I’ve been corresponding ( FaceBook, it has it’s uses) with a lady who is in Russia right now, undergoing intensive physiotherapy and rehabilitation after AHSCT at a specialised centre. She is vastly more impacted than I ever was, but is showing true courage and determination in this long journey, through an exceptionally hard year. I’ve added some of her photographs from Moscow below, as they capture a bleak beauty, which aligns with the bleak, hard, but rewarding journey we are undertaking. It forces you to take time to see the beauty around you and relish the joy of small moments.
I guess it’s a reminder, but this treatment stops progression for 75-85% of people. What is doesn’t do is to return most people to their abilities prior to the onset of MS, as the damage to the myelin sheath is still present. For a few people, who are in a very active phase of inflammation and attack, the treatment stops their deterioration completely. For most of us, and the lady in Russia right now, the treatment is the start of seemingly endless physiotherapy, rehabilitation and exercises all aimed at building new neural pathways to send the signals. wasted, weak part of our body we haven’t used for months, or years. Where we reach, in 1 or 3 or 5 years time, is so dependant on the person, their body, the damage already done, that no-one can make any guarantees.
Research is ongoing for techniques to rebuild the myelin sheath, however that’s all at a very preliminary stage at this point and the scarring caused by prior lesions still exists for me and everyone else who has been through AHSCT.
This image shows the treatment, but really doesn’t show the work needed, Step 7, after returning home or, in Yulia’s use, staying in Russia for months away from her family as she is too weak to return to a COVID-ravaged America. I was strong enough to return from Russia to spring in Western Australia years before the world turned crazy in 2020.
One of the totally unexpected benefits of going to Russia, and Facebook, has been the people I have met and stayed in touch with since Russia. A Russian emigre in America, an Irish lady now in Dubai, a Swiss lady living on the shores of Lake Lausanne, an American lady living in Michigan who hates cold weather, a Bulgarian man … the friends and shared experience have been priceless.
Christmas 2020. How could I have ever anticipated
- bushfires devastating the eastern states of Australia, with irreparable damage to the wildlife
- a world wide pandemic halting life for so many, in so many ways
- redundancy from the job I thought I’d retire from, and Andy’s redundancy back in February
- the tragic death of my beautiful, gentle graduate with whom I shared so many nerdy mechanical engineering moments while sharing coffee and food
- kayaking 6km to coffee on the river bank at a cafe. Seeing dolphins on the river !
- walking 17,000 stops in one day, and making Andy keep walking around the block on a rainy cold Tasmanian evening to thoroughly smash my record since well before AHSCT
- swimming 20 lengths of a 50m pool without problem
- actually enjoying spending time at home way more that I’d anticipated. I have to get back to work to keep my brain active, but I am enjoying this time
The numbers aren’t important, other than tracking a slow, steady improvement when previous to AHSCT I was heading towards a wheelchair. However, as important to me as the physical improvements has been the reminder to see joy in small blessings, particularly in this year of COVID, and the reminder that I am not alone in this journey.
Dinner with friends, just before Christmas. My local beach, my favourite place amongst many.