I really enjoy writing, but sometimes someone else capture my thoughts and feelings so much better than I could write. I have no guilt about stealing their words and can justify it to myself as a form of admiration. Just to be clear, I only borrow from the public domain or after asking permission and cite the sources !
These words are from Selma Blair, who was diagnosed in October of 2018. She is on the same type of drugs I was on ( Disease Modifying drugs DMD), and is using a cane.
There is a truth with neurogedenerative brain disease. It is uncomfortable. It is a stadium of uncontrollable anxiety at times. Going out, being sociable holds a heavy price. My brain is on fire. I am freezing. We feel alone with it even though the loving support has been a god send and appreciated. People write me asking how I do it. I do my best. But I choke with the pain of what I have lost (riding) and what I dare hope for. and how challenging it is to walk around . But my smiles are genuine. This is ok. Life is an adventure with many shards of awakening.Selma Blair on Instagram
Take ‘riding’ and substitute skiing, kayaking, hiking, walking easily around music festivals. These activities are coming back; 3km slow walk around a beautiful Festival light show at King’s Park, a kayak to Chidley Point which is 3km round trip, shows at this year’s Arts Festival, swimming my 20 lengths way slower and with way more breaks, but that’s OK. Skiing will have to wait for a cold climate, not Fremantle !
I chose to undertake this treatment when my walking became seriously and, according to my neurologist, permanently impacted. It looked OK on a daily basis if the weather was cool, but when any stress was placed on me the walking became very awkward leading to lots of sore joints and muscles. There were other impacts as well, such as fatigue and ongoing brain fog. I’m sure there must be a better phrase, but ‘brain fog’ captures the slow cognitive decline and inability to handle even small changes. My deterioration was relatively minor in the scale of MS disability, but incrementally increasing with no sign of remission.
There’s a lot of debate in social media about Selma Blair, and why she hasn’t gone straight to this treatment, as money is clearly not an issue. However, I’ve talked about risk before, this is an intensely personal decision and very much unique to everyone’s risk tolerance. There’s also so much information it’s hard to absorb, and with the neurologists being so hesitant about the treatment the medical advice is not in favour currently.
I will advocate for this treatment and any MS warrior who is interested, but I will not persuade anyone to go for this treatment. I will push for them to make their own, educated decision and respect whatever that decision may be.