Kickin' MS with HSCT

Well, another month has past and improvements are still happening. With that being said, I’d like to emphasize the importance of physical exercise in the recovery process. I would not be seeing the improvements without putting the time in at the gym, or walking. I do something physical every day. At the beginning that might have been just walking to the mail box, with help from my husband to get down the two front steps. Then walking a little more, adding more very, very slowly. The key is to add more very, very slowly, if you over do it you will pay the price. I’ve pushed too hard and it took me 2-3 days to recover, no fun. As you get stronger it’s so easy to overdo it. You start feeling normal and you run one too many errands, or walk just a little too far. Everyone going through recovery will have a story. I remember the first time I went to the store, too soon by the way, I went with my mother and we walked in the house and walked straight to bed. She had to put away the groceries and I think I was asleep as soon as my head hit the pillow.

I started Physical Therapy 1 month after returning home, I had the GP prescribe that. After 8 weeks of PT, I started going to my local gym. I have to be super careful with germs, so I clean everything off before I touch it and then when I’m done. Then wash my hands a couple of times during the workout. I had been working out for most of my adult life, so I didn’t get a personal trainer, but if you haven’t I strongly suggest using one to get you started. Explain what you’ve been through, so they take it slow, you’re not the normal person just trying to get into shape.

So here is where I am as of today. On Saturday I rode my bike for the first time since HSCT, only 2 miles, but rode. The Sunday before I left for Moscow I rode 6.5 miles, so I have a ways to go to get there again. I held off riding for so long because of how weak I was after being in the hospital and balance issues. My balance has greatly improved, so I thought I’d give it a go.

Back in the fall I set a goal to walk round trip across the Big Damn Bridge by the end of April. It spans across the Arkansas River and it’s the longest non-vehicle bridge in the US. It has a very long grade to get to the top, with beautiful views all along the way. Round trip is 1.83 miles. Sunday, I decided it was time and the day was beautiful. I’m proud to say I made it!!! So, thanks to HSCT and a lot of hard work I’m reaching these goals and setting new ones.

If you are reading my blog for the first time, you may want to know I’m PPMS, so I never dreamed I’d actually have any improvements.
Remember no one wants to get well as much as you do! Keep fighting.
VW

Well another month has flown by and I’ve now had my 6 month follow up Neurologist appointment and MRIs, so thought I’d update you.

First, I met with the Neuro at UAMS a couple of weeks ago, this was the first time to see him since I moved to this area just before leaving for Russia. With that being said, he doesn’t really know what my condition was before other than notes form my former Neuro and my before and after videos. Well…I first met with the intern, and he did all the strength test and walking test, and made the comment that my strength was that of someone without MS. 🙂 I still have hyper active reflexes, very obvious, since I almost kicked him in the face. Then he went and spoke to the head Neuro and he came to check me out. He was very interested in my story and wanted information on Dr. Fedorenko and Dr. Burt, which I gladly provided. I then showed him my walking videos and he was amazed. He said to come back in 6 months so we can celebrate more of my improvements. I told him I hope to be walking 2 miles by that time, and he said, he had no doubts that I would. So, that went very well.

Second, I had my MRIs on Friday, so for 2.5 hours in the tube with my head locked down I thought I would die. I’m claustrophobic, so this really is not fun, at all. I had to have him get me out of there twice. Anyway, I did finish and don’t want to do that for a very long time. It appears that nothing has changed since Russia, I still have the 3 very small non-enhancing lesions on my spinal cord, and that’s it. So, nothing new, is good news to me.

Lastly, we’ve been getting the word out about HSCT. I was interviewed on Good Morning Arkansas yesterday morning for MS Awareness Month. Brooke and Diana were interviewed up in PA yesterday, and the segment Kristy Cruise did for 60 Minutes Australia aired a few weeks ago. They were filming that while she was in Russia with me. If you want more, email the stations and lets shake things up.

Here is my Good Morning Arkansas interview, aired March 31, 2014.

Here is the interview of Brooke Slick and Diana Rees on We Are Central PA.com
http://www.wearecentralpa.com/story/d/story/hello-russia-bye-bye-ms/10386/T_T7nhMgW0OxWIOle5nwhw

This is Kristy Cruise on 60 Minutes Australia
http://sixtyminutes.ninemsn.com.au/8810871/Russian-Roulette-medical-treatment

Remember no one wants you to be better as much as you do!!
VW