When Life with MS Gets Heavy

[ActiveMSers]

My newest blog post isn't for newbies. Or for those who don’t want to be reminded about what multiple sclerosis can do to our bodies. Or for those who want a typical Dave happy-go-lucky essay that will make you smile and escape and maybe make you laugh out loud. No, it’s not that. (I can hear the hissing disappointment now.) But after I read a reply to a post I made on Facebook the other day, what I am writing needs to be said. Sorry.

http://activemsers.blogspot.com/2018...ets-heavy.html

[garyp]

My soap box....

Very well stated Dave. It needs to be said.

I am unfortunately one of those who tell MSers who are considering which treatment option to take (and are hesitating because of side effects) that it is indeed a choose your poison moment. But I also say that choosing not to go on medication is one of those poisons...and that poison is worse than the other poisons. You have to balance your chances of becoming significantly disabled/losing much function (high) against the chances of you being hit with a severe side effect (low).

After my now almost 23 years with MS, I recently came to a conclusion that there is a "magic pill". That magic pill is each of us as individuals. You are the one that must decide to go on medication - and stick to it religiously, even if that means a daily injection or the shadow of a serious side effect. You must also be the person who decides to go on a healthy diet. You must also be the one to decide to and then motivate yourself to exercise regularly...find a way, no matter your situation to stay in motion. Gardening is exercise...I did some gardening today, it is a workout

I am under no illusion that doing these three things (medication, diet, exercise) guarantees a good physical outcome. I am though guaranteeing that your outcome will be better than it would be if you did not do those 3 things. Dave is the role model example of that, sorry to bring you into my post Dave

I was diagnosed in 1995. Disease-modifying therapies only became available a couple of years before my time. The generation before mine had no option. Every experienced neurologist will tell you that the availability of disease-modifying therapies has favorably shifted the clinical picture. People are doing better, thanks to disease-modifying therapies. I am proof of that - last year I ran Marathon, did the Pikes Peak Ascent (half marathon up to the summit of Pikes Peak).

Will get off my soapbox now.

[cl3me]

A good reality check. Harsh sometimes needed.

“it’s going to be the disease that wreaks the most havoc”

MS falls in the category of things “out of our control”, human nature we put all our hope in the things in our control - medication, diet, alternative therapies - and when the disease marches on it’s easy to blame these things as failures than accept the harsh reality that MS rumbles-on in spite of best efforts, MS is a dirty fighter, and all of the things in our control can only influence the course, not halt it or cure it. For me DMT, diet, and exercise are the aresenal I use to hold MS at bay and claw back as much quality of life back from MS as I can, but under no illusion that my MS is cured or in a true full remission, at best I aim for periods of NEDA (no evidence of disease activity - no relapses or new lesions on MRI), but the ms monster always rears it’s ugly head again - 4 yrs NEDA is my record ha! Dx 2003. EDSS 3.5. Now on third DMT and aiming to beat that record....

I continue to work (with accommodations), ride my horse, cycling, and kayaking.

Harsh reality. Fight on!

[AMFADVENTURES]

One of the things I appreciate about this Web site Dave, is the straight shooting honesty where it's needed, PC Police be damned, along with all of the factual information of course.

I was a late comer on the DMT scene myself. I managed my MS with diet and exercise for roughly 15 years. But, thanks largely to this Web site and my own research effort, when my MS did begin a relentless progression, I felt familiar enough with various therapies to seek one out.

Finding a neurologist who would help me was another story. I went through two neuros, neither of which offered more than symptomatic relief, before I found a third to assist me with a therapy. I discovered that there are a number of non MS specialist neuro's, who may not be familiar with some of the recent therapies available for people with MS, and therefore are not comfortable discussing the relevance and safety of them with their clients.

The upshot of this is that, ultimately, we need to take charge of our own health care. Fortunately there is a lot of assistance available to us, from the choice of our medical team to the plethora of good, bad, and irrelevant information out there today. We need to take our responsibility seriously though, and make our choices in our own, well considered, best interest. And a little slap upside the head to get us moving in a constructive direction, can be a good thing towards that end.

[ActiveMSers]

Thanks guys, I try to shoot it straight. I just want to make sure people have the facts before making a decision that could have lifetime consequences.