Don't ever give up...

[bentmsrider]

Just want to encourage everyone who is dealing with MS...either has it or loves someone who has it.

I was diagnosed in 1999 at the age of 40. I thought my life was over. couldn't walk, think right, or even see straight. But I got on a therapy after a couple of years (please don't wait 2 years like I did) and then my third therapy in 2007 when I started Tysabri.

Just to testify and not to brag...as some have accused me of...this past weekend I rode my P-38 recumbent bicycle 80 miles in the Duncan Dehydrator. Then rode 40 miles Sunday in the Wichita Mountains Wildlife Refuge. And believe me when I say I don't take it for granted. Each day that I function at a high level is a gift. And as all MS folk know...you cannot assume that tomorrow will be the same.

I do everything I can to do my part in staying healthy. I take a few vitamins, eat moderately, don't drink or smoke, try to get a good amount of sleep, excersise as much as my body will allow on a given day, and stay on my therapy religiously.

A few years ago I let go of my fear of tomorrow. (I was holding my todays hostage to the thought of MS raging on me tomorrow.) Freedom came with that choice/decision. The freedom to live today for today with no strings attached.

I still plan for the future, as we all should, but I don't let the 'what ifs' dictate my view or thoughts. Most days anyway. I do have my dark days...or even weeks and a few times months...but that's not who I am. That's simply a hellhole I slip into from time to time.

Our value is not derived from what we can or can't do...how we feel...how we look...or even how we deal with this faceless beast we call MS. Our value is in who we are. It doesn't matter how disrespected we are by others if we respect ourself. It doesn't matter how respected we are by others if we disrespect ourselves.

I work at trying to seize my future as much as it lies with me. One of my goals is to do something today that I didn't/couldn't do yesterday. I often fail, but seldom do I fail because I don't try.

I cried like a baby the day I realized I could walk and read at the same time without falling over. considered a small thing by most...it was a gigantic milestone for me.

once I could walk again...It took me years to re-learn how to function in society. Sensory overload is still a daily battle I enter into. If things start to overwhelm me I simply walk away for a bit. Maybe I re-engage....maybe I don't....but I refuse to let MS win and/or define who I am.

My advice...stay on your therapy if it's working. If it's not...there is one out there that will work for you. About a dozen now and more on the way...

And don't ever give up... Fight Fight Fight

[Tomjadg]

You know, I like to see those who have had success and have a positive attitude, but some of us have had no success and have pretty much given up.

I was diagnosed 6 years ago, and it has been a steady downhill trip since. I have tried Rebif (no improvement after 6 months) Ampyra (no change after 3 months of twice a day pills), and my second round of Ty. My first round seemed to stabilize my issues, but we decided to stop because I was a high positive. That was a big mistake. I got worse quickly, so we decided to go back on Ty with a brain MRI before each infusion every eight weeks.

I can barely walk with a walker now. My balance is terrible, my feet and legs are numb, as is my right hand. I can't write or sign my name any longer. Using a knife and fork is very difficult.

Yes, I have given up after 6 years of this miserable disease 24/7. Good for you, but no more fight for me.

[lindaincolorado]

Hi bentmsrider,
I am very happy for you

My story is not as miraculous as yours but, it is a positive story. I am grateful to G-d, Tysabri and a couple of ms specialists! I was dx in 1988, in remission, no meds for 13 1/2 years-healing prayer/meditation. I stopped ms reared it's ugly head about 1 yr later went on Copaxone for 2 1/2 years and then in 2006 went on Tysabri and found my G-d send

I have good QOL, stamina, good MRIs and my ms halted 9 1/2 years ago

Keep up the good life !

[Carolinemf]

I have always felt incredibly fortunate(and a little guilty) that though I have had MS and had to cope with some severe attaches over the last 30+ years I was able to lead a very productive and physical life. To such an extent that most of the time when I was fatigued or short circuiting if others noticed it was attributed to overwork or lack of sleep etc.
Until fairly recently only my husband and I knew of my condition.

I do believe that the physical nature of a lot of the work I did helped keep me fit. As the boss I could have avoided this and stayed in the office but pushed myself constantly because I got a buzz out of out-working others and knowing what I could do. Although the pain this caused could be dreadful and lack of enjoyment in life was definitely a down side it was also satisfying.

I have released the reins in the last couple years and am struggling more with progression,particularly with brain atrophy and cognition. Weakness , balance etc have also worsened and i am asking for help more and more- this is very hard for a control freak to do!

While camping with my family recently (5 sons, over 6ft) I managed to split some logs (4) for the fire. It felt soooo good!!! Could hardly lift the axe and in pain for 2 days but felt alive and NOT USELESS!

My husband has always said I'm just to darn stubborn to let anything beat me.

In reality I know it's probably just dumb luck that I have only had to cope with RRMS rather than the more severe presentations like others on here or my Aunt and Uncle who had passed away from MS in their early 40's.

But I do think a positive -looking forward- get up and go attitude helps with most things too (not just MS)
So if riding a bike out in the country side is what rocks ya boat then
PEDDLE AWAY.http://www.msworld.org/forum/images/icons/icon7.pngAll the best.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **