeks! No real injuries, but it was a direct blow to my mojo! To make it worse, one fall was in public and then friends caught me once (almost a 4^th fall). I called Mike (my HERO!) right after the almost-fall and cried. I confessed that I had started to grapple with the visions of a dim future. It was taking SO MUCH EFFORT to do anything! My positive attitude was getting harder to hang onto. I was losing hope. Yes, I know, the HSCT recovery is a 2-year roller coaster, but this felt different! This felt like a deep hole that I couldn’t claw my way out! I prayed, hard, out loud, the rest of the way home! My valiant efforts were not cutting it! MS is winning. I can’t beat this! I boldly begged God to intervene, while meekly trying to be grateful for what I could still do!

The next day I had a neurologist appointment. I usually put on my positive face for my doctor visits, but this time I laid it all out. She stunned us by presenting options! (The walking pill, muscle relaxers, botox shots into the muscles and a trial for medicinal marijuana.) I chose to start taking Ampyra again (the Walking Pill). I had stopped taking it right before HSCT and hoped I would never need it again. It made me dizzy and nauseous, but she countered that with a nausea med that I only needed for 1 day. As of today, I have been on Ampyra for 4 days!

So…that brings me to my BIG news! TODAY:

I didn’t need a cane, trekking poles or a wheelie walker!

Today! I walked SOLO and steady! Today I JOGGED, yes just a little, but still, it counts!!! Today, spasticity is just a hint, not the headline! (Check out the videos below!)

I don’t know what tomorrow will bring, but today I have HOPE!

All hope and all glory to God!

“For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland.” Isaiah 43:19 NLT

ps to MS’ers, good news! UT Southwestern is starting a trial for HSCT! Am I glad I did HSCT? Yes! Do I recommend HSCT? Yes!