Today is day +44!
I returned to physical therapy yesterday after a 2 month hiatus and the staff were amazed to see me walking without a walker or assistive device and one of the therapists said I had “pep in my step!” I was interested to learn what my assessment would show in comparison to my last one. My BERG score, which is a balance scale to determine fall risk, was 55 which is barely a fall risk! 41-56 is considered low fall risk. I was in the low to mid 40s when I was evaluated before I forget the exact number. What was also interesting is that when I started P/T in April my left leg was weaker but now it’s actually stronger! I was able to balance on my left leg for 12 seconds and my right leg for 7 seconds both of which I could not have done for more than a second before this transplant! Originally when I was first diagnosed in 2003 my right leg was weaker. It’s interesting because Dr. Burt’s nurse said the more recent stuff should clear up and it appears it has!
The vertigo is still an issue and I still have some cognitive issues but they are improving- I’m not repeating myself as often my nurse friend says. I’m also pretty tired and find myself taking naps in the afternoon. I also still have spasticity with spasms in my left leg but they are lessening. The chemo side effects are there…my skin is very dry and itchy on my face. I’ve lost more eyelashes and my eyebrows have thinned more and look like they’re getting ready to jump off but I’m okay with that. The hair on my head has started growing in a bit. None of the cosmetic stuff matters to me anymore. I’m just grateful to be getting better!
My labs are good and all in the normal range which means I’m allowed to swim! We have a pool here at my condo association so it’s considered private not public so it’s less risky. I’ve also been walking more! Last weekend I took an uber to Walgreens to pick up Rx and walked around the shops and walked home. I was tired but it felt good.
I have 2 more courses I just started toward my MHA and I’ve been spending some time working with the National MS Society to get them on board with HSCT. Tim Coetzee is the Chief Advocacy and Research Officer and he sounds like he’s getting on board. I was happy to see him participate in a webinar which I also dialed into at the last quarter. I look like a mess in my PJs last month but I figure it’s worth sharing because it does provide some good information. It’s amazing when I check out the analytics of this blog people from over a dozen countries are reading it!
Next steps….I’m now on biweekly labs and starting another medication, an antibiotic bactrim, tomorrow that’s 3x a week. I’ll call to schedule my 6 month follow-up appointment in a couple months. I’ll keep going with P/T as many sessions as my insurance will approve and work on getting stronger!
Thanks everyone for the love and support it means a lot to my family too that their friends have followed this journey!