Eating at Coconut Joe’s

Best support team!

With my parents & sister, Irene, by the Caribbean Sea

Progress:

2/26: Flexed my feet up and down. Left foot easy, right foot harder- toes flicker when tickled, can raise and lower with effort. 3-5th toes wriggled slightly! Tried raising my legs. Left ‘easy’ right difficult but muscles flexed. Pushed in & out with my legs. Left “easy” right challenging but muscles flexed. Kicking out with both feet. “Stood up” & “did squats” with James help. On my belly I tried to curl & push away, tough but I tried!
2/27: Flexed my feet up and down. Left foot easy, right foot harder- toes flicker when tickled, can raise and lower with effort. 3-5th toes wriggled slightly! Tried raising my legs. Left ‘easy’ right difficult but muscles flexed. Pushed in & out with my legs. Left “easy” right challenging but muscles flexed. Kicking out with both feet. “Stood up” & “did squats” with James help. On my belly I tried to curl & push away, tough but I tried!
2/28: 60 minutes on the pedaler & a few parallel bar raises
3/2: personal training with Christian
3/3: peddler for 60 minutes
3/4: personal training - did the parallel bars 5x solid and 4x borderline solid but getting tired. pointed feet up & down- left easy, right challenging. Tried lifting my legs up & down & brought knees into my chest with James help.
3/5: squeezed knees in & out on the wheelchair & kicked out, stood up & down with James, raised my knees towards me with James help, moved my feet up and down, left easy, right challenging. With the right foot I be could get my toes to squeeze.
3/6: 60 minutes on the pedaler
3/7: personal training- parallel bars & activated legs & 8 lb shrugs
3/8: pedaler for 60 minutes
3/9: personal training. Need to increase weights for tricep dips- doing 8 lb need to get 10 & 12 lb for backup. Today’s dips were far more controlled compared to last week. Even Christian commented that today was day & night from last time! Did the parallel bars (did well).
3/10: 60 minutes on the pedaler
3/11: personal training. Did the parallel bars once, challenging today. Increased from 6 lbs to 8 lbs for curls today.
3/12: 60 minutes pedaler
3/13: flexed feet up & down- could flicker right toes, raised legs, pulled left then right knee in
3/14: personal training, was super tired. Had difficulty with the parallel bars but I also had switched chairs. Perhaps the height of my new chair helps… I’ll use it Wednesday.
3/15: flexed feet up & down- could flicker right toes, raised legs, pulled left then right knee in
3/16: personal training- did the parallel bars 5 times
3/18: personal training- I have more control with the bands, tried standing with my walker, made it 70-80%
3/19: flexed feet up & down, raised legs, pulled left then right knee in
3/20: 55 minutes on the pedaler. My foot kept coming loose & hitting the pedaler
3/21: no training
Did:
Rows: 5x25 black band at mid chest
Elbows out high rows: 4x20 (think elbows high)
Curls: 3x8
-First number is the amount of sets, second number is the number of reps
3/22: personal training
3/25: personal training
Did:Parallel Bars: 2x3
Banded row: 4xform breakdown (around 20-25)
Banded elbows out high row: 3x12-15
Curls: 3x8-12
Lateral raises: 2x15

How have I dealt with everything?
I have trouble getting used to not being able to walk anymore. I was struggling to hold onto hope. I had even started antidepressants & counseling to help pick up my spirits. Lily & Lola are great spirit lifters! One thing I very much noticed after the stem cell therapy, was the dramatic increase in a profound sense of hope. I finally see light in a dark & dreary tunnel. I used to absolutely reach the end of my rope and beg (out loud if I was alone) I just need a break!😭 It would get too much after a while between my back pain & just being awkward. I haven’t felt that since the stem cell therapy! That has been a huge relief. I’ve noticed that I’m taking less “FECO (fully reduced cannabis oil) tincture” for pain! I make the tincture by putting about 4 ounces of gg4 & Pyxie Dust cannabis in 1.75 liters of Everclear in the Instant Pot & soak 8 hours. Then I start the pressure cooker for 4 hours three times then I strain the cannabis, put the strained tincture back into the pot to heat up (never use heat) & reduce the alcohol then bottle to add to tincture bottles. Vegetable glycerin is medicated so I can add it to warmed up lotion to create a super topical for pain and muscle spasm relief + a tincture. I also medicate butter to make sleep cookies. My focus is constantly on pain management. & I make medicated coconut oil to fill capsules to help with my pain & muscle spasms. It’s unreal to not have to be constantly focused on chasing pain relief.

I started to question what was worth living through?
I clearly needed to do something to change how things were going. That’s where the idea for getting a personal trainer came from on January 14, 2022.

My mom told me that I was getting bluer than usual, that was concerning so I scheduled with a counselor immediately & got on antidepressants. My thoughts were getting dark. It’s important to take care of your mind. Since I’ve had the stem cell therapy, my spirits have improved dramatically. I have hope! How am I feeling today? Happy & hopeful for the future. It’s all if someone came along and dulled all the sharp edges.F

Hope has improved as has my peripheral neuropathy! I am especially glad for that as normally my skin burns as if I had shingles everywhere- I say that because I once had shingles & though my skin had blisters, they didn’t hurt. I didn’t even understand what was happening until I had my doctor look at it.

Now, admittedly I don’t think about much other than getting stronger. I’m constantly wiggling my toes especially trying to wake the right foot up. Thinking about how much I am focused on that, I’m really going to work on improving that. No need to be so obsessive. Things will happen as they happen. Breathe.

I found out I had brain atrophy at my last MRI. My neurologist was pleased that overall I don’t forget very much. That said, I’m admittedly forgetful of little things but that wasn’t worrisome. I started doing Duolingo regularly to test myself at remembering & speaking since that’s been awkward as of late. I do well, which makes me happy. I practice mainly Spanish & some French to mix it up. I’m looking forward to getting my MRI this year to seen how things look..

As advised, I’ll continue taking Stimulife three times a day for a year after stem cell therapy & I will get the Ocrsavus infusion in April..

Observations from my mom:
We found the DVC Clinic through the MS Society’s newsletter and were immediately interested as treatment did not include chemo. Mary didn’t want to run the risk of having her immune system destroyed and be subjected to potential life-threatening infections (as was her GP).
She was infused with umbilical cord stem cells which are unmapped and, therefore, capable of mending any damaged cells in the body. The first appointment was about four hours long and included acupuncture and lymphatic massage. Day two’s appointment was a simple procedure requiring an IV and took six hours with infusions every 20 minutes. The only side affects were nausea and tiredness. Within 12 hours Mary had no side affects and said she felt like her body was “more alive”.
As you may know, Mary has not walked for more than two years, despite weekly therapy. By day five (as we sat in the airport on our way home) she could raise her feet which gives us such hope.

After stem cell therapy: better spirits,`I’m noticeably more comfortable- tennis elbow is improving! & improved strength in legs. I get less locked legged! My mom used to have to wait until my legs bent enough to get my legs in the car. I’ll use less pain tincture & apply less medicated lotion to my back

3/9: 3 weeks ago or so I started feeling like I was getting subtle chills in my legs that came in bursts. Healing?

Just not needing a break anymore is amazing! It still is endlessly annoying that I can’t walk but that will take time.

3/22: was just approved for aquatic therapy!

Being able to lift my legs has been nice while wheeling around, far more comfortable than dragging my foot around. My new wheelchair is finally going to be fixed! New sturdier arms & a foot rest that I’ll be able to flip back (makes it easier to get on).

I was evaluated for pool therapy & I was 1/2 a grade stronger & was able to sit without support (my mom commented that it’s been 2 years since I’ve done that. I have noticing that I have been stronger! My therapist was excited that I had hired a personal trainer, who agreed to meet up with her at physical therapy & go over exercises she would suggest after she evaluates my body.

Stem cell therapy progress 3