Please disregard the previous version of this post that you may have received earlier today. This is the post in its entirety.
Over a month in the making, this post focuses mainly on what I’ve been doing in an effort to follow through with Dr. Fedorenko’s post-transplant recommendations. He prescribes three main requirements for a successful recovery. They are Good Attitude, Good Food and Physical Therapy. In addition, I will be discussing the improvements that I have seen since returning home. Some of them are pretty cool!!
Well, I’ve always had a good attitude, and when you suddenly find yourself not having to use a trekking pole after three+ years of relying heavily upon it to navigate in public, your attitude certainly gets a little boost. That’s right. Since my last post, I am no longer dependent upon using that pole (nicknamed Tiff). I do still wear a foot brace for the foot drop, but, it is quickly becoming more of a hindrance than helpful. I’m not sure exactly what happened, but after living with this miracle for over month, I have come to the conclusion that it has something to do with my brain being able to more quickly process what I’m seeing as I’m walking and my legs now receiving the messages that were previously prohibited by damage from MS. Add to that the fact that my balance has improved by at least 50% and I can’t help but have a good attitude. The portion of my balance that continues to need work is the part that requires both feet to be working in unison to provide a steady gait. My brain is ready to hit the trail, cut my right foot is hesitant to do so, but it’s taking baby steps to get me where I’m going. That leads me to my next post-transplant recommendation…Physcial Therapy. Don’t worry, I didn’t forget about the Food.
This picture evidences another one of the miracles that has happened since my HSCT, If you’ll notice, the right foot with the electrodes connected to it is flipped up, whereas the left foot is relaxed. Why so miraculous? Last October, after six weeks of this same stimulation treatment, this foot was completely limp. No response at all. There’s no question in my mind that the HSCT is responsible for that new foot-to-brain connection. That offers great hope for potential recovery of my right foot drop which was the reason for all of my past falls. Now, we just need to strengthen and teach it how to walk all over again. In addition to stimulation therapy, my therapists are working on balance, and stretching and strengthening of my muscles that have been dormant for so long. Something else that continues to improve is my ability to navigate steps. Instead of two-stepping up the stairs as I have for four years, I am going up one step after another with alternate feet. It may seem like a small feat, but it is a huge victory for me. I’ll be honest…the physical therapy is much more difficult for me than the actual HSCT was. After four weeks of therapy, I am still in the “very sore” stage. Take a look at a few of the sometimes grueling, yet, sometimes comical exercises that I endure. These pics are all clickable for a closer view and explanation of what’s going on.
As most people do after they’ve been released from a lengthy hospital stay, especially when it’s in another country, you do a week or two of eating everything you’ve been unable to eat while hospitalized. That was about it. I’m trying my best to eat fresh fruits and vegetables and cut the fat off of all of the meats that I cook. Yes, I’ll have the occasional small ice cream cone and I will not give up my fountain Coke, but that’s all of the splurging I intend to do. I’m really not a foodie. I am well aware of the trepidation about the food for others who are having their HSCT in Moscow. Trust me, you’re going to be way to preoccupied to worry about food.
An especially pleasant improvement that I think I had for weeks and didn’t even notice it, was my MS Hug disappearing. The MS Hug is a sometimes very painful muscle spasm that wraps around your ribcage from front to back. I had it for about 5 years and sometimes the squeezing sensation would be so strong that you could barely take a breath. No longer having it allows me to stand up straighter, which assists in my ability to walk. I’ve had one or two twinges of it within the past month which were just enough to remind me how glad I am that it’s gone, but they were temporary and hopefully, will not return.
In the last two weeks, the numbness on the ends of my fingertips has started to decrease. They are definitely not 100% yet, but I would say I have seen about a 30% improvement. Instead of my hands feeling like I’m wearing winter gloves, they feel like I’m wearing thin, plastic gloves. On average, I’m expected to see a majority of the improvement in my symptoms over the next two years, so, I’m very pleased to see these small changes early on in my recovery.
Two weeks ago I had the pleasure of meeting with my hematologist/oncologist in Pittsburgh. He was pleasantly surprised that I was no longer using my pole and was very pleased with my bloodwork results…all were normal. I will continue to see him every 3 months and he is arranging for my 3 doses of chemotherapy (Rituximab, aka Rituxan) that I will be receiving over the next 9 months. For those of you who may have missed the chemo story earlier on, I will be taking those based upon the fact that I had 10 enhancing lesions upon my arrival in Moscow and that my MS had previously failed to respond to 4 MS drugs. My MS is a very stubborn one and the doctor just wants to make sure that it doesn’t get any crazy ideas about making any appearances in the future. These 3 extra doses are not mandatory, however, why would I come this far and not take these 3 extra infusions for safety’s sake? Bring it on. I am happy to report that my hair is making a comeback (see pic below). Within the last 3 weeks it has really taken off. Yes, I still look like a refugee and I will be covering it with scarves and hats for a couple months, but, I’m happy to have it back. I do believe it is going to be the same color, but not certain of the texture…please be straight, please be straight, please be straight. ha ha
As always, I would like to thank everyone for following along and continuing to support me during this recovery period. I have a LONG way to go. I am now doing my best to support my fellow MSrs who are heading off to various facilities around the world for their HSCT. They all amaze me.
A VERY SPECIAL THANK YOU to…Presque Isle Printing www.presqueisleprinting.com and their artist, Franklin O’Neal, for capturing my current state of mind in a caricature. I love it!! And, to the staff at HealthSouth Rehabilitation’s Duncansville facility for tolerating my giggling. You’re the best!!