Use it or lose it, a piece of wisdom an ms specialist once told me in a Queenland ms Society conference long ago. Of course I did not listen and I no longer can run, barely drive a car and worst of all, being a bloke (guy) there are certain things that I could do that are now just memories. I will leave that to your imagination and your thoughts are probably correct.
If “YOU” have a skill that “YOU” want to keep. Practise practise practise and do not stop. Our brains are very smart lumps of fat. That is what they are, different to gut fat but still technically fat I am pretty sure. If “YOU” do not keep your neural path ways open and build new ones. Abilities that “YOU” once had “YOU” will lose. When I was a child I had an accident and severally damaged my left arm. So much so that doctors were going to remove it. My Mother said no and I was put back together. A special brace was made that made me exercise my arm nerve and slowly rebuild the connection. I grew up to serve in the Air force, shoot guns and type. Eventually to fly aircraft. I practised struggled and persevered all that time. Unless I show anybody and tell them the story they would not know that I was once nearly armless.
Today unless I stick my finger very far down my throat a person would never know that I had had three surgeries on my facial nerves. I can mostly swallow liquid with out choking. Okay, I can barely taste but I know what things taste like so I get by. Point is we have a progressive chronically disabling condition. Things get worse and do not come back one hundred percent. If “YOU” want any ability to stay “YOU” have to train yourself and keep doing that until they bury “YOU” I understand that “YOU” maybe under the illusion that just taking a Disease Modifying Therapy (DMT) will get “YOU” through, but sorry it will NOT. This illness takes work and determination. “YOU” are not like people with ms twenty thirty or forty years ago. “YOU” have DMT, not a cure but a help. “YOU” have mine and others experience. There is absolutely no need to make the dumb mistakes that we did. Learn from us ask questions and have the better life that some of us wish we had.
use what “YOU” have. Train your body to do what “YOU” want as much as “YOU” can. As a baby how long did it take “YOU” to walk, run, talk? Think about that and “YOU" might like to get started. This is a very long journey that we are all on. Lifelong as a matter of fact as there is no cure, just treatments.
Royce
So use what you do have and keep at it
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RoyceNewton
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What a great come back you did! Lesson for all of us. One I will take to heart as I have neglected my exercise and am paying for it. Thank you for sharing
You are exactly right, Royce. That is exactly what my ex husband and I designed and I did so that my walking and vision were not so badly impaired when this all started for me. I was 26 and for years as I became increasingly this that or the other, we figured out another way to do this that or the other. I swear I think it is why my particular case did not progress as fast as most might have. I still do it...but now it is SR MS and nothing seems to be working and I am getting sicker with other stuff more often and for longer.
I did learn some new information this past week. There is much out there about this the medulla oblongata. This is the best summary in people language.
If you look up the word medulla oblongata and read about what it does and where it does it and keep that in mind, then, know, in addition, that the medulla is myelinated just like our nerves everywhere, then we might get a better understanding of why some of us have increasingly bad signs and symptoms but NO new white matter plaques. I would bet dollars to doughnuts most of our older neurologists don't know this either. Knowing it might make a difference in our care.
I guess the worst part of the new information is that it is not visible at this time by MRI. It is too deep in the middle of the brain's bottom.
Hugs and appreciation for your comments, nemaste, Bodega39.
Thank you. I am grateful you spoke up. You can find it at Thoughtco.com...so go there (I.e. thoughtco.com). When there, follow "Biology" from the first screen to the second...keep following "Biology" to the third screen, I think...to wherever you see a search box in the upper right hand corner. Type in "Medulla oblongata" and when that screen pulls up you will see articles on the medulla. so, then, ""Overview of the Medulla Oblongata" will appear. Click on it. and you are there!
Searching the net further I found articles on its meyelination and how two types of cells actually participate in myelin formation. It is hard to quit reading when I get on a tear.
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Could use a few prayers
Urgency to use the restroom
I'm so stressed, I'm gonna lose it!
ASo I Lose Another Good Doctor
