Endless hope of a cure can be a very dan... - My MSAA Community

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Endless hope of a cure can be a very dangerous things

RoyceNewton profile image
8 Replies

In the scheme of things, most of us want a cure. Cure for Relapsing-Remitting ms (RRms), a cure for all sorts of things, "YOU" are very early to this condition and your pleas are normal. They will carry on for a very long time. Very sadly I will suggest to "YOU" that your hope is forlorn. This is a chronic lifelong condition. I have been waiting twenty years for my cure and it has not arrived yet. I check the mail several times daily but it is never there.

NO, I am not ridiculing "YOU" or saying that your fears and wants are unreasonable. I am merely saying that perhaps "YOU" would be better served if "YOU" put your energy into learning more about this condition and about your bodies reactions to it.

At first weep for what"YOU" fear "YOU" may have lost. I am pretty sure that I did, and maybe sometimes still do, even after all this time. Strangely when I am brutally honest with myself. I can find little positives. A few things really good, mostly family and several that can only be described as far from positive.

ms is a condition that really does not have very many answers. Lots of people like to tell "YOU" the secret reason why and what "YOU" have to spend to find that cure that"YOU" are looking for. It is okay to listen, and if "YOU" have access to lots of money and do not mind strange people doing strange things to your body, go for it. After all, it is your life, your money and your body. I will never tell "YOU" or anybody else not to follow a hope or a dream if "YOU" can.

All I will ever suggest is to think, twice, three times and then again. ms is sneaky, diabolical, tricksy, learn everything that "YOU" can. Find the medicines that have helped people and their techniques. Some things like your Disease-Modifying Therapy (DMT) are better being done faster rather than slower. Learning that "YOU" can do sit-ups in bed is perhaps a later thing. Learn, learn, learn, RRms today is a very doable disease. Weep a little but do not despair. "YOU" can "YOU" will "YOU" do RRms. The tools are out there, ask if "YOU are lost, I am sure somebody knows the answers that "YOU" are looking for.

Here is one. with trigeminal neuralgia, the drugs really are nothing eventually. Surgery will be your best option and even it has a shelf life. Diet, for ms really does not exist, though the Swank diet, the heart association guidelines are good. ms may not kill us but a stroke certainly might.

Study yourself and your body. Knowing its strengths and weaknesses will always serve "YOU" well. Accept others weaknesses and shrug off the looks or any fears "YOU" may have. Being afraid of "what ifs" are no way to live your next fifty plus years.

Wonder about a cure but do not pin your life upon it arriving anytime soon. Just as a fun thought, exactly how many illnesses have we as a species cured? My answer is none, and I am okay with that.

Be true to yourself, accept others failures and weaknesses. Fighting them only hurts "YOU" in the long run, "YOU" have a chronic condition. It is not all bad, just persevere slowly and calmy. This, my friend, is YOUR ms life and only yours.

Royce

Just living mine, a little different to "YOU"

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RoyceNewton
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8 Replies
carolek572 profile image
carolek572CommunityAmbassador

Hey RoyceNewton,

Yes, I too, would love a cure! More importantly, early detection would be awesome. I don't hold my breath for a cure anytime soon. I would rather focus on adapting and living my life despite ms!

Again, you offer a lot of food for thought, and I am beginning to use your posts as reflective.

Thank you for your thoughts on ms,

Stay Strong,

Carole ~ someone who always impatiently waits for your thoughtful posts ~ :-)

RoyceNewton profile image
RoyceNewton in reply tocarolek572

thank you very much

MrFixIt1959 profile image
MrFixIt1959

I see so many positives that I consider MS to be a blessing. Based on my research and understanding of our neurological system I'm not hoping for a cure, I'm very satisfied with delaying onset of additional disability. I was diagnosed in 1991 and told there were no treatments, go home and avoid stress. So my goal is to continually practice the things that I have difficulties with due to my MS. In 1992 I couldn't walk, tie my shoes, write my name, pick up a plastic or paper cup, drive (Maine took my driver's license) etc. Now I drive (autocross is my practice) walk up to a mile a day, write, ties shoes, even eat with chop sticks. Counting my pills (now over 200 a week) has resulted in the ability to even pick up a dime from the table or fix my glasses with those tiny screws. My kids were forced into early family responsibilities and have succeeded far beyond their parents even at an early age (and my wife and I are Mechanical Engineers)

RoyceNewton profile image
RoyceNewton in reply toMrFixIt1959

Yes I have had many positives as well

Juliew19673 profile image
Juliew19673

Thank you Royce! All ways food for thought - I love your post and how your mind works!!

RoyceNewton profile image
RoyceNewton

My mind works, that is so very nice to say, I always wondered if it did :-)

anaishunter profile image
anaishunter

I'm not hoping for a cure either but earlier, better, and simpler diagnostic combined with more effective DMT would be incredible progress.

RoyceNewton profile image
RoyceNewton in reply toanaishunter

Agreed on that one

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