Help me walk
Whelp, as most of you know, I was diagnosed with Primay Progressive Multiple Sclerosis 2 years ago. Only 5-10% of all MS patients have Primary Progressive and it is currently untreatable (although I'm excited to be starting the first medication for my type in the next few months (waiting for it to finally clear FDA).
ANYWAYS, I currently have a really hard time walking. My MS affects my right side and I have trouble raising my foot when I walk. This has caused me to be limited to walking on a few blocks and I have a pretty bad limp all the time now. I just found out about this incredible device called a Walk Aide that fires electric signals to my leg everytime I lift my foot that keeps me from tripping on my foot. There is just NO insurance coverage so I have to pay the cost completely out of pocket. Please help me be able to get one of these and be able to walk around again and hopefully even hike again!
I've done A TON of research and found a really incredible Stem Cell treatment that could put me on the path of being cured. But once again, I need to ask you all for help. Please.
I'm terrified of what my future holds if I can't pull this off, but I'm so hopeful that I can actually begin curing my immune system with this treatment.
My new GFM campaign: https://www.gofundme.com/stem-cells-for-kevin
Beyond that I have been on a High-Dosage Biotin study (300mg/day) since April. Its a 15 month study and I haven't really noticed anything besides my hair and nails growing really fast.
Unfortunately, with good news, comes some bad. It has been incredible to see my legs/walking become stronger than I was a year ago, but I have recently been seeing a pretty big decline in my right hand. While I have become almost fully left-handed, I am struggling using my right for basic tasks. To be honest I am pretty stressed about it and have stepped up my hand physical therapy, although the exercises are really hard for me. I've spoken with my neurologist about it and I'm already doing everything possible to fight this disease. I have recently been looking into stem cell research and may need to stretch to make that happen sooner than later.
Wish me luck, and hopefully my next update will be only good news.
Another update worth posting. So with this new drug I'm on, I'm supposed to stop getting worse. And since my last post, I still haven't gotten any worse, Which is GREAT. As you know my left side is unaffected and its all the right side of my body where I've lost the ability to use my muscles to their full potential.
The drug does not guarantee any gained back muscle recovery (based on the clinical trials), but I am happy to announce that I am definitely getting stronger. It is a subtle difference, but over the past couple of weeks, I have noticed a better ability to flex my right pectoral and right bicep/tricep, This basically means the muscles are becoming more responsive to the nerves that are trying to utilize them.
For the last 2 years I have consistently gone to the gym 4/5 days a week, and slowly have had to decrease the weights that I use in my work-outs. Well I am finally able to increase that weight and am seeing better response from my right side.
Please note: These noticed changes are very small, but its a step in the right direction which is wonderful.
My new medicine Ocrevus has stopped me from getting worse, but my intense auto-immune diet, constant work-out regimen, weekly Physical Therapy, 28 daily vitamins, and never wavering drive is what I credit for this recent victory.
I've attached an image of my right and left bicep from a few months back so you can really see the difference in each side of my body. These photos were taken at the same exact time.
With this disease, I normally get slightly worse every 3-4 weeks. Its hard to be certain, but I don't believe I've gotten worse in the last 2-3 months, which is awesome and means I've managed to halt the disease.
I have a crazy regimen of:
28 vitamins a day
Working out 4 times a week
Neuro-Certified Physical Therapist
My Walk Aide
My intense Auto-immune diet
My new drug Ocrevus
But the important thing is something is working and it feels great to finally have taken hold over this thing, even if its minor.
As for the Walk Aide, it still works great and I wear it daily. My nerves are actually starting to retrain and I am walking better without it, which I try to do once a week.
All good news. Stay tuned for any future progress.
So happy we were able to help you a little. My, you must be a well liked guy! Here is to hiking and more world travels!
Hi Kevin, I enjoyed seeing all your adventures in Europe, I'm so glad you did it while you still can. I've heard some remarkable things with stem cell, hopefully that will happen for you! God Bless, Love you, Aunt Raquel
awesome man, when can we get a hike in!?
Woo hoo Kevin!!! I'm so happy for you!