Optimism has its downsides !
Another week of some negatives, another good friend gone too soon ( C) and that makes more than I care to have contacts in my list who will never be able to reply to messages. It’s a rather hard dose of reality to swallow.
I procrastinated a little too long this weekend ( I used to procrastinate but now …I just don’t know) so the Saturday Reflection is more of a Monday Mope ! It’s been a hospital run – tea with the Head Neurologist and the normal run of Q&A. I beat him to the “you’re looking great , Been on holiday , Nice tan ….”so that left the “How are you” , before he got called away. We reflected on the array of MRI’s on file , quite comprehensive now but ….the damage in the brain seems to be static despite the continual degradation of motor control, coordination and mobility.
Disease modifying treatments (DMT’s) only work to slow this down. For me that means there is no medication ( currently) that would offer any respite.
That raises new concerns , the continual loss of mobility is most likely linked to spinal nerve damage. The last MRI done on the spinal lesions was in 2014 and never repeated. The reason is statistics.
Statistically “most” people show degradation in the brain (85%) so …the 15 % that show degradation in the spine fall through the cracks until it can be ascertained that the activity in the brain is static. So 2019 that has now been evaluated , the erosion in the brain is stable and so no medication should be prescribed.
More data is needed- a new MRI on the spine needs to be done to verify that this is the offending damage. New problem – either it is present or it isn’t but if it is …no medication is available on the market that can relieve that and secondly there is no way to gauge the progression other that the original 2014 scan. I could wax on about how many times I advised them that the back pain was getting more and more constant and that mobility was failing – alas a little too late. I guess seeing me and my speedy walking ring was all it took for the penny to drop. I could have done that a few years ago …my bad.
Positive reflections , the neurologist is 100% supportive of my “new” regime of intermittent ( and longer term) fasting. Seems there is logic that the body focusses all its energy on replacing damaged mitochondria and stem cells when there is no available energy. I will persevere.
So ,I can look forward to some more alone time in the MRI in the very near future !
There is still some light at the end of the tunnel, new decisions on medication for MS patients in the NL will be made in September, so if my conditions worsens ( brain related only) there may be something for it .
I had been saving these little Seth gems ..seems like the right time.
Optimists are always a little disappointed.
If you live with possibility, the idea that things can get better, that with consistent generous effort you can make a contribution, then you also end up feeling just a bit let down that it didn’t happen this time.
The alternative is to insist on limits, to be a pessimist, to simply play it as written and only do your job, expecting the worst.
Sure, you could probably avoid a little disappointment that way, but how could it be worth the journey? What’s the point of all this risk, effort and connection if we’re not going to use it in search of better?
Very true and worth thinking about the effort we all put into what we do ( or don’t)
The second is my usual…my philosophy of life also contained in a Seth snippet.
Discipline, rigor, patience, self-control, dignity, respect, knowledge, curiosity, wisdom, ethics, honour, empathy, resilience, honesty, long-term, possibility, bravery, kindness and awareness.
All of these are real skills, soft skills, learnable skills.
But if they’re skills, that means that they are decisions. A choice we get to make. Even if it’s not easy or satisfying in the short term.
These skills are in short supply sometimes, which makes them even more valuable.
Stormy weather ahead for sure but..nothing ventured , nothing gained
I hope the shock of returning to work ( if you are) is mangeable. .tracks