October 21, 2014 – Home for 3 monthsPosted: October 22, 2014
Lucy & Desi are at the beach with me and Adam. We love having them back. They are truly therapy dogs. They are SO much fun to have around and love the beach as much as we do! They are used to sleeping in my bed, but I’m following the ‘No dogs in the bed after HSCT’ rules. The pups have been fine with it much to my surprise. Lucy visits and leaves and Desi found a perfect spot under my bed to sleep.
Sweet Little Lucy knows she and Desi are an important part of my therapy!
I’ve been going to physical therapy for two months. My strength, balance and mobility have been improving. I had a major setback that was not related to the typical “roller coaster of recovery.” When I did standing hamstring curls for the first time post HSCT at PT, my calves and hamstrings went into a prolonged spasm for over two weeks. This made my foot drop worse and made walking much more challenging. It was a huge setback for me and I was really upset. My friends and family kept reminding me that I was still doing much better than before HSCT and I appreciated their honesty and encouragement. It’s difficult for me to stay positive all the time.
It gets better! I am 100% sure that the treatment was successful for me and confident that the progression of my PPMS has been halted!!! I was hesitant to make a public announcement until I was sure. There are so many things I can do now, that I have not been able to do for a long time. It makes me want to spread the word even more than before. Yes, HSCT works for young people with Relapsing Remitting MS, AND it also works for much older, much more disabled Primary Progressive MS patients!!! It is unfortunate that HSCT is only offered for PPMS patients in a few medically progressive countries. Thank goodness for Moscow and Israel!
I still walk mostly with a rollator, but have begun using a tru-motion cane when I feel up to it. I have even attempted walking on my own outside the house! A few weeks ago, there was a high tide from a huge storm that flattened out the sand. Even though my foot drop was problematic, I decided to see how I’d do walking on the sand without assistance. I walked with Desi on the leash and Lucy was having fun rolling in the sand behind me. Since then, I have started walking on the road in front of our house. The first time I walked unassisted on a hard surface was definitely more of a mental challenge than walking on the sand. In my mind, falling down on sand is a whole lot more forgiving than falling on gravel. I’ve NOT fallen since a month before I left for Moscow. As you can see in the video below, I wobbled from side to side on the sand and had to really concentrate on lifting my feet, but I did it!
There have been other positive changes as well. I used to not be able to stand for any length of time before HSCT. After a few minutes, I would need to sit and rest. Now, I have no problem standing for a half hour or more. I take a 20 minute walk most days. My stride has improved and I’m using less assistance, but I still get fatigued after about 20 minutes. On Saturday, I just used the cane and not the rollator for my walk. On Sunday, I tried walking with no assistance up and down my street. I didn’t want to be too far from my house in case I got too fatigued. I had to stay focused on the road in front of me and not turn my head to talk to my neighbors. I know they understood and were happy to see me trying something new : ) Today, I walked both pups. Previously, I’ve only done it with my rollator. I’ve started to use my spin bicycle too. I’m up to a half hour on the spin bike, but with very little resistance. I’m going for long slow duration (LSD) which should help improve my cardio.
These are videos of me walking today without assistance! I think it’s a much smoother walk than before. I take my recovery day by day. Tomorrow, I might need the rollator or the cane, but today was a good day : )
I really enjoyed my nieces wedding in New Jersey! One of my first questions for Dr. Fedorenko after he said I would definitely benefit from HSCT…Can I go a wedding in 3 months and NOT wear a mask? He told me that a mask was not necessary!!! I loved every minute of the whole weekend. I had not seen any of my relatives since I’d been home from Moscow. I also got to meet so many new people! Happy, Happy, Joy, Joy!!!
Michael Dote’s American Gothic photo of Hilary and Annie
Fred and his lovely bride
I’ll be at the beach in Delaware for another month or so. I’m staying until I run out of physical therapy visits. Then, I’ll rejoin my family in Maryland. As many of you know, my family moved while I was in Moscow. In my “Pollyanna” like mind, I thought my family would be able to handle the move, arranging the kitchen and furniture on their own. It was not the case. I went home for a few days to see what needed to be done and ended up staying for 15 days. There was LOTS to be done. I had help from many friends and even some family members. ***In case you have not heard of “Pollyanna”, it was a 1913 best selling book by Eleanor H. Porter about an unrealistically positive orphan. I read the book and saw the 1960’s Disney movie with Hayley Mills many times. For years, my son has heard me refer to people as Pollyannas but never understood the reference. He recently told me that NO ONE ever knows what I am referring to and have never heard of Pollyanna. Shocking indeed : )
Hayley Mills won an Oscar for her performance!
They even had it with Russian subtitles! Элинор Портер “Поллианна”